Well, since last post, we have had a couple very encouraging changes. First, a room at the Ronald McDonald House opened up and we were able to check this past Wednesday. It is such a HUGE blessing...there is a craft room, play room, TVs in multiple different 'family rooms', a playground, great food, and just more space to move around in.
The procedure on Wednesday went well, they did remove some granulation tissue that was above the first t tube and they decided to go ahead and put a new t tube in that extends further up (helping to stent any 'floppy' structures). The doctors sounded like it was a sure fix, however, Carson still did not tolerate capping Wednesday or Wednesday night. We knew that if we couldn't get the capping to work out we would be in another pickle. Thursday morning, we started with 10 seconds & Carson still hated it but we tried to make a big deal out of every small win. I went over to take a shower, etc. and I first got a text from Preston...he made it 25 seconds! And then I got a call and Carson HAD the cap on & was breathing just fine. PRAISE THE LORD! From that point, he kept the cap on all day & night. We felt 100 pounds lighter and Carson ended up being discharged the next morning. We were so proud of Carson because he worked through his fear and anxiety about the cap and stuck with 'practicing'. This kid is a rockstar! He was SO excited to get over to the RMH & sit with Ronald (& see Kellen). He played hard that day!
The plan is to stay here until Wednesday morning when the doctors will scope the t tube one more time & make sure everything looks okay then I believe we will be going home! However, I'm holding my breath a bit because as if we need another hiccup but Carson ran a really high fever last night (104)...we called the doctor but they said it was up to us if we wanted to bring him in or just monitor him at home. We decided to watch him (knowing he would get more rest if we were able to stay here). Thankfully, his fever broke about 3 am. Please pray it was just a quick bug & he will remain healthy...also for guidance for Preston and I...although the t tube is similar to the trach, it is still new so we are still trying to figure out all the ins and outs and mostly just what a normal baseline is for Carson with a t tube.
And to make things even more interesting...Kellen has thrown up several times this morning...oh the joys. Praying, praying! And so thankful that Nana is still here to help! Thank you for your prayers and support! Love to all!
No comments:
Post a Comment