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

Friday, November 17, 2006

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!!!

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