We arrived home late last night after an almost relaxing trip to Boston.
Our clinic went well, Sam looks good, and all of his labs also look good. They have increased the calories in his nutrition quite a bit and we will hopefully get out of this plateau of no weight gain we have been in for a few weeks and fatten him up a little. We also got the go ahead to increase his off time from 4 hours to 5 hours and are looking forward to gaining the extra hour of freedom unattached from his pump. Hopefully in another month we will be able to go up to 6 hours if he tolerates 5 hours. We also have been given the go ahead to slowly try some different foods. Sam has developed an aversion to oral feedings in the last month and usually gags if you put anything near his mouth. We will be working with a speech therapist soon to try to overcome this and then attempt to try a few things that could be more tasteful than rice cereal. Sam's oral intake will still be very limited and not necessary for nutrition, but we want to try to keep him eating at least small amounts of food each day to keep everything else working correctly. He also has been given the OK to drink small amounts of water which will be a very new experience for him.
We have also almost completely eliminated Sam's double diapering. We are still using the double diaper at night to help reduce the amount of poo we need to clean up, but otherwise he is down to a single diaper throughout the day. We still monitor his daily output vs. input and check the specific gravity of his urine several times per week to ensure he is properly hydrated.
Starting this week we are also trying something new to help prevent infection in Sam's line and will be locking his line with ethanol three times a week instead of heparin. It sounds a little scary to inject ethanol into a baby, but it actually just sits in his line and is drawn back out a few hours later. In the event that we forget to draw it out, Sam would become drunk and sleep for a few hours, but should not have any other serious side effects. The ethanol kills any unwanted bacteria in his line and also helps to break up any plaque in his line.
We have also perfected the use of a new dressing technique for Sam's central line. We have dubbed this as the "Australian Butterfly" as it was shown to us by a doctor from Australia when we were in Boston in September and the end result looks like a butterfly wing. The dressing is much more secure than anything else we have tried and stands up to a lot of tugging without putting pressure on the line itself. For the other parents out there with children with central lines, we will put together instructions and some pictures if you want to try it out. It takes some practice to get right, but the end result it worth it.
On Friday we got a chance to sit down with Dr. Puder to catch up. Dr. Puder is starting a third MID patient on Omegaven soon. We have given him permission to share Sam's story with them and are hoping that they will contact us to share information. We had a long discussion regarding healthcare in general, transplants, etc... It was nice to hear about his opinions and experiences at length. He is also working on writing an article about Microvillus Inclusion Disease and the impact that Omegaven has had on his patients with the disease, as well as another paper on the mystery of Sam's blood work. Sam has had continual problems with his blood work since birth. His red and white cell counts, and hemoglobin, have always been an issue. Since starting Omegaven these have all corrected themselves without the need for further transfusions. No one is certain why this happened to Sam, but he is not the first (Bo had a similar experience). Once again Omegaven is doing things that are too good to be true, and is one of the many reasons that so many doctors will not even consider Omegaven as an option.
All in all it was a very pleasant trip to Boston. The travel home was a little frustrating as Sam has decided it is unnecessary to nap and by the evening he was very crabby. Nothing like making friends on an airplane by having a shrieking baby on your lap. The rough landing in Appleton and the subsequent arm rest flying down to smack him in the head didn't help much either. Sam has his first non needle or scalpel induced bruise. Another milestone met.