Growth Hormone Test

As you know, Josh is on his ventilator 24 hours a day now after the doctor in Chicago checked his oxygen and carbon dioxide levels through all kinds of activities. Well, that same doctor wanted Joshua to be further tested to see if he needed growth hormones, too. So we took Joshua in a couple of weeks ago to his endocrinologist for this test.

The growth hormone study is done by starting an IV and giving Josh some kind of solution. Once all the solution goes in, they draw blood out of the same place that the IV went in. Then they wait 30 minutes and draw blood again. Another 30 minutes and they draw more blood. And then they take out the needle and you go home. They told us they would let us know the results and we'd plan what to do next then.

The endocrinologist's office finally called this morning with the results. They checked for levels of certain things in the blood. One of them - cortizol - seemed to be at a good level, BUT Josh's growth hormone level was NOT good. They said they like the level to show 10 or more and Josh "peaked" at 0.6. He didn't even get up to a ONE much less a TEN! So he failed the test miserably.

So what does that mean now??? They are going to send the results to our insurance company to make sure it will pay for Josh to receive growth hormones. I asked how that works - do we go in to the office every so often for them or is it like a prescription that we fill or what? They said NO, the growth hormones would be sent to our home and we would need to be trained by a nurse to give Josh injections. He would have to have these shots every single night for YEARS - until his body completes its growing. And the hormones are very expensive, so it could take the insurance company weeks to decide to pay for them and for us to be able to start them.

But because Josh's results on this test were SO LOW, he is basically NOT GROWING. The doctor's office wants Josh to have an x-ray taken of his hand and wrist. I am guessing it is to see at what stage Josh's bones stopped growing and to have something to compare future x-rays to to make sure he does grow with the hormones.

Meanwhile, we still do not have nursing care started. Again, we DO NOT QUALIFY for Medicaid. And our insurance will only pay for a very small amount of nursing care in the home and ONLY if Josh is homebound - and not in school. SO, since Josh IS HOMEBOUND now, we are hoping to get SOME nursing care for him - through insurance - even if it is a very small amount. Anything will help - especially if I'm gonna have to start giving Josh shots, too. I dread that.

I did share all this with Josh and I don't think it is all sinking in with him. He hasn't said much about it. He prefers to only talk about the good stuff - things he wants to do and what he wants for Christmas - that kind of thing. I still need to get Josh in to see a counselor - as the doctor in Chicago asked me to do. I now have the name and number of one here and just need to get the appointment set up - which I plan to do later today.

NURSING CARE - NOT YET

After Joshua was placed on his ventilator 24 hours a day, and the doctor ordered him to have nursing care 24 hours a day - we still do not have nursing care - none at all. Our insurance company will only pay for a small amount of nursing care in the home - IF Josh is placed in Homebound services for schooling.

BACK TO SCHOOL - NOT YET

His doctor signed papers for him to be homebound, but it has not started. We are waiting to hear back from the school on it. IF we somehow manage to get Medicaid, we think that would allow Josh to get the nursing care the doctor wanted and perhaps even allow him to return to school with the nurse. That is our hope but so far we have not found a way to get Medicaid.

FOUND PEDIATRICIAN - NOT YET

The doctor in Chicago wanted us to find a regular pediatrician to be Josh's Primary Care Physician. We have discussed this with Dr. Morse (his Pulmonologist) but have not yet made the call to get that set up. I expect to do this either later today or early next week.

COUNSELING FOR JOSH - NOT YET

We also need to get Josh an appointment with a counselor and Dr. Morse had one in mind, but I need to get that counselor's name again and make sure I have the proper referral so we can get Josh in to see him/her.

HEARING AIDS CHECKED/REPAIRED - NOT YET

Josh is supposed to wear hearing aids in both ears, but one of them has been having trouble with static. We got the hearing aids in Odessa, and I'm not sure where I might be able to get them repaired locally. I have heard there is someone here who is willing to take a look at them, but I still need to call them to get that arranged. That will also likely be an early next week item.

MAKING EQUIPT. MORE PORTABLE - WORKING ON IT

There are so many pieces of equipment we have to get around with now (all while they are hooked up - ventilator, pulsox, CO2 monitor, suction machine, trach bag, batteries) and they are HEAVY and BULKY and LOTS OF TUBES & CORDS - yuck. It's such a job just to get Josh to the bathroom or out the door to get anywhere. But I have been searching for anything I can get to help attach everything and put it on wheels. I've ordered one utility cart that claims it is easy to get up and down stairs with. I'm waiting for it to come in the mail. Hopefully, once it is here and I get it all loaded, we'll have things more under control.

VAN TROUBLE - OH YEAH

On the latest trek across San Antonio to the Medical Center area, my van decided to over-heat. James has looked at it and can't seem to find the cause of the problem. Then, it didn't over-heat for him when he gave it a good "work-out." But again yesterday, running some errands, it did it again. We were hoping to take the van to Odessa for a visit (since we haven't been there since Josh has been on the ventilator). Since we'd already told most everyone we were coming, we decided to rent a van for the weekend to make the trip and James will see if he can find the trouble when with my van when we get back. :(

MY ODD JOB STATUS - IN QUESTION

OK, I have been helping take care of an elderly couple in their home close-by. It produces a very small amount of money, but mostly is to help the lady and her husband. There has been another woman who comes in the mornings and I (with Josh en-toe) come in the afternoon to help her get out of her bed and into a wheelchair, make lunch, get her back in bed and do some light cleaning, etc. But now, the morning lady has given her notice and signed on to another job. And, they've asked me if I would be willing and able to come full-time, which I do not think is possible, given all the above issues that are still unresolved and so many appointments still needing to be made. But I feel bad for the lady, because she needs someone to help her so badly. She is such a sweet person and I enjoy our time with her, but really need to get so much more done!

ANOTHER THANK YOU!

Again, I want to thank all of you who are reading about us, thinking of us and praying for us. I can't imagine trying to go through all of this without God and His guidance and comfort. I praise Him for using you to build us up!

We went to Corpus Christi to meet these "angels"

who worked so hard to put on the BBQ for Joshua.

Afterwards,

they showed us a place where Josh could go fishing

- while hooked to his ventilator in the van.

Check out the pictures below:

Bar-B-Q Benefit

held for Josh's Medical Expenses

in Corpus Christi

September 30, 2006

Even though most of them had never met Josh (or us - his parents), several people who work for Fed Ex Freight in Corpus Christi worked to organize the BBQ, sell tickets, cook and prepare plates of food.

And many others in Corpus Christi who also did not know us, bought up the tickets and plates of food like wild!

We want to thank them all from the bottom of our hearts!

GOD BLESS THEM ALL!!!!!!