Peter's Blog

Bubbles and laughter

2010-06-03T07:09:00.002-05:00

Look ma, no trach!

2010-05-27T15:03:00.003-05:00

Today was the big day: the ENT doctor was going to see whether there was any scar tissue in Peter's trachea before they could remove the tracheostomy. Within 45 minutes he returned and announced the joyful news that they found only a slight narrowing of the trachea but no actual scar tissue. So they decided to remove the trach and close his trachea!

After another hour in the recovery unit, they brought Peter to us, completely awake and happy and with a bandage over his wound. He will now have to spend a night in the hospital for observation and can then come home with us tomorrow, without any artificial pieces in him. For another month he will have to continue sleeping on an alarm (for heart rate and oxygen saturation), but that is only as a precaution. Our nurses will now lose their job with us as of Monday; after 2 more days observation we'll be saying goodbye to our home health care nurses (thanks, ladies!).

We are grateful to God who has been very good to us. We can hardly believe anymore what Peter has come through.

Birthday boy

2010-05-19T22:34:00.004-05:00

One week ago Peter celebrated his first birthday. We are very, very thankful to have reached this milestone. How far he has come in a year!

Peter celebrated by eating a cupcake which he first squeezed through his fingers until it was reduced to crumbs. He also enjoyed visits from friends and playing with balloons.

It's only a week now until his bronchoscopy. Please pray that all would go well and that he can have his trach out soon.

The merry, merry month of May

2010-04-29T23:54:00.000-05:00

Hi everyone,

It looks like May is going to be action-packed. Peter's first birthday will be the 13th. Yes, it's been a year already! On the 29th, Michel's parents will be arriving from Holland for a visit. And two days earlier, on the 27th, Peter is scheduled for his bronchoscopy for possible decanulation!

Green light

2010-04-23T21:01:00.004-05:00

Hi everyone,

Good news from Peter's hospital appointment today. He first had a chest X-ray which showed that his lungs were the same or slightly better than last time (January, I think). He was then seen by the cardiologist and pulmonologist and both were pleased. (Cardiologist: Peter's heart sounded "perfect as usual"! Pulmonologist: Peter's "on the fast track".) In fact, the pulmonologist gave the green light for the next step in Peter's recovery. In medical terms it's called a 'bronchoscopy for possible decanulation.' In other words, getting his trach out! This would happen sometime after mid-May, because he has to have been off the vent for 6 to 8 weeks.

The pulmonology nurse handling Peter's case outlined three scenarios of what might happen:

1. Bronchoscopy shows airways clear. Trach taken out right during the procedure that day. One to two nights in the hospital.

2. Bronchoscopy shows scar tissue needing removal. Scar tissue is lasered off that day, Peter is sent home to heal. Returns one week later to have trach out.

3. Bronchoscopy shows significant scarring requiring reconstructive surgery. Peter goes home until surgery is scheduled. Reconstructive surgery performed with 1 to 2 weeks in the hospital to recover. Trach taken out before he goes home.

Whatever scenario it ends up as, when the trach is taken out, Peter will have a bandage over his throat for four to six weeks. Then he will have some stitches for a while until the site heals.

Our pediatrician has warned us that when a child gets his trach taken out, he discovers his voice. It's like a new toy that he will want to play with all the time. So we may find our household decibel levels going up this summer.

Look ma, no vent!

2010-03-30T21:50:00.004-05:00

Hello all,

The blog has been getting quieter over the past few months, because we are finding that Peter's life is becoming almost too ordinary to justify his own blog. Nevertheless, we are rejoicing in his milestones. Many of these milestones are, again, quite ordinary but any of these are still miraculous in light of his long journey to get there. To be reaching ordinary infant milestones is a delight we could not have imagined to rejoice in last summer.

Peter is now crawling like the best, much better, in fact, than his brother every did and much earlier. He is also learning to cruise along furniture and walls and we have little doubt that before long, he will take his first real steps. We have had to consider changes to the way our house is organized to keep it safe for him. Luckily, the presence of nurses means that most of the time an adult is there to keep him out of trouble.

The fact that he is now moving out of the living room does indeed signal that he is now mostly tubeless. In fact, the biggest milestone in his life was reached today. A very not-ordinary one: he is now completely off the breathing machine. For the first time in his life he is now no longer on any vent, even at night! We rather unceremoniously removed the vent from the room today. The only tubes he still has attached to him are those that provide heat and humidity to his tracheostomy, and his attached to those practically only when he is napping and sleeping.

Peter remains a very happy boy who loves to do as his brother Daniel does. Recently, they discovered a game they can both enjoy playing together. The video below illustrates a particularly enjoyable round.

There are many more milestones; practically every day there seems to be one. He is a good and adventurous eater. Thanks to the six teeth he has, he is quite willing and able to eat all sorts of things. We are looking forward to the next appointment with Peter's cardiologist and pulmonologist on April 23. If the X-rays and all other things look well, we may be looking at a swift appointment with the ENT (Ear, Nose, Throat) doctor to take out the tracheostomy and do the restorative surgery, possibly as soon as May.

What the world needs now: an institute for chylothorax research

2010-03-27T21:19:00.003-05:00

I know I have mentioned this to various people, but I finally wanted to write down what was on my mind. Two weeks ago we attended the funeral of one of Peter's little intensive care buddies. Totally different medical situation, but chylothorax was one of the major factors in that baby's struggle.

Chylothorax is a leakage of chyle (fluid from the lymphatic system) into the thoracic cavity. It is often triggered by thoracic surgery, such as open-heart surgery, but can occur spontaneously. It happens in infants and adults, and even in cats and dogs--just google 'chylothorax' and you get a lot of veterinary links. The lymphatic system, in addition to its infection-fighting job, also processes fats in the bloodstream. With chylothorax, the fats get dumped along with chyle into the chest cavity, putting pressure on the heart and lungs.

When Peter's chylothorax started a few days after his heart surgery, the surgeon explained what it was and listed the treatment options. He said, "From the variety of treatments you may rightly conclude that this condition is not well understood." The treatment protocol included removing all fats from the diet, an IV medication called Octreotide, a surgical procedure called pleurodesis, and using the ventilator settings to hyperexpand the patient's lungs against the rib cage. After the effusions stop, the patient must continue on a fat-free diet for three months, then gradually reintroduce fats.

Peter underwent all these treatments. It still took almost two months for the effusions to subside. Children who have heart defects requiring multiple surgeries could get chylothorax, then recover, then get it again after the next surgery. In all that time, an infant with this condition cannot have the fats its body needs to grow and develop. Proteins are washed out along with the fats, and thyroid deficiencies can arise. Chest tubes must be inserted to drain the effusions, but this limits movement and motor development. The domino effect of chylothorax is considerable.

Even from the insurance company's perspective, the cost of chylothorax is high. Peter's hospital stay was originally estimated at four weeks, but ended up at four months--because of chylothorax. As long as the effusions continued, he was in intensive care. He required chest X-rays every day or two, and plasma transfusions on a regular basis to replace lost fluids. Octreotide is an expensive drug, I am told. Then there was the pleurodesis (another surgery), and the need for a tracheostomy (surgery again) because of the long-term ventilator dependency. His custom trach tubes cost more than...well, never mind. And when Peter was ready to come home, he needed 24-hour nursing care and the support of a medical supply and service company.

Surely this condition is worthy of concentrated study. If Michel and I had millions, this is what we would do with it: we would found an institute for chylothorax research. It would be associated with a large hospital that saw a fair number of chylothorax patients every year. The work of this institute would be to come to an understanding of the condition while also working on treatments/prevention. There might be a veterinary wing or branch, because surely there must be correspondences between chylothorax in humans and the same condition in animals. An annual conference would be held to bring together the best new thinking from all over the world. There would also be a nutrition division to come up with healthy, palatable foods for chylothorax patients, especially babies. Peter enjoyed specially-defatted donor breast milk from the Denver Breast Milk Bank; some similar processing center might be part of the institute. There would also be counselling and support for parents and family of chylothorax patients.

We praise God that Peter's chylothorax is a thing of the past. We wish it could be a thing of the past for everyone.

There will be an update on Peter in a day or two. He is doing very well, by the way!

Ocean waves

2010-03-02T22:07:00.003-06:00

Hi everyone,

Does this title refer to a family trip to the beach? If only! It refers to the new background noise we get to hear at night ... while Peter sleeps with the vent off! Peter has worked his way up to 12 daytime hours off the vent, and the pulmonologist just said we could begin night weaning. This will proceed, Lord willing, in weekly two-hour increments. Peter goes to bed at 8 pm, so tonight we reconnected him to the vent at 10 pm. Next week we'll reconnect him at midnight, and so on. Because the house is so quiet at night with the vent off, we run a machine that makes relaxing background noise so that Peter doesn't wake up from every little sound.

More good news: Peter's one remaining regular medication, aspirin, has been discontinued.

No more Broviac

2010-02-08T22:32:00.004-06:00

We have had a happy week. Best of all was that Grandma came to visit. She and Daniel had a whale of a time. Her visit coincided (not altogether coincidentally) with Peter's Broviac removal surgery on Wednesday. That went very smoothly and quickly. When we went on Monday for the pre-op checkup with the pediatrician, he said that Peter used to have "more plumbing than a three-story outhouse." Wasn't that the truth. Now no more! The trach is now the only artificial hole in Peter's body.

After the last sterile dressing change.

Two bottom teeth broke through the day after the surgery, bringing the total up to six. Peter now has a toothy grin and is getting adventurous with his eating. He is also eating us out of house and home--must be a huge growth spurt! By our next update we will probably be able to say that he's getting his wisdom teeth and wearing a size 13 shoe.

More good news

2010-01-22T16:30:00.002-06:00

As of this afternoon, Peter can stop taking thyroid medicine! The pediatrician just gave the all clear. He will have a follow-up blood test in a few weeks just to make sure everything is going fine.

Mostly good news

2010-01-19T21:37:00.005-06:00

Time for another update. Peter now has three teeth, all on top! Lately he has been working on crawling. This is much more fun without a G-tube sticking out of his stomach.

The only not so good news is that Peter is currently fighting a bronchial infection. At first this was diagnosed as a virus, but the trach culture from his last doctor's visit finally came back showing no less than five different bacteria growing in there. These are common but nasty trach bacteria, and the pulmonology clinic said that Peter had been doing well to avoid them for so long. He is now receiving an antibiotic (Tobramycin) via nebulizer twice a day and seems to be doing better. We have had to go gently with the time off the vent because it tires him out so. Before the infection hit he was at 6 hours a day total.

Back to good news now. Peter is now off all his diuretics, leaving aspirin and synthroid as his only regular daily meds. We are waiting for the results of his most recent blood test to see if he can come off the synthroid. Also, both the cardiologist and pulmonologist said they had no further use for his Broviac catheter (a permanent IV line in his chest), so it can come out as soon as Peter gets over his present illness. This is really wonderful news. Apart from the danger of a potential blood infection, the Broviac takes a lot of maintenance. Every day it has to be flushed with heparin to keep it from clotting up inside. Every three days the caps on the two lumens (ports) have to be changed. Every week I have to don the surgical mask and sterile gloves and change the sterile dressing covering the spot where it enters Peter's chest while an assistant holds Peter and keeps him from touching the site. While Peter was in the hospital and receiving so many IV meds, it was a practical and useful appendage. Now it is no longer needed, praise the Lord, and soon Peter will be able to say goodbye to yet another bit of tubing.

Santa's surprise

2009-12-27T23:31:00.004-06:00

Hi everyone,

The removal of Peter's G-tube on Wednesday went very well and quite quickly. The gastroenterologist even took pictures of Peter's innards during the procedure so we could see. The inside is held together with tiny staples until it heals. Eventually the staples (they looked more like clips to me) will release and make their way into his diaper. Sorry if that's too much information.... On the outside of his tummy he just has a small wound the size of a mosquito bite. After the procedure Peter was bright-eyed and playful, and we noticed that he immediately wanted to play more with his feet. Apparently his abdominal muscles immediately felt more comfortable!

The same day the pediatrician called and said that based on Monday's blood tests, Peter could reduce his thyroid medicine again by half--from 25 mcg to 12.5 mcg. In another 3-4 weeks he can be tested again and probably discontinue the medicine entirely.

Christmas morning we noticed a little something new that had arrived for Peter--his first tooth! It's on the top, as Peter will readily point out to anyone who asks.

All he wants for Christmas is...

2009-12-15T21:17:00.004-06:00

...his G-tube out! And it looks like Peter will get his wish. Yesterday the gastroenterologist (back from vacation) called and said he saw no problem with taking the G-tube out of Peter's stomach. The procedure is scheduled for next Wednesday, the 23rd. It is an outpatient procedure but Peter will be under full anesthetic while they go down through his esophagus to take out the inside part of the tube. We look forward to some pain-free tummy time in the near future.

Last week the pediatrician also lowered Peter's dose of thyroid medicine based on his blood tests. He said the test results seemed to indicate a functioning thyroid (hooray!), so we will be on a weaning program with that as well. We have all been enjoying Peter's two daily half-hour playtimes off the vent. We now call him the Portababy.

Time off for good behavior

2009-12-04T21:40:00.006-06:00

Hi everyone,

Peter's now completely off Lasix (a diuretic), potassium and sodium. This leaves him with only two diuretics, aspirin and thyroid medicine. Today we called for the results from his blood test for thyroid which was taken during our latest cardiology appointment. He had not been tested for thyroid levels since August. It seems the pediatrician may recommend reducing his dose! Our understanding is that there is probably nothing congenitally wrong with Peter's thyroid gland, but the chylothorax washed so much protein out of his body that his thyroid could not function properly. Now that his diet is normal, his thyroid may be getting back to work. We'll hear more next week.

We also talked to the gastroenterology clinic about his feeding tube. Their protocol requires it to be left in for four months after its last use. This was a bit of a downer. However, we can talk to the doctor about it again when he's back from vacation. We're prepared to grovel.

Finally, we spoke with the pulmonology clinic and got the green light to reduce Peter's ventilator pressure support to the absolute minimum. (It was 18 with a PEEP of 6; now it's 15 with a PEEP of 6). The next step, starting next week, will be "time off for good behavior"--Peter may be disconnected from the vent for 30 minutes twice a day. Each week we can tack on an additional 30 minutes to each period. We are very excited, and Peter would be too if he knew what was in store. He's getting bored of staying in the living room all the time, and gets very curious about where we go when we leave the room.

Peter, Peter, pumpkin eater

2009-11-26T21:15:00.004-06:00

Happy Thanksgiving, everyone!

For us it was a mellow but festive day. Peter celebrated by somehow getting his trach tube pulled out. Michel noticed it and we had a clean trach back in place in minutes. That was in the morning and there were no further mishaps! After dinner we gave Peter his first taste of pumpkin pie. The flavor intensity sent shock waves through his whole body--hilarious!

Yesterday Peter had another cardiology checkup. His chest x-ray showed that he is tolerating fats very well. We were able to cut out one supplement (iron), and we get to wean one diuretic (Lasix) over the next week, which will actually eliminate three meds in total (Lasix plus sodium chloride and potassium chloride). Then we can make arrangements to have his G-tube (feeding tube) removed. Hooray! It was necessary for a while, but is now no longer needed and is only a source of discomfort and constant skin irritation. He takes his other medications by mouth twice a day.

People have asked about Peter's eating. In my naive way I assumed that once he was allowed to have my milk undiluted, he would take to nursing easily. But 6-month-olds are very set in their ways, and "latching on" is a seemingly impossible paradigm shift for him. It would be so much easier for me not to have to pump, and also Peter would not have to take bottles of formula (which he doesn't really like) from the nurses in between times. But how to explain this to a baby?

Peter in the stroller

2009-11-17T14:37:00.001-06:00

Here is the Youtube video of Peter in the stroller (Nov. 7).

Still here, everyone?

2009-11-12T21:47:00.006-06:00

Yes, yes, we know; it's been a scandalously long time since we last updated this blog. But here we are and we have a lot of good news to report.

Peter continues to thrive at home and is making good progress. We have now passed out of the stages where he was receiving 50% Betsy's milk and 50% fat-free formula, right through a brief 7-day period of 75% real milk, and he is now completely off the dietary restrictions. The chylothorax is now definitely a thing of the distant past. Peter loves to eat, not just his full-fat diet, but also the cereals we have started to introduce him to (or "spoon food" as we call it). Show him a bowl with a spoon and he will automatically open his mouth in readiness. He's not catching on to breastfeeding yet but Betsy has a few clever tricks up her sleeve to teach him what's what. If his transitioning to oral feeding from j-tube feeds is anything to go by, he just needs a little more time to figure things out.

There was one more scary incident, early in the morning of October 26. After changing Peter's diaper, the nurses suddenly noticed that he was suffocating for no apparent reason. We still don't know exactly what happened but we think his trach ties must have come a little loose and the end of the trach tube probably dug into the tissue of his trachea, thus closing the breathing hole in the other end. As soon as the tube was removed he resumed breathing, though in the meantime an ambulance had been called. The EMTs were very happy to be called in to do nothing more than to look on a cute baby. Peter recovered quickly from the incident--we needed several days to catch our breath!

Last Saturday, Peter went on a little adventure. Minnesota was having a sudden unexpected Indian summer (well, low 60s is considered almost tropical in early November) and we all went to the playground. So, we loaded him and all his gear up in the stroller and made our way to the playground.

(We had a video of Peter in the stroller, but Youtube has been malfunctioning this evening and I can't get it uploaded at the moment. Sorry.)

TGIF

2009-10-23T20:51:00.006-05:00

We're glad to report that we got safely to the doctor's office and back this time without incident. This was the first time the pediatrician had seen Peter. He said he was glad to finally meet this little guy after hearing so many rumors of his existence! The doctor approved special monthly shots (Synagis) to prevent respiratory viral infections. He also gave the green light for starting solids, so we wasted no time mixing Peter up a nice bland bowl of baby cereal this evening. Peter's initial verdict: "Hmm... this is an interesting but weird way to eat."

In other news, Peter has been 'talking' a lot lately, making the usual sounds a baby makes at 5 months. We are very excited, because it's not always possible for a baby with a trach to make sounds. He seems most talkative when Daniel is in the room but also carries on conversations with his toys.

Just another manic Monday

2009-10-19T21:10:00.003-05:00

Hi all,

Things had been going so well.... Today we were supposed to take both boys to the pediatrician for a checkup. We packed up and had to go in two cars because it would be hard to squeeze a nurse in between two carseats in the back. I went with Daniel in the smaller car. Michel, Peter and nurse drove away before we did, so we were surprised when we got to the doctor's office and they weren't there yet.

Come to find out, on the brief 10-minute drive from home to the doctor, Peter threw up all of the large feeding he'd had before we left. It went everywhere--including down his tracheostomy, which blocked his breathing. Michel and the nurse had to pull over and change out his trach and suction the vomit, then they rushed to the nearby hospital's emergency room as Peter was still having difficulties.

By the time they got word to us at the doctor's office, Peter was stable once more. Daniel and I left the doctor's office in mid-checkup. When we got to the emergency room, Peter was happy to see us and his face brightened at the sight of his big brother. Peter's been tired but otherwise quite normal since we got home. That's more than can be said of his parents. The appointment is rescheduled for Friday, so perhaps we'll all have recovered our strength and sanity by then. On the bright side, the ER doctors did a chest X-ray and Peter's lungs looked even better than they did at his last cardiology appointment.

50/50

2009-10-13T21:36:00.000-05:00

Peter has now been home for one month! We went back for another checkup at the hospital on Thursday. The cardiologist and pulmonologist were extremely pleased with the way Peter's chest X-ray looked. They even saw an improvement compared to the previous visit. Consequently, Dr. Baker said that Peter could go to a 50/50 mix of my milk and the Portagen non-fat formula. This also seems to agree with Peter, as he has been eating heartily and growing! There were no changes to his medications or ventilator settings this visit.

With our busy lives we don't have as much time to enjoy our favorite genre of pleasure reading, the mystery novel, as we would like. Luckily we get the real-life version every few days. First it was The Mystery of the Missing Stethoscope, which disappeared for almost a week but actually never left the room. Then yesterday it was the Case of the Nurses' Shoes. We had two nurses for a certain shift. (One of them was doing orientation.) They were both wearing similar shoes. When their shift ended, Nurse A left and Nurse B was distraught when her shoes were nowhere to be found. Fortunately she had an extra pair in her car. Five minutes after she left, Nurse A turned up to return Nurse B's shoes, which she had put on by mistake, and retrieve her own. Nurse B's shoes are still here.

Daniel is doing a great job as a big brother. Today he was trying to teach Peter the alphabet using flash cards. You may laugh, but Peter watches everything Daniel does with rapt attention. He may have Peter so well educated by next year that they will be able to start kindergarten together.

More progress

2009-09-30T22:13:00.003-05:00

"Never a dull moment" still describes our daily non-routines. One major mishap occurred on Saturday night about a week and a half ago. The port at the end of Peter's J-tube started leaking. (The J-tube is the inner feeding tube that goes into his jejunum or small intestine; the outer G-tube goes into his stomach. These tubes come out about 18 and 8 inches from his body, respectively. The port is a capped opening at the end of the tube used for connecting the food pump and administering medicines.) So the nurse discovered that as Peter was sleeping, about two hours' worth of feeding had leaked into his bed and never reached him at all. We tried to figure out how to fix it, but to no avail. In the end we wrapped the port in a disposable diaper and told the nurse to feed Peter a bottle if he woke up hungry.

The next day we called the hospital and when the doctor ascertained that Peter was eating well by mouth, we were given permission to stop tube feeding and feed him all his food by bottle. We were given a minimum intake guideline to prevent dehydration and a daily target for healthy weight gain. The nurses keep meticulous track of these things. So Peter has been getting all his food by mouth for eleven days now. It was with ill-disguised glee that we packed up his food pump and remaining feeding bags and put them in a downstairs closet.

This past Monday was our maiden voyage taking Peter back to the hospital for his first check-up. Daniel stayed home with Grandma, who was up for a visit. Peter coped very well with the new experience of car travel. A friend lent us a double stroller to transport Peter and all his appurtenances around the hospital. At the end of the day, Peter was taken off one medication (Zantac), the despised J-tube was removed entirely (a remarkably easy procedure), and ... drum roll please ... Peter is now getting 25% my milk in his food mixture! (The secret recipe also contains 25% skimmed donor breast milk and 50% Portagen non-fat formula.) We will return in another week for a checkup to make sure Peter's body is coping with the fat as it should. Please pray that this will be so. For one thing, we do not want a recurrence of the chylothorax. Moreover, the long-chain triglycerides (fats) that Peter has been unable to take up to now are very important for growth and development in infants.

Never a dull moment

2009-09-13T15:54:00.007-05:00

Hi everyone,

The four of us are beginning to settle in at home now. It took a couple of days for Peter to adjust to the new sights and sounds around the house, but he seems to enjoy the 24-hour access as much as we do!

One thing Peter has had to adjust to is temperature fluctuation. He is quite hot-natured and often likes to wear just a diaper with the air conditioning cranked up. A cool washcloth hat also helps sometimes.

We are also learning how to keep a "cool head" when all the alarms on Peter's machines go off at once. Example: Peter has a dirty diaper, which makes him very angry. He cries. The ventilator starts beeping because it senses the high pressure of his breaths. He kicks his feet, and the oxygen sensor on his foot also starts beeping frantically because the movement gives a false reading. The crying leads to a surfeit of phlegm, so we turn on the suction pump (sounds like a quiet air compressor) to suction his trach while one of us is dealing with the diaper. This is usually the point when the phone rings and the food pump beeps because it has run out of milk.

Speaking of food...Peter's bottle feeding has been improving exponentially. We haven't weighed him since he was discharged but we're sure he's gaining and growing. He's now working on a second chin--no mean feat when you're on a fat-free diet. He gets tube feeding for 16 hours a day, bottle feeding whenever he's hungry.

People have asked us about the nursing care. The nurses come to our house in three 8-hour shifts every day, at least for this first month. One week in, it has been quite a study in personalities. It is amazing how the nursing profession reaches across generations and walks of life. We are grateful for their medical expertise, enthusiasm and experience.

Home!

2009-09-08T22:19:00.002-05:00

Psalm 126

When the Lord brought back the captives to Zion,

We were like men who dreamed.

Our mouths were filled with laughter,

our tongues with songs of joy.

Then it was said among the nations,

"The Lord has done great things for them."

The Lord has done great things for us,

and we are filled with joy.

Restore our fortunes, O Lord,

like streams in the Negev.

Those who sow in tears

will reap with songs of joy.

He who goes out weeping,

carrying seed to sow,

will return with songs of joy,

carrying sheaves with him.

This was the psalm that God used to keep me going through all these months. Praise be to Him! Here are some photos from this eventful day.

Clear for takeoff

2009-09-07T23:23:00.002-05:00

Hi everyone,

Peter is all set to be discharged tomorrow! The past week has been very busy. Michel and I have each spent a night at the hospital learning Peter's night routines (thank goodness, he is a good sleeper). We have had five hours of training on his machines--ventilator, oxygen monitor, suction pump, food pump. We have learned how to administer his medications. We have rearranged the living room to accommodate his crib, equipment and supplies. We attended a discharge planning conference with his cardiologist, pulmonologist, respiratory technicians, care managers, and home nursing agency. We have signed papers and checked off checklists.

Peter, on the other hand, has no idea what's in store! He has been steadily growing and learning how to be a good eater. His tube feeding is turned off for 8 hours each day and during that time he takes his food from a bottle. He now eats the same mixture of 45% fat-free breast milk and 55% fat-free formula concentrate that he gets through the tube. The idea is to get more calories in by mouth so that the tube gets used less.

Tomorrow will be a busy day. The triumphant convoy back home will feature Peter travelling by ambulance for his comfort and the entertainment of our neighbors. There will be people in and out of the house for several hours checking and adjusting his equipment, etc. I am curious to see how Peter takes it all. He was so amazed at being moved from PICU to the third floor that he did not nap the entire day--no telling what he will make of this. Praise God that he has brought us this far, and pray that he will help us all adjust to this wonderful change.

Bottle success!

2009-08-30T16:22:00.002-05:00

Another update with good news. Today Peter drank 28 mL of skimmed breast milk from a bottle, about one fluid ounce. For most babies this is just a fraction of a meal, but for Peter this is really big news. Before now it has been only a few tastes, licking and chewing on the bottle--enough to show that he liked the idea. He just couldn't or wouldn't duplicate the vigorous sucking he can do on a pacifier.

We and our nurse had a theory that he just never felt hungry enough to really try to eat. Today, the doctor gave permission for his feeding tube to be turned off for 4 hours. After about 3 1/2 hours Peter was sucking anything, whether the pacifier or my finger (the latter so hard he was leaving gum marks in the skin); if I took it away he got testy. The nurse quickly got us a bottle ready and what do you know? Coordinated sucking and swallowing was no longer such a mystery!

Tomorrow Peter gets to go for six hours with the feeding tube switched off. We are hoping he will build on his success today and learn to relish the sensation of a full tummy. (Right now he gets fed directly to his intestines, so his stomach always stays empty.) After drinking the ounce of milk he promptly began to get drowsy; when we left he was sound asleep. Before he drifted off he gave me a satisfied, contented smile.

New vent and new wheels

2009-08-28T21:14:00.006-05:00

Hi everyone,

Once again we're overdue for an update. On Tuesday, Peter was switched over to the type of ventilator he will have at home. We were told it was small and quiet. As for the size, you can look at the photo of it next to the hospital ventilator and judge for yourself; it sounds like a junior Darth Vader machine. The pulmonologists tell us that as Peter grows and gains in weight and strength, we will be able to wean him off the ventilator at home. This will happen over a matter of a few months. Contrary to what I had always understood, the development of Peter's lung passages before birth was affected by his heart defect. This just means that he needs that extra time on the ventilator as his lungs continue to grow and adapt to the corrected circulation between heart and lungs.

In the meantime, discharge is starting to feel closer. We have met most of our home nurses, and the nursing agency gave us a schedule of nurses for the first month. No official word yet, but the agency chose the day after Labor Day (8 September) as a tentative discharge date for scheduling purposes. The medical equipment company will come and look at our "home environment" this Monday--mainly to see if our electrical outlets are up to snuff--and on Tuesday we will have three hours of training at home to learn about the ventilator and food pump.

Over the past couple of months it has slowly dawned upon us that our little Toyota Tercel would not be big enough to transport two boys, one with medical equipment, two parents and possibly also a nurse. Thus, for the past few weeks we have been squeezing car shopping into our schedule along with everything else, and we are now pleased to announce the result. We found a nice 1999 Honda CR-V in our price range that was so clean it looked almost like it had been brought brand new into the present in a time machine.

Now we can turn our attention to preparing the house for Peter's homecoming. His crib will go in the living room; we'll have to make space for his medical supplies and a comfortable workspace for the nurses. We're busy but very happy. Sometimes we could use a nap.

Closer to Home

2009-08-19T21:20:00.003-05:00

Sorry for the long delay in posting--it's been very busy. We have been working with an agency to set up home nursing care for when Peter comes home, a day which is drawing ever closer.

Peter has been very happy in his new surroundings on the third floor, and so have the rest of us. Daniel's favorite feature is the big playroom.

Over the past week, we have worked hard on bottle feeding. He likes milk and he likes to suck, but after 3 months unable to indulge his nursing instinct, he just doesn't seem to be able to put the two together. This has made him rather dependent on the tube in his nose and finally the doctors decided that his progress to normal bottle feeding was too slow. Because he could not go home with a nose tube (which he would pull out every now and then, the rascal), they put in a so-called g/j tube today. This was, yes, another surgical procedure placing a double tube-inside-a-tube directly through his skin into his stomach, with a smaller extra tube running past his stomach into his intestines. This is fastened more securely than a nose tube and is said to be less irritating to the patient. Peter will be able to go home with this in place, so we can feed him through the stomach tube. At the same time, we will be able to keep training him on the bottle--every now and then he does catch on (and latch on) and we do hope we'll make more progress with the nose tube now out of his face and throat.

Peter was happy and awake when we left after his surgery today. He will stay in the PICU overnight for observation before returning to the 3rd floor tomorrow. Everyone still remembers us even in the fast-paced PICU and it was like being back in the old neighborhood.

By the way, we've updated the photo album on Picasa.

Peter's new digs

2009-08-10T22:08:00.003-05:00

Hi everyone,

Good news! Today Peter graduated to the third floor "Intermediate Care" unit, or as Daniel calls it, the Getting Well Floor. His new room is several times the size of his intensive care room. It has a sofa, a bathroom, and other features that will make it more comfortable for us to spend a longer time each day together as a family. There is a playroom which sent Daniel into ecstasies. The atmosphere in the new unit is serene, a great departure from the bustle of the PICU. Peter will probably have to adjust to the quiet!

Peter is currently on the lowest ventilator setting (CPAP), which means he is taking all his own breaths with just a little pressure support. Soon he may be ready to go without the ventilator for part of the day, wearing what is called a "nose" over his trach. (I had imagined the "nose" as something out of a Mr. Potato Head set that attached to the trach, but it is actually just a sort of filter.) Also, Peter went down a notch on his methadone over the weekend.

Peter is getting better at sucking on his pacifier and has had some success drinking from a bottle. Now we are hoping he will really catch on quickly. If this does not happen the doctors may decide to insert a G-tube, which is a tube that runs directly into his stomach (not down through his nose). His long, agile little fingers are very adept at pulling out his NJ tube (nasal feeding tube). So our prayer requests remain the same: less vent, less drugs, more success bottle feeding!

Two Brothers

2009-08-02T21:49:00.005-05:00

Hi everyone,

Time for another update. Peter continues to make progress on three fronts: reduction of his ventilator support, reduction of medications, and increasing his feedings. His ventilator settings have been reduced daily over the past week. His ativan and methadone weaning has to be slower; if it is reduced too drastically he shows symptoms of gagging, fever, and anxiety.

As for his feedings, Peter is receiving a 60/40 mix of nonfat breast milk and Portagen (a non-fat formula) through his feeding tube. It is necessary to mix the two to ensure he gets enough calories. The occupational therapist continues to work with Peter on teaching him to use his mouth to eat. Peter is certainly interested, but the presence of the trach and the feeding tube in his throat, not to mention his lack of experience up to this point in life, make swallowing difficult. Today the nurse told us that because he was now receiving enough food in his feeding tube, they would be reducing his IV fluids each hour until they were discontinued entirely sometime tonight. This is good news for Peter's kidneys. Apparently the concentrated nutrition in IV fluids puts a strain on kidney function. Peter is still on pretty heavy-duty diuretics, and these can be reduced now as well.

The medical staff are hopeful that Peter will be ready to move up to the recovery unit and out of intensive care soon. We'll keep you posted! Here is a picture of Daniel's first chance to hold his little brother. Daniel was very careful and gentle, and it was a delight to see how pleased and proud he was.

The learning process

2009-07-28T21:05:00.003-05:00

Hi everyone,

Yesterday (Monday) was a big day with firsts for all of us. For Michel and me, it was our first trach change. We have to take Peter's trach tube out and put a new one in every two weeks. As IKEA furniture assembly instructions used to say, you have to be two people for that. One person takes the old trach out and the other slips the new one in, lickety split! It was easier than we thought it would be, and Peter did not get upset. Our trach instructor was there with us, which gave our confidence a boost.

Later that day, Peter had his first close encounter with a bottle. The occupational therapist introduced him to a bottle filled with his special non-fat milk. We have been practicing sucking with him all along, but learning how to suck and swallow is a whole new thing. He practiced again today and is beginning to get the hang of it. Soon we look forward to being able to bottle-feed Peter ourselves!

Daniel spent the day with his friend Arielle. On the way home afterwards, he said he wanted to marry her. We said he had to wait till he finished school, but after that it would be fine with us.

Tracheostomy class

2009-07-21T23:03:00.003-05:00

Hi everyone,

We should mention that the pictures in the previous post were taken when Peter pulled out his feeding tube. That's why he's looking so pleased with himself! Didn't I mention the nurses are good-humored? They took the cute pictures for us, then stuck the tube back in.

Today Michel and I attended a one-on-one trach class to learn how to take care of Peter's tracheostomy when he comes home. The class covered inserting and removing the trach tube, suctioning, cleaning, and emergency procedures. We got to practice on a baby doll. The class lasted about 5 hours (not including lunch break) and by the end of it, we were experiencing information overload. Fortunately we now get some on-the-job training, helping the nurses with Peter's trach each day to get ready for going solo at home. Chances are Peter will have to keep his tracheostomy until March, as the hospital does not like to remove them during flu season. One other trach-related concern we had was laid to rest today: the tracheostomy information booklet had spoken in very disparaging terms about pet hair, and one of the nurses had indicated that pets and trachs were incompatible. We simply did not know what we would do with our three dear cats! But the instructor said that it would not be a problem.

We have also started hearing some tentative time frames for Peter's recovery. He is receiving milk at a gradually increasing rate, and will soon reach the point when we can try bottle feeding. He is expected to have kicked the methadone and ativan habit in a week or two. At about the same point he will graduate to the third floor recovery unit and will no longer be in intensive care--that's a big deal! The doctors have ventured to say he might be discharged in six to eight weeks. By October, if all goes well, fats can be gradually re-introduced into his diet until he is able to have my milk. No one can say whether he can be taught to nurse at that point, or whether he will only bottle feed.

When Peter is discharged, it will be a joyful day. For now he has some more recovering to do, and we must become proficient in trach care. We must also make arrangements for in-home nursing which involves finding agencies covered by our insurance and interviewing them. It will be a lot better in a lot of ways if Peter is able to get off the ventilator. That means he will just breathe through the trach tube, but without being constantly attached to, and dependent on, the machine. The doctors are certainly hoping to get him off the ventilator before he is discharged--please pray that this will be so.

Slow Progress

2009-07-18T23:25:00.003-05:00

No news is good news. This has definitely been our motto this week. We have been extraordinarily busy with all sorts of things (including my swearing-in ceremony as a U.S. citizen this past Wednesday). Peter is doing well. The doctors are keeping an eye on his chest X-rays as there is some fluid retention visible in the lungs. Dr. Baker said that he is not too worried about it because he shows no other signs of breathing difficulties and it does not indicate the return of the chylothorax because these are not pockets of fluid buildup.

Here are the two pictures of Peter without any tubes in his face (taken by a nurse and now finally scanned).

And here's some video

2009-07-14T21:37:00.003-05:00

Hello all,

Not much to report, really, since yesterday. Peter is doing quite well, even in the opinion of Dr. Overman. There's a long way to go yet, but things are definitely looking up. He has been taken off Dopamine and Milrinone completely (both are heart medications but he was receiving them primarily to boost kidney function) and they're working on the methadone. This is not an easy task because it is a habit-forming drug. Apparently, they were weaning it a little too quickly and found he was suffering from withdrawal, so they eased up on the schedule. Octreotide, the medication that he was receiving to fight the chylothorax is being weaned over five days and he should be off of it by Friday (though the doctors believe this medication has had no effect on Peter whatsoever).

So, Peter is still a little bit of a junkie, but he is making progress. He was apparently so eager to get rid of tubes that he yanked his feeding tube out of his nose this morning. An enterprising nurse quickly took a picture of Peter without any tube whatsoever on his face and printed a copy for us (sorry, no digital version available). The tube had to go back in, though...

Here's some video of Peter from last Sunday (sorry, had some trouble uploading it):

Two Months of Peter

2009-07-13T23:01:00.012-05:00

Hi everyone,

Today the nurses planned a "birthday" party for Peter, who was two months old today. The hit of the party (as far as Peter was concerned) was a shiny red balloon tied to the foot of his bed. He couldn't keep his eyes off it as long as he was awake.

Peter has been happy and active the past few days. He even smiled at Daniel, to his great delight. The only exception to Peter's good mood comes when he runs short of methadone. The doctors have started weaning him off this addictive painkiller now. The soft neoprene splints on Peter's hands in some of the photos are to help his thumbs stretch into a normal position; they have a tendency to fold in towards his palms. Another change is that Peter is now in a hospital crib instead of a full-sized bed.

No More Chest Tubes

2009-07-10T22:07:00.001-05:00

For the first time since his surgery on May 15, Peter is now without any chest tubes! After several days of no drainage, and the X-ray confirming that there was no hidden buildup in his chest, the surgeon today decided to remove the remaining chest tube. Betsy was able to hold him without any tube and we also took the opportunity to dress him in a suit.

Peter is finally starting to do better. We remain cautious but optimistic about his progress this week. This also goes for the doctors. Peter's cardiologist, Dr. Baker, approved an order to stop his antibiotics (which he had to take as long as the chest tubes were in). That also means that soon they can start tests again for MRSA so they can eventually give the all clear. (For those who missed this detail: Peter tested positive for MRSA early on and had numerous negative tests afterwards, but they could not lift the MRSA restrictions while he was on antibiotics.) The weaning process for the methadone has also started and soon, we were told, they will carefully start weaning him off other medications too.

We are of course overjoyed. Please pray that this progress may continue.

N.B. The photo above was taken with another camera--sorry about the lower quality. All photos I took today can be viewed on the Picasa website (click on link in the right column next to this blog).

And then there was none...

2009-07-09T21:40:00.002-05:00

Hi everyone,

Just a brief update with good news. Peter's chyle output continues to reduce--it went from 30 ml for the day on Wednesday, to today's grand total of 0 as of this afternoon. He could be on his way to losing the other chest tube soon!

Peter also started getting food again through his nose tube today (this had been discontinued during the weekend edema crisis). This time, he's getting the real McCoy, special fat-free milk from the Denver breast milk bank at 2 ml an hour. To ensure that he gets enough calories, he is still getting IV feeding too. This regimen will continue, with the volume of milk being increased until it is enough to start bottle feeding.

Peter looks and feels increasingly comfortable as he loses the excess fluids in his body. He spent some time in my arms and in his bouncy seat, and was very happy and smiley.

Less Chyle

2009-07-07T23:37:00.003-05:00

Just a brief posting today to give the encouraging news that Peter is putting out less chyle. On Sunday, it was about 380 ml; on Monday, he produced about 300 ml. When we left today, he was on track to drain less than 200 ml. This is very good news: the gradual slowing down of the chylothorax, which should give his body time to adjust to a new economy of fluids in his body. Both Dr. Overman (the surgeon) and Dr. Baker (the cardiologist) were optimistic about this state of affairs. And since the left chest tube was not draining anything anymore, they decided to take it out today. So, we're down to one again. Praise be to God.

Improvement

2009-07-05T22:28:00.002-05:00

It is perhaps a little counter-intuitive but we are happy to report that the chyle leak has started up again, this time on the right. We consider this good news because it means an immediate improvement in Peter's health as the fluids are no longer building up in his body. After two turbulent days during which there was temporarily no drainage, the chyle leak shifted over to the right (the side where the drainage tube had been removed last week but which has been replaced, of course), leaving the left side at a complete standstill. At the moment, drainage is about at half the speed (ca. 400 ml a day) from last week. This is still a substantial amount of fluid loss but quite an improvement from before.

Of course, Peter remains a sick little boy. His kidneys are not functioning exactly like they should, though Peter is reacting well to the change in diuretics. Today, he was losing about the same amount of fluids as he was taking in. Hopefully he will be losing the extra fluids soon.

Perhaps this is the way the chyle leak will stop: bit by bit. Please continue to pray for Peter that the leak might stop soon but that it might not be too abruptly.

Two tubes again, but for how long?

2009-07-04T16:03:00.004-05:00

Hello everyone,

Time for another update. Peter spent four contented days with only one chest tube. The occupational therapists even brought him a bouncy seat, which he loves. What a nice break from lying in a bed all day and all night! I also got to hold him several times over the past few days.

On Thursday night, however, the chyle leak on the left side suddenly stopped. While this sounds like a good thing--a wonderful thing--it was not altogether comfortable for Peter. The fluids began to build up in his body, his heart rate soared (200 beats per minute as opposed to the healthy range of 130s and 140s), and his breathing became labored. The doctor replaced his left chest tube yesterday morning and when we left the hospital it was draining as usual.

By this morning, however, the chyle had stopped again. A chest and abdomen X-ray and an ultrasound showed only one smallish pocket of fluid on his right--the rest of the chyle is building up in his tissues as edema. Thus, the doctor reinserted the right chest tube to drain out that pocket of fluid, but does not expect the drainage to continue for long. Getting rid of that fluid helped Peter's breathing and heart return to normal rhythms. His torso is still extremely puffy, though his head, arms and legs are not affected.

Peter has been put on a new diuretic since his body has become unresponsive to the one he had been receiving. The doctor tells us that sudden stoppage of a chyle leak does sometimes happen, in rare cases (well, what would we expect from Peter by now?). His body now has to find a way to get rid of this excess fluid ASAP. The fluid buildup puts pressure on all his organs, but his kidneys are at the most risk. When we left the hospital today Peter was heavily sedated but trying his very best to stay awake and look at us. Nothing keeps him down for long! Please pray for Peter to get rid of the excess fluid in his body and for his kidneys to remain healthy. In short: pray for pee, and lots of it.

One down, one to go

2009-06-30T22:07:00.002-05:00

Hi everyone,

We have just one bit of news to share today. This morning the doctors took out Peter's right chest tube! That's the one that had very little drainage. They will continue to monitor the situation to make sure chyle does not build up on that side. If it does, the tube could go back in. However, we are glad that we only have one tube to obsess about now!

Yummy, yummy, yummy, he's got food in his tummy

2009-06-29T20:25:00.004-05:00

Hello all,

Peter's mama with the latest update. The much-vaunted first trach change didn't happen today because the made-to-measure trach tube hadn't arrived yet. It will probably be ready by tomorrow.

However, there were some changes to the daily routine. The doctors decided that two of the treatments they were trying (increased ventilator pressure to inflate Peter's lungs and IV nutrition only) were not making any difference to the chyle flow. The thought behind the ventilator pressure was that widely inflated lungs would leave less room in the chest cavity for chyle to leak into. IV feeding, or TPN, was supposed to prevent digestive secretions in the intestines from stimulating the lymphatic system.

Since these things weren't working, the doctors decided to turn Peter's peak ventilator pressure or PEEP down this morning from 14 to 12. Also, Peter's nose tube was connected to a supply of special non-fat formula! (We tell Daniel that Peter is drinking milk through a straw in his nose.) Although the nurses had assured us that a patient could live and thrive for months on IV fluids only, it made us happy to know Peter was once again getting food in his tummy. Now that Peter has been put back on food, I gave the doctor some information I had received about non-fat breast milk for chylothorax babies. It can be obtained by prescription from the Denver breast milk bank, where they make it from donor milk.

Peter has been very active, wakeful and smiley the past few days. He loves to wiggle his arms and kick his legs as he watches his mobile or looks at our faces. Daniel has also recovered his health and spirits after having a short-lived cold last weekend. The chyle leak remains #1 on our prayer list.

A Note about Postings

2009-06-26T23:03:00.003-05:00

The waiting game continues. Every day there will likely be fluctuations in the chyle output and other little tidbits of information. I hope all the followers of this blog will understand that Betsy and I need to take it down a notch on the blog postings. Peter will be in the hospital for a long time and with little real change expected soon, daily updates would become a burden on us. So from now on, we will post a little less frequently; perhaps every few days and as news warrants.

About today I will only add that there is nothing really to report. Daniel and I stayed home together, because he needed a "mental health day." Daniel is having a bit of a rough patch emotionally, what with opa and oma (my parents) gone and no clear routine visible to him. Please pray for him too.

Waiting Game

2009-06-25T21:17:00.003-05:00

Too bad we didn't have a camera handy at the right time, but Peter did spend a considerable time wide awake and without the side-effects of semi-sedation visible in his face--much to our enjoyment. In fact, up until we left (around 3pm), Peter had received no sedatives apart from the small doses he is still getting for his general discomfort; meaning: he has been behaving for the nurses.

The doctors remain very unhappy with the continuing chyle leak. After a decrease over the weekend, the tracheostomy on Monday seems to have set off another enormous increase. On Tuesday, he put out 1,100 ml and on Wednesday it was just shy of 900 ml, practically all out of his left tube. These are gigantic amounts for a little baby. But Dr. Moga, one of the surgeons treating Peter, told us today that he does not want to try any more surgeries on Peter because he is not convinced he would have any benefit from it. It is, in effect, a waiting game. The chyle leak will have to clear up all by itself and all the doctors are willing to do at this moment is managing his fluid levels. Peter has unfortunately not responded to any treatment and this means that he will have to remain hospitalized for several more months. All we can do is hope that some rest from any procedures will again create a downward trend in the output of chyle--and pray.

Pictures!

2009-06-23T21:53:00.006-05:00

Hi Everyone,

Peter's mama again. Today we visited Peter in his new room, which has a large window with a breathtaking view of the parking garage opposite. Daniel explored the closet while we revelled in the enjoyment of seeing Peter's whole face. The chyle has fluctuated a little on its reducing trend, but overall Peter seems comfortable with the current balance of ventilator pressure and medications. He will still have a small feeding tube down one nostril for medications, but today the nurse let us take some "no tube" pictures before putting the new one in.

Tracheostomy

2009-06-22T17:51:00.002-05:00

Peter is out of surgery. We just talked to the surgeon, Dr. Soumekh, and he said that everything went fine. He did say that some damage to his trachea was observed during this procedure, resulting from having a tube down his throat for the past five weeks, and which will have to be monitored in the future. This is not currently a concern, as Peter will be in the hospital for a while yet.

Peter was moved to a friendlier, if somewhat smaller room today (PICU room 15). It has a window, so he can get used to a normal day/night rhythm. There was more positive news from the medical front: his chyle output was significantly less today. His right tube produces virtually nothing anymore (it has been very low for a number of days now) and the left tube is down to about 15 mls per hour or about half of what it has been in the last week. The nurse was quite optimistic about the latest chest X-ray. Peter is also a lot less swollen and just overnight his girth decreased from 41 to 37 cm.

In the near future, we will have to take a day out of our schedule and spend it learning how to take care of Peter's tracheostomy. The information we received about it is quite overwhelming and we were reassured that they will spend 6-8 hours one day soon with us teaching us everything we need to know so that we can be comfortable when Peter comes home (though we will receive in-home nursing care for a goodish bit even then). We try not to think about the enormous upheaval that moment would cause because it is still quite distant. Yet we do long for that day.

The many moods of Peter

2009-06-21T20:52:00.002-05:00

Hello everyone,

Peter's mama here again. Medically speaking there's not much to report today--Peter is about the same with regard to the chyle leak, etc. Tomorrow afternoon he is scheduled for his tracheostomy. The doctors will take the ventilator tube out of his nose, and instead his breathing will run through a stoma (opening) in his neck. I have mixed feelings about another hole being made in Peter's body and am immensely intimidated by the amount we have to learn in regard to caring for the breathing tube if Peter still has it in when he goes home. However, the advantages to Peter are many--he will be more comfortable without sedation and be able to move around more. All the doctors and nurses have been very positive about how much it will help speed his recovery.

Today the nurse described Peter as "feisty". Translated from nurse language this means that he put up a fuss when they had to do stuff like turn him, change his diaper and suction out his breathing tube. I have seen the pouty and offended expression on his tiny face when these things are being done. Eyebrows knit together in a deep frown, he glances over at the side of the bed where the nurse is standing to see if she is about to do any more unpleasant things to him. Luckily all the nurses we've met are good-natured souls who don't hold a patient's resentment against him.

But Peter has also discovered how to smile. Last week we caught him smiling in his sleep some, and today he had lots of wide awake smiles for us and for Michel's parents! (No one had better try and convince us it's only gas.) A smile really transforms his little face, which usually wears a rather thoughtful expression. This week we will try to catch it in a photo. After tomorrow we'll get to see his face without any more tape or breathing tubes!

No News Is Good News

2009-06-20T22:02:00.003-05:00

Sorry for not posting yesterday. We had a VBS closing program to attend at our church in the evening and didn't have the energy to post after that. There was really very little to report apart from fluctuations in the continuing chyle leak. On Friday, Peter put out about one liter of fluid (1,000 ml), which is very much. This afternoon, his right drainage tube was producing very little or nothing, while he had produced about 350 ml on the left by 2pm, so everyone is hoping that he will put out less than Friday. They are tweaking his ventilator to try and fight the chyle leak. Doctors and nurses are overall fairly satisfied with his health apart from the fluid drainage. His chest X-rays look better and so does his blood pressure and just general looks. Let's pray that some real progress can be made soon. It is a wearying process.

Some Good News

2009-06-18T21:49:00.004-05:00

At the end of a very tense day, we have some good news to share. Today was the day for the heart catheter and everyone was holding his breath, fearing that some irreparable or incurable problem would be found that is responsible for Peter's chyle leak. The good news is that such a problem was not found. In fact, it was quickly established that, apart from the improvised connections of the pulmonary veins to the heart (his original defect), which are also working satisfactorily, everything looks fine, and no further blockage or problem was found.

The downside of this good news is that the chylothorax remains a complete mystery. The leakage has remained stable, at about 400 ml or so per day. The doctors are not giving up hope and will continue to try various treatments. The first thing they have already done, at our request, is to restart Peter on the octreotide, since Dr. Baker agreed that the suggestion of two nurses that the increased chyle leak may be related to the decrease in octreotide is a reasonable hypothesis.

The next step may seem a little strange at first: a tracheostomy. This coming Monday at 4pm, Peter will undergo another operation (his sixth) to provide a breathing opening into his windpipe. Although this is not directly related to the chyle leak, it will allow the breathing tubes to be removed from his nose. The direct result will be that Peter will be more comfortable and therefore need a lot less sedation. Peter will continue on the ventilator. The doctors want to use the pressure of the ventilator to combat the chyle leak (by reducing space in the chest cavity and thus denying the chyle room to leak in). This is a long-term treatment (several weeks at least, possibly months), hence the tracheostomy. Everyone keeps telling us that children improve rapidly on a "trache."

After that and in addition to that there will probably be further treatments (a chemical pleurodesis), but right now we are just happy that nothing devastating was found. Please continue to pray for Peter, that we might soon get out of this holding pattern, and pray for patience for us.

Holding

2009-06-17T22:42:00.003-05:00

Both of us got to hold Peter today. It was a wonderful treat to be able to do so. Very little else can be reported. The chyle leak continues unabated. Tomorrow, Peter will receive a heart catheter. Please pray that the results will show something definite that the doctors can use to figure out the reason for the chyle leak.

Key Lime

2009-06-16T23:40:00.003-05:00

It was less of a sad day for us today, though there is no news different from yesterday. We talked to Dr. Baker, the cardiologist, about the upcoming heart catheter that will be done on Thursday afternoon. He told us once again that the doctors have no treatment alternatives for Peter's ongoing chylothorax because they don't know why that condition exists. The heart catheter is a last resort: they hope to find a mechanical problem (blockage) in the pulmonary veins that would explain it. They could operate on that with a reasonable hope to take away the underlying cause for the chyle leak. But Dr. Baker warned us that a clear outcome is somewhat unlikely and on the other hand may confirm a deep fear: that Peter has pulmonary vein stenosis, a congenital and irreparable deformation of the pulmonary veins. We had a good talk with him about Peter's further treatment and were even able to educate him about fat-free breastmilk, a topic he took an apparent interest in.

It was also a Key lime green day, at least for Betsy. She got to hold Peter in a rocking chair and the nurse (Gaylene) remarked that the blanket on Peter matched Betsy's shirt: both were Key lime colored. To which Betsy was able to add, "Even my lunch yogurt was Key Lime Pie flavored." Thus, Gaylene decided that Key lime should be the theme of our blog for the day.

Comfort

2009-06-15T21:05:00.003-05:00

This may be a curious title for a blog posting but it is a topic that has been on our minds these past few days. It was not just that we were too tired yesterday to post, though we were. (That and the fact that our internet was down all evening.) We have also been at a loss what to tell everyone because frankly Peter is not doing well.

On Sunday, we discovered that the chyle leak has picked up again, even on the left side (the surgery site). He is losing about 30 ml of fluids per hour (500-700 ml per day), quite a lot for a little baby, which means we're back to square one on the chylothorax. Despite the 90% success rate for patients overall, the pleurodesis has not worked for Peter. His general health and feistiness have not taken a nose dive by any means, but it is quite bad news because there are no real alternatives to treat the chylothorax. Dr. Overman has said that he is suspecting that the pulmonary veins may be blocked or malformed after all. On Thursday they are going to do a heart catheter (another surgical procedure) in order to get an accurate measurement of the pressure in the pulmonary vein. All the other tests speak against the existence of a blockage in the veins. Please pray that there is no blockage, because in that case little can be done for the patient.

In the words of one of the nurses, Peter has a lot on his plate. In addition to the chyle leak, he has been dealing with another pneumothorax (basically an air bubble trapped in the chest cavity) and he is still retaining a lot of fluids, including a lot under the skin. One bright point today was the news that Peter is peeing more and losing some of the fluids. We do covet your prayers that some way can be found nonetheless to stop the chyle leak soon.

It is a particularly tough time for us now. We are trying to spend as much quality time with Peter as possible while trying not to be overcome by fears and tears. So we seek comfort. In the words of the Heidelberg Catechism, it can be found only in the knowledge that we belong to our Savior Jesus Christ and in His promises to His people.

Less Chyle

2009-06-13T22:33:00.002-05:00

As we arrived in Peter's room today, we found Dr. Overman finishing up the changing of Peter's chest bandage. He told us that the chyle leak on the left his dried up. Right now they want to work on the fluids Peter is retaining. Once that clears up, he said he believes they will have to do another pleurodesis (operation) on his right side. This is going to be a very long haul: we are likely looking at August already before Peter is anywhere near likely to come home. Please pray for us that we may have patience and strength to deal with this slow movement.

Peter had a relatively calm day today--but most of that was induced by medication. First he received a sedative when the dressing on the chest was changed, and then he made a big fuss later on and the nurse had to make him calm down. He remains quite bloated because of the fluids he is retaining.

No News

2009-06-12T23:04:00.001-05:00

There is really not much to report today. Peter spent a good time awake so that his grandparents (oma and opa) could also spend some quality time with him. He is retaining a little more fluid, so he is a little puffier. Drainage on his left side (where the operation took place) is very little and seems to be diminishing on the right too. Let's pray that this is a sign of progress.

A Little Puffy

2009-06-11T21:57:00.004-05:00

Peter's grandparents (Oma and Opa) went to see him for the first time today. They arrived from Holland last night.

This evening, the nurse on duty with Peter called us to let us know how happy she was with Peter today. He slept for a good deal of the day without any medication, which is a good thing. All his "numbers" (all the measurements they take) were looking better by the end of the day. He has no fever (somewhat surprising after a pleurodesis). The chyle leak is less than before the operation but it is still continuing. Peter is retaining some fluid, making him a little puffy.

Stable and comfortable

2009-06-10T21:49:00.003-05:00

After a helter-skelter two days, Peter enjoyed a very calm day today. Cardiologist Dr. Baker came by and said he was impressed how well he responded to the pleurodesis. He had expected him to have a much higher fever and be much sicker in general. In fact, Peter did not seem much different to us at all. The chest output has diminished greatly and we're hopeful that this will be the beginning of the end of the chyle leak. Let us pray that this is so. It is by no means certain.

The doctors expect that Peter will need to be on the ventilator for several more months, at least part of the day (esp. at night), mostly to help counteract the chyle leak (through the pressure of the ventilator on the lungs). If the leak stops soon, they will consider a tracheostomy (moving the breathing tube from his nose to a small opening in his throat/neck). This sounds somewhat scary to us but it would make Peter more comfortable and he would be able to go home with that (they would probably leave the tracheostomy in for about one year).

Peter spent a good time during our visit awake. As usual, he looked around eagerly at anything other than the boring ceiling: his mobile, his parents, a piece of cloth with interesting shapes and colors. Tomorrow, we will introduce him to his grandparents (oma and opa), who arrived from Holland early this evening.

Four weeks, four surgeries

2009-06-09T20:59:00.002-05:00

Hi everyone,

Once more an update from Peter's mama. The hospital phoned while we were eating breakfast this morning with news that the drainage from the left side of Peter's chest had reached dangerous levels overnight, so the doctors had decided to try another treatment for the chylothorax problem. This was a surgical procedure called pleurodesis. We had been told about this treatment when the chyle leak first occurred. They make an incision between the ribs and irritate the chest wall and surface of the lung with a piece of gauze, of all things, to encourage the surfaces to stick together, sealing up the space in which the fluid was collecting, and thereby cutting off the leak. Sounds unpleasant, doesn't it?

However, Peter could not continue in a stable condition while losing all that fluid. He was wheeled into surgery about 11 a.m. and got through the procedure well. The surgeon was 'cautiously optimistic' that the leak would clear up within several days. They only did it on the left side. The surgeon told us to expect some edema (retention of fluids) and swelling for a while. We were told that this procedure would make Peter sicker in the short term in order to make him well in the long term. Peter is still receiving the same medications--octreotide for the leak, plus two diuretics and morphine when needed. (I think this is all--do you notice the good news, that he isn't on heart medication anymore?)

While in the waiting room I got to talk to another mother whose one and a half week old son was on ECMO and had reached the changing circuits stage. She seemed jittery about it and it somehow helped my own jitters to encourage her about how smoothly it was likely to go. (I talked to her again later--it went fine!)

After the surgery Peter was well enough (or stoned enough) to enjoy a visit from the occupational therapist, who gave him a gentle massage.

Plateau

2009-06-08T20:50:00.006-05:00

Today was hard for us because there has been no improvement in Peter's chyle leak--in fact, it has gotten worse rather than better over the past couple of days.

We talked to the cardiologist, Dr. Baker, on the phone this morning. He said that he was disappointed to see the chyle leak getting worse. For one thing, Peter will have to remain on the ventilator for much longer than anticipated because the doctors want to be able to put pressure in his lungs to counteract the leak. Instead of being weaned off the ventilator by early this week, Peter will have to remain on the ventilator for several more weeks.

Getting rid of the chylothorax is really the crux of the whole situation. It is creating instability in his cardiovascular system. His heart rate and blood pressure are being affected by the enormous quantities of fluids he loses (though he is given fluids also). In view of these developments, Dr Baker suspects that this will unfortunately be one of those cases where treatment will take a long time (weeks or months rather than the average 10-14 days). All of this is not to say that Peter is rapidly deteriorating or even doing very poorly. He continues to have normal sleep/wake cycles, and enjoys looking at his mobile or sucking on our fingers when awake. He looks at our faces intently when we talk to him. The doctors and nurses keep telling us that there have been patients much weaker with this kind of condition who have made a full recovery. But it is nevertheless discouraging for us to realize that he will almost certainly remain in the hospital into July, possibly beyond.

Finally, we were also told that the CT scan performed on Peter's brain last week did show evidence of a lesion. The doctors do not know whether this means he sustained any brain damage, nor do they know when the lesion occurred (pre-birth, during birth, while on the ECMO), but they can tell it is an old, inactive lesion. It means that Peter will have to be referred to a neurologist at some point and be tested for neurological damage. Since the doctors continue to call his behavior "appropriate" for a child his age, there is good hope that the lesion has had no lasting ill effects.

We would much appreciate your prayers as we contemplate the lessons God is trying to teach us in this. We were fortified by the words of David in Psalm 62 which our friend Jay (an elder in our church) shared with us during a visit today:

For God alone my soul waits in silence;
from him comes my salvation.
He only is my rock and my salvation,
my fortress; I shall not be greatly shaken.

Quiet Day

2009-06-07T22:21:00.004-05:00

Peter had a relatively quiet day today. He slept for quite a bit but was also calmly awake for some of the day, although he did have to be given some morphine when he would not settle down after being turned by the nurse. His heart rate has improved a little (about 135bpm) but the chyle leak persists unabated. Please pray that this situation will resolve itself soon. An X-ray showed that he has some trouble with air trapped in his chest cavity (pneumothorax), something that happens quite commonly with patients like Peter and is a short-lived phenomenon.

Rockabye Baby

2009-06-06T21:38:00.005-05:00

Today was a very good day, despite the sudden cold and rain that came down on Minneapolis. Betsy got to bathe and hold Peter for the first time!

Of course, many tubes are still attached and we are still quite a way from taking him home, but it was great to take this step. Since they had put in the BROVIAC catheter yesterday, they were able to remove another arterial line, so losing one more tube. On the whole, Peter was doing about the same as yesterday. His heart rate is still a little elevated (around 150bpm) and blood pressure is a little soft (about 65/35) but that is not unusual for a child with a chyle leak. He has to take synthroid for a while to compensate for low thyroid levels. The doctor explained that that is a temporary side-effect of the chyle leak because the thyroid needs some of the protein that is being lost as a result of the chylothorax. We weren't able to find out how he is doing on the leak; probably about the same, or a little better--because he wasn't being moved about so much today.

Despite the desire for calm, the nurse (a South African lady with whom we can speak Afrikaans/Dutch) said that Peter was so naturally calm today that she thought it would be alright if Betsy held Peter in a rocking chair. So here is a short (if somewhat blurry) video of the moment.

Photos have been updated on the Picasa website too.

Catheter

2009-06-05T13:09:00.004-05:00

The surgeon just came and told us that the procedure went really well. He was able to put in a catheter that has two separate entry ports, something they were afraid would not be possible because he is still such a little baby. This two-port solution is actually very helpful because the octreotide (which fights the chyle leak) loses some of its effectiveness if it has to go through an ordinary, single-entry catheter mixing with other medications.

Peter was asleep when we arrived at the hospital. The nurse said that she had not given him anything to make him sleep. The anesthetist commented that such natural naps are very good for the brain; it helps babies get into a normal pattern of wakefulness vs. rest and recharge. Of course, he must also be acquiring his parents' susceptibility to Murphy's Law because he woke up about 10 minutes before they had to anesthetize him... Wide awake and ready to play and then two little shots and he was off to Sleepy Town again. Oh well.

Rough Morning

2009-06-04T21:23:00.004-05:00

Peter was asleep during our entire visit. He had had a rough morning. Today, he was scheduled to have a CT-scan (a scan of the brain) as a routine follow-up to the ECMO treatment. Because ECMO has a risk of blood clots and hemorrhaging, they always want to make sure the brain has not received any undetected damage during treatment. Well, the scan went fine (no results yet), but apparently Peter did not like the trip over there. He made quite a fuss. What is more, his oxygen saturation went way down during this little procedure and Dr. Overman decided to replace his breathing tube just in case there was some sort of blockage in it. So, Peter made a fuss about that too and had to be heavily sedated. Ergo, we did not see his eyes open during our entire visit. Here is a picture of Peter today.

His chyle leak was actually a little worse today (but not hugely). The nurse said that at this stage of the treatment that means nothing. Tomorrow, he will be undergoing surgery again to put in a new (semi-permanent) catheter.

And here's a picture of the two boys (taken yesterday):

All Quiet on the Western Front

2009-06-03T20:02:00.003-05:00

Not much change with Peter. He underwent another CPAP test, which went very well indeed. Even while asleep, his breathing remained within acceptable limits, so the nurse suggested that they increase the tests to twice a day for 2 hours. The dose of octreotide was increased again; the chyle output is slowing down a little, but not enough to be really significant. Peter slept for most of our visit.

Occupational Therapy

2009-06-02T20:17:00.005-05:00

Hoping to recover something of our afternoons, and to let Daniel have a decent nap, we tried to get to the hospital very early today. We aimed for 9am and made it by ... 10:30am. Well, such is life. We're getting better at it, though.

We had an interesting visit with Peter, even if we did not necessarily learn a whole lot of new things. We watched Peter being given some exercise. An occupational therapist came by and massaged him, basically. It was quite fun to watch. The therapist also taught us a good technique to calm Peter. Rather than stroke him on the head, which apparently excites infants because it stimulates a lot of nerve endings, it is best to cradle him tightly, with one hand on his cranium and one under his feet, allowing him to push rather firmly on your hands. It seems to work reasonably well.

There is not much news on the chyle leak front. They increased the dose of the octreotide (the medication which is supposed to help stop the leak) to 12 mcg/kg. It seems that the output is decreasing a little bit in volume, but not significantly. They did another CPAP test today, but it only lasted 1.5 hours because he fell asleep and lost a lot of volume in his breaths at that moment. The nurse was uncomfortable with it and stopped the test. On the whole, he did not do badly, though.

We got to see both the cardiologist, Dr. Baker, and the surgeon, Dr. Overman. They talked to us about his progress. They were both very pleased about the health of his heart. Dr. Baker said that, obviously, Peter's heart looked abnormal on the ultrasound, because the veins were connected in an unusual way in the surgery, but that it apparently works fine. The doctors are also happy with his X-rays, which show a loss of edema (fluid retention).

They also explained the need to put in a semi-permanent catheter (a BROVIAC) in his chest for intravenous medication as well as drawing blood for tests. This will happen on Friday and will need to take place under complete anesthetic. (Yes, Peter's third surgery...) But the need was clearly there because they can't keep improvising the line they currently have. Peter will likely need an IV for several more weeks or months to come.

Instead of a photo update about Peter, here are a few shots of the pleasant rooftop garden and play area where we enjoy many of our lunches and where Daniel can play.

Breathing lessons

2009-06-01T21:29:00.009-05:00

Hi everyone,

Sorry we were too tired to post yesterday. Today you are hearing from Peter's mama. We got to the hospital earlier today, part of a master plan to get Daniel home in time for his afternoon nap. When we arrived a technician was in Peter's room doing an ultrasound of his heart. She had wheeled the machine right next to his bed. He was sound asleep (sedated) while she moved the sensor all over his chest and tummy to get different angles. I was able to watch an image of his heart beating! The doctors will review these images to see how the repair of Peter's veins is working out.

The chyle leak is still continuing, so Peter is only getting IV fluids for nourishment right now. He's also getting a medicine to help the situation. This medicine dilates the blood vessels, so Peter is much pinker today. If you make him mad (such as when a nurse suctions his breathing tube--he hates that!) he turns a deep tomato red--no exaggeration. He cries his eyes out but can't make any noises because of the ventilator tube between his vocal cords.

In his calmer moments, Peter seems to enjoy looking at a few picture books we bring from home. We can see his eyes move from one picture to the next, staring intently, then looking away when he's ready for us to turn the page.

Today they took a first step towards taking Peter off the ventilator, that big hose coming out of his nose in the pictures. They conducted a C-Pap test where they turn off the ventilator for a certain amount of time to allow the patient to practice the act of breathing. If you are on a ventilator for a while, the nurse explained, the muscles that help your lungs expand and contract get weak, so patients need these practice sessions to get back in shape before the ventilator is discontinued altogether. We are told that he did pretty well on his first test of 2 hours, and he will probably get another 2 hours of practice tomorrow.

We had a pleasant lunch with our friend Kristen and two of her boys. And Daniel was praised by one of the nurse practitioners as being the best-behaved three-year-old visitor she had ever seen in the intensive care unit.

Baby Steps Forward

2009-05-30T21:24:00.002-05:00

Peter took a few baby steps forward again. He no longer requires nitric oxide and the catheter for his urine was also removed. Fewer tubes! His chyle leak continues unabated, however, and Dr. Overman said that if the volume of fluid coming out his left chest tube does not diminish by midnight, Peter will have to be taken off the feeding tube (enteral feeding) and be fed intravenously again. Please continue to pray for us and for Peter about this situation.

Peter spent a good time awake today and we were able to spend some quality time with him. Now that he is being weaned off more and more medications, Peter is more alert when he is awake. Betsy got to change his diaper today, something few parents really revel in, but when you're in our situation, it's a kind of special treat to be even in a position to do it at all. Daniel also got to touch his brother for the first time and he was quite thrilled by it. Can you imagine: until today, he had never had the opportunity to touch Peter?! Daniel is definitely getting more used to the idea of having a real baby brother.

Two photos

2009-05-30T18:45:00.006-05:00

This one was taken today:

Finally, Peter is off Heparin (a blood thinner, which meant we weren't allowed to cut his fingernails). But now: no more glamour nails.

One Step Forward, One Step Back

2009-05-29T14:52:00.004-05:00

Today, we heard a lot of encouraging news. Peter's heart rate is more normal (about 130bpm) and the blood pressure seems better too. The nurses have found that the primary method of measuring his blood pressure is not as reliable with him, leading to lower readings. A secondary method appears to be more accurate and it shows his blood pressure at about 70/50, which is quite acceptable. Doctor Moga, one of the surgeons, removed two of the four tubes in his chest, and they have further reduced a number of medications. He is now almost completely off morphine; he only receives it incidentally now rather than on the constant drip, and he has been started on methadone. Peter has also been further weaned off the nitric oxide.

There was, however, one very annoying development about which we covet your prayers. During the night, a milky fluid started leaking from his chest cavity through one of the two remaining drainage tubes. This is called chyle and is a mixture of lymph and free fatty acids. This sort of leakage out of the lymph nodes into the thoracic or abdominal cavities is quite common with children like Peter who have had some trauma to or blockage of the pulmonary veins or arteries. Essentially it is a bad reaction to fat in the diet, though Dr. Overman explained that chylothoracic leaking is not at all well understood. Since it is linked to certain fats, the primary method of treating it is to eliminate these fats completely from the diet, but other things may need to be tried too if the leakage does not stop (which may include medication or even surgery).

For the next three months at least, Peter will have to remain on this fat-free diet. This means that he is not allowed to have breastmilk but will have to be fed with a formula (which includes some other types of fats) for three months. (It is possible for Betsy to process her milk and skim the fat off, but we will have to look into this.) Also, until this situation is resolved, Peter will not be able to go home, though Dr. Overman said that Peter is likely at least two weeks away from discharge anyway, because he is still on the ventilator. Perhaps the chyle leakage will be resolved by then. Please pray that this new problem will be resolved soon.

Despite this disappointment, we do hang on to the thought that Peter is doing better day by day. The chyle leakage is not unexpected and should have no impact on his treatment and recovery; it is mostly a nuisance.

Turning a Corner

2009-05-28T17:39:00.005-05:00

We left the hospital a little worried on Wednesday afternoon when we learned, just before leaving, that Peter's MRSA screen had come back positive. We didn't know much about this bacterium but the hygiene restrictions placed on staff dealing with Peter were a little perturbing. We were reassured this morning that it probably posed no danger to Peter or anyone else. Right now it looks like he is merely a carrier of this thing--like about 30% of the population--without showing any symptoms. Visitors just have to make sure they thoroughly wash hands after visiting with him, but no further restrictions have been placed on us (though staff have to wear gloves and gowns when working with Peter).

We talked to one of the cardiologists today and she said that Peter is making quite rapid progress. Her actual words were, "Peter really turned a corner this week." His heart rate is getting more normal and his blood pressure crept up to about 65/45 today. He is also being weaned off a number of medications. That includes the morphine he has been on. This might be the hardest for him to get off because morphine is habit-forming. Peter is getting more actual food (Betsy's milk) through a tube in his nose and once the current medical intravenous fluid bag runs out they will not reorder it. The levels of oxygen and nitric oxide in his ventilator have also been lowered and the drain tubes are producing less and less fluid. The doctors are hopeful that the tubes will be able to come out soon and that the ventilator might not be needed much longer either. They are hesitant to give us any actual dates and predictions but as a rough estimate we have been given about 7 days until Peter might be able to leave ICU and go to the normal pediatric ward. Once he makes it to that department, he could be home within another week.

Over lunch this afternoon, we read Psalm 112 and while it did not apply specifically to the situation of a sick child in the hospital, I found it heartening to read of the comforts afforded to believers. What is a believer promised? "He will never be moved (...) He is not afraid of bad news; his heart is firm, trusting in the LORD." We left the hospital feeling a lot more comforted than yesterday.

Elvis Has Left the Building

2009-05-27T20:57:00.006-05:00

Well, my mother-in-law has anyway. Anita has been good to us by staying on an extra week and we don't know how we're going to cope without her... Peter seems to be doing well. His heart rate is better (150s) and his blood pressure is also a little better (60/45).

Here are a few pictures:

Grandma with Peter

Mama, big brother Daniel and Peter

And here a brief video from this afternoon (if you don't mind the Dutch):

Successful Surgery

2009-05-26T18:20:00.002-05:00

At 3:50pm, Dr. Overman (the surgeon) came by and told us that surgery went well. The large tubes that had connected Peter's heart with the ECMO machine have been removed from his chest. They also suctioned out 30cc of clear fluid in his lungs and Dr. Overman was actually able to close the wound. Before the operation, they had not been sure whether they would be able to do that. It depended on swelling and fluid in the chest cavity. It's very good that Peter doesn't have to have another surgical procedure just to close his chest. Peter is doing well and Dr. Overman said his heart looked good. Peter's heart rate is slightly elevated (about 180bpm) and his blood pressure is a little "soft" (low) around 55/45, but that is not unusual after an operation. This is very good news. (By time of posting, Peter's blood pressure was up to about 63/50 and his heart rate was about 170bpm.)

Surgery at 1:30pm

2009-05-26T10:54:00.003-05:00

Please pray for Peter. At 1:30pm he will be undergoing his second open-heart surgery in his brief life. True, it is only for removing the ECMO tubes and nothing is technically being done to his heart, but still, this is not nothing.

And now for those tubes...

2009-05-25T17:48:00.005-05:00

We immediately went to the hospital after we heard that Peter was off ECMO (see previous post). We stayed with him for about 3½ hours. He slept nearly the entire time--of course, he woke up at 3:40pm, a few minutes before we wanted to leave, so we stayed a little longer!

Peter is doing pretty much the same off ECMO as he was on it. The tubes are all still in place; they just cut them off about 5 inches out of his chest and wheeled the machine away. Just in case, they will be monitoring him for about 24 hours and they could reuse the tubes in case he should need to go back on (but he won't need to!). Tomorrow morning, the doctors will assess the situation and if all looks okay, they will take him into surgery in the afternoon and remove the arterial and venous tubes, which are actually stitched in place inside his chest. He will then still have drainage tubes coming out of his chest. The doctor did decide to insert an extra drainage tube in his side, which seems to be helping. Everyone seems to be happy with the volume of fluids he is losing right now, though this is with considerable help from diuretics (Lasix and Diuril). The ventilator is doing a little bit more work at the moment, and he will remain on that for quite a while yet (at least a week, we guess).

We were very pleasantly surprised by the move away from ECMO. Apparently, it had become a choice between "changing circuits" again or just taking him off, because the ECMO was getting old again and eating up platelets. So, here we are and we're very happy about it.

Off ECMO!

2009-05-25T11:52:00.003-05:00

We were still getting ready to leave for the hospital when the duty nurse called us. She informed us that a little after 11am this morning, Peter was taken off ECMO. Yay! He is doing well at the moment. Please pray that Peter will continue to be stable and will gain in strength.

Comments

2009-05-24T17:11:00.002-05:00

By the way, I have adjusted the comment moderation settings for this blog. Turns out they were set to allow only comments from registered users. Now anyone should be allowed to post.

Baby Snores

2009-05-24T17:11:00.000-05:00

Sorry to keep everyone waiting but I was just too tired to post last night. And that despite very good intentions we had yesterday. For one, we thought we were smart by arriving at the hospital early (well, before 11am...) hoping to spend some more quality time with Peter. But Murphy's Law kicked in. The doctor had changed the bandage on his chest earlier in the morning and they had to sedate him quite a bit for it. So, when we arrived, Peter was completely out of it. After watching an enormously stoned baby for about half an hour, we retreated to have lunch.

The nurses told us that they are still working on the fluids. He is peeing quite a bit but they want to increase that even more. On Saturday, the ECMO was turned down to 40% and the pressure on the ventilator was increased a little, in the hope that this would help the lungs expel some of the excess fluid. His dose of diuretics was also increased. Interestingly, Peter is snoring and this is a good sign. It means that there appears to be room between the ventilator tube and his windpipe, suggesting a loss of fluids (despite what the machines are measuring otherwise). He is also blowing lots of bubbles: more fluids leaving his body.

On Sunday, after going to church in the morning, we went to the hospital. The ECMO flow was now down to 30%. One of the nurses told us that the doctors have a tentative plan to reduce the ECMO to 20% on Monday, then to 10% overnight (Mon to Tue) and then have an evaluation on Tuesday morning. If Peter does well on blood pressure etc. then they will go ahead and take him off the ECMO. This does not mean that they are not still aggressively trying to deal with the fluid situation, but they are now reasoning that he is doing quite well despite this. In the end, they may prefer trying to control the fluids with the ventilator alone. The ECMO is in a sense a mixed blessing: it does provide his body with the needed rest, but it also has a number of risks, one of which is that it tends to make it harder for patients to get rid of fluids.

During our visit, Peter was very drowsy. When we first arrived, he was fast asleep. The nurses had told us that they had changed his morphine from periodically to a constant drip, which makes him less active. So, we decided to have lunch first. After lunch, we returned to find Peter wide awake and again taking a great interest in the mobile. He also looked at our faces very intently and seemed to be generally very happy to be awake. After about 20 minutes, we inquired how long he should be awake and one of the nurses (Andy) said he was getting ready to sedate him again because he thought Peter was wearing himself out. Betsy suggested that if we just stood back, he might drift off to sleep on his own, without chemical inducement. This proved to be the case: within five minutes, he was fast asleep again.

All in all, despite the little real time we have been able to spend with Peter, we are quite happy. The little time was quality time and there does seem to be a hopeful prospect for him soon.

Fluids

2009-05-22T18:55:00.006-05:00

We learn quite a bit about patience in this process. There was no real medical progress to report during our visit today. The flow of the ECMO remained the same and Peter was doing well generally. Yet the doctor remains unhappy with the fluids visible on his lungs in repeated X-rays. When I spoke to Dr. Overman today he suggested they may put in a tube into the area to drain these fluids, but he did not sound convinced of this solution and so they have been putting this decision off. In the meantime, he has put Peter on yet another diuretic drip and increased his urine flow. The ECMO nurse said that we should not expect any change in the ECMO treatment until Peter’s fluid problem is under control. It seems likely that we will be in this holding pattern for the weekend. One positive piece of news we heard is that the ECMO is providing slightly lower gas levels for Peter's blood and this may mean, according to the ECMO nurse, that the fluid is reducing anyway and that Peter's lungs are taking over some of this function.

Despite this somewhat disappointing news, we had a good time with Peter at the hospital. He was very wakeful and he has been enjoying the mobile that a nurse hung up in his room. Since he was turned the other way today, we had to move the mobile too because when he woke up, he was visibly looking around for it (and could not see it). Once it became visible again, he was mesmerized by it. We do find it a little exciting that they have started to feed Peter his mother's milk through a tube in his nose, though they continue to also feed him intravenously.

We have been blessed with visitors and good gifts today. Two families dropped meals off today and we also saw our friend Kristen and our pastor at the hospital.

Here is a short movie of Peter and Betsy at the hospital today:

At Ease

2009-05-21T21:52:00.002-05:00

No progress today, unfortunately. Changing circuits apparently causes the patient to retain fluids and Peter has to get rid of the excess fluid before the doctor dares move any further in weaning him off the ECMO. He had put him back on a constant diuretic rather than the 6-hour dose, with the expected result: he produced more in 8 hours than in the entire preceding 24 hours. X-rays of his lungs revealed that quite a bit of the fluid is trapped in or near his lungs and this needs to improve. The flow of the ECMO remains at 50ml per kilogram.

The nurses assured us that they thought he was doing splendidly. Nothing out of the ordinary and making good progress. Peter is the darling of PICU, certainly of the nurses doing duty with him. Interestingly, we were told that he is not the only patient in the unit at this very moment who is being treated for “total anomalous,” as they call it for short.

Today, we finally managed to remember to bring the "get well scroll" that children from our church made for Peter, and with the kind help of a nurse, it got hung up in his room.

Amidst the emptiness of our lives—the emptiness we feel every time we leave the hospital, the emptiness of Betsy’s womb, and the emptiness of the crib that awaits him in our house—we are strengthened by the assurance of God’s mercy, and His particular mercy on children of His Covenant. There are numerous passages that show the special regard He has for the children of believers, e.g.: “But the steadfast love of the LORD is from everlasting to everlasting on those who fear him, and his righteousness to children’s children, to those who keep his covenant and remember to do his commandments” (Ps. 104:17-18), “Praise the LORD, O Jerusalem! Praise your God, O Zion! For he strengthens the bars of your gates; he blesses your children within you” (Ps. 147:12-13), “But Jesus called them to him, saying, ‘Let the children come to me, and do not hinder them, for to such belongs the kingdom of God” (Lk. 18:16), etc. etc. In mercy He deals with us.

Changing Circuits

2009-05-20T22:27:00.001-05:00

Today, Peter had to be put on a new ECMO machine. They called that “changing circuits.” It was explained to us that the ECMO gets dirty on the inside after a number of days and does not function as well anymore. The machine was apparently starting to consume platelets and other blood products, which is not a good thing for Peter, of course, because it means his blood cannot clot as well. So then they pull out another ECMO and switch him over, and clean the old machine. Unfortunately, this meant that we had a lot less time to spend with Peter. The whole switchover is not supposed to last longer than about 30 minutes (most of which goes into preparing the new machine to all the right settings), but for some reason they had not even started the switch after the forty-minute lunch we had decided to take once they warned us of the impending switching procedure. Despite this interruption we had a good time with our little boy. He woke up for a little bit and also tolerated the “changing of the circuits” quite well. The ECMO has been reduced to about 50% (actually the number seems to stand for 50ml per kilogram, but it corresponds roughly to a percentage, so that’s what they always tell us). The ECMO specialist told us that the actual period during which Peter was not being supported was 38 seconds and that his vital signs (heart rate, blood pressure, oxygen saturation) did not waver during this time.

Both midwives came by (both Rachael McGraw, our primary midwife, and Maureen Dahl, the secondary one). They were unfortunately not able to see much of Peter because of the ECMO switchover, but we had a good time together over lunch. It was VERY hot today: around 95 degrees Fahrenheit. There was also a very strong wind. A friend of ours, Carmen, had brought us a picnic lunch in the morning and we took it to the hospital.

We also talked to the surgeon. He is the one responsible for the ECMO treatment (and for taking Peter off of it). He said that he was reasonably optimistic about Peter’s health. The lungs still appear somewhat abnormal on X-rays but this is apparently not unexpected in these cases. Hopefully, Peter can be taken off ECMO in a few days. When that happens, Peter will be on a ventilator for a while.

I am very grateful that Betsy is recovering so well. If you think about it, it is almost miraculous that she is almost completely healthy again. She also needed little extra rest even from two days after giving birth, and she has shown few signs of fatigue. A little bit of ibuprofen pretty much gets her through the day as usual—or whatever passes for “usual” at the moment. We were also in church “as usual” on Sunday evening (we were in the hospital in the morning), and the more I think about it, the more I am struck by a comment that our friend Christy made on her blog: “Yes, really!” Betsy really was in church after four days! Do not let us forget those blessings.

Tuesday Visit

2009-05-19T21:41:00.002-05:00

Not much to report today (and sorry, no new pictures). Betsy and I went to see Peter in the early afternoon. I dropped Betsy off first while I ran an errand at the University and then met up again around 1:30pm. Our pastor, Jim Sawtelle, also came by for a while to visit with us. The ECMO has been dialed back a little further, now to 60%, and he is no longer receiving constant diuretics, but instead only once per 6 hours. They are worried that these high doses might damage his kidneys. Peter was asleep during the whole visit. I guess he had to rest up after his active day on Monday. The doctors may try to take him off the ECMO completely some time later this week, but there are no details yet.

This is not an easy time for us and yet we seem to do it. You have to; it's your kid. Betsy has been holding up well, though it's certainly much harder for her than for me. Not only is there the physical bond between mother and child that pulls harder on her, this is also very fresh after giving birth (he's not a week old yet!) and she is still recovering physically and hormonally from that event. We feel strongly supported by everyone: family, friends, the church, and also the people at the hospital. We do also seek comfort with God. I know I am not such a giant in the faith as to be able to always do that effortlessly but He remains our Rock and our Salvation. Jim read with us a portion of Psalm 139: "In your book were written, every one of them, the days that were formed for me, when as yet there was none of them" (v. 16). These verses remind us that God is in charge of all things and that, even if things do not go according to our plans, nothing can happen apart from His will.

Eyes Open

2009-05-18T17:08:00.002-05:00

Peter had a good day today, especially for us. Not only is he doing well with the ECMO at 70%, which means his own heart is doing 30% of the work, he was also wide awake for a whole hour during our visit! Eyes wide open and really looking at us. Betsy also got to wash his hair, change his diaper and wash him off a little. For the first time, we had the feeling that we had a real child. It looks like they want to slow down the transition off the ECMO, so he could be on it for a few more days.

Betsy was able to talk briefly with one of the cardiologists. According to this doctor, their greatest concern is the possibility that Peter's pulmonary veins will not be able to function properly, i.e. not be able to take the oxygen from the lungs to the heart. That would be a severe handicap about which nothing could be done, except lots of medication. Peter is currently already receiving these medicines, but they remain hopeful that they will be able to wean him off those and that he will be able to breathe on his own. The doctors are no longer really concerned about his heart.

Peter's Progress So Far

2009-05-17T22:03:00.002-05:00

Peter's operation took place last Friday. First, he was moved from NICU (Neonatal ICU) to PICU (Pediatric ICU) and he was prepped for the operation there while we (Michel, Betsy and our pastor Jim) watched. Among other things, they had to place different tubes. Our pastor, Jim Sawtelle, spent a good five hours with us in the hospital and he was a great comfort. The midwife who delivered Peter (and Daniel too!), Rachael McGraw, also dropped by for a while. Peter was taken to the operating room around 2 o'clock. We were shown to a waiting room, but we actually went to have lunch instead.

Naturally, we talked to the doctors, both before and after the operation. The cardiologist (not the surgeon, obviously) came out during the operation a few times to discuss progress. The actual procedure (moving the pulmonary veins so that they would enter the heart in the right place) only took about 1 hour, but they needed a lot of time to stabilize him. And then afterwards, they observed him for an hour or so as they took him off the heart-lung machine. In the end, the doctors decided that they were not entirely satisfied with the way he functioned on his own and they decided to put him back on it. That way, his heart and lungs can have a rest while Peter recovers from the operation and gets some strength.

After the surgery, the surgeon told us that the procedure as such had not been very hard. There was more room to do it than they had anticipated. The doctors now worry about his recovery from the operation (after all: he was only 3 days old!) and a possibility that the veins leading from the lungs to the heart may have some other defect than just this wrong connection. We will have to wait longer (perhaps much longer) to get more clarity on that second concern. They expect that Peter will have to remain in the hospital for another month.

The ECMO (the name for the heart-lung machine) is a scary contraption that looks more complicated than flying the space shuttle. Two nurses were constantly busy adjusting something on Friday night after the surgery. We were told that we should use the time while Peter is on ECMO to be at home as much as possible because his condition is very unlikely to change dramatically. That way we can be a little rested when, later in the week, the doctors will try to take him off the ECMO. We will probably spend whole days in the hospital then, as it will likely be touch and go for a while.

On Saturday, we went to the hospital only for a brief time--Betsy, Daniel, Anita and myself. We arrived around 3:30pm. Peter looked a lot better than expected. The nurses had warned us that patients on ECMO often puff up quite a bit as a result of retaining fluids. But we could hardly see anything. The nurses also were much calmer than directly after the operation. They had obviously stabilized him and he needed hardly any active attention. This was the first time that Daniel got to see his little brother. He seemed little interested really, but in fairness, he was majorly sleep-deprived!

Betsy and I feel greatly blessed with the many offers of help from many, especially from people in church. Food is offered from all sides, as well as other types of help. We are glad that Betsy's mother Anita is with us.

On Sunday, Betsy and I went to the hospital alone for a few hours. He continues to do well and also looks pretty okay (as long as you can look past all the tubes, etc.). I (Michel) was lucky enough to see him wake up briefly. I didn't even know that that was possible, even to the extent that he really woke up. Yet he really did open his eyes (somewhat sleepily, but nonetheless) and wiggled his armes and feet quite boisterously. I am sure he saw me. Betsy, unfortunately, was away at the time and missed it. After 10 minutes, the nurses made him go back to sleep, afraid that he might do more harm than good, though they assured me that it was healthy for him to move about a little. It helps him get rid of fluids.

A little later in the day, we talked to the nurses on the phone. The surgeon had come by and he had adjusted the ECMO to about 80% capacity (it had been 100% before). Apparently, he was responding well and we hope that he continues to stay at that level during the night. It is a good sign, but there is still a long road ahead.

Finally, here are a number of pictures of Peter.

(Also visit the Dutch version of this blog: vanderhoekpeter.blogspot.com).