Sorry for no posting anything yesterday, it was the beginning of a long night followed by a longer day. Greyson’s c02 numbers have continued to climb. They stopped weening him in the hopes that they would come down and they could begin weening him again. Unfortunately this didn’t happen. So they increased his vent settings and the numbers got better for a short while and then started to rise again. Last night the Dr. talked to us again about using the steroids. It was his opinion after reviewing Greyson’s chart that if they were ever going to be used, now was the time to do it. We didn’t want to rush into this so we decided to wait and see how his midnight gas numbers were. They were really bad. His c02 had risen to 87 (this number should stay below 70). They raised his vent some more and eventually got the numbers into the 60’s. This also meant that he was now back to being pretty much maxed out on the vent. After talking to the Dr. this morning and seeing his blood gas numbers, not to mention walking in while he was de-sating bad and not coming back up for a long time despite being bagged, we elected to start the steroid treatment. He received his first dose at 4pm today. At 6pm his blood gas came back worse than ever. His c02 was now 97. They increased the vent again to a PIP (pressure) of 30, 2 above what they want to use with this ventilator as the pressure can do significant damage to the lungs. An hour later his c02 had come down to 65. They will leave him at this setting and recheck how he is doing at midnight.
The steroids will be in strong amounts for up to three days. Whether or not they work they will begin weening him off of them at that point. This is to minimize the negative side effects that come with this drug. We are praying 1. That we made the right decision to use them, although it looks like we were almost out of options 2. That God will work through this drug to give Greyson the push he needs to get off the ventilator so his lungs can heal naturally. and 3. That God will protect him from any negative side effects the drug may have.
So it was a rough couple days but I have to tell you how today ended (at least at the hospital, I’ll be staying up doing homework late and waiting to call in and find out his midnight blood gas). Anyway during his 8pm care time he was VERY awake and alert. His eyes were open and he was looking all around. I put my face down and started talking to him. For the first time he looked straight at me and even when he looked away came right back to look me straight in the face. I noticed a hair (long one must have been Stacy’s as mine are……..REALLY short) coming from his lip. I started the process of dabbing water on his lip and trying to wipe it off. It was stuck so much that when I pulled on it his whole lip came with it! So I spent over 5 minutes working on this and talking to Greyson the whole time. Throughout the whole deal he kept his eyes right on me! Even the nurse kept commenting on how intently he was looking at me. Stacy got in there after I got the hair off and finished getting the lip goobers off and he pretty much looked at her the whole time too! It was so great to have gone through this major stress with him de-satting, the bad gas numbers, and then to have Greyson cheer us up so much simply by looking at us intently.
Today was a rough day, but tomorrow is a new one. As always God continues to grant us just enough strength to make it through the day. Thanks for all your love and prayers for us!