This weekend we are going to be fasting for Benjamin. Fasting that he will be able to eat well, and to gain weight. The specialist say that he will have to go in the hospital, again, if he doesn't do well this next month, and doesn't gain more weight. Ben was in the hospital for 3 weeks last spring. Most of the tests they did on him were either incunclusive, or inaccurate. They put him on medications that he really didn't need. They made changes that worked for him at the hospital, but they discontinued those changes when we got discharged. Setting him up for failure, it sometimes seems they have done.
He has always been on a cow milk based formula. Finally in the first part of December (around the 9th) we decided that we had had enough of his continual throwing up. (3 or more times a day, after most every meal). We took him off formula and put him on a clear liquid diet. 2 days later he was excited to eat baby food. (completely refused it prior to this) I told his nutritionist the next day that she better choose a formula that wasn't cow-milk based. She didn't want him to change~finally, after seeing the specialist the following day, and showing the improvement, they have changed him to a Soy based formula. He improved tremendously. No more throwing up. Eating baby food. By Christmas he was walking. He was doing better (not as many melt-downs) with his therapists. Yet still no 'kudos' from the Specialist and the Nutritionist. In fact, quite the opposite. They are now saying that he has to 'continue to improve' or he will be going to the hospital. ~~ So, he has been throwing up for months and months~no major talk of going to the hospital. Now when things are going better, they say he will have to go to the hospital if he doesn't do some more extreme improvement? Is it a control thing?
The problem is we don't feel that we are part of the team. The Nephrologist will often say things like, 'There are officially 2 people (meaning he and the nutritionist) in this room that are worried about Benjamin'. (Purposefully excluding ME, and implying that I don't worry about my own child). I often feel that when they talk to us, it is in a condensending way. Not in a 'team effort' way. Weren't WE the ones that figured out that he wasn't tolerating his formula? (The reason's they gave for keeping him on the cow-milk based formula for so long, is because there are no soy based renal formulas. Which is worse, puking your guts out every time you eat, or having to monitor your blood work periodically ((which we have to do anyways)) to make sure nothing goes extreme.)
Benjamin has been sick for the last few days, he hasn't been keeping things down. I don't want to hear an 'I told you so' from the 'team'. Uggh. I am hoping that it is temporary, and that he will soon start eating again, soon. We have had to feed him through his tube, more and more often. I hate for him to have to go to the hospital. Especially with a 'team' that we feel like we have no credibility with.
This Sunday (the 5th of Feb) we are going to have a Special Fast for Benjamin. Praying that he will again start to drink and eat well. Also praying that his body will accept the food that it is given, that he will be able to grow and gain weight from the nutrients. We will also be praying to know and understand the best things to offer and to feed him. ~We understand that it won't be over night, that he gets better. (sometimes we feel that is what they are looking for~and if they don't get it, then in to the hospital we go).
We have often felt out of the loop, with the decisions for Benjamin's care. Personally I would like to have a nutritionist that could come to our house once a week, to discuss menus and diet. So that we can work out a formula to get enough fluid and calories for Benjamin to have weight gain. Also, what other options are there, if feeding him isn't enough? Why haven't we been educated on what we might be facing? Just a 'blanket' statement of, 'if he doesn't improve, he has to go to the hospital'. Give me information. Give me 'why'. I know there are I.V. treatments that you can get nutrition from. Maybe his digestion needs a rest, and he needs his nutrition to go straight to his blood stream. There IS such a thing. It is called TPN. I don't know how likely or possible this is, but I would like to be educated more on possible solutions...so we can make an informed decision. (Key word WE!)
I understand that if he had to go to TPN, that he would have to go to the hospital. Yet the last time he had to go, he was in for THREE WEEKS. I don't want that happening again. One of the only positives that came from that hospital stay was he got his G-tube, into his tummy. He didn't get that until 2 days before he went home. A G-tube procedure is often just an overnight stay at the hospital..so for 2.5 weeks there were many unecessary hours waisted with Ben just lying there in a hospital bed. Away from his home. With Mom scrambling to find babysitters for Jakob and Zae, so she can be with Ben during the day, and Dad burning the candle at both ends by working during the day, and sleeping on a recliner chair next to Benjamin at night. (We SO appreciate family and friends that supported us through this 3 weeks, without them~I can't imagine how much more difficult it would have been)
Yes, at the hospital~they did tests. 2 sweat tests~both incunclusive, and you can do these as an outpatient~which we had to do, too. A barium swallow~which you can do as an outpatient. A probe they stuck down his throat for 24 hrs, to test his 'reflux'~Incunclusive. (not telling us until after, that it is hard to get anything accurate on a child so young). Putting him on Reflux meds, which they later discontinued, cause he didn't need them...they didn't work to control his vomiting. Adding 16 oz of water to his diet, which improved his hydration~then upon discharge they told us 'NO Water'. It's enough to make a mother scream. (Ok..so I have done that a couple of times, too.)
So, here we are...still trying to figure out what is going on with Benjamin's system, and digestion. Do you think we want to go through a 3 more weeks stay at the hospital?..not likely.
No comments:
Post a Comment