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.)