One down, one to go

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.