Mattsmom277
Active Member
I can't explain the way this kid is moving me. I can't believe he is still here. Alot has happened but I wanted to update all of you who were saying prayers for him and his family on how things stand right now. Here is a copy from my foster sisters online blog of the most recent update (about 10 hours ago).
Extubated!!!!!!
Posted 10 hours ago
Can anyone else believe that there is now an extubated kid without a heart sucking on pink mouth swabs and watching movies in the PICU. I cant! A crowd of about 12 people including: Child life, pharmacy, Holgers second in command, the cardiologist, the PICU doctor and resident, Jonas 2 nurses, 2 respiratory thearapists, a student, one of the transplant coordinators plus us. Keeping him in bed is a nightmare. One of his nursess literally caught him as he was trying to roll out. A few minutes after he was extubated the PICU doctor turned to me and said Soooo mom what do you want to do about sedation
It took all my strength not to laugh at him and remind him that that was my concern 2 days ago, your problem now. Lol.
Over all Jonas did well with extubation. His body took a little bit to adjust but his blood work/gases are good. He is not alert enough to listen or understand that every time he moves his dialysis line goes off (which it did all day) and that all the lines that are running his medications are too short for him to be rolling over and that his heart tubes for lack of a better word cant bend or we are in BIG trouble. Niels and the cardiologists brainstormed some ideas around how to reinforce the lines so that they wont kink. The cardiologist got a call from Holger who is away right now and she told him we would be taking Jonas out for a walk soon. I love her sense of humour. All Jonas kept saying was that he wanted a swab please (we went through 1 ½ packs) and that he wanted up up in mommys arms and mommy hold me. It broke my heart to hear him say that. All his wiggling did result in 3 poopy diapers today. Woo Hoo, Hooray! He also, unfortunately, is going through some withdrawal from his narcotics and this is making it difficult for him to settle and feel calm in bed so he did not look comfortable when we left tonight. The pink swab ordeal was actually quite funny because he always asked with a please and insisted on doing it himself. If you touched his hand or the stick to help him he would drop it and say NO in a high pitched squeal that your voice gets after extubation. He even insisted on dipping it in water all by himself too. What an incredibly strong and amazing little Viking. An inspiration to me.
Extubated!!!!!!
Posted 10 hours ago
Can anyone else believe that there is now an extubated kid without a heart sucking on pink mouth swabs and watching movies in the PICU. I cant! A crowd of about 12 people including: Child life, pharmacy, Holgers second in command, the cardiologist, the PICU doctor and resident, Jonas 2 nurses, 2 respiratory thearapists, a student, one of the transplant coordinators plus us. Keeping him in bed is a nightmare. One of his nursess literally caught him as he was trying to roll out. A few minutes after he was extubated the PICU doctor turned to me and said Soooo mom what do you want to do about sedation
It took all my strength not to laugh at him and remind him that that was my concern 2 days ago, your problem now. Lol.Over all Jonas did well with extubation. His body took a little bit to adjust but his blood work/gases are good. He is not alert enough to listen or understand that every time he moves his dialysis line goes off (which it did all day) and that all the lines that are running his medications are too short for him to be rolling over and that his heart tubes for lack of a better word cant bend or we are in BIG trouble. Niels and the cardiologists brainstormed some ideas around how to reinforce the lines so that they wont kink. The cardiologist got a call from Holger who is away right now and she told him we would be taking Jonas out for a walk soon. I love her sense of humour. All Jonas kept saying was that he wanted a swab please (we went through 1 ½ packs) and that he wanted up up in mommys arms and mommy hold me. It broke my heart to hear him say that. All his wiggling did result in 3 poopy diapers today. Woo Hoo, Hooray! He also, unfortunately, is going through some withdrawal from his narcotics and this is making it difficult for him to settle and feel calm in bed so he did not look comfortable when we left tonight. The pink swab ordeal was actually quite funny because he always asked with a please and insisted on doing it himself. If you touched his hand or the stick to help him he would drop it and say NO in a high pitched squeal that your voice gets after extubation. He even insisted on dipping it in water all by himself too. What an incredibly strong and amazing little Viking. An inspiration to me.
