Bubbles and laughter

Look ma, no trach!

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

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

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

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!

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

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

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

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

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

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

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...

...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

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

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

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

Still here, everyone?

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

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

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

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.