Our Quiverfull - Not much change

Dec. 21, 2007

Not much change

We don't really have any answers yet. Noah's cultures haven't grown anything but won't be declared "clean" until Sunday night. He had an MRI of his left leg and hip this morning. His femur looks fine but there was a suspicious area in his knee. Once the doctor saw that area he wanted to get a better look at it, but Noah was out of sedation already. It is too soon to re-sedate him, especially because of his heart, so we may end up revisiting the MRI lab next week if no other explanation for all of this presents itself.

He has been seen by surgery, ortho, peds, neuro, and ID today. The biggest issue is trying to find out what is making him sick. He doesn't seem nearly as bad as last time we were here, but it is obvious that he feels yucky. ID said that we will certainly be here until the beginning of the week, so we'll be celebrating Timothy's birthday up here on Sunday. It looks like Noah and I won't be home for Christmas.

The other big events of Noah's day were getting a transfusion and getting a visit from Santa AND Frosty the Snowman! He got his picture taken and received a very nice toy which he has enjoyed when he has felt up to playing.

On the home front, all of the children have ended up with this tummy bug. Those who got sick soonest are starting to feel a bit better, but the newer cases are still really sick. I hope so much that they will feel up to coming Sunday for Timothy's birthday. None of them can visit until they are fully well and I miss them so much.

The doctors here have been in further communication with the doctors from CHOP and at CHOP's recommendation we are starting Noah on co-enzyme Q10 in addition to the carnitine. This, along with some vitamins, is called a "mito cocktail" and it is a standard "treatment" for children with mitochondrial diseases. it isn't a cure in any way but may slow disease progression in some children. No one can anticipate which children will benefit, and it can be hard to know if it is helping since the disease progresses at different rates and affects different body systems from child to child. The science behind it make sense, and it can't really hurt, so we are happy to do it. As more information comes in from CHOP it is becoming increasingly apparent to us that this mitchondrial DNA mutation of Noah's is significant and represents a true diagnosis for him. We have increasingly suspected that this was the case, but it is strange to have it confirmed. The doctor at CHOP was right when he said that if we didn't find a diagnosis we would be heartbroken and if we did find one we would be heartbroken. In one sense there is a feeling of closure - of knowing that we can stop looking for an answer. On the other hand that answer is one that we had hoped to avoid. Noah looks so good (if only I had a nickel for every time someone said that) and it has been relatively easy sometimes to think that he is getting better, that he has turned the corner, that we are past all of these hospitalizations and ready to just pick up our lives again. This diagnosis changes all of that, but doesn't give us any real prognosis. We'll just keep going like we have been, putting out fires and treating problems as they occur - and treasuring every single minute that we have with this amazing little guy and his wonderful brothers and sisters. We are so thankful for the gift of "right now" and the gift of our 7 (almost 8!!) blessings.

Love,
Kate

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Comments

Dec. 21, 2007 - Kate

Posted by Tami

I am praying for you and Noah and the rest of your family. I am so sorry that you and Noah are back in the hospital. I will especially be praying for healing for your other sick ones, so you might have a visit with them this week-end. You have touched me in so many ways with your posts. Noah is a blessing from heaven.

Have a blessed day!
Love, Tami
(CSP and MOMYS)