castaway
Nolan had his cast removed this morning. It was a traumatic event requiring both Ronan and I to hold him so the guy could cut it off. I know people all up and down the halls could hear his screams, not the most comforting sound when in a hospital setting. It is so nice to look at him and see just his sweet little body, two shoes and all.
He has tried a little bit of walking today though it is supposed to take him a while to feel comfortable with his naked leg and to build up strength again. He will have lots of motivation one he sees his cousins on Saturday. We are also hoping to introduce him to the swimming hole while we are there now that he has no cast and is healed from surgery. We are all looking forward to being in the mountains together, healed, happy.
green
We went to the Orthopedic clinic yesterday to check on Nolan’s leg with the hope of getting his cast off. They did remove it to x-ray his bone and see how the healing was going; The x-ray showed it had healed “about 6/8ths of the way”. When that is the case they let the child decide by giving them a chance to walk around on it and see how it feels. Nolan would collapse his leg every time he put weight on it and was obviously uncomfortable with it. So we put another cast on, this time green for a change. He will get it off right before we head to the mountains for our family reunion so he will be learning to walk while we are there. I think he will have lots of motivation as he tries to keep up with his older cousins which I am thankful for as he has gotten used to being carried around.
He has totally recovered from the operation. In fact he had seemingly forgotten about it by the next morning and was raring to go at 5 a.m. Wednesday morning. It is so nice to have it behind us and we look forward to seeing the little scar that will be the opening line to yet another story. We will go back to the surgeon before we leave for the reunion to so a follow up but things seem to be healing really well so I think it will be a quick visit.
Nolan these days…
Here’s a very short video of Nolan walking around in his cast. I’ve got another one I’ll add if I can get the upload to work, so check back.
At home, ahhh.
The surgery went well according to the Doctor. If all heals well he will be ready for scuba diving in two weeks! Or at least a dunk in a pool… He was quite out of sorts when I went to be with him in the PACU but calmed down once we got to snuggle. He is wiped out and still seems to not feel too well but took a little milk and then fell asleep so we are hoping some good rest will help him start to feel like himself again. According to the doctors he should be pretty much over the pain and ready to rumble by Thursday as long as things heal up nicely. Meanwhile we have to keep him as still as possible for a toddler for the next twenty-four hours and watch the site for signs of infection.
Mom and Dad are wiped out by the early morning rise and anxious wait but so happy to have the little man home. We are looking forward to next week when not only will he be over this hump but should become cast free! I will post later this week after I have had some sleep and can give an update on his healing– and perhaps be a little more coherent than I am now.
Thanks for all the well wishes, we really appreciate it.
Tuesday the 23rd
Nolan’s surgery is scheduled for the 23rd, most likely in the early a.m. The word is that it should take about half and hour and we should be able to go home before lunch (if he really is one of the first cases of the day). So, if you are up early on that day take a moment to send healing thoughts his way. We all hope this will be one of the last surgeries for a long while if not for the rest of his childhood. The rest of his life? We can always hope.
I will post post-surgery once we are settled back at home to let you know how things went. Thanks for your continued support!
closure (or enough please)
Well, it seems that when Ronan and Nolan fell last week that Nolan’s g-tube site was pulled in a way that reopened the hole a bit. Quite a bit. It has been leaking enough for us to put a call in to the surgeons who told us it is time to get the thing closed once and for all. SO. Nolan has surgery scheduled for the 22nd (date may change but that’s what we believe now) to have them stitch up the hole. It is a simple enough surgery in many ways but will require him to be under general anesthesia. We should be able to take him home that day and I don’t believe there will be much post operative work to be done other than pain management.
It will be good to have this part of his NICU past finished, to not have to worry about leakage or wonder if it’s ok for him to swim. Having said that I will admit to feeling trepidation about the surgery though I am trying to focus on the positive so I don’t send my fear into the operating room with him.
He seems to finally be feeling better from his broken leg. Yesterday he walked around on it for the first time; he held my and Maymay’s hand, later graduating to only one hand. After several trips up and down Mimi and Dindin’s driveway I think the leg became tired or a little sore; he kept wanting to get down and walk but once on the ground wanted up again after trying a few steps. I am sure we will practice more today and hopefully build up his tolerance. We are all looking forward to him being able to move around on his own, he is a heavy little guy no matter what the scales say.
We will keep you posted on the official date for the surgery so you can send positive thoughts his way.
Purple please
Today we went out to our friends house to meet up and ride together to a pottery sale. Nolan wanted to play their bells naturally which Ronan took him to do for a few minutes before we left. On the way down the steps to leave Ronan slipped and fell landing on his tailbone and middle back and also Nolan’s right leg. At first Nolan seemed okay if really scared by the fall but after 20 minutes he still wouldn’t put any weight on his leg. We decided to skip the trip and booked it to the Pediatricians office (walk-in hours on Sat. are till 11:30, we left the house at 10:50) where they sent us to the ambulatory care center (which closes at Noon on Sat). There they x-rayed his leg and found he had fractured his tibia, a common fracture for kids his age. His break was clean and should heal with no problems in the future.
He was amazing through the whole process only crying a bit when they turned him on his side for the x-ray and when the cast was first put on because apparently it gets quite warm which startled him rather than hurt.
Nolan now has a purple cast all the way up to mid-thigh which will remain on for at least three weeks. He isn’t supposed to put weight on it for this first week which was easy enough today but as the pain fades (not to mention the cabin fever setting in) I think will be a challenge to say the least. Right now he is sleeping comfortably thanks to a dose of Motrin and an exhausting day. Hopefully tomorrow will be day one of a quick recovery.
We aren’t sure how Ronan is going to feel tomorrow. He has been in pain today, has an ugly bruise on his back and a bruised tailbone, but has been moving around rather well. He has a studio sale coming up this weekend so we are hoping he will not stiffen up too much tonight. No rest for the weary!
quick bits
Nolan’s mic-e button site still hasn’t closed on its own. We spoke to a Doctor last week who said after six months of waiting it would probably need manual intervention (surgery). We have a little bit more time to give it a chance so we are choosing to do that. It seems like the worst part of it is the bandages, they bother his skin more than anything to do with the site. Otherwise it isn’t much of an issue though it seems to leak a lot when he goes to school, I just make sure to put extra protection over it and send an extra shirt.
We just made it through Nolan’s first stomach flu. He has never been one to throw up so it was a shocker when he covered the couch on Wednesday. He also got the bed, the rug and the couch again. He has started eating solids again and while he has a fever still he seems much more like himself. Poor little Bean. Mom and Dad are greatly relieved to see him up and about even if it means his terrible twos are returning.
Yup, Nolan is readily displaying the terrible twos. This magically stops on their third birthday, right? It’s terrific threes, right? Ahem. I haven’t had him drop to the floor and refuse to move while screaming at the top of his lungs in the middle of the grocery store yet but he’s testing his boundaries every chance he gets. We try to remind ourselves that this strong will is what helped him through all his early ordeals and why we have the blessing of being his parents today. Hard to hold onto that in some moments but we try.
what about the hole?
Yeah, so there is a hole left once the mic-key button is gone. These close up pretty quickly when the button has been in for less than six months… Nolan had his in for two years so things aren’t closing up quite so quickly, though it is “closed” enough to make it impossible to replace the button without surgical intervention. We have had some leakage issues, the fluid coming out bothers his skin around the ostomy and seems to make the ostomy itself somewhat raw. (sorry if you were eating while reading this…). So we put bandages over the site and put various ointments on his skin to both protect it and to help it heal. He has had a cough for the past week which seems to have made the leaking worse as he bears down to cough but the site is looking better now as we have been more on top of taking care of it. Apparently the doctors give such a long term hole about 4 to 6 weeks to heal before they begin talking about intervention.
After doing some research and talking to my handy Dr. neighbor it seems there is a chance (say around 40%) that he will have to have surgery to get the hole to close. I have heard everything from simply stitching it closed to the doctors needing to scrape down to the next epithelial layer so the skin will connect. I haven’t asked what the surgeries would entail in terms of anesthesia because I am not ready to know. Meanwhile we will just assume his body will do its work in Nolan time and I am going to put my new found knowledge of Qigong to use to help things along. Remember, closure is a good thing.
Mic-key B-gone
Yesterday Nolan was playing with some children who live in Mimi and Dindin’s neighborhood. At one point one of the girls, Emily, picked something off the floor and asked me “what’s this?”. I about dropped the computer when I realized it was his mic-e button, the balloon had burst and it had simply fallen out. The openings can close quite quickly, sometimes as fast as 30 minutes so I attempted to get that button in just to keep the hole open enough to put a replacement button in but I couldn’t get it to go. After some calls to his Pediatrician we decided to drive home and try to get a new button in there (if we had one, we weren’t sure). At home we did find a new one as well as some lidocane and lubricant to make it easier for everyone but we still weren’t able to get it to go in.
The next step would be either to go to the hospital ER and have them attempt to stretch the hole little by little until the button went in OR take the hint and just leave it out. Since we hadn’t used it for feeding since Nov. 2007 and we really didn’t want to spend the evening in the ER (for all our sakes) we decided to leave it out. This is something we had been wanting for a long time but we still felt (feel) a but panicky about that safety valve being gone, there is a long list of “what if’s” one can get trapped by. But it is also exciting, we have never known Nolan with a object free belly and now it is clear for full on zerberts and rubbing. It is bizarre to have nothing sticking out of his belly, kind of like the first time he was tube free in the hospital, it was strange to be able to just pick him up without having to rearrange and be careful.
And so the next adventure begins!