Thursday, July 28, 2011

No news is news

We are just playing a waiting game right now with Zach, and I am not a patient person so this is just driving me crazy. He had bloodwork done last week to check his tryptase level for mastocytosis, and also to check for VIP tumors and then on Monday, I turned in a 24 hour collection of urine (which was a feat in itself) to check the histamine for the neuroendocrine tumors. No news yet on any test results. The GI doc we have been seeing lately wanted a referrel for Zach to UNC childrens for a "fresh set of eyes" on his situation but the appointment isn't until Nov 23! Which in my book is just unexceptable. There is no way he can wait that long, he is still losing weight and having all of these issues.
At this point, I am so frustrated with the whole hospital situation. It seems like they think he will just magically be better one day...which would be wonderful but its been 2 1/2 years now and he is worse now than he was. When things started getting bad last year, it was supposed to be pull foods/use NG tube for formula only for a month until patch testing and then add foods back. Well, that went to being allergic to all the foods to having a G tube surgery to delayed gastric emptying, then having a roux en y J tube surgery to central line. What?! It has been a crazy year...yes, this all happened in one year.
Oh, not to mention the whole doctors suspecting us, his parents of making him sick....why would I do that to my son. Thankfully, Zach has the best pediatrician in the world who stands up for him/me and put an end to that really quick. But we did have a hospital stay with a "sitter" for 24 hours so they could see the symptoms Zach was having. Fine...did you like the 6 times he woke up screaming in pain and did you like the hour where he vomited 10 times???? So there, my sons symptoms are real.
I am rambling but hope that everyone can understand how frustrated we are. My son is sick, really sick and yet we can't get anyone to diagnose him or treat the symptoms he has. He wants to be normal...he would love just one day of running around without having to wear a 10 lb backpack on his little 24 lb frame. And he would love to just go outside and play but he overheats within minutes of being outside. Maybe one day he will be able to do the normal things. Until then we just pray and hope.
Monday we go back to the dr. and we will hopefully make a plan, get some answers or something.

Thursday, July 21, 2011

Today's appt

So a quick wrap up of our appt today...we are testing Zach for systematic mastocytosis, VIP tumors and neuroendocrine tumors in his GI tract (since he has calcifications on his 3 last abdominal xrays that they can't figure out what they are) and his symptoms could fit with those tumors. Yes, I said tumors! He had more bloodwork done today and I have to collect 24 hrs of urine on sunday and drop it off monday morning to finish the early testing for all of these problems. He is hanging on by a thread of not having to be admitted, this is going to be ongoing with weight checks. We are still waiting on the DR to hear back from a surgeon about his previous surgery and I should hear back from the GI by monday to update me on bloodwork. That's all for now...

Thursday, July 14, 2011

The latest appt

We went into his one week follow up with GI and nutrition yesterday, it was quite an interesting appt to say the least. First was nutrition, he weighed in at 25.9 lbs....that is 3 lbs down from 3 weeks ago in the hospital so not good. He is still on 48 ml/hr but he is throwing up several times a day and still having diarrhea. The nutritionist suggested lowering the rate down to 38 ml/hr since in the hospital that was the point in which he was tolerating feeds without throwing up. She also suggested that I start him on some fish oil supplement to help with anti inflammatory issues in his GI tract.
When then saw the GI doctor, we didn't see his regular doctor but we saw I think my favorite dr, Dr. Gomez. He was disappointed with how Zach was doing and was very honest about what answers they had for him. His motility testing was normal so they don't think he has an actual motility issue. He said they had no clue really on why or what is causing his symptoms. We also had several long discussions about what to do, what it could be and what's next. He is going to consult with a surgeon in Ohio who he used to work with about whether Zach's roux en y surgery could be causing some problems. Also, they might end up sending Zach to another hospital for further opinions and treatments. He also mentioned maybe going to an intensive feeding program, the closest one is in Baltimore (Johns Hopkins) and it lasts 8 weeks inpatient. He also had to have some blood drawn to check medicine and iron levels.
He goes back in 1 week to be weighed again and discuss our options. If he has lost more weight he will be admitted again and have another central line placed for TPN supplements.
Hopefully Dr Gomez will have talked to the surgeon by then and we can come up with a plan that will work for Zach.

Wednesday, July 06, 2011

Long days and nights

We finally got home from the hospital on July 4, what a way to celebrate the birth of America. Zach got sent home, not that he is really any better but they are just ok with seeing how he does for a week on feeds. It was an interesting 3 weeks at the hospital this time. He had lots of tests done, another blood infection, had to have his central line pulled again :(

They started him back on feeds through his J tube, in hopes that he can now tolerate some formula. They slowly went up on feeds til they got him at 48 ml/hr going into his tube. He has to be hooked for 24 hours a day to get enough calories to maintain his weight. Unfortunatly, on the feeds he throws up...every night and for the most part at least once every day. He walks around most of the day crying that his "bel wee" (belly) hurts, which is very pittiful from a child that loves to run and play. His quality of life at this point is far from where we would like it to be.
At night, I let him fall asleep next to me on the couch and leave him with me til I go to bed and then put him right beside me. I am afraid to put him by himself because I know he is going to throw up, we just wait for it to happen and I don't want him to be alone. During the day, you never know when it is going to happen...he will just stop what he is doing and get really quiet.

He is on several meds now and has to have daily weight checks by his home nurse. So far he has not lost any weight, even with all of his throwing up. He has appointments next week to see his GI doctor again and to meet with the nutritionist about the amount of calories he is getting. I am not we are going to do anymore testing right now on Zach since the last tests haven't really turned up anything and haven't helped. They believe he has a disorder called Autonomical Dysfunction...which is where your central nervous system is malfunctioning. It can affect all of your involuntary muscles and it actually explains and ties together most of his symptoms. There is no cure, you can only treat the symptoms that you have. He is on gabapentin right now...which is a seizure medicine but it also helps with nerve pain which is what they are using it for.

We know that Zach will have good days and bad days and we will figure out what triggers some of his symptoms. It is just hard trying to plan anything or trying to give him a normal childhood when you never know what tomorrow brings. We are living one day at a time and are learning to treasure the good days or atleast the better days.