Saturday, August 16, 2008

Life at home

Wow. Life at home is quite the transition. It probably is for EVERY kid that is in the hospital for a long time. But it has already been quite the blessing and the challenge. I have already cried tears of both extreme joy and extreme frustration/stress - and it hasn't even been 24 hours yet!

Yesterday after we got home, Timmy had a lot of vomiting. In a moment of panic, I called one of my nurse friends and she kindly reminded me of what things the doctors have done in the past when this happens. Sometimes we just need someone to help us to stop and think. Clearly, Timmy has puked before. And each time it happened before, we followed the same pattern of care. So I will try to do that same thing at home. Although I appreciate the doctors and nurses, it is difficult to describe how much damage the chaotic atmosphere of a hospital can do to a kid with a mitochondrial disorder. Unless I am sure that there is a specific thing that Timmy needs that can only be provided by the hospital, I do not want to go back.

Thankfully, Timmy slept most of the night last night. Today we resume our daily routine. I will be working towards putting his body back on a normal sleep and play schedule. This means that for now, we (Lara and Timmy) will not be taking visitors or phone calls from 9-11 AM and 1-3 PM (and 5-6 PM as needed) each day. I notice that sleep makes a HUGE difference on Timmy's strength and also his agitation/relaxation level. So we will be taking at least these 4 hours each day so that we can rock and cuddle and sing and slow dance (and hopefully SLEEP).

Please continue to pray for wisdom for me as I become Timmy's primary caregiver.

As I was doing some research on mitochondrial diseases, I found this quote to be very interesting:

Statement from Chuck Mohan, executive director and CEO of the United Mitochondrial Disease Foundation on reports of possible links between childhood vaccinations and mitochondrial diseases:

"There are no scientific studies documenting that childhood vaccinations cause or worsen mitochondrial diseases, but there is very little scientific research in this area. Mitochondrial diseases are as prevalent as childhood leukemia, however the National Institutes of Health devotes only $11 million a year to research into mitochondrial disorders and only about one-third of that is earmarked for primary mitochondrial disease research. Many scientists believe unmasking the causes of mitochondrial disease may lead to possible cures for Parkinson's, Alzheimer's, heart disease and cancer."

(From Medical News Today)


Anonymous said...

Your daily plan for Timmy's rest/relaxation/play sounds really good. Please take care of Lara too!


Anonymous said...

You are the number one Mom! Thank you for being so proactive with Timmy's care. We love you and will be over in a couple of hours with groceries! But very quietly, of course... smile ... and glad you all got some sleep.

I think the comments about mitochondrial disease are very telling. I, too, read that some things considered SIDS may very well be a mitochondrial disorder. More research needs to be done. The University of Chicago has a mitochondrial research division. It's one of those things you don't think about until it hits someone you love. And they will probably have some more donors because of this!

Anonymous said...

I agree--you are an amazing mother, Lara. The depth of your walk with God is so obviously what is carrying you as you face each day. And, as your friend Laurie told you, the hospital staff has commented on how strong you are.

I know you feel weak at times, but you have planted your feet so firmly on God's firm foundation that it is a testimony to us all.

I continue to pray for you--that each day will be full of sweetness with Timmy. And that the familiarity of home will make him feel greatly comforted.
Love, Donna S.