Monday afternoon they took out the breathing tube…but it appears that Lennon was not ready. He struggled most of the night, his Oxygen being in anywhere from 67-91 and the CO2 getting higher and higher.

While I consider myself a strong individual on many levels, I should never watch them take the tube out, because I watched my son not breathe, and that is the worse feeling ever. Tuesday morning they put him back on the breathing tube because he struggled too much.

One of his lungs had partially collapsed and there was some fluid that was interefering with the normal breathing process. His lung is reinflated (breathe) but ultimately Lennon was not ready.

He will do things on his terms, the way he wants to when he is ready. This is Lennon!!!

So yesterday I went home and hung out with my other kids (more or less). I think the important part was I was there for them and available if they needed me. Plus I needd to rest. I was close to if not exhaustion that could have hospitalized me, but then I wouldn’t be any good to Lennon. When he wakes from his sedation, I need to be able to support him and be there for him.

The support by our community has ben overwhelming but we certainly appreciate everything and anything that comes our way. The thought to make things easier for us is so unreal because in the last year or so, we did everything and anything ourselves. We certainly realize that now is where we need the help, but we are folks who have a hard time asking. Call it a pride thing, call it what you will. Nonetheless, we are gracious and thankful.

If you want to help go to …this is one of my stores online where I sell my artwork. Thanks!

Stay tuned….

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  1. I was so glad to read about the 2nd successful transplant. God is so good in allowing not one but two transplants in a week. I hope that L will progress in a positive way and they will soon be able to extubate and wake him up. I am so thankful that you were able to get some rest as you prepare for the time and work that comes when L wakes up. We will pray that L’s body will continue to accept his new liver and he will soon be on the mend. What a blessing it will be to be rid of his Urea Cycle Disorder.Please know that you have been very much in my thoughts lately and I will continue to pray for strength for yourself and your family and especially L.Thank you so much for keeping us update with your blog.Take care of yourself and all the best!!!Stephanie

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