It is 10:32 and I am exhausted so I can’t do a WHOLE thing but I will give a little insight into our day.
The biggest thing we did today was took him down for a head CT and chest CT. They scheduled the chest CT to see how much fluid was building around his lung to see if they will need to drain it and it looks like there isn’t much there which is good. They also always do a head CT after ECMO to see if there is anything concerning. He got one after he was on ECMO as a baby so it will be interested to hear the results and compare them. We didn’t hear back on that today.
We had to sedate him and it did NOT work. The dose they gave him should have knocked him out but it did not. It took a lot of coaxing and squatting to hold his hands through the donut machine thing in order to hold him still long enough to get the imaging they needed. Then, once we were done, the versed seemed to hit him and he slept in my arms for about 4 hours.
We went up again on his vent settings so he is on a lot of vent support. We are one step below intubation. Not that they are talking about that yet but just sucks. We have several IV meds and have just taken some large steps backward.
Everyone keeps apologizing to us and looking at us like our dog died which makes it harder. I kinda wish everyone was more nonchalant about it and I prolly wouldn’t think it was such a big deal. The surgeon did come in today and said that this is all fixable. Which I didn’t know I needed to hear but I did feel better after that.
I think you kind of forget that he is currently in the ICU and on a ventilator. I mean, relatively speaking, he is doing amazing but in the gran scheme of life, he is really sick and that hurts.
We have been here over 6 weeks and we are in a worse spot than we were 6 weeks ago today. I miss home. I miss life. I miss my Maxley and I am sooo tired. I am so sick and tired of people touching him and him just begging for a break and a freaking sip of water. Both of which I have to constantly tell him no.
No, you can’t have a break because they have to do cares and get vitals every 2 hours and no you can’t have a sip of water because your lung got punctured 6 weeks ago and your health is declining so you can’t have a drink.
I am sad. I am just so sad and overstimulated by ALLL of the noises and all the decisions and the talking and the explaining. I am just sick of it all. But, I don’t get to be because we get to get up and do it all again tomorrow and the next day and the next long while.
Please keep the prayers coming for Maxley’s health to start improving. For us to take some big leaps these next couple weeks. We all need it.