Fixator #3 Overdue update!

I’ve not been in a writing mood. As we near the one month mark of Nick’s time in the fixator I feel like there I so much to share. Still I just didn’t feel like it.

All in all things are going really well and life has settled into the kind of rhythm I knew it would. Past experience gave me the faith that that would happen. Some things are easier the 3rd time around, at least for me.

It’s not been easier for Nick. Emotionally he’s had some hard moments and hard nights even. I think this is perfectly normal considering he’s now 8 years old and realizes be has months longer with his leg trapped in rings with wires and pins going through it. Not a cheerful realization. And yet he had had awesome moments too. Like when he told us he was going to be a football player once be got the fixator off because if he could deal with that he was strong enough to deal with anything. And he would show the world that even with one leg shorter than the other he could be a great football player. He would be tall and strong, of course! Nick saw me make a face when he said this and he looked in my eyes and said “I’m not scared Mom” and I replied “but I am”.

It’s the truth in more ways than one. I’ve been scared of many things in these last few months. Fibular Hemimelia related and not. But my boy is brave! I have to try to be brave too even if I would never let him near a football field. At some point it won’t be my choice but for now it is.

Nicks has some nerve pain and he’s had some bone grinding on bone pain. The nerve pain necessitated our slowing down turns and doing the top turns one day and the bottom on the next. A little research led me to the knowledge that these kind of nerve issues are 70% more likely with Nicks double level bone cuts in his tibia. Thankfully slowing down stopped the pain. Things have gone pretty smoothly since the slow down.

Except on the emotional side. It seemed that once the physical stuff got under control Nick got sad. Through some long nights of hugs, talking and listening, Nick has come through it. It’s still early and I know we’ll have more bumps in the road but I have faith that we’ll get through it.

“I don’t like the fixator but I like what it’s doing for my leg”. That’s what Nick said recently. That’s how we all feel I think. I still want to fill in some of the details of the last month but we’re at the RIAO now and I have to take Charlotte to the play room to get some toys to bring in to Nicks room. We’re in room 3A. I don’t know how many times we’ve been here in this room. This place is so familiar now. As familiar as the fixator itself which still shocks most folks. New parents I am sure feel the shock just sitting here. I wish I could tell them that they won’t feel that forever. That really they’ll come here with hope more than anything else. And hunger. Waiting makes me so hungry. Bring snacks people! Sage advice from a veteran parent. Bring snacks.

Our work begins!

After Nick’s surgery I said to Dr. Standard “you did your part now we have to do ours”. He said ours was the hard part, though I am sure his part was not all easy even though he said everything went great.

We’ve been home since Saturday and I’ve put some updates on Facebook but I’ve not had lots of time for writing. Nick is sleeping in this morning and Chris and Charlotte are at school so I am going to write what I can. I want to recap some of the hospital stuff. Overall it really went great.

The only real bump in the road was Nick having a fever. On the afternoon of the day after surgery I thought Nick felt hot. I told the nurse that I thought we should take his temperature and she sid she just did and he was fine. I let it go. Nick also seemed s little lethargic or just “blah”. That one is hard to explain to hospital staff considering it was the day after survey I think they would have thought I had unrealistic expectations of my boy. To them he was doing great!

Next set of vitals his temp was 99. something and by 8:00ish it was 101. something. The nurse said she would come in again in an hour. I wasn’t loving this plan. She didn’t tell me that she was paging Dr. Standard’s PA. I had set up myself to go on the perthes web chat with Dr. Standard. Nick was mostly sleeping or watching cartoons by that time and I thought I could help out. As the chat began I grew more worried about the fever. I figured I would wait my turn and ask Dr. Standard about it. Luckily he jumped in and asked how Nick was doing! When I told him about the fever he said to tell the nurse to give him motrin (not usually used after this kind of surgery) and tell the nurse that if it was not ordered already to call his cell phone. Nick’s nurse came in with tylenol because she had in fact talked to the PA and I gave her the info from Dr.Standard. I explained that I was on a live web chat with him and she went from confused to amused. She was kind about the whole thing and actually all the nurses were kind overall! Nick got his motrin and I stayed on the chat for a while.

When it was my actual turn I asked Dr.Standard if we could go home after discharge. PT and the PA said we should stay. Apparently some people say they will do physical therapy at home and do not. They didn’t really understand that this is what we have successfully done for the last two lengthening’s! Of course Dr. Standard said we could go and do things as we had done in the past. What a relief. We were all missing Charlotte, Chris and Bess and I really didn’t want have to get Nick all settled at Hackeman-Patz across the street for a week just to do three hours of therapy. The cost alone of the stay and the therapy together would have been too much. Our insurance like a lot of insurance does not pay for much therapy!

So we’re home doing the best we can. I have more hospital stories to share but I’m going to get ready to pick up Chris from preschool. He did not want to go! He’s been so happy to have Nicholas home. It is a joy to see the kids together again. As I have said befoe none of this is easy but we’re together and we’re all ok. Nick just woke up. Another day begins!

Surgery down, 4 days in hospital and 6 months in fixator to go

Nicholas’s surgery went great! Longer than expected but that’s always the case and there was a lot of scar tissue for Dr.Standard to contend with. Nicks fixator is interesting although we can’t see it too well because there is a sock of sorts on it! Nicholas asked to see it as soon as he realized it was actually there. For a couple hours after the surgery he was in-between asleep and awake and did not realize the fixator was even on. Luckily the epidural is obviously working and the only bad side effect has been some itchiness but benadryl helped with that. Unfortunately it burned going into his iv.

There were a few other concerns in recovery. Nick was pretty pale and his left leg seemed swollen when we first saw him. He also woke up with pain in his elbow. They believe it was from the position they had him in during surgery or really just being in the same position for a longtime. Some pain meds helped and we’ve been encouraging him to bend and flex gently. We also noticed that his temperature was a little high (fine now) and he wasn’t making enough pee. I think he’s on track with the pee and his lips are back to pink! He really was looking pasty! There seems to me to be a lot of blood coming out of his drain but no one else is worried. Of course these things have had meworried but I’m staying calm and letting the nurses and docs do their thing. All seems to be well enough.

We’ve got a private room for now and hoping it will stay this way! You never know, they could move us! I am so relieved that Nicholas is feeling ok but now I am so very tired. All that adrenaline is gone I guess. Nick’s night nurse Jen seems to be great so here’s hoping for a peaceful and restful night. All the thoughts, prayers, good wishes and general cheer have been much appreciated! I haven’t gotten to read all of them to Nick yet but I will. There will be plenty of time tomorrow! Maybe tomorrow I’ll have the time and energy to explain Nick’s 12 strut fixator! We’ll be doing a lot of turns!

Leg Lengthening 3.0 is in progress

Nicks in surgery. He was calm when he went under. We spent our time in the OR discussing the pokemon battle we’ll have after surgery. He’s got a great team with some familiar faces aside from Dr. Standard! Nurse Harriet is one of my favorites! She is so kind and comforting. I guess that’s what happens when you’re at surgery number 8. Dr. S said 4 hours. We won’t worry if it’s a little longer. We’ve got a class now to refamiliarize ourselves with fixator care. We’re just waiting for a few other families to start.

There’s a new fellow who started today and I let him know how lucky he is to get to start with Dr. Standards best patient! Nicholas is amazing. I can’t wait to see him again!

There was some confusion regarding a possible procedure on Nick’s left leg. Someone made w crazy mistake and must have written left instead of right. Nurse Harriet said not to worry and I said I wouldn’t as long as Dr. Standard was in there I knew Nick would get the right surgery! Someone also mentioned Nick having had transfusions in the past. I know he has never had a blood transfusion so I was concerned to say the least. A little investigating led us to an explanation. Apparently some of the “stuff” they put in his knee and such is in the same category as a transfusion. A donated ligament is still a foreign body. It was just another strange thing to have to figure out this morning. Nicholas by that point had had his “happy juice” and was zoning out watching Sponge Bob so he was not concerned!

I feel a little like I am playing the part of the calm mommy today. I never thought of it as acting but really knowing my boy is in surgery puts my stomach in knots. Still I sit and type and sip coffee as if it is the most natural thing. I make sure the cell phone is on. Make sure Steven is ok. Steven is very gracious on surgery days and always really. But on surgery days he let’s me go in the OR to stay with Nick till he goes under. I always go. I would be devastated not to. I know it’s hard for Steven to watch us roll away! I get to ride on the bed with Nicholas while wearing my cool blue suit. Head to toe blue. I hate that I have to wear a mask. I worry that my eyes will give away my fears.

Once Nick was asleep I kissed him on the forehead and told him I love him. I managed to save my tears for the walk back to the waiting area. It is sweet when the nurses tell me how great I did and they thank me, always. I love being able to keep Nick calm and I am so grateful to have a husband I can truly be part of a team with. We’ve each got our strengths. He’s also like a pack mule and able to carry several over stuffed bags and not complain!

There’s a great poster in the clinic waiting area where we were waiting for nurse Lee. It’s about the RIAO and features a patient labeled “K”. There are photos from K’s childhood and a final photo of K standing next to Dr. Standard, at least a few inches taller than Dr. Standard. The poster says K is soon to be off to college and living a full and active life. I get to see someone else’s light at the end of the tunnel and what a bright light it is!

T’was the night before surgery

We’re at Hackerman-Patz! Nick and Steven have been in the play room and I have been alone for about 20 minutes! Reading all the good wishes for Nick and our family on facebook really warms my heart. Another really sweet thing was watching Nicholas say goodby to Charlotte, Christophe and Bess! They love each other so much!! I could cry again just thinking about it. I miss my other kiddies. It’s odd to miss them even though we’ve not been gone long but it’s the emotional nature of this trip and the fact that I know it will be at least 4 or 5 days till I see them. I know Nick will miss them too! He’s such a great big brother.

For a few days my big boy will be the baby. Having a child in a fixator is like having a new born. Waking in the night for meds, watching them constantly just to be suree they are ok. Plus I will just be with him every moment I can. I will hold him as much as I can and do my best to keep him as comfortable as possible. To say I am his advocate would be an understatement! I will do anything for him!

Oddly enough I think we are in the same room we had for Nicholas’s first lengthening. Back then we bathed him in the sink! It is a lifetime ago but feels like yesterday in some ways. He is the same sweet boy but I am not the same scared mommy though some fears remain.

Nicholas has had a good day and thats all that matters right now! He can’t eat after midnight so we’ll let him stay up a while more, take a shower and have a banana if he wants. 6:30 we go to Sinai, for surgery around 8:00-8:30. If my memory is rigth Dr. Standard arrives after he drops his kids off at school. I am sure Nick will be asking him what pokemon cards his sons have as soon as we see him. We’ve got Nick’s cards and he and I had one battle already and even though we tied Nicholas was thrilled. It does not take a lot to make my boy happy! Here’s hoping we’ll be having pokemon battles this time tomorrow!