Eli ended up back at the hospital on Tuesday to have tube placement rechecked. The tube was in a good spot. They decided that the gastric motility is probably what is causing all of the excess bile and such because the stomach is simply not moving everything down. They were able to get him hooked up to 1 drain bag, and that should last us a few while we attempted to find them and get them covered by insurance. His doctor is starting him on eryped to try and help with gastric motility. Right now we are only putting it thru the J port though so I'm not sure if it will be quite as helpful. His motility GI also called and said Eli has to be able to swallow 10 swallows for the motility testing. He can't swallow 1 anymore. Humph. His pulmonologist also called and thinks that this horrible cough is because of everything still being inflamed and upset from the pertussis and reactive airway disorder and pulmonary hypertension. I don't really understand why it would have all just started again, but I'm clearly not the specialist either. She is starting him on a steroid and restarting xopenex treatments. Not sure what the cardiologist will think of the xopenex as it increases Eli's heartrate so we'll need to keep him on his monitor during and after treatments. We are going to try to keep raising his night feeds a bit over the next few days to see if we can get our full intake in each 24hrs. Right now we are 150cc short, which is 5oz, so quite a bit. It looks like we will end up around 19hrs a day on the pump. Not ideal, but as good as it's going to get right now. He's resting comfortably and even did a bit of tummy time today and some sitting! He's my happy little dude! I'm so glad he's as relaxed as he is! He handles all of this so well!
The older 4 are pretty good. Ben had his meeting with comcare this week and has been referred to a psychiatrist to get some meds resituated. They are also hoping to start some play therapy. He began working on his social interventions program yesterday and that will run the course of the school year. His speech teacher will also incorporate some of that into their time as well. Hopefully we can teach Ben some of the skills needing for handling some of the tougher situations with his peers. Ben starts gymnastics tomorrow, and swim on saturday.
Ari is good. Busy as always. She has school tomorrow and starts swim on Saturday. She will get atleast 2 days a week in the pool and she is super happy about that. She really enjoys the water!
Emily and Jace are both busy with school. They are at school all day, do homework when they get home, and then head outside until dinner. As soon as they are done eating they are back outside until it's dark. They enjoy being outside with the neighbor kids and having some freedom. Emily loves being older and staying up late. She plays on her computer and listens to music. She's pretty good about turning everything off at a reasonable time, and gets her self up without any fuss each morning so we give her the freedom.
Bob and I both had our med rechecks today. They are going to again adjust my meds and send me to another doc for a 2nd opinion. It is definitely looking like my ovaries will ultimately have to go as well. My next sonogram is next week, to see if the cysts have shrunk but from the discomfort we are assuming they haven't. They are starting Bob on a new med for the IBS, doing additional lab work for the rheumatologist, and waiting for his genetic testing and GI surgeon appt at the end of the month.
Other than ALL of those things not much new around here. lol.
more updates soon.