Update: Nursing Care, Flu Shots, Sodium Levels, etc.

A Late Night Knock at the Door......

SURPRISE!! The nurse showed up last night to watch Josh. She said they finally got approval from our insurance company so she got a call to come to our house. We did NOT get the call, so we had no idea anyone was headed our way last night. In fact, it kind of startled us to hear a knock at the door so late (it was about 11PM - which is what time we had schedule the nurse to come most nights - before our nursing care got canceled).

Things were going fine with the nurse here until about 5AM when Josh's trach started getting clogged with dried secretions and his carbon dioxide levels began to rise and oxygen sats dropped. She went to suction him, but with his machines alarming on and off so much, I woke up to see if I could lend a hand. Apparently the dried secretions blockage was pretty stubborn, so we ended up just changing his trach which dislodged the goo inside. That did the trick and he was back to sleep not long afterward.

Matching Boo-Boo's........

Josh and I went to his Pulmonologist's office this afternoon to get our flu shots, and my sister who lives with us thought she was gonna get out of having to get stuck in her arm because she had to go to work today. But as we sat in the office awaiting the needles, we got a call from Amanda. She reported that they were slow at work and her employer told her about a clinic there on campus where she needed to go to get HER flu shot. So all three of us have matching boo-boo's on our arms tonight. But at least maybe we won't get sick - we hope.

More Bloodwork and NOT-So-Great Results....

The doctors wanted to check Josh's blood for his sodium levels again today. This is something Josh always dreads because it means the folks in the lab always want to poke him in the arm and move the needle around ALOT to try and find a vein they can use to collect the blood sample. Today was no exception. We sat in the lab for about half an hour while various lab techs looked at Josh's veins and placed hot packs on his arm in hopes that would bring his veins up near the surface. After having no luck getting any blood that way, the doctor walked in and gave permission to do a finger-stick to get the blood sample. A few minutes later, we were done and out the door.

Less than an hour after we got home, the doctor himself called us - telling us Joshua's sodium level was WAY high - almost as high as when he was hospitalized early in September for several days. I was worried he was going to admit Josh this time, too - but instead he instructed us to make Josh drink between 1 and 2 more LITERS of water, gatoraid, etc. between then and bedtime tonight and to increase his DDAVP nosespray that we give him at bedtime in hopes that by morning his levels will be back to normal. I am sure we'll be making another long drive over to the medical center area early next week for a follow-up test to make sure he's back down where he belongs (or his sodium levels are). Having too high sodium can cause some SERIOUS problems including death so this is nothing to fool around with!

Josh's Bones are Too Young.....

We got results back today from an xray Josh had on his wrist last week. They show that "According to the bone age standards of Greulich and Pyle, the bone age is 9 years (+/-) 9.79 months." But Josh is 10 years and 1 month old. So his bones haven't had their 10th birthday yet, and in fact, may not have even seen their 9th birthday, I think. ??? Anyway, we hear the pre-certification for Josh to get the growth hormones he needs is still in the hands of the insurance folks - so we're not sure when Josh's bones will get to catch up to him in age - but we hope soon!

There is still much more I could sit here and write to you all about - but I had better save something for later, huh? Right now, I've got to go check on dinner - Steffany is watching it for me while I write - with her head all focused on boys, that could be a scary thing :)

God bless and have a GREAT WEEKEND!!!

I just can't believe this


OK, when last I wrote, we were finally about to get nursing care initiated for Joshua in our home. As you know, I have been doing all of his nursing care, respiratory care, mothering, much of his teaching, etc. all by myself - not to mention I also take care of the house, meals, laundry, dishes, etc. etc. PLUS take care of an elderly, disabled couple part-time in their home (with Josh tagging along).

SO I was very relieved when at last - last night - we had a nurse in our home for the first night EVER. She arrived at 11PM, and we spent much of the next 2 hours going over Joshua's history and getting Joshua in bed, hooked to his bed vent and showing her where everything was located. I finally get to bed about 1:15AM, toss and turn a bit worrying whether I forgot something that could be necessary. Then I woke this morning at 6:30AM so I could talk to the nurse and see how everything went overnight before she had to leave at 7AM.

Everything seemed to be moving along fine and we were expecting her back tonight. Then we get a call from the nursing company case manager this afternoon saying the nurse would NOT BE COMING! What's more - the insurance company did not want to pay for nursing for us AT ALL because they couldn't understand why we would all of a sudden need nursing care since Josh has been on a ventilator since coming out of the hospital LAST YEAR.

It's not that he didn't NEED nursing care all of that time. I was just willing and barely able to provide enough care to get us by for a while - hoping Joshua would end up with the diaphragmatic pacer so he could be free from the ventilator and trach sometime soon. Of course, now, we have found out that Josh will be on the ventilator 24 hours a day for the foreseeable future. And, we should not expect him to be able to get rid of the trach EVER.

I realize I cannot go on indefinitely trying to be the one to take care of EVERYTHING all by MYSELF. I have been lucky so far that I have not gotten very sick. And, I have not even had an opportunity to go to a doctor or dentist for my own care since all of this happened - which I need to do.

Oh God, I just pray that this nursing issue can finally just be worked out. I do fear for my son's life. We know from tests performed at Rush Hospital in Chicago that should the ventilator fail and I sleep through any alarms, etc., Joshua could die right there in his bed during the night - because he WILL STOP BREATHING.

I've got to go to bed now and get some sleep. Just please everyone pray for us - this is very difficult on me. Thank you and God bless!

Thursday, November 09, 2006

Progress - I think


I've got several items of news to share with all of you who are following my saga with my son and his rare disorder.

STORY TO GO INTERNATIONAL???

Joshua's story may actually make it onto the Discovery Channel!!! I spoke on the phone with a TV producer in London, England this morning. He works for an independent film maker and he came across Joshua's story in the San Antonio Express News. He contacted the reporter who wrote that article, Melissa Stoeltje, who then passed on the message to me that he was interested in Joshua's story. The producer will still be contacting some of the doctors who treated Joshua and will present the story - along with some other medical stories - to the Discovery Channel - within the next few weeks. I will let you all know as soon as I hear any updates and whether they decide to do the story.

NURSING CARE

We thought we were going to have some nursing care for Josh - paid for through our insurance company last week, but that did not pan out. So, now another company has taken on our case and a case manager is due to meet with us this afternoon so a nurse can begin coming a few nights a week starting Monday. We are so happy to have SOME help - FINALLY. I am cautiously optomistic about this news - but will wait to be elated until it actually materializes.

MEDICAID

We have been trying for some time to find a way to get Medicaid for Joshua so that he can get the nursing care his doctors have ordered for him. They say it is important for Josh to have a nurse 24 hours a day. Josh's case manager at his doctor's office has been tirelessly working on finding a way to make this happen. And, earlier this week, Josh and I (after speaking to a nursing home the case manager had found) decided to head out to some local nursing homes to try and find one that could help. We ended up finally getting the name and number of the person to contact TODAY and have got the ball finally rolling on it. We should be hearing from the new case manager and nurse assigned to Josh's case within the next 14 days, then Josh will have to spend a night at a nursing home (when a bed is available at the one nursing home that does this in our area) before he can get assigned a Medicaid number.

I am certainly ready for some help with Josh. I find myself having a hard time getting up to check on his machines when they go off many times in the night - especially when it's several nights in a row that they do this. I thank God that we are finally learning where to turn for help with Medicaid - so Josh can get the nursing care he so desperately needs.

VIDEO
One last thing- make sure you take a look at my myspace page and see the new video on there. A dear friend who put many long hours into it created the video for me in an effort to do something to help us. God bless you, Amy, and your family, too. We love you, girl!!!! Then, you can find Amy on my friend's list and please write her and let her know what you think of the video. I think it is GREAT!!!

Monday, November 06, 2006

No nursing care after-all



We thought we would be welcoming a new nurse into our homes tonight who would help with Joshua's care while I slept. That nurse would have been watching Josh's vent settings and monitors to make any changes that would keep his oxygen and carbon dioxide levels at their best among other things. But the nursing company who was going to provide that nurse reports that they have nobody who can come and do that during the night after-all. They will let me know in a few days if they find someone - but for now, I am still on my own.

Last night, about 3:30 in the morning, I heard Josh's alarms going off then stop, going off then stop - a few times - and got up to go check on him. Once inside his room, I heard a strange sound with the tubes - and found that his trach tube had been pulled outside of his neck! Thank God, I had the presence of mind to figure out what I needed to do to get the trach back in the right place. I had a time getting the chain around his neck that holds the trach in place off so I could replace the trach. I had to turn on the big light and wake Josh completely so I could get him to take bigger breaths - because he was de-satting. Finally, I got everything back in place and got him back to sleep.

A few minutes after getting back into bed while starting to worry about what the nurse would have done if he or she had been there and witnessed the trach incident, all of a sudden, the house shook with loud thunder outside. Storms moved through from like 4AM all the way through 6:30 or so this morning. So, then I was worrying about the electricity going off and interfering with Josh's ventilator - which thankfully did not happen. But it sure made it difficult to get on up and get going this morning.

You gotta find the good and remember that God is responsible for that and realize God is there to see us through the rest of the stuff.

Halloween Pictures


Here is a picture from Fall Fest at our church. Josh dressed as Batman. My sister, Amanda dressed as a Character from the movie and play, "Chicago"



The next picture is also from Halloween day - earlier in the afternoon Amanda and I took Josh to the park to play with his kick ball. Josh couldn't move around much so we had to do most of the kicking (or throwing) very carefully straight to him. We also fed bread to the ducks, etc. in the park. It was a nice time.

Article about Joshua in another Newspaper


The Herald-Zeitung, a community newspaper for our area, published a story about Joshua in it's November 2, 2006 Edition. The story begins on Page 8 and continues onto Page 13. The article is entitled "Cibolo police gives local boy a reason to smile." We had no idea the newspaper was planning to do this story; but we were pleasantly surprised.

Thursday, November 02, 2006

Update: Nursing Care, Medicaid, Grandparents, Halloween


We are in November now and Thanksgiving is around the corner - can you believe it?

We finally got some news yesterday (Wednesday) about nursing care for Josh and about Medicaid, so I wanted to write a quick update. Our insurance will cover 250 nursing hours during the months of November and December. I had to sit down yesterday with a calendar and try to plan the best way to use those hours and came up with a schedule to cover most weekday nights while I sleep. I meet this afternoon with our nursing facility case manager to get Josh "admitted." Then, nursing care (still NOT 24 the hours a day that the doctor recommended) should begin either tonight or Monday night.

The case worker at Josh's pulmonologist's office has found a nursing home where Joshua may be accepted in order to spend the time required for him to become eligible for a Medicaid Waiver. He MAY have to spend a few weeks there before becoming eligible, from what we are initially told - but whatever it takes, Joshua needs Medicaid so he can finally get 24 hour nursing care, etc. SO, the paperwork has all been filled out and sent to the nursing home - which is in the Tyler area of Texas - a LONG drive from here - so now we wait and see.

We got some news recently that James's parents may BOTH have cancer. His dad had cancer on his leg a few years ago - but with surgery, chemo & radiation, they got rid of it. Now, doctors say he has cancer in his back, liver and lungs. A biopsy was performed on Monday and we are awaiting the results - but they are treating those areas with radiation in the meantime. James's mother had a mammogram which showed a couple of spots in one of her breasts. She is having them checked for cancer as well.

And to end this update on a happy note, I'll update you all on our Halloween. We took Josh trick-or-treating and to our church's fall fest (like we do most years) but as you know, Josh has to be hooked to a ventilator now 24/7 so it was much more tricky this year. We managed to get him into his batman costume and secure his hoses from the vent in his costume belt. We drug along his cart with his vent and medical supplies attached and kept it as close as we could. We did NOT go to nearly as many homes to trick-or-treat as we have in the past because it was just such a chore to get the heavy cart around everywhere. But Josh managed to come home with a load of goodies anyway. And Steffany and Amanda (my sister) even dressed up and made their rounds of the neighborhood and church, too. We all had a good time but were exhausted after Halloween. I am glad we are finally getting a little help with the nursing.

I'll try to post another blog with pictures from Halloween, etc. very soon - but now I've gotta go get everybody up and ready for the day!

God bless you!