A little oxy… A little angry

Nicholas had a good day. I took him to the RIAO to get a new cast since the current removable cast would not fit quite right. Well we left empty handed because based on today’s films Dr.S said he does not need one. He’s still only doing toe touch weight bearing and thanks to the fancy walker with the platform on it that’s going well.

I do not want to jinx it but Nick may have really turned a corner here. His spirits were up and mood swings gone. It took me a little time to realize the improvement was likely a result of being off pain medication! Roxicet did not make Nick angry or sad really but oxycodone does! One afternoon he told me “Mom I hear that my voice is sounding angry but I don’t know why and I can’t stop it”.

It’s a shame that roxicet is being phased out due to the abuses and overdoses of tylenol. It’s worked so well for Nick. I felt like the benefits of giving him it always out weighed the negatives but with the oxycodone it’s different because being pain free but unhappy is a tough trade.

Right now I am thankful Nick is pain free and able to move around without me worrying to death. I had a little scare at the RIAO today. After Nick’s xrays were done we went back to the spacious and boring waiting area (at least that’s what Nick thinks of it) and then we were sent to room 3A. But I assumed we would be going to the cast room since we were there for a cast. I totally panicked! I figured they must have put us there because Nick couldn’t get a cast because something was wrong. I thought we were just sitting waiting for bad news.

Thankfully Ann, Dr.Standards administrative assistant, was walking by and looked in and asked if we needed anything. I think she might have noticed my crazy panicked but trying to appear calm look going on. I shared my fears with her in the hall so Nick would not hear and she dispelled them or she tried to. Of course I thought it’s possible it is bad and she just hasn’t heard yet. Still I tried to believe her and thankfully Nick kept me busy while we waited.

We had some serious laughs creating some comedy skits based on surgery and bone stuff. Nicks favorite was one in which I was the doctor and he was my patient in the OR ready for surgery. I ask the nurse for the scalpel, begin to cut, and he bolts up wide eyed and I knock him over the head with a frying pan. The skit closes with me asking for the bone saw and you hear the sound of the saw as I begin “surgery”. I thought this was pretty creative on Nicks part. He has such a great sense of humor and imagination.

I guess the best part of it all was Nick just being Nick. Things are still going to be tricky for a while. I know its still hard for him. Plus we’ll be limited in want we can do but I am again feeling like we can make the most of it. We had a great family Bay-blade tournament today and will likely have one tomorrow. We had some fun with photoshop, drank some Snapple (I introduced Nick to Snapple while he was still in the hospital and he loved it), but most importantly we laughed! Laughter may or many not be the best medicine but a medicine that keeps you from laughing (as the oxy does to Nicholas) is the worst medicine of all.

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!

Live From Sinai

So while it was all ok few weeks ago it wasn’t on Monday when I brought Nicholas to see Dr. Standard to check on his leg and arm. As soon as his cast came off Nicholas and I both knew it didn’t look right. And of course the films revealed it wasn’t. I am usually super calm but but I had to go find Dr. Standard. I told him Nicks arm looked wrong and that I was panicking a little. He came in and said he hadn’t seen the films but it could be swollen…

On the leg front there was a bit more of a surprise. I wish I knew how to post a photo from my iPad cause the image was a little freaky. Kind of like rod going one way and bone going another. Stacy the tech who was working with him had trouble finding his knee cap. I could tell it felt funny to her. Maybe Nicks knee is funny but his kneecap was usually not hard to find.

It’s also funny cause Steven said he thought Nicks legs didn’t look even anymore and Nick was walking in a really kicked out way. I thought he was still walking to accommodate the ex fix or phantom ex fix but when we arrived Dr. Standard saw Nick walking and he knew.

All this knowing going around and then the whammy. Surgery would need to be the next day (yesterday) on both his arm and leg. The arm just needed a little push back into place. Not a big deal and not at all uncommon. I asked Dr. Standard what would make it stay in place this time and he said the bone would now be sticky. We are thankful for that stickiness which made it an easy fix.

Nick’s leg was a little trickier. The way Dr.S explained it to us was that he would use a fixator to put the bone back in place and the put a plate on it to keep it there. No fixator after surgery though. Just in surgery. Nick heard pins and for a moment he looked stricken but was relieved that he wouldn’t see anything sticking out of his leg after surgery.

Sudden surgery was a pretty new experience for us. Part of me was really expecting an awesome report, a short waterproof cast, maybe an Rx for physical therapy to help his walking! But I have been feeling uneasy and worried and just that general something’s going to happen feeling. So I am not totally surprised.

Helping Nicholas not be depressed by this was my first priority. He was already feeling quite unlucky to have broken his arm so soon after leg surgery. I asked him “what are we?” he said “strong” and I said “brave”. Then I asked “what do we do when we’re scared?” and he said “what’s right” and I said “we do it anyway and we make the most of it”. And that’s what we did.

Making the most of it meant enjoying our Mommy/Nick time together. We went shopping, to dinner and stayed at the Raddison. We brought dessert back to our room and watched movies. We got snacks from the vending machine at 10pm. We made silly videos and danced and laughed!

We know how to make the most of it and we know how to be brave. Going into surgery Nick was nervous. He was shaking which is not like him so I had to distract him fast. I suggested his surgery dream be a lego star wars one and asked him what his ship would be. That worked like a charm and before I knew it Nick was asleep and I was on my way back to waiting area.

On the way a man approached me (clearly thinking I worked at Sinai) asked me where the cardiac waiting area was. I told him I didn’t know. It was a funny little moment that broke some of the tension I had building. Going back to the waiting room knowing Steven wasn’t there was hard. Still I did my usual stuff, got coffee and a magazine and waited. Nurse Harriet came out to talk to me twice. The first time to tell me things were going well but taking longer than planned and the second time to say they were about done and Dr. Standard would be out to talk to me soon.

When Dr. S cam out he said everything went great. Arm went right into place and his leg was back on track. Maybe straighter than before. Back on track and great are really all I heard. I was just so relieved. I suppose when things go wrong it makes me wonder if things will keep going wrong. You really can’t take anything for granted so I was preparing myself to hear that he lost length or had some complications but there weren’t any.

Nick is currently as comfortable as a kid who had surgery yesterday and still has lots of wires attached to him can be. Steven came late last night which was just a relief. Even when things are going fine it still helps and I was able to sleep more than if Nick and I were alone.

Last week there was a crazy thread on one of the Fibular Hemimelia facebook groups and some things were upsetting to me. One person who chose amputation for thier child wrote that one thing that influenced their choice was that a doctor said “Kids who have lengthening are patients and kids who have amputations are athletes”. I wrote a long and thoughtful response to that one. I would love to get that doctors name and post it all over so families who want an unbiased and actual fact based assessment can avoid him/her.

Anyway one of the things I wrote was that “the easy ship sailed when Nicholas was born with Fibular Hemimelia”. Maybe the easy ship sailed for me when I became a Mom. If anyone is looking or an easy solution or to make life easier for their child they need to get a clue. FH or no FH life is life and so very much of it is out of our control. Maybe that idiotic doctor should ask the family whose child has had 13 surgeries despite the fact that they chose amputation how he would assess their child. What category would he be placed in? Or check out the kids who have had lengthening and ARE athletes!

Today Nick is a patient. I am hoping he will not be for a few years but I can accept that that is out of our control. I have faith that if something happens to Nick’s leg or any other bone Dr.Standard will be able to fix it. I know that being a patient from time to time is not destroying my boy. He’s a happy, healthy, compassionate and brave kid! I think that trumps athlete any day!

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.

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!

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!

Everything is possible.

And nothing is certain! It’s life. It’s true. No one gets any guarantees and with Fibular Hemimelia, it’s even harder to predict what’s coming next.

It reminds me of the phrase “This, too, shall pass”. I sometimes remind myself and others that it applies to both the hard times and the easy. My last post “when nothing is certain, everything is possible” reminded me of “this, too, shall pass” because it also goes both ways. If everything is possible then everything you don’t want to happen is possible too!

Nicholas has had some foot pain on and off. We’ve known since his last leg lengthening and ankle reconstruction that his ankle would need further reconstruction. His heel obviously needs some work too. At Nick’s last visit with Dr. Standard his discrepancy was 6cm and Dr.S said we could start thinking about the next big surgery as early as next summer. In my head I thought, “no thanks let’s wait 2 years please, I’m not ready”. I likely did say that I hoped to wait 2 years. I am not shy about expressing my opinions on Nick’s course of treatment. I happen to think Dr. Standard likes it that way. We’re a team, along with several others but I feel like he and I make most of the choices. Steven has as much of a say as I do but I tend to be the one there having the conversations.

And yet my long term plans for Nick, lovingly called “the Mommy Plan” has to be revised or in reality it has been obliterated. Time for “the Standard Plan”, likely the plan all along in one form or another but thinking I had a plan and a good sense of the future served me well for quite a while!

Nick’s ankle and foot pain went from not so bad to so so bad. Nicholas as would not put any weight on his foot if he could avoid it. After a small bit of back and forth with the RIAO we just got in the car and headed down. When we arrived at the front desk I began to say “We don’t have an appointment. But we’re here to see Dr. Standards PA …”. I was delighted to be interrupted and hear “Nicholas Curley does have an apppointment with Dr. Standard”. Then my astonished response was “Right then thats what we’re here for”. So relieved! I had made some calls and not gotten a response but I felt this was an emergency. If a child even without Fibular Hemimelia, woke up unwilling to put weight on one of their feet, most parents would head to the er!

I didn’t think we would see Dr.Standard. I thought we would see Allison his PA, she would order x-rays, and bring them to Dr. Standard in the or. I know Tuesday is a big surgery day. I imagined her bringing them in and him looking over his shoulder like on Grey’s Anatomy, talking through his mask. There’s lots of time for imagination during the two hour drive to Baltimore.

I don’t know if tv like moments happened. As Nick and I hung out, just the two of us, in the children’s waiting room, Dr. Standard swept in with Allison. Relief! Even though I thought I was ok with him not seeing Nick I kind of wasn’t.

Thank goodness the x-rays did not reveal anything dramatic, no breaks and such. It seems the course of life of a so-so Fibular Hemimelia ankle is not altogether predictable. At the end of the summer Nicholas has a pretty significant growth spirt. He really filled out. He’s not chubby or anything he’s just tall and getting broad! Like his daddy! Taking after Steven while handsome and cute is great, tall and heavy is not making having Fibular Hemimelia any easier for Nick. His ankle might have been able to last a few more years as is if Nick were smaller but he’s 83lbs. It is what it is.

The current solution is a removable cast and then a shoe insert as soon as possible. The hope and plan is that the insert or, custom molded orthotic, will help and we can put off surgery. I thought the cast had taken care of things pretty well till this morning when Nick’s foot hurt even in the cast! I put some cotton In the bottom for extra cushion around his heel which was the current t problem area and that helped. Then I received a call from the school nurse. Nick was in pain and wanted to come home.

Me, four kids, one cast and a rainy morning heading into the elementary school office felt a like a lot. I think I am tired from yesterday. Nick on the other hand was so excited to go to school! The main reason being the elevator! His classroom is on the third floor. Way too many stairs for sure! We got to talk to the school nurse and she was so kind, really she always is, and very willing to help Nick be able to go to school safely. Have I mentioned that I love our school? I do.

I’ll have to write later about how we are evolving from the “Mommy Plan” to the “Standard Plan”. We may even have to take it a step further and consider the “Nicholas Plan”. He’s totally against having surgery during the summer. Who could blame him? Letting him have some control over this could really help him emotionally. Plus it is his leg and his foot therefor he may know better than all of us. After all everything is possible?

lost childhood… frail limb… where do they get this stuff!

There are so many orthopedic doctors out the who say these things to parents of newborn babies with FH… They say that kids who have lengthening don’t have childhoods, they spend their lives in hospitals, their limbs are frail, they’ll be in pain all the time, they’ll have long term sided effects from the pain meds and the icing on the cake… They’ll get an infection and have to have an amputation in the end anyway!

NONE OF IT IS TRUE! How is it ethical to try to scare people into having their child’s limb amputated? And if their not liars then where are all the kids who have had limb legthening and have frail limbs and lost childhoods? Good luck finding them!

Seriously, every child that I have met at the RIAO has been amazing! Yes there are hard moments when going through lengthening and surgeries but our children have just as much joy as any other child! Every life has hardship but I would argue that my son is still extrememly fortunate compared to most children in the world. His childhood is intact and his leg is strong!

Nick’s had no long term side effects from pain meds (he was never on them long term) or infections, no psychological trauma from the 10 or so days he has spent in the hospital in the last 8 years! Fibular Hemimelia is part of Nick’s life. It is not who he is. It’s not an everyday issue.

Look my kid is awesome! Really he is. I received the most wonderful email from his teacher therefor I have official documentation of his awesomeness. She basically said he is always doing what he should, if he’s not doing his work he’s helping others or offering to help his teachers! He is a joy to teach.

Nicholas is special because he is himself and accepts himself. He is a confident kid and honestly more so than many kids I know. To say I am proud would be an understatement. Can you see though why I am so angry that doctors tell parents such ridiculous things about kids who have limb lengthening! RIAO kids disprove it all!

Your last pain medication was given at:

Nick had a great night but we are nearing the moment of truth. Nick’s epidural is not giving him 1/2 the meds it was before and he was given a dose of roxicet. I was told the dose was based on his weight but I am thinking it is also based on the fact that he still has the epidural because the dose is lower than what we were giving him 2 years ago. He certainly weighed less then.

Can you tell that this part stresses me? Last time Nicholas was here he had some horrifying breakthrough pain because a nurse decided that following the doctors orders was less important than her own assessment of my boy’s pain. Never mind the fact that he was SCREAMING. He was 5 years old and a great communicator. I had helped him understand the difference between being scared and in pain and he was able to differentiate just fine.

I did receive a call from an administrator asking that I explain what had happened. It was one of those moments when you think oh that was weeks ago I can’t possibly remember it all and then it all comes pouring out in vivid detail. The vivid detail is still there and so is the nurse. I have not seen her but I just hope she’s not the one taking over for this next shift. I told the administrator at the time that I hoped she could receive better training on how to handle children’s pain, how to listen better to parents and follow doctors orders.

So now you see why I am on edge. Watching Nicholas closely to be sure his pain does not get out of control. He just did a big twitch and said he could feel his leg a little. So far so good but I am ready to advocate for him and make sure he gets what he needs.

Update: Chatted with Rishi a fabulous RIAO fellow about the pain meds and he agreed that Nick’s dose could be higher if he needs it to be and he changed it in the computer and on the rx for us to fill before we go home. I do find it funny that when I inquired a bit with the nurse about it she told Nicholas that it is not possible to be pain free (doc’s say this too). I am thinking they’re wrong. If he can be pain free with a prefectly safe dose of meds thats what he’s going to be because that’s how we’ve done it in the past! So far he is still pain free. 11am will be the end of the epidural and hopefully time for the play room. Nick is tired but hoping to catch his fav show Bakugan, then go to the play room, play at the HP house when he is discharged and I am not sure what else is on his agenda for today. I am sure he does not know either but one thing we both know is that he is the boss.

And one last update… apparently this is surgery number 7 not 6!