Monday, May 18, 2009

Back From Boston, More Questions, Few Answers.

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.

Tuesday, May 12, 2009

Off To Boston

Sam and I are off to Boston very early in the morning, but I wanted to do a quick post to let everyone know how our tests went this week.

The main thing we learned from the tests is that Sam does not have Acid Reflux. We were starting to assume this because he has been off of all reflux medication for well over a week and there has been no major change in his vomiting.

The second thing we learned is that Sam's stomach is abnormally small. Again, not shocking since he hasn't had anything in his stomach for the better part of 10 months. This could be part of the cause of his vomiting. Even though his body is producing a normal amount of gastric juices, there just isn't any room for it, and up it comes.

Right in line with the small stomach, his pylorus (the opening from his stomach to his intestines) is very, very small. This could also be the cause of his vomiting because his stomach contents are not able to drain properly.

Once piece of really good news is the there was not an ulcer to be found anywhere in his digestive system. This means that the ulcer he had in his esophagus a year ago has healed and that his vomiting as not caused any new ulcers.

We were presented with a few options from Milwaukee on what they can do to help with this, we will see what Boston has to say and then post more about our options while we try to make a decision.

Tomorrow is going to be a challenge as Sam does not like to be held - he wants to be down on the floor and able to move around. I have a sneaking suspicion that tomorrow is not going to be an enjoyable plane ride.

Wednesday, May 6, 2009

Busy Days

First off we wanted to welcome the newest member of our family, Everett. Everett was born last Friday morning and Ryan was so excited to have a new cousin. Sam, however, could care less...

Other than new members being added to our family, we are headed into a crazy week. Tomorrow (Thursday) Sam will be headed to Milwaukee for his upper GI study. Friday Oma will be arriving for a visit all the way from Georgia. Monday we will head back to Milwaukee for Sam's endoscopy. Wednesday Jason and Sam fly to Boston.

Mixed among all of that we had plumbers at the house today and I can't wait to brush my teeth tonight in a bathroom sink that actually drains after I wash dishes in a sink that actually drains, while doing laundry without the washer backing up all over the floor. While Sam and Jason are in Boston work will begin on our new windows, doors, and siding. Right about the time that is finished we will be headed to Chicago to spend a day with Bo, Jose, and Kinn which will be a nice little break before we start working on finally getting some landscaping done around the house.

Breaking our hearts this week is the fact that Sam is leaving the cuddle stage. He is getting very independent and wants to be down where he can move around, stand, and walk.

I miss my baby already and we are just not prepared for him to be a toddler yet. We missed so much in this first year with Sam being so sick and hospitalized so much. Sam is quickly learning what "no" means although most of the time he just grins at you and keeps doing what he was doing.

Sam's vomiting has still been an issue this week, although not as bad as we feared being off of the reflux meds. Hopefully we can make some progress this week in that respect with the tests in Milwaukee and our trip to Boston.

We will probably not get final results from the upper GI study until Monday, but we will post again as soon as we hear anything.