Find out how a rare breathing disorder has changed the life of my young son and my family.

Sunday, January 14, 2007

Unexplained Symptoms Continue..
1. Joshua is still having fevers on and off. The highest one was 100. But they come and go.
2. He also had another spell of pain & muscle stiffness in his legs and arms Friday night. His Aunt Amanda made a mad dash for the pharmacy to pick him up some generic pedialyte in his favorite flavor, and he drank almost the entire bottle that same night, and the pain & stiffness seemed to go away.
3. Josh will need to have blood testing again early this week to check his sodium level, because it has been so high lately. Friday a week ago, it was up to 170. Then a test again on Monday showed it had come down to 150 – barely in the acceptable range.

Emotional Breakdown/Breakthrough
All this time since Joshua was first hospitalized (he's been in the hospital four times now), and since he has had the tracheotomy and been dependent on a ventilator, he has not really talked about his feelings about any of it. Even though he is now having to get shots 6 nights a week and will be for some time to come, still he has not shed a tear about any of it, with the exception of having to have a needle in his arm to receive a contrast solution during an MRI last year. Any time you ask him how he's doing, he will just reply, "good" or "fine." This has been something that has concerned many of us because you would think anyone going through so much would have had to cry about it or be saddened or even sickened by it all – but not Josh.

Doctors had sent psychologists, psychiatrists and counselors to talk to Josh but still he would not talk about any of this with them or even really with me. He would listen to me talk about it with him. I would explain why the doctors felt it necessary to do all these things and what they hoped to gain by some of it. But he never seemed to disagree or reject any of it – as I would expect he might at some point.

Well, Josh finally broke down on Friday night. It actually began with a simple conversation about something else entirely. We were talking about things people do that hurt other people's feelings and he began to discuss his feelings about the trach and ventilator. He hates having to be connected to the ventilator all the time, having to push a cart around worrying about the wires and tubes getting tangled – especially when he has to go to the bathroom. He didn't understand why they wouldn't just let him go back to wearing just his talking valve – because he could talk just fine with that. It was as if he thought the reason they wanted him to use the ventilator was to help him talk. We had to explain again what the results of the tests meant and that they were the reason the doctors recommended the vent. I also had to explain to him that nobody could force him to use his ventilator all the time, but that if he did not use it, he could get so bad off that he might die.

It was a very lengthy and very emotional discussion for all of us (Amanda, Josh and I were involved in the discussion). We all bawled pretty good during it all. The discussion even delved into God's role in all of this, and we learned that Josh had believed even God was not perfect. We corrected him and explained why it was because God was perfect that we would be separated from Him because of our sin. And only Jesus, God in human form, who remained perfect while on Earth, could take our sins on Him and take our punishment for us so we could be with Him again in Heaven.

After the talks and crying were over, we all hugged and had some laughs and went upstairs to watch some TV. Josh has seemed even happier since all of this, and I am so glad.

Nursing Home/Medicaid
We have been trying for some time to get Josh qualified for Texas Medicaid. We were hoping that would help pay for the constant nursing care his doctors recommended. Josh has had to remain homebound from school just so our insurance would pay for ANY nursing care at all. But getting the Medicaid is tricky. We did not qualify for Medicaid the traditional way.

We finally learned a few months ago of a waiver program that Joshua should qualify for – that would get him Medicaid. One of the big requirements for it is an overnight stay in a particular nursing home. And the wait for the one room at the one nursing home in our area that participates in this waiver program was a long one. We were told it could take months for Josh to have the opportunity to get in, so we filled out all the other paperwork, etc. and waited.

Then on Thursday, we got the call – actually several calls – that there was a small window of opportunity for Josh to get into the room – and could we come that very night?! We jumped at the chance and made all the necessary arrangements. Josh went in late Thursday evening and got out early Friday morning. We were even able to make arrangements for Josh's nurse to meet us at our home upon our return so she could help get him up into bed and watch him while he slept afterwards. He did not sleep a wink at the nursing home. I think he was too nervous and excited about it all.

Now, Josh has a Medicaid number (although I do not yet know what it is) and his nursing company is in the process of evaluating him for other programs to help provide the nursing hours he will require. But we are hopeful that it won't be long until he has the 24 hour per day nursing he needs (or at least very near that) so he can return to school and some of the responsibility for his medical care taken from my shoulders.

I am also hopeful that Medicaid and/or the other programs will help pay for some of the many medical bills that have piled up on us that we cannot afford to pay. We get bills for every blood test Josh must have – and there are many, many of them since his sodium levels must be checked so often.

Goals for the future

1. We want to take care of all the bills with the help of the Medicaid, and hope that it helps pay for the very expensive growth hormone, too.
2. We want to get Josh back into school with his new nurse(s).
3. We need to get Steffany (Josh's sister) braces – she has had to wait since Josh got so sick, because all our medical monies had to go to his care.
4. And once we know if there is any money or time for it, I probably need to take some more classes so I can complete my degree. I am thinking of trying to become an RN myself, with my medical experiences from Josh's hospitalizations, etc. I think I might even be able to be paid to take care of Josh as a patient – at least when there is not another RN available. But it would take a few years for me to complete this process – but it is a nice goal.


the first is of my sister and Josh playing games
to entertain themselves - since there was no tv available

the next is of Josh making silly faces - a game that kept him

quite happy - and awake - during the stay
and the last is of me - after I napped a bit -

I looked a bit like a zombie, but I was happy our stay was about over

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