TBH

TBH… to be honest. I am usually quite easily honest so I do not use this acronym much. But today I need to.

TBH Nick is feeling down today. I know it will pass. I reminded him of this and of how “normal” it is to feel this way but in the moment it does not make it easier for him necessarily.

Sometimes things are hard for me too. I posted on my personal Facebook page yesterday that things are hard because they are, but that we are not letting it get us down, which we generally are not.

But it is hard. Nick had a big surgery. He has a rod in his leg and we will use a magnet to lengthen it 3x per day for the next 60 something days! That’s kinda crazy. He will not be full weight bearing till maybe August. Maybe. Thats a big deal. He is still on round the clock pain meds. Thankfully at a lower dose but that means more frequent doses so we are waking up at night more. I’ve also added doing laps around the house to his home physical therapy because his leg is really weak. This is normal (I got to ask Dr. Herzenberg about that on the web chat last night. He’s not Nick’s doc but he is brilliant, kind, pretty funny and a fibular hemimeila expert like Dr. Standard). I want to be doing everything we can to help Nicholas gain strength. He is feeling bored and frustrated today at not being able to move his leg. He’s not in the mood to talk about it. He feels like doing whatever it is he can’t do. His emotional health through all this requires attention too and sometimes he just needs space. I get that.

TBH this lengthening will be harder than the others in an important way. Yes it is not an external fixator and yes we are so flipping grateful for that but seriously. Seriously, that does not mean this will be easy. Easier in some ways, yes, but not all ways. This is a femur lengthening which Nick has never done before. Nick’s hip and knee will not like this lengthening. They will want to contract and he will have to work so hard to keep them from doing that. There will be pain. Growing two inches or so in 67 days will do that. We will do everything we can to manage it but that does not mean this is easy.

We are positive people. We are super grateful not to have pin sites. We are super grateful that everything has gone as well as it has. However we still need to be able to say this is hard. I need to be able to say it. Hard does not mean something is wrong. Hard does not even mean bad.

TBH I think we rock the hard times like it’s nobody’s business. I will never forget that. Nicholas has come so far. This journey has strengthened us all. We know how precious every day existence doing what you want is. Every day existence is precious in and of itself of course!!!

There are a multitude of reasons why some people can not live each day doing what they want. Many are far harder seeming than fibular hemimelia. Some things can be overcome and some cannot. Some people keep going even without a light at the end of the tunnel or without the light at the end that they might have originally hoped for. They can become the light.

If fibular hemiemila is the hardest thing Nicholas ever has to go through I would still count him a very fortunate person! I know I am a amazingly fortunate mom. Part of me will always want to make things easier for him but you can’t take away the hard stuff without taking away the light too. TBH I would never want to do that.

Not so much to report…

Literally. Nicholas is doing great. We are stretching out time between doses of pain medicine. I only feel a little zombie like from the sleep disturbance. Siblings are loving having Nick home and loving playing with his balloons from our sweet fibular hemimelia friend Zoey and her family! Seriously balloons are joyful things! The siblings also received some gifts while Nick was away which they were so excited about and I was so grateful that they were thought of. Little things like that help them feel special too which is important. Last night we showed the kids Nick’s bandages so that they could understand better whats going on. Chris was feeling really sad and jealous that Nicholas got a new video game and was laying around playing while he had to get ready for bed. I think showing him helped. I would show all of you but some are on Nick’s backside. Gotta keep some business private.

I am a little worried about how physical therapy will go on Monday. Maintaining range of motion through lengthening is vital but Nick also had an eight plate inserted and eight plate surgeries usually meant weeks of Nick not wanting to bend his knee. We’ll see what they say Monday. He’s also complaining that his brace is uncomfortable. Not much to be done about that. So far Nick is still swollen around his knee and elsewhere. His right thigh (fibular hemimelia side is similar size to his left which is not the norm). When the swelling around his knee goes down I think it will be easier to bend.

Well Chris is crying about lunch. This will be an easy fix so I better hop to it. Thanks for the continued thoughts and prayers. Nick LOVES comments on his video so if you can please comment on that post.

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!

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!