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| Hanging in there... |
It was a rough night but Jake has been having a better day. He started having severe withdrawal last night and was shaking really bad and vomiting about 5 times an hour. I was very scared because he looked so bad. It is not uncommon because he was on a ton of medications and then they had to turn it all off to get him awake enough to extubate. They put the dex drip back on to help transition him and increased his valium that he was getting through his g-tube. They also gave him some rescue meds to help catch him up. It worked and he slowly started shaking less and has not vomited since last night.
They had to put him on high flow oxygen to help since his oxygen SATs took a hit with how sick he got but we have been able to slowly ween that down today and will hopefully be going to the regular nasal canula. They are about to turn off the Dex IV drip as well so please pray he doesn't have any more withdrawal from that. It is so hard to watch him suffer and not be able to help him.
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| Holding our sweet boy after extubation. |
Everyone is very happy with his progress and there is even talk about sending us to the step down floor this weekend. He was not able to eat for a while because of his vomiting so speech could not come today. If he is successful at coming off of the high flow oxygen then they can start working on him eating by mouth.
There was talk of us going home next week but we are going to see how it goes. His surgeon had said she wanted to do another bronche on Monday but today they said two weeks. I told them that we can't go home and come back a week later. It would be too much on Jake. So they are going to see if we can just go home and come back in a month for his bronche. Again we still have a lot to do before we can think about "Home" but it is being brought up.
Andy, my mom and Aidan are going home tomorrow. If we knew for sure Jake could come home Monday they would stay and we would just go back together but since we have no way of knowing they need to get back. So we are going to play it day by day and if we get discharged before next weekend we may stay in the city for a few days and figure out a good time for Andy to come get us.
Overall Jacob is doing really well. He has been alert and clapping and even playing some. He LOVES his beads of courage. As soon as I showed him he grabbed them and has even sat up to reach them. He got more beads today for everything he has been through over the past week.
We have been holding him a lot today and giving him lots of love. We had a beautiful moment today as Aidan was able to sit and tell Jacob how much he loved him. Jacob kept feeling Aidan's face. Aidan told Jake that he was the best brother he could ever have. I am so blessed!
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| Brotherly Love |
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| Me and my boys. Jake looks so sad. |
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| Snuggling with Mimi. |
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| Loving on Grandma. |
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| Bubbles with Daddy! |
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| Such a good big brother. |
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| Aidan hanging with the grandma's. |
Bless his heart...he has been through so much. I was glad to see that you were finally able to hold him, and the picture of him with his brother was very precious and brought tears to my eyes. I have faith very soon that the sad look on his face will be smiling at you. continuing to pray for him , and for all of you . God bless
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