Wednesday, May 24, 2006

HEART UPDATE, NURSING CARE, AND CHILDREN'S VISIT

I have been quite busy the past few days talking with all the various doctors on the heart issue...as well as all the various agencies who are working to get us some nursing care. In the past few weeks, they all realized I was on the verge of a collapse and are now being absolutely amazing and really putting forth every effort to get us some much needed help! THANK YOU!!! We are on the "emergency respite list" and hopefully we will have a few nights of help when I return from West Virginia. We are all keeping our fingers crossed. It has taken A LOT of work to get us on the list, but it certainly will be worth it IF it happens.

As far as the heart, there is no clear answer at this point. It is definitely not normal to have such low bradys for such extended periods of time, however he seems to be managing them ok. We did another 24 heart halter monitor yesterday and of course Max had very few bradys during that time period. Lil' bugger!!! Then this morning when he was finally off the halter, he started to brady again. So strange!

Tomorrow we are heading to Children's for several clinics and tests. Cardiology is seeing Max and doing an ECHO on him to check the pressures in his heart. This will help determine the need for long term oxygen and also if Max will require an additional procedure on his heart.

We will start the day with an ultrasound of his kidneys. Last year Max had to be on large doses of Lasix (a heavy duty diuretic) to help his heart function adequately. Unfortunately one of the negatives is possible calcification of the kidneys...sure enough this happened big time with Max. This can cause long term damage to the organ, and kidneys already are commonly impacted in CHARGE...so we definitely don't want to add further issues there. HOPEFULLY the calcification has decreased since he has been off of that diuretic for six months. Not sure what we do if it has not. We also will see the pulmonary team and check in with his nutritionist.

It will be a very long day but I am hoping we get some good answers to our many, many questions!

10 comments:

RebeccaA said...

I'm glad you're on the respite list. Hope my call to you on Saturday wasn't annoying. I just wish there was more I could do than pray for you and Max! :>)
I hope you get good news at Childrens this week!
Love,
Rebecca
Cameron and Nathan's mom

elle said...

they had to let u get to dying point befor they help ahpepns all the time they think oh he wont suvive with out mum so well give ehr soem help now

elle said...

well that my opinion anyway

Ruthie said...

I think Max misses all the special attention from a large group of people so he's "messing" with you with these little heart episodes. :) At least I hope that's what it is. But you tell that little guy that even though we aren't there personally, he has even more people "around" him than he did before. Hope everything checks out okay. Thinking of you alot.
Take care-

ang said...

I know you'll get some results down there at children's today..they have such good team dr.'s out there. (we start our rounds down there in July)
Chin Up!

Drew said...

I'm glad that you got on that list. Max figured out how to get all that special attention...he must have missed his friends at Children's. Hope they figure out what's going on with the big guy.

Drew

Dylan (and Kristy) said...

I'm so glad you are FINALLY on that list! Please take care and feel free to call if you need anything.

Tell our friends at Children's we said hello!

Kristy, Ray, and Dylan.

Steph said...

THANK GOODNESS you're on the list. It still boggles my mind why this is such an issue for those ridiculous insurance companies. Glad you have a good team of people -- agencies, docs, etc. -- who understand your needs. Hopefully that will translate into home nursing care when you need it...

Good luck with all of the clinics and tests at Children's...thinking of you and Mr. Maxwell lots!

Love,
Steph
xoxo

Moriah (zandysmom) said...

Good luck today! I hope you get some answers. And I REALLY hope that the problems are very minor, ot requiring much intervention or surgery.

Great news that people are scrambling to help you. You need help, you're doing such an awesome job.... you deserve a huge pat on the back (and a HUGE divorce settlement too ;) ).

(((HUGS)))
Moriah

Lisa W. said...

Hopefully you will get some respite asap...
I can't believe he waited until the holter monitor came off to start bradying again...