Noah’s tracheostomy and g-tube surgery are tentatively scheduled for this Thursday. While I was walking in the stairwell this morning I ran into the NP from neurology who admitted Noah on 8/2. She was with one of the neurologists that has looked at Noah’s case. I stopped them and said hello and they asked about Noah. I told them about his upcoming surgery and they said that they could actually take a muscle and skin biopsy at that time because they can use stomach muscle for their tests. SO, that’ll be good to coordinate that at the same time. ALSO, neurology has been wanting to do a hearing test on Noah for a while now but they need to perform it while he is asleep. They’ve wanted to sedate him but we don’t want unnecessary sedation, SO, they are trying to coordinate the hearing test while he is under anesthesia on Thursday. Maybe this is why the surgery didn’t work out last week…so all these other things could be coordinated.

Today Noah’s nurse printed out his labs so we could give that information to the natural docs we are working with. IT WAS 150 PAGES LONG!!!! They are lining up their tests so they know exactly how much blood/urine/stool they need so they don’t have to provoke him more and more. It is probable he’ll need another transfusion, but the PICU docs took so much blood for their tests and to no avail. Jason and I feel like we haven’t exhausted our resources and connections, therefore we’ll have further testing done.

Thanks for your continued prayers and support. We’ll keep you posted.



5 Responses

  1. A friend e-mailed me with info about Noah and asked if I had any ideas. I am not a doctor but do deal with lots of little ones with rare disorders in my line of work. Has anyone ever mentioned mitochondrial disease? They probably have but I thought I would throw it out there anyway. I have read thru your posts and I have to say that you are truly an amazing person, not to mention an amazing mother. I am not sure that I would have your strength and character in a time like this. I will pray for Noah and your family. You have touched the hearts of many as evidenced by the blogs; I am sure you have touched the heart of God himself with your love for your child. May God hear our prayers for Noah’s recovery.

  2. Hi there! Its Tammy again… I wanted to let you know that I am praying for you and your family still. God has really put your family in my mind a lot lately even though I do not know you. I hope this encourages you. If God is laying your family on my heart then I know a lot of other people are praying too! Blessings my friends!


  3. I am happy to hear that things are going some what better for you all. my though tand prayer are with you all. and tell Em that she is the bestest big sis. I just love it when the older sibblings show so much love it just melts your heart. all our love and prayers the Pettee’s

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