We’re trapped by a drain (aka closed wound suction evacuator) in Nicks leg and if it does not come out by two o’clock he will have to have another round of antibiotics. Nicks iv keeps bleeping and I worry it will stop working. If it does I am refusing to let them put in a new one (literally). Unless someone comes in and says the drain has to stay in which would mean we’re not going home and Nick can’t do PT cause he can’t put the cast on till the drain is out…

It’s like “If You Give a Mouse a Cookie”…

if you give a kid a drain in his leg he’s going to have to have antibiotics to go with it and if you give him antibiotics you’ll have to give him an iv and if he has an iv…

All ending in the fact that we can’t go home. I am watching the clock hoping Dr.Standards PA gets here in time. I thought it was a clinic day but it’s not. Apparently Dr. S has a lot of inpatients. I hate to be whiny but I want to go home. I want to shower. I want Nick out of here. He says he wants to stay (cable tv, meals made to order) but he also said “I’m tired of my life. Well not my whole life but this part of it”. I think home will help distract him from this part.

I want this part to be over too. It was November I think when Nick’s foot began to hurt and this adventure began. We’ve had other ups and downs as well. For Nick his arm is the stand out. And there’s moving. Nicholas said he wants to grow his hair longer to fit in our new neighborhood. It’s funny cause it seems like the kids in our area march to the beat of their own drummer but what do I know. Frankly a hair cut while having an arm cast sounded like an itchy proposition to me. I am happy to let him do whatever he likes with his hair.

I guess I should order lunch. May as well be trapped and well fed!

Its all in the details.

Sometimes it seems like the little details of a hospital stay are the make or break things. Surgery is important and the point of course but during surgery Nick is asleep. Waiting is hard but someone else or rather a whole room full of people are taking care of my boy. The fact that I trust Dr. Standard and his team makes all the difference.

Recovery or the PACU seems to have it’s own series of concerns. The first thing I consider is how Nicholas wakes up. If they let him wake him wake up on his own he does much better. Every time that I know of that they have woken him he ends up so upset! The last few times in recovery have been much calmer. The other recovery factor of course is pain management. That’s probably the most important but when it’s going well it is easy to overlook. Sinai has always done a great job in that department.

The anesthesia department has been great about doing things in a way that works for Nick. He’s gotten a little big for the happy juice to help much and at first they have at times tried to give him an iv before he’s in the operating room. Its not necessary though because thankfully Nick is really calm and even when he’s nervous I am able to help him. That by the way is the best feeling in the world. Knowing I can help. Knowing what he needs and knowing he trusts me. The regular everyday moments of motherhood are often the best and most special things to me but the hard times, the times when I am in the zone. It’s like extreme mothering and so far I have passed the test.

Recovery is mostly waiting. If it’s a fixator surgery there is that first look. Even though it is wrapped up it’s still sometimes hard to see. It’s also an anxious time as a mom because I am mostly hoping Nick stays asleep but also wanting to hear him say he’s ok and tell him I love him. Waiting for all the necessary prices to fit together so Nick can be moved to a room can be tricky. Dr. Standard’s team need to put the orders into the computer. Anesthesia needs to sign him out and they can be hard to find. Then the PACU nurse needs to give a report over the phone to whoever will be his nurse once we are on the pediatric unit. Said nurse has other patients too and needs a few free minutes to take the call. So more waiting.

After that all happens we travel. It’s a bit of a trip at Sinai with the new children’s hospital being a bit far from where surgery happens! This time we were derailed by one of those medicine delivering robots so the trip was even longer.

Arriving in Nicks room is such a relief. I set up our stuff, turn on the tv and answer questions. Likely questions I have answered multiple times already but that’s ok. Once Nick is settled we move on to ordering food! It can take 45min to an hour so we need to be on top of that.

The rest of the important details include the iv. As long as it keeps working as it needs to it’s great. If there is any chance it will need to be replaced I have a plan in my mind to refuse unless it is absolutely necessary. That’s when I will loose my good reputation here at the hospital.

Needing a blood draw can be a problem too. Nick’s veins just don’t cooperate often. Though last night the fabulous superhuman nurse Melissa used Nicks foot and was quick and practically painless. I loved her so much in that moment. Thank you Melissa. I still love you just thinking about it. Melissa was altogether great. But so were the other nurses Nick has had. Sharon was his nurse all day today and she was amazing. Some people just do their job with such ease they put you at ease. That was Sharon.

PT and OT are important details as well. Nick got a reprieve and didn’t have to walk today since he has an epidural but he did have to get out of bed and into a wheelchair and he did not want to. Sometimes I have really just wanted PT and OT to leave him alone but I do try to be compliant and helpful! I think I did pretty good this time. When Lisa told Nick that if he got into the wheelchair he could go to the play room, Nick said he didn’t want to go to the playroom. I knew he was scared and I talked to him about how experienced Lisa and Laura were and how much better it would be for them to help him move as opposed to us moving him later because even if we didn’t go anywhere he had to get in the chair. This kind of convincing does not always work but this time it did.

I do not envy the physical and occupational therapists in what they have to do and the opposition they may face from the child and parents but they do amazing work. I don’t think I could make a crying kid sometimes with a big ex fix on their leg stand up and even walk!. When Nick was a baby I had times where I had to walk away and cry. I don’t think those moments are totally behind me but I realize if I cooperate Nick is easier to bring around too. They have reasons for doing what they do and really trying to make Nick walk for the first time by ourselves would be harder.

Epidural removal and catheter removal are big details too. Sometime the catheter bothers him. This time he wanted to keep it for convenience sake! Of course once it was out he realized he was better off but I think he feared the removal so much he convinced himself he was better off with it. It hurt being removed which everyone says it shouldn’t but it does hurt Nick pretty consistently. The epidural removal however was nothing this time. Even the tape pulling wasn’t too bad! That was it’s own little miracle!

Another potential IV issue is the way it feels when certain meds are pushed in. Apparently some people never feel it. Nick always does and some things burn. In fact I will have to finish this post later cause it’s iv antibiotic time and it’s feeling really cold in Nicks hand. Got to go!

A Regular Kid Break

Nick did something sort of normal yesterday. He broke his arm. He slipped and landed on his hand just right. This could be a long post but I am going to try to be brief. Poor kid broke it well enough to need to be sedated to have it fixed. He handled it all so well the doc’s and nurses were complimenting him left and right. No surprise really. When they cut the cast open (in case of swelling) he was not scared of the cast saw. He told the doctor it was all familiar to him and when the doc said he was the best kid he’d had Nick said “Thanks for the compliment”. Oh my sweet boy was brave and sweet ofcourse. He even thanked me for being there with him! As if I could ever be anywhere else!

I was as calm as I could possibly be and today I am exhausted. It takes a lot of energy to keep it together when you want to scream. My boy just got his fixator off June 22nd. To have a flipping cast right now is awful. I am praying for a waterproof cast when this one comes off. Nick needs to swim and enjoy summer so badly. He had been having a great day at camp and playing with his new pal Conner. Really things were looking up. Nick was being a regular kid and I guess that’s how he did a regular kid thing and broke his arm. I am grateful that he has friends and is having fun. But really I would have rather he have a regular summer break than a regular arm break!

I so wish it hadn’t happened. I wish I could take this away and let him have the rest of his summer fee. I am getting my sad out here so when Nick wakes up from his long nap I am happy cheerleader mom again! This just stinks! I know it could be worse and I know it’s not the end of the world but it stinks! Well it sucks really! We brought that word back in the ER last night. This SUCKS! At least when I said it Nicholas smiled.

PS we are going to Baltimore tomorrow so Dr. Standard can check it out. Nick broke both bones and is still in pain and really I think I will finally be able to exhale when Dr. S says its all ok.

Moving On

Little by little Nick’s leg is healing. All the pin sites are, which I guess are no longer pin sites are getting smaller. The only issue he is having is in moving his leg in one particular motion. I am thinking of calling Sinai today just to check and see if it is a problem or just something we need to work on with physical therapy.

The removal went so well. ┬áHaving the rod put in and not getting a cast as worked out for Nick so far. He is still not full weight bearing and I am having trouble getting him to use the walker. He’s totally willing to use the wheelchair for longer walks but he really wants to be free.

It’s going to take some time before his walking is back to “normal”. I am not really sure what his normal will look like but so far it seems not to be hurting and thats all t he normal I need.

The kids started camp in our new neighborhood last week. There was a giant inflatable water slide for Nick and Charlotte’s group on their first day. Charlotte did not want to do it but Nicholas was so excited. Climbing to the top was really hard for him. Watching him was so emotional for me. It reminded me of the Miley Cyrus song “The Climb” that came out during Nicholas last lengthening. Nicholas took a really long time to climb up. There was a line of kids waiting behind him and none of the kids said anything. I really worried since they had to wait a much longer time for their turns and had less turns than the other group because of Nick but everyone was kind. If an kid complained I did not hear it. I think this really is a great neighborhood, if the kindness of the kids is any indication I feel certain it is a great neighborhood!

The best part was Nicholas and his cheers of pure joy as he went down! All the kids liked it but not screamed like he did. It almost made me cry! He was so happy. I was so scared and happy and proud. Nicholas is such a strong boy. None of this has been easy for him. Moving has complicated things as well but he still putting himself out there and trying.

He hasn’t gone to camp every day so I am not sure how often he will attend but I will be happy if he goes to some days. Yesterday there was not camp but there was a great celebration called Games on the Green, which was mostly races for all ages, some silly races and even dog races. Our crew really wasn’t into the competing but Christopher participated in a bicycle parade with his group from camp and Nick and Steven did the three legged race. They of course were not the fastest, certainly didn’t come close to winning but seeing them out there, seeing Nick just do it was the best. It was a clear sign to me that he is moving on and that the best thing possible for him. Leg lengthening and reconstruction for fibular hemimelia round three is almost completed. Our family made our move and we love our new community.

We’re moving on and it’s bittersweet in so many ways. We already miss friends and family in PA and we’ve only been gone a week. I’ll try to focus on the sweet, get the kids ready for camp and keep moving on.

17 centimeters

Adding up the length from each surgery Nicholas has gained 17cm through leg lengthening. I think he still has 7 left but that can all be done internally. This was the biggest surgery and it is over. Dr.Standard removed Nick’s fixator and put a rod in his tibia this morning! Like most of his past surgeries this has gone pretty smoothly. I did not really cry in the operating room when I left him. Usually the walk back to the waiting area is so hard but I asked the fellow who walked me back what his plans were because I knew his fellowship was ending. He told me that his next fellowship would be in trauma. I said “Trauma really? This is traumatic enough for me”. I guess I must have been ok if I was making jokes!

Since at our last appointment we didn’t have a set plan for removal I really didn’t ask many questions about the rod and for whatever reason I did not realize Nick would need to stay overnight. It has actually worked out so well! At least here at Sinai. I hope the kids are doing ok in PA with Grandam and Grandpa. They sounded great when we called them (they sang happy birthday to me) but I hate to be gone longer than we said we would be. I am so grateful that they are with my inlaws, otherwise Nick and I would have been alone and not had an awesome birthday dinner and movie night here in room 3122.

Nicholas has not been in pain at all. I did ask for his pain meds to be given because I didn’t want his blood pressure going up like last time. Still he seems tired but ok. He is so happy to be fixator free. He was even so calm this morning. He didn’t have happy juice or anything before surgery and had an anesthesiologist today that he had not had before but he was a really kind man. There were plenty of other familiar faces throughout the day. It is still surprises me how familiar this place is and how comfortable we are here. It’s nothing you expect in life but hay it is what it is!

When Dr.Standard came out to tell us how everything went he explained why Nicholas would need to stay over night. It’s really just the antibiotics because of the rod. He has a protocol he follows and I would not question his methods. That conversation we have each time when surgery is done but Nick is not really out yet is such relief. Once I see Dr. Standard and he says everything went great I finally exhale! We always talk a little about whats next but this time whats next should be really far away. Nick can have the rod in for years if it does not cause any problems.

Dr. Standard has been Nicholas’s doctor through this whole journey, each surgery has been at Sinai, each time we have family and friends helping along the way and every outcome has been excellent. Every day I am grateful. Without the love and support of so many people this really would not be possible. Nicks right leg may be longer or he’s finally even. That is amazing! If he had had no surgery his right leg would already be almost 8 inches shorter than his left! That seems crazy but thanks to 17 hard earned centimeters Nicholas has a far different reality!