Our first day home.
I should probably back up and tell you about yesterday.
So, we were told a week or so ago that they thought Monday would be the day. I kept that little secret for a couple reasons.
Number one is that it could change (which it almost did). I knew that anything could happen and we wouldn’t go home. So, if that changed, rather then having to explain that, I just figured I would share when we got home.
The second reason is that I wanted it to be a surprise!!
The third reason is that I don’t normally talk forward looking. If I did, I would have to talk about everything twice. I typically just talk about what has already happened. It gets to be way too much to keep track of everything coming up.
So, the day started at 6am with my mom freaking out because Maxley pulled out his entire feeding tube from his stomach. His feeding tube has a little balloon on the inside to keep it in place and is also sewn into his intestinal tract. Yup, he ripped the whole thing out.
So, mom and I both said, ok well, we aren’t going home today. It wasn’t meant to be.
But, by 7am they had him scheduled to go down to radiology to get it placed again. He was just fine, just didn’t eat for a few hours.
Then, we were talking to the nurse practitioner (who makes the decision on when we go home) about how horrible of a weekend it was. How he didn’t sleep and he was so fussy. He hasn’t been himself, I think I wrote about that this weekend.
So, she basically said that she didn’t feel comfortable sending us home with him like that. It was really hard to hear. I really truly tried not getting my hopes up but I obviously did a little.
She said that she was scared something more was going on which I totally get. We talked a lot about the reasons I wanted to go home. Besides the selfish ones of wanting to sleep in my bed and shower in my room and wear different clothes than the 5 outfits I have.
The other reasons are that the nurses here have 2 babies. They sometimes let him cry for a long time. We wanted to get home where our nurses will only have him. They will be able to put more focus on him and they can do exercises and do tastings and give him really good 1 on 1 attention.
Also, the nurses are coming in all the time and waking him, doing cares, taking his temp, turning lights on, beeping noises. And sleeping in the same room as my mom and I isn’t the best either. If we toss and turn, maybe he hears that. I just think there were so so so many things that would help him sleep since he hasn’t been.
She totally understood that and we all wanted what was best for Maxley. Ultimately, I wouldn’t want to go home if she didn’t think we should.
She left the room saying that she was going to talk it over with all of his specialists and discuss what they thought.
BcIt was hours of talking with the nursing agency, working on getting his meds together, trying to pack, going through 50 pages of paperwork, orders, meds, caring for fussy fussy Maxley, learning to do a dressing change, a heparin lock and a cap change on his broviac central line he has.
It was SO many things to do without knowing when and if we were going home. The day was SOO crazy. Getting discharged is SO much. It is so many things to go through and of course you have all the questions right at the end.
They ended up running a bunch of labs to make sure that nothing else was brewing to make sense of the fussiness and the NP decided she was really ok with us going home knowing there was a chance we would have to come back.
He is so bad because of the weaning and that is a hard process at home. I have a 5 page typed order on how to do the weans in addition to the other 15 meds that he is currently on. Many of his meds are pills so you have to cut them, crush them, add water, draw them up and administer. It took me 45 minutes last night to do just his 8pm meds and he gets meds every 2 hours.
So, you all know the end of the story is that I got to take my baby home. We are home before his first birthday with the hope we will never have to go back but knowing if we do, that is ok too. The only way to know if we can truly do this, is to try.
I went to the pharmacy two different times before we left to get meds and both times they didn’t have them all so I picked up what they had. Well, we got half way home and realized I didn’t go back for the narcotics. NOT GOOD.
Thankfully my sister was able to run up and grab them for us. The pharmacy closed in an hour and we needed them to get through the night.
It feels surreal to be home.
The day before surgery. 
As you can see, he graduated out of the CVICU with his graduation cap!
You can tell how out of it he is because he won’t even smile for pictures. Anyone who knows me or knows my blog KNOWS that he is SO smiley and smiles for every picture. I haven’t seen him smile in a week or so.
I took one final lap around the floor to say goodbye to everyone. I saw both of our nurses that we had a lot when he was on ECMO and I got really emotional. All the feelings of those first days on ECMO came flooding back and I am just so thankful for the love, support and kindness they all showed during those days.
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