Friday, April 15, 2011

Stuck in Traffic

We had Tomas' appt. with the new GI and it was a good one. He is a man who likes the puzzle kids, and he and Tomas' oncologist share a few of the more challenging kids at the hospital, so I really think it will be a good team for him.

Another huge plus is that this GI nurse actually calls you back, and has been tremendous at keeping contact going between the doctor and myself during the last week. Tomas is having slow to no motility again and I and his home health nurse have been sidewinding our way through trying to keep him home. It has always been, "Well, do what you can for him at home, and when you can no longer feed him enough to keep his sugars stable or he gets dehydrated bring him in." So frustrating.

He had 4 fabulous days last week where he had zero bile output and he tolerated his feeds great. That ended on Sunday and has been progressively sliding downhill, to the point where yesterday was an on the fence kind of day. Problem is, Mike is gone, and I KNOW if I bring him to ER he will get admitted. So we struggle on here, hoping that the next day is better than the last. As of right now he hasn't hit his calorie goal since Sunday, but I am doing my best to use a mix of pedialyte and formula to keep his GI tract running. Oh, and I need to add that the little stinker is now smart enough and coordinated enough to yank off his extension set. He knows it hurts when he eats, so he just wiggles and wiggles it until it comes loose. He has managed to free himself a few times now and make giant messes!

He had a sleep study done on Friday and I should have the results at the next pulm appt. I hope they were able to get some good data as I don't really know how well people sleep at those things. I did find my miracle - make your baby sleep - cure though. It is a farrell bag. It hooks up to his feeding set and is a way for the stomach (or in his case intestines) to release gas pressure. Basically, the bag is an outlet for the tube set, if the pressure inside is greater than the pressure in the bag, then the formula will flow up into the farrell bag until the pressure equalizes, then slowly drips back in. We tried it when he was an infant but it has so much tubing he was never strong enough to push it all the way through. Now, it is amazing to see the difference in how he sleeps at night. If I leave the bag open he sleeps like a normal kid. Falls asleep, moves a bit in the night, but stays asleep without a sound. The problem is that he is not getting all his food, so if too much starts to back into the bag I have to clamp it shut so he can eat and not become hypoglycemic. He does not like this and within 30 minutes of the clamp is moaning and whining in his sleep just like before. So we do the farrell dance through the night, but all in all, he is sleeping so much better.

Due to all the bile output, we are having to monitor his electrolytes closely. Last Monday his sodium/potassium/chloride were low, and they were still low on Wednesday. This Tuesday we had them drawn again and the only one still low was potassium. This was after the good 4 days and before yesterday though so I am thinking his next check (Monday) won't be as pretty. Yesterday was tough. The girls had a field trip.

It sounds so simple doesn't it? It's not, and it has nothing to with the amount of gear or prep involved. That is not it at all. It is the absolute lack of consistency in Tomas' state of being. It is never knowing if he will make it through. I can't say if it is the GI problems or the hypoglycemia that are more the culprit here. If he could eat fine then we wouldn't have issues, but then again, if he wasn't so severely hypoglycemic, it wouldn't be as dire a situation when he is not tolerating his feeds. You and I, and Victoria and Olivia, and most other people on the planet can skip a meal. You eat breakfast, and for whatever reason something comes up and you miss lunch. Before you know it, you look at your watch and it has been 8 hours since you ate. Maybe you had breakfast at 7, and now it's 3 and you're starving. You eat and all is well. Not so. He can't do it, if he were to go 8 hours or 7 or 6 or even 5 without food there is a very, very good chance he'd be in a coma. It is the single most difficult thing we are dealing with right now because it means he HAS to go to the hospital when he can't eat.

Back to yesterday, It started out pretty darned good. It was a progressive field trip through historical markers in a nearby town. The first two stops were perfect, he was happy and playful and just regular old Tomas. It was early, and not time for his feeds to start. The third, and final stop was the long one, were we would spend the rest of the day, so his nurse got him all hooked up and everything running and sat with him while I bounced back and forth between the two girls' groups. A little into it things went downhill and I was calling the doctor to tell him if Tomas didn't wake up from his nap better then when he went to sleep I would be bringing him into Dallas.

 Their plan was to try to get him through to his already scheduled surgery appt. in just a few hours and see if the surgeon had any ideas on what was going on with the bile output. Tomas did wake up a bit better and we did make it to the appt. Unfortunately, the surgeon didn't have anything to add, and it was more of the same;. bring him to ER when it gets bad enough. I asked if there were any tests we could run to see what was causing the bile reflux, or if it could be fixed with any different motility meds. Nope and nope. Just a long talk on how dangerous it would be to do any kind of surgery on his bowels given what they had already been through, and to call him any time. Thanks; and we walked out just as close to an admitting as we went in.

As we were leaving the hospital pavillion I thought I'd pop into the blood disorders clinic and see if his hematologist was there. I've been mildly worried since Tomas' pathology report came in from his last bone marrow biopsy; not too much because I figured his doctor would've called if anything terrible was going on. But I still had some questions and had been playing phone tag with the dr. for a few days. Luckily, she was in and close to finishing so we hung out in the waiting room for a few minutes. She came out, saw his bile drainage, and pretty much became as stressed out as I was over the whole thing. She spent a very long time talking with me and going over EVERYTHING that has been happening with Tomas in the last month. She wants a CT of the abdomen and brain (for unrelated autonomic issues).  When we left she was going to call the GI and then call me back today.

That means that within an hours time I had two wildly different opinions on what could be done for my son and on how to proceed with his care and maintenance. This is the stuff that drives special needs' mommies insane! Truely, who do you listen to? In this case it was easy, since it was do nothing and hope it gets better or let's do a CT and see what we can see. But it is not always that clear cut a choice.

The bright and shining spot not to be lost in the mist of all this GI junk is that his bone marrow was normal! Even though he has blasts they are the "friendly" kind and she is not concerened at all by his report. That made yesterday get a whole lot better.

Last week when Tomas and I were driving home form the new GI appt. it was rush hour and we were stuck in traffic the whole way out of Dallas. It very much struck me that caring for him and navigating the medical world is very much the same. Slowly, so so slowly, we trudge forward. Every once in a while we switch lanes hoping to move at a faster pace, all the while watching those around us do the same exact thing. But the most amazing thing happened while I was stuck mentally and physically in traffic on Wednesday. Tomas happened. He was fascinated by the cars all around him. Every time one would pass by the window he would kick and scream with a JOY that almost popped him out of his carseat; and I laughed. Right there in the middle of six lanes of traffic moving at a snails pace, we laughed and laughed and laughed. A tuck would roll up and he would explode in shouts of sheer delight. Oh my word how much fun we had. And thats it really, that's the big fat secret to our lives. He brings us joy beyond measure.

Tuesday, April 5, 2011

Where the heck have I been?

Well, first off, thanks for asking. Makes a girl feel loved, lol.

Let's see. Mostly doctor's appts, as usual. Only now we have the whole buying/selling/moving thing thrown in. My husband came home on Sat. and we have been working hard to get the house ready to list. Sprucing up the outside and shoveling out my middle child's bedroom come to mind. Outside is done, bedroom is still a work in progress. We are trying to list the house this week though so hope to get it done soon.

Of course, Tomas has not made this easy. He got out of the hospital on the 18th and started running one of his cyclic fevers on the 23rd, prefectly timed so that I would have to cancel his swallow study (I think he knew).

A pulmonolgy appt. for all 3 brought 7 new tests smattered among the little darlings (with bad lung genes).

Last week Tomas' nurse fell and sprained/tore tendons in her ankle. Replacement nurse came the next day, but then missed the next two due to a doctor's appt. and an ER visit on her part for a severe sinus infection. Do I want another replacement nurse? Um, no thanks, they are dropping like flies. Regular nurse will be back next week.

This week brought a pedi visit for that pesky fever. It doesn't get over 100.2, but has been around for almost 2 weeks now. A failed cath attempt and blood draw attempt brought a trip to the children's hospital for round two of torture the baby, but it worked. Still waiting on culture results.

Today was a waste of time and money at a dermatology appt. for him. Only thing worth even mentioning is that Tomas' cold sore isn't your typical cold sore (not really worth mentioning as I could have had the doctor pay me to tell him that) and is the kind you see in chronically ill kids. Smack me on the forehead, I didn't see that one coming.

Tomorrow brings a semi-big appt. with a new GI. It is the attending from his last hospital stay. The doctor was fabulous at the hospital and I hope that trend continues as Tomas has been draining up to 6 oz of bile  day from his stomach. His latest labs showed low electrolytes because of it. I have been giving him pedialyte but I can't replace 6 oz on top of what volume he is already getting for his feeds.

Thursday is a surgery consult to discuss the bile output as well. There is a chance that some stump of gallbladder remnant or some other weird (and rare - make me laugh) post gallbladder removal thing is going on with his bile.

Friday is a sleep study. Sweet, sweet sleep. Some good data from this study would be awesome, but even more awesomer would be a way to help him sleep better!

Now, of course my life isn't all medical. Well ok it is, but it doesn't really matter because the living still happens. Sleep not so much, but living  - hell yeah!