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!