Sunday, January 30, 2011

So glad this week is over!

It was a long one! The two ER visits last weekend, GI on Monday where he told me he wasn't the right doctor to help Tomas, Tuesday brought a pedi visit for the girls who have been battling this virus for two weeks, and then Thursday.
I applied for a medicaid waiver for Tomas, he was approved, and in order to start nursing services I had to bring him to a nursing home overnight.  I went to the center on Thursday morning and filled out all the paperwork. Then we went to our two big appts., then at 11:45pm I had to bring Tomas back to the home for his "stay". It was very easy, but such a long day. My husband was out of town so I had to bring the girls with me. We got home around 1am. Thank goodness for homeschool and not having to wake up early the next morning!
But it is done. He has medicaid!! The nursing agency is sending someone out on Monday and we will get a schedule set up. Also, my husband's company switched to co-insurance this year so having the secondary insurance will be such a blessing.
Now for the appointments. We met first with the hem/onc and she wants to go ahead and repeat the bone marrow biopsy. Then on to the GI across the hall. He spent a ton of time with us and went over everything. I had typed up a GI history for the visit and we went over the whole thing. We then went back across the hall to hem/onc to finish up with her. All total we were there 4 hours! My girls were so good, and we still had the nursing home to do that night!
So what's the plan? Well, the GI wants to proceed with the endoscopy, and he wants a full metabolic workup done in the hospital, and wants to get the endocrinologist to do another fasting study. He thinks the elevated liver enzymes are not related to the liver. They are referred to as liver enzymes but they are also present in skeletal and cardiac muscle. Basically, an elevation in the enzymes only occurs when either the liver or muscles are damaged and the enzymes "leak" out into the blood stream. The doctor thinks a type of muscle breakdown disease may be the culprit. That makes my choices so far some kind of liver disease or some kind of muscular dystrophy. As I told a friend the other night - I'll take door #3 please!
I am not ready to throw the liver disorder out the window yet though. It explains so many of his symptoms that a muscular myopathy wouldn't; I can't dismiss it yet. Unfortunately, the only definitive way to check for it is the biopsy. So for now it gets pushed aside. First comes the admit.
The only catch to all this is that Tomas tested positive for parainfluenza at the ER last weekend. He now has an upper respiratory infection and the croup. So no sedation for six weeks.
At this point my week really should have been over but it was not to be. Friday came with a late morning for the girls, followed by a pedi visit for Olivia and Tomas. Olivia has severe asthma and had been blowing in her yellow zone for 4 days no matter what treatments we tried, and Tomas is, well, Tomas. So prednisone for both to get those lungs back to normal!
Ok, Friday evening, everything should be settled down by now right? Wrong!
I was cleaning up a bit in my bedroom and the kids were all in the living room watching TV when I hear a panicked "Mom!" coming form Olivia. Tomas' GJ tube came out. The balloon ruptured and the whole darn thing just slipped right out. So I grabbed him and put an old G button in to keep the stoma open. Great, that's the emergency part, keeping the stoma viable so no repeat surgery will be necessary. Now what? Can  I feed him into his stomach? Give him pedialyte? What about his hypoglycemia, and dumping? It's a Friday night, no IR doctor is going to be at the hospital, if I take him they are just going to start and IV and make me wait until morning. And my husband was still gone! A few phone calls back and forth between Tomas' pediatrician and the GI doctor on call at the hospital and we came up with a plan to keep him home and keep him safe. It involved lots of blood sugar checks on my part, but he made it through perfectly. Saturday, we drove down to Dallas to get the tube replaced while a friend watched the girls. The GI on call doctor never put the orders in so it did take a really long time, but other than that all was well.
I am so ready to start a new week, and shove this one to the deep recesses of my mind, preferably to a black it out area! Tomas is still not feeling great and very week. He played a bit on the floor this morning, but really has just wanted to sit in his little recliner chair that PT brought out for us.  I hope to see him gradually improve over the next few days. It has been a rough go for him lately!
This Wednesday I meet with the endocrinologist. The GI would really like to bring him on board. Up until now, it has been a challenge to get any endo group to pay attention. In the words of our old GI, "If your kid doesn't have diabetes, you're not going to get anywhere with endocrinology." Hopefully, the notes from the GI clinic will help to propel things forward, although the GI did say he would pick up any slack left behind by endo. He must be used to them.

I am just grateful that we are moving forward. I've felt stuck since summer and would really like to make some headway in the diagnosis game!

1 comment:

  1. Oh my - I hope you have a Diet Coke IV in one of your arms. How do you keep up? PRAYING you get a break. For such a sick little guy, Tomas sure looks adorable lounging around :)