Thursday, December 22, 2005


I was particularly grateful for our amazing homecoming celebration because we had quite a frustrating day (and night!!!) dealing with the equipment issue. The company gave me little to no training and I had to keep pushing them to actually help set us up. Then on the way home, I am calling them reminding them over and over again that they didn't give us enough oxygen to last the afternoon and we would run out if they didn't meet us at home immediately. Then they did drop off tanks but each only last for in the middle of the night last night I am trying to change a tank for the first time...Max is having a was a little scary to say the least. I kept thinking, oh my gosh, what happens if I don't figure this I really going to have to call 911 the very first night I am home???

On that issue, we are struggling because insurance is now denying home nurses beyond the "allowed" week, which is absolutely ridiculous. As the only parent involved in Max's care, that means I have to be at his bedside 24/7. Did that last night and it was quite exhausting already! And if I get sick (which I feel like I am about to), then what do we do? So the hospital and nursing agency are working together to fight the insurance. The insurance company is calling our bluff about having to be in the hospital if we don't have nursing care...and insisting that is where we should be if we cannot manage his care at home. Ridiculous! It costs $5000 a day to be in the hospital and less than $500 for care at home. We have quite a battle ahead of us!

But most importantly, we survived our first night at home. It's quite difficult in the middle of the night to be drawing out accurate dosages of multiple meds...I must have double, tripled and quadruple checked (Max was probably like, hey lady, gimme my meds!!!) and verifying the correct dosages (quite a laundry list of meds...the pharmacy even was surprised!).


suehaddad said...

OH YES! What a surprise I had as I checked out the blog this morning! I've been without a computer for nearly a month so I had a lot of catching up to do. The news is soooo exciting. Congratulations to you both. What troopers. This is the hard part and I know the routine will get easier as time goes by. Amy, please take advantage of what help there is right now as you'll need to be strong and healthy when the services slow down. Max, you are one lucky little guy surrounded by more love than you can ever know. We're so happy for you. Welcome home kids. This is the real meaning of Christmas. Love XoxOx

Lisa W. said...

Congrats to you Amy & Max - life will get much easier and your new state of "normal" will be here before you know it...
Kennedy's Mom (Lisa)

TheOzz said...

Hang in there Amy. My son Caden was diagnosed with DiGeorge (22q11.2 deletion) before his birth on 11/2/04. DiGeorge is often listed as a feature of Charge. He spent a long time in the hospital with heart surgery (VSD, ASD, IAA, and more) and a g-tube placement. We have endured the same type of frustrations with in-home nursing care, insurance, Medicaid, and equipment problems.

All I can say is Trust God and Pray. It works! I promise you!

Our son Caden is now 14 months and defying the odds the doctors gave him when he was born. He still gets fed using a pump via a g-tube, he has some developmental delays, weak immune system, low calcium, outstanding heart issues, ENT issues, and vision problems. You can read more on our story at Caden's Page.

Hank Osborne