Today is Day 4 of recovery. If you’ve been following us on Facebook, you will know that it’s been a rough couple of days.
We got home on Wednesday just after 10 am and Braxton played for a little bit and then settled in next to momma on the couch for a nap. He was extremely sleepy most of the day, but he was also very restless. He would sleep for about 15-20 minutes at a time, wake up, try to get comfortable and then drift off to sleep again. Thankfully, he slept alright through the night only waking twice in pain.
Yesterday, I thought he was starting to look better. He ate a little bit of Yogurt and Applesauce which I’m sure helped his throat. He even played a little bit more than Wednesday, but he was still very sluggish and lethargic at times. I decided to stop giving him the narcotic the doctor gave us and just try to manage his pain with regular Tylenol and Ibuprofen. I felt like the narcotic was making him so sleepy even though he has had no issue with it when given after other surgeries. I didn’t see an immediate improvement, but I gave it some time to get out of his system completely. He had another good night Thursday and even slept late today!
While today has certainly been his best day, I’m still concerned about his low points. He will play and then just lay down wherever he is and try to fall asleep. I will move him next to me on the couch and he sleeps for a little while and then he wakes up like he doesn’t know where he is. He looks very out of it and hasn’t even had the narcotic in over 24 hours at this point. I have placed him on my chest and he will just sit there for quite some time without even falling asleep. Occasionally, he does sleep and I just hold him until he wakes up. I’ve never seen him like this.
Our ENT’s office called earlier today to check in on him and I told them that he seemed pretty lethargic and asked if it was out of the ordinary. The nurse didn’t seem to worry since he hasn’t had a fever and is having sufficient wet diapers. She also warned that days 5-7 are the worst for recovery as the surgery site begins to heal and scab over. So, it looks like we are in for a fun weekend. The nurse said it’s not uncommon for children to complain of ear pain, neck pain, and just generally feel uncomfortable. This is the point where it is frustrating for me to know that Braxton cannot express this pain and discomfort. He has been so sluggish and I am fearful of keeping him on the narcotic only to make him more tired and out of it. There are times when I can tell he is hurting by the face he makes so I give him extra cuddles and medicine if it’s time. So, I’m thankful to have *some* clue, but I really wish it wasn’t a guessing game and he could tell me exactly what is going on. Poor baby. 😦
This evening, Braxton is looking more like himself and playing and even laughing more which makes me very happy. Braxton ate 8 ounces of applesauce today…yayyy!! It’s so nice to see a smile on his handsome face again. I’m hoping the next few days won’t be so bad, but I’m preparing for the worst. This is definitely the toughest recovery period of all the surgeries he’s had. Even his hand surgery wasn’t this bad. Keep praying for my sweet boy.
Followed up with the hand surgeon today, and Braxton got his bandages off!!! Yayyyyy!! He was definitely happy to have his hands back. He kinda sat in the office for a minute not knowing what to do. He held his hands up like he expected his freedom to be short lived and have bandages back on his hands. But doc came in and took a look and said everything is healing well and it was ok to keep the bandages off. He did say we should maybe put a sock on his hand if he’s going to be crawling around too much. Brax is good to resume all therapies without restrictions too, so I’m happy we can get back to work on getting him mobile!
As soon as we got home we let Braxton lay on the floor and he immediately flipped himself on to his tummy and popped right up on his hands up on all fours. 🙂 He’s still very determined to start crawling soon. We let him play on all fours until he wore himself out. He’s so happy to have his hands free again. He doesn’t seem to be in too much pain….for now! He should be completely healed up in another week or so. Exciting!!
He held his hands out for a minute thinking they were going to get wrapped up again
He watched the nurse leave thinking why she didn’t wrap his hands I’m sure
Yayyy my hands are free!!
There is no greater testimony to that quote than Braxton. This child is so incredible! Sure, I’m his mom and I’m supposed to say that, but you can’t say you don’t agree! 😉 Braxton has gone through so much in his short life and yet he is always smiling and laughing and lighting up everyone’s life. Through his recovery from the hand surgery, he’s had moments of frustration and sadness, but they pass quickly and he’s back to enjoying life. He’s tried so hard to adapt to the situation as well. Thankfully, his thumbs are out of the bandages so he’s becoming quite proficient at using them haha. He’ll reach out for his pacifier with his thumb and you can see satisfaction all over his face when he manages to get it and put it in his mouth without any help. Sometimes, he’ll even just bend himself forward to try and pick up the pacifier with his mouth! I look over and Braxton has folded himself in half! He’s like that with everything though, he’s going to be a happy kid who can adapt well to any situation. When he was learning to sit on his own, we’d sit him up and when he fell over instead of crying he just flipped himself to his tummy and started trying to pick up on all fours instead. It seems like he just thinks “Well, that didn’t work, let’s just try something else instead.” He’s not giving up, he’s finding other ways to entertain himself and strengthen and learn. Adaptation is so far one of his strong points.
As far as the ear and sinus infections go, he’s definitely starting to feel better. He sounds much less congested and hasn’t vomited anymore. He’s tolerating his feeds well and we’re slowly working on increasing the speed back to where he was before he got sick. He’s been very vocal this weekend too. We haven’t been able to use his hearing aids since he’s still having some ear discharge from the infection, but hopefully by tomorrow or Tuesday he should be ok to put them back in. Nonetheless, he’s been babbling away and shrieking with excitement randomly throughout the day. Watching him and sister play right now and he’s cracking up with her and actually responding to her silliness. It’s so great to see that. I can’t wait until he can really talk to her and hear her with no problems. More importantly, I’m glad that she’s been so great with him. Proud mama for sure. 🙂
We have a busy week ahead. Braxton has his regular PT and Speech therapy appointments, OT is on hold until his hands are out of the bandages, we have a follow-up Wednesday for another bandage change, Thursday we follow-up with the audiologist for his hearing aids, and Friday we go for his Gastric Emptying Scan. Busy, busy, busy, but Braxton will get through it all with a smile on his face. Resilience. 🙂
Kisses and hugs
Love and smiles from the kids
Exhausted after a long day
How is that even comfortable?!
Man oh man, we have a long, hard road ahead! If you can believe it, this has been the roughest weekend we’ve had with Brax since we brought him home from NICU. He’s never been one to fuss too much, but he was not a happy camper this weekend. Poor baby was doing so well trying to crawl and now he’s not allowed to bear weight on his hands at all!! It’s been pretty tough trying to keep him off of his hands. Every time we lay him down he flips almost right away, he’s up on his hands and smiling as big as ever! So, obviously it doesn’t hurt it too much, but the doctor said too much weight bearing and it could damage the surgery site and skin graft site, sooo better safe than sorry and we’ll be keeping him off his hands.
We’ve been trying all weekend to find things he can do without his hands. We’ve sat him up quite a bit and read him some stories, he’s got a penguin punching bag type toy and he seems to enjoy that, and we’ve also let him do LOTS of jumping in his bouncer. He LOVES that thing! He’d bounce in it all day if we let him (but he falls asleep in it, so we take him out). He’s also been sleeping much more than usual. Probably because he’s so bored from being kept off his hands. But he seems a little restless too.
It’s tough getting him to sleep at night, it’s like he just can’t get comfortable and just kicks and kicks until he falls asleep. The hospital sent us home with a pain med prescription, but I hate giving him such strong medicine if he doesn’t need it, buuutt he doesn’t complain enough for me to know when he needs it! Gahhhh, talk about frustrating. I mean, I know if *I* had surgery I’d probably need it so it seems mean to keep him from it, especially since he’s not old enough to tell me what’s wrong. Guess that’s really been the struggle this weekend. Knowing when to give him the pain med versus just regular Tylenol or Ibuprofen. And of course keeping him off his hands, which he is just dying to do. Seriously can’t even leave the room if he’s awake because by the time we come back there he is on his tummy up on his hands. Silly boy.
I think, overall, it’s been a pretty good weekend. Taxing on us mentally and emotionally, but we’ve had some good times too. Brax still seems to be in such good spirits and manages to laugh and play with us an awful lot. Just hurts to see him trying so hard to want to crawl, to grab his pacifier, to reach out for toys and just not be able to with the bandages on. 12 more days of this. Yikes!
We went out to eat this weekend and Brax just stared at the food. Think he was bummed he couldn’t reach out with his hands for it. Too cute though!
Braxton the sorcerer!!
Let me take a look into my magic ball!