Sam and I returned from Boston on Friday, but it has been too hectic for me to sit down at the computer to get a journal entry done until now.
The flights were not as bad as I had imagined they might be. Sam was actually very well behaved and sat well on the plane when he wasn't sleeping. While Sam behaved, it is still not fun to travel with a child who can't seem to stop puking or pooping long enough to make 5 changes of clothes last for a 4 hour trip.
I got to meet with Dr. Puder's team on Wednesday and we discussed Sam and his recent test results along with the recommendations from Milwaukee. Everything seemed to make sense until they saw his vomit. Their opinion is that this is definitely not all coming from his stomach, and they feel that there is intestinal contents backing up into his stomach. This could be the result of a motility issue in his intestines. The other consideration right now is the possibility of bacterial overgrowth in his bowels.
Milwaukee was working under the assumption that the reason for the vomiting was due to the contents of his stomach not draining properly into his intestines. They recommended making the pylorus larger so that things could drain faster. The problem now is that making that opening larger will actually make the vomiting worse if there is indeed fluid backing up from the intestines.
Basically, back to square one.
We have started up an acid inhibitor again which will help protect him from developing ulcers, but it really is not helping with the vomiting. On Friday Sam will travel to Milwaukee again to have a gastric emptying test to determine how long his stomach contents take to drain and then monitor the flow through his intestines. One the results of this test are back, Milwaukee and Boston will put their heads together to try to come up with a plan of what to do next. (I am not holding my breath on that one, trying to coordinate anything between the two teams has been a nightmare in the past.)
On the up side, all of Sam's labs were the best they have ever been, including his liver enzymes. He has been off Protonix for a few weeks and we have reduced the amount of iron he is receiving so we really aren't sure what caused the huge elevation the last few months, but as of right now we are just going to go with it and see what happens. I have also made everyone promise that we are not ever going to make two big changes in medications within the same month ever again so we can avoid these situation where we can't easily determine a cause for lab value changes.
Sam now gets to be IV free for 9 hours a day and we are working to eliminate the extra hydration he receives at night so we will be down to two IV pumps at night. Within a few weeks we will be up to 10 hours a day of free time and then manage hydration with boluses during nap times for the summer or when he is especially active.
Sam continues to hover right around the 5th percentile for weight for age and length for age measurements, but we have jumped up to the 50th percentile on the weight for length chart. He also is continuing to make gains developmentally and is getting closer each month to actually hitting developmental goals at the "proper" age. Not bad considering that there have been times when we were running 4 or more months behind in most areas. Now if we could just get him to eat. And stop vomiting. And to stop ripping off his central line dressing.