Today was weird day. As far as Levi goes, he was about the same. Still up on the pump. Hit sats were a little better for a lot of the day. We haven't had any breath sounds for a few days now. They stopped his chest PT a few days ago because he had some bloody mucous coming out of his lungs. They started chest PT back today because he seemed to be doing better when we were doing that. We were talking to the nurse practitioner today and looking at his x-rays from the past few days. We told her about his x-ray from sat morning and she apparently hadn't seen it. That was the only day that he actually had any air in his lungs. The x-ray was taken about 3-4 am in the middle of Levi having his good night (Friday). Anyway, she was comparing that x-ray to today's and thought that it looked like the breathing tube was a little further in today so she had the nurse pull it out slightly to see if that would help let air in and she was the one who said to start chest PT back since we stopped hearing breath sounds after we stopped that. Dr. Anderson was telling us today that in a few days, after we get some more fluid off, he wants to try and give him some special oxygen through his breathing tube and see if it will help at all. He said that if it will, it should help in the first 24 hours or so. So that is where we are with all of that. Hopefully Levi's lungs will not get aggravated by the chest PT and these small changes will help.
We also received some news today. The doctors typically check the chromosomes in babies with CDH to see if there is some type of abnormality that could have caused it. Well, they got the results in today and told us that Levi does have an abnormality in his chromosomes and one of the common things that occurs with it is CDH so now we know that this is why he has the hernia. They also believe that this is a spontaneous occurrence and not a genetic thing. This doesn't really change anything, just tells us where this has come from.
Several friends visited tonight and prayed over Levi. I was so happy to see you all. I am so grateful for good friends who are willing to come pray over our sweet boy. Tomorrow our pastor is coming to anoint Levi with oil and pray over him. Thank you all for your consistent prayers. We love you all very much.
I think I started to feel a little better today after talking with the nurse practitioner and deciding to make a few changes. As the day went on I am not sure what happened. At some point I just felt really peaceful despite how much is out of our control and then I think I reached a point where I just felt numb. I really don't know what I am feeling now. I guess I am overwhelmed. I want to make sure Caleb doesn't feel unimportant and we also feel like we need to be there pulling for Levi as much as possible. A couple weeks ago we took Caleb to the drive-in to see Smurfs and as hard as it was to be out there trying to do something normal, I am so glad we took the time to do something fun for him that is a little more normal. Today we took him to his baseball game and watched him play(we haven't had to miss a game yet and I hope we don't have to) but I think in a few days we will try to have a night just for him again and take him to do something fun. I see him struggling and it is so hard to watch, but I don't feel bad for being at the hospital a lot, I feel like we have been where we need to be when we need to be. I do feel bad that Caleb has to go through this though. I wish I could make it all better, but I know this is all temporary and we are doing our best right now.
Hoping for good news tomorrow
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Glad to hear your pastor is coming to anoint Levi with oil. Last night, I went up during the service when they asked if anyone needed prayer and joined with a lady on our prayer team. Turns out, she had heard of Levi via facebook. She prayed such a wonderful prayer. It was fervent and anointed. I was also able to really cry out to God yesterday on Levi's behalf (it helps when you are by yourself ;)) and I am confident my God heard me. I remain full of faith for Levi and will continue to hold you all up in prayer. To God be ALL the Glory for what is He is doing and going to do in Levi.
ReplyDeleteHi Becca,
ReplyDeleteMy name is Lurenda Avery and I serve as the coordinator for Footprints Ministry here in Birmingham. I want you to know that all of our volunteer base is praying for Levi, as I've received multiple requests from several people, including Crystal and Gabe Stewart (Zander's parents). We have prayed Zander through his many ups and downs and we're doing the same for Levi. We know that God is the ultimate physician and that He has your precious baby and your family held tightly in His loving arms. One of our volunteers is planning to bring you a little surprise from Footprints next week. In the meantime, if there is anything that you need please feel free to let us know. We're a NICU ministry with a whole bunch of NICU miracle babies and we'll be more than happy to provide meals, help with gas or just sit and listen and pray. You can reach me at bhamfootprints@hotmail.com or call me at 205-281-3946. Praying always.