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March 22, 2016

The Honeymoon Is Over

If yesterday we took 3 steps backwards, today we took another 10 backwards.

It's never fun to receive a phone call from the NICU during the wee hours of the night.

Aiden's CO2 levels were around 100 and they couldn't get them lowered. This caused him to D-sat again. So they quickly put another artillery PICC line in his arm. This way they can draw blood as needed to check his blood gases.

He isn't doing good. And doesn't look good either. The stress has made some of his swelling come back in his head and around his lungs. His coloring is off, and his lungs are still struggling. We spoke with the charge nurse and was only delivered bad news after bad news on how he's doing. When David asked her to give us something positive, all she could give us is that he's tolerating his feedings really well.

They started him on medicine (nitros oxcide?) to help with his pulmonary hypertension. We are hoping it'll also help open the veins in his lungs and help him to take deeper breaths, absorb more oxygen, and better release his CO2. Some studies suggest this medicine can also help the lungs grow.

They also found his red blood cell count is low due to all the blood they need to constantly take from him. So they will be starting a blood transfusion for him this evening. This will also hopefully help him better move oxygen around in his body as well.

It seems like they need to find his magic set of medicines and numbers to help him the best. We just hope and pray they can get that figured out soon so that he can finally begin to recover and grow.

After playing around with his ventilator numbers and starting the nitros oxcide, he started doing a little better this afternoon. His color started to return and he was a little more relaxed. His breathing wasn't quite as rapid or strained. And he even woke up enough to open his eyes and look at us a little. After such a rough few days and an awful morning that truly seemed like we were losing him, seeing him open his eyes and looking at us helped us feel a little better. I like to take it as a sign he's telling us he's hanging on and trying.

Now here's to hoping and praying his blood transfusion goes well and that helps him out.

Positives of the day:

- The girls are really loving staying at the Ronald McDonald house. It's like one big playground to them and I think that's helping them cope with this really tough situation.

- He opened his eyes and interacted with us!

- Since he loves his sister's voices so much, the hospital is going to give us a teddy bear that we can record their voices on and then be by him all the time. The nurse can play it whenever for him.

- He put out some really big diapers this afternoon, which means his body is still working through his extra fluid.

7 comments:

  1. Oh, honey! We are praying for your little guy to keep fighting!

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  2. Oh, honey! We are praying for your little guy to keep fighting!

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  3. Prayers for you all. About how many families are at the Ronald McDonald house with you? I would love to come up with Matcus one night and fix dinner for you.?

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    1. That's very sweet of you! I honestly have no idea how many people are with us right now. And I'm not sure how you'd go about volunteering for that. I'd give them a call and see.

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  4. I want to take a moment to tell the world how proud I am of my daughter (Corissa) and my son (David). Your strength and love goes beyond any measure that only loving and caring parents can have. It’s you love that is giving Aiden the strength to fight with his Heavenly Father to stay here on earth. He loves Aiden just as much as you do. Aiden’s love for his sister is also helping him fight.

    Keep the faith. Keep praying. Keep fighting. Keep supporting each other. Keep smiling.

    Love, Dad

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    1. Thanks dad I love you too ❤

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