Yesterday I was VERY frustrated at the lack of follow through with drs. Avery should have been seen by the TPN team weeks ago but noone ever followed through. It took me calling for 2 weeks then an appt. was finally booked only they did not inform me. Great huh. Also we were waiting to see the Ortho. dr. for sometime b/c Avery's scolosis has gotten real bad. We had one booked for today, then the office called to cancel it. Of course I went off and finally got seen. We were at the hospital for over 5 hrs. Very exhausting and frustrating.
Update
TPN/GI
1. Avery has actually lost weight since his hospital discharge. NOT GOOD. This is why they needed to see him much sooner. You have to be monitored very closely which is what they have failed to do with him. GRRRR.
2. He has to get to 1000mls of j tube feeds in gain steadily in order to get off of TPN. So as you can see we are VERY far from this goal. He is only taking in about 200cc and still vomits with that.
3. Goal is to keep line infections at bay and liver functioning normal which is accomplished by getting to 50% of j feeds and 50% TPN. Again we are no where near that. Hopefully we can.
4. A positive note, if his mito is causing his GI shutdown then it can go up and down and he MAY get it back but he MAYNOT.
5. We have to discuss further testing which could be really invasive for him and we have to weigh this out to see what benefits it will yeild in order for me to consent to doing it.
So for now they are going to increase his TPN calories and we try to put a little weight back on him.
Orthopedics
Avery does has significant scolosis and kyphosis (bending forward of the spine). Bracing may help or it may bring on more issues like respiratory or gi issues. It is really a trial and error. I sure hope we can see some positive results. Surgery would be the last option as the dr. said it would be a nightmare with a kid like Avery. So I am just going to think positive on this one.
Overall it was a VERY long and exhausting day. Avery did really well considering his bedtime is at 5pm and we got home at 7pm and no nap today.
2 comments:
I can see how you would be exhausted and frustrated, Nicky. *hugs* I'll be praying for positive results with Avery's scoliosis. Hope he starts gaining weight for you soon!
Sorry to hear that you have to endure the additional stress brought on by the doctors. I hope that each day you see improvement and at least get a great smile from each of your boys.
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