I have missed a couple of posts so this one may be long.

On Wed. I took the boys to see a CCS dr. (Complex Care Services) they are basically a primary care team for the hospital. The purpose is to help coordinate the care for complex kids like mine. Thing is they have not been doing much coordinating for us these days. I got a bit fed up so I switched to a different dr. hoping to get some more carry-over. I always dread appts. with both boys as it is sooo much work and just a long intensive day for all, especially them. Mr. Isaiah especially hates going to any appts and will immediately start yawning and "fake retching". He is too smart, huh...

As soon as I got there the nurse informed me that Avery also had another appt. right after but he will be late b/c this appt. is going to be about 2 hrs. UGH. But since we are already there might as well get it out of the way, right...

I really did like this dr. she was very attentive and interested in helping the boys. We started with Avery which ends up taking up 3/4 of the appt. b/c his history is so extensive. It is amazing when you have to give a history of how much this boy has been through and how far he has come. But my focus with him was better coordination after his hospital visits. What happens typically is that b/c Avery is on bipap he goes up to a special (step down ICU)which I really like them and they know him so well. That is not the issue. It is when we leave there, we have nobody to call for concerns or questions. CCS has a specific floor in the hospital and in inpatient/outpatient team but they SHOULD be following Avery since he is one of their pts. So I really stressed this to the dr. b/c it really is useless for him to be part in the service if they dont follow or know him. She agreed that this will be something she will try to coordinate (we will see).

Isaiah was more my issue. I have so much guilt of his issues that tend to take a backseat to Avery's frequent and chronic acute issues. He really has nobody invested in trying to help him with these migranes. They are getting worse and it needs to be taken seriously as it has a huge affect on his quality of life. So we will also see with this part.

Back to Avery. His second appt. was regarding his TPN. So it is no big secret that I am trying to get him off TPN b/c it is just not good long term for his body. It can cause serious liver damage amongst adding to his anemia issues and a slew of other things. While it has been great for him to get him back to a good nutritional point it also has huge risks in terms of additional central line infections which a major problem right now with his limited access. So my first question to the dr. was "How can I get Avery off TPN" He was thrilled that I was open and being aggressive about this b/c they dont want to see any kid on it long term unless necessary.

He then said, "easy all you have to do it get him formula intake (through his j tube) up to at least 500cc a day"

To which I said "easier said then done" but we will try.

So the plan is to increase Avery's feeds to 3cc every three week until we get to at least 30cc per hr. Now it sounds nice and easy and would be great if we can pull it off but only Avery's body will be the judge of that. But on a postive note we were able to take him off TPN for one night a week. Woooohoooo. Because Avery had such a big weight jump this yr. from the TPN he is okay to come off for one day. Realistically he may only get off TPN a few nights but that is progress and I will take it.

Something is definetly going on with Avery as he is quite miserable these days and only happy unless you are in his face 24/7. He is still junkier than normal so not sure if it is anxiety from pain or what it is but he is seeing the pulmonologist on Monday so if it is respiratory related, hopefully we can nip it in the bud and avoid the hospital.

Still no H1N1 vax for the boys. Not even going there.

Rick and I were able to get away last night for a free night at the casino. We had a blast and it didn't hurt that we broke even money wise.

Hopefully you made it through the whole post. Thanks for reading and checking up on us.