Extubated!

We want to share the news that Luke got extubated (taken off the ventilator) on Tuesday afternoon!! After my last post, we had some rough patches, related to withdrawal from some of his narcotics, and because of gas/constipation/tummy problems. However, it all got resolved and on Monday, they turned his ventilator down so that he was doing all of the work again. They left it like that all day and night, and Luke did great. So, on Tuesday, Andy and I agreed with the doctors that Luke was ready. I must admit that as much as I have been looking forward to this day, I really was anxious about it instead of excited. My Mama Bear instincts made it hard to stand there and watch Luke cry and struggle for an hour before they gave him some morphine to help calm him down. I kept telling Luke (and myself) that it was all going to be worth it, and it was! He didn't have the best blood gas numbers (ph and carbon dioxide) for a few hours, so they wouldn't let me hold him because he wasn't stable enough. He looked good clinically (his oxygen level, respitory and heart rates), so they just gave him some time. When the night shift came on, I asked AGAIN about holding him and they let me. And low and behold, his next blood gas numbers were perfect!! I made sure the staff knew what the change was that made the difference (according to me, of course), so they would consider allowing a mother to hold her baby sooner next time. The doctor jokingly told me that I was here as a mom and not a Child Life Specialist. :) I hadn't told this group of doctors that's what I did, so I guess word got around. While I am on this topic, I want to commend the medical staff for doing such an amazing job caring for Luke and keeping this very attentive Mama in the know. Overall, it has been surprising to me how involved they have let us be in the rounds each morning, and with decisions regarding Luke's care.

Anyway, back to our little miracle. Today, he is on the lowest setting of his high flow oxygen, so he should get switched to just a nasal cannula later today. Once he is only on that, we are ready to leave the PICU and go to another room on the regular unit. It is a step in the right direction, but I will definitely miss the staff and protection of the locked doors here in the PICU. I just want to cover Luke up or put him in a bubble when we go in the hallway to transfer rooms because so many patients have RSV and Luke doesn't! I do NOT want to have to come back and do this again, or stay longer because of someone sharing their cough and germs with us.

The last couple of nights have seemed very long. Luke had a few episodes of intense withdrawal from his fentanyl and versed, as show by his heart rate in the 200's and tremors. It was so hard for me to watch, but they gave what they call "rescue doses" of morphine a couple times to help him through it. He is still on Methadone and Valium, which will slowly be tapered off, but not before we go home. He will have to start taking his bottles again before we can go home. He is just very tired from working so hard to breathe, and his muscles are weak from not being used in a month. He took small amounts yesterday from a bottle twice, and took half of his noon bottle today. I asked for a speech therapy consultation, so they should be by today. I feel like he will catch on again for sure, but don't know how long it will be before he has the stamina to take all of his bottles.

As for the rest of the family, they are doing okay. Eli went back to school this week, and did much better than expected getting up and ready for the bus. Andy doesn't feel well, so he has stayed home with them the past couple of days. He did bring the kids and dinner up to the hospital on Wednesday night. All the kids came back and saw Luke and then I took them to the waiting room and we played while Andy held Luke. (This was before Andy had his sore throat, and he had a mask on the whole time)!

We have met so many families on this journey who are going through the same, or even more stressful situations. We try to encourage and support them as we are able to. There are parents who have been away from their other kids for weeks because they live far away, and parents who have been in and out of here for years with their chronically ill child. And, unfortunately, some parents who had to leave without their child because they didn't win the battle. We pray for them, and ask you to also. We are fully aware of how different this could have gone, and are grateful to God for his mercy and love for us. We know He loves every single child here (and adults too), and we don't pretend to understand the reason that some children live and some die. We just remain faithful and thankful that our prayers were answered in this way, and that Luke will be coming home with us soon. So far, it seems like this past month hasn't had any negative affect on his brain development. Only time will tell for sure, but he sure seems like the smiley, interactive baby that I knew before this happened. And, no matter what, we love and adore him unconditionally, and are beyond thrilled that he is doing so well!