Brother and Sisterly Love

“I stand behind you and keep you safe”. Thats what Chris said to Nick while they were dancing watching High School Musical. Charlotte’s movie pick but they all enjoyed it. Even the baby was dancing!

I guess then it would be totally redundant to say that Nick is doing well. We came home from the hospital Saturday evening. Steven really wanted to come home. He did not see the point in getting settled in the HP house and then leaving in the morning. Nick was doing really well at the hospital anyway. Mary from physical therapy came and Nick amazed everyone.

On the way home we stopped to buy Donkey Kong Country Returns and got ice cream. Nick slept for about 90% of the drive. Getting home was great. The baby screamed when she saw him. I thought she would want me but she was so happy to see Nick. Charlotte was upset that we came home early because she was having fun with her Aunt Tara. Charlotte is normally the most attached child and she did not even want us back. I know there are many families who have more than one child and worry about the impact fh will have on sibiling’s. If your kids are anything like mine they will be fine and even enriched but the experience. Watching Charlotte and Chris offering to help Nick is so sweet (like Chris just now running to get the ‘pee thing’ for Nick). Hearing them talk about how much they missed each other it too much! We were only gone for one night but It did feel like longer to me too.

Aside form a really bad instance of muscle spasms Saturday night things are going really well. I had to call the RIAO at 2am because we did not have Valium which would have helped. Dr. Rishi said to give Nick Ibuprofen and I decided to give him a banana as well. Sunday we had a prescription for Valium called in and we gave it to him at bed time last night just in case. When Renee from the RIAO called today to check on Nick, Steven answered and let her know that he was doing laps around the couch with his walker. Actions really do speak louder than words!

We have also lowered his Roxicet dose and increased the time between doses. So far so good. We can’t assume things will continue going this well but we’re hopeful.

Nick’s first post!

When we were coming home from when I was staying a the hosital we got a new game called Donkey Kong Country Returns (for Wii). Bessie Eileen yelled when we got home and I was happy to get home. Once we got home I asked to play Donkey Kong Country Returns. I missed everybody. I’m happy to be home.

PS I’m feeling good

From Nick

“I’m glad I have fibular hemimelia because it makes me famous”

Yep! My kid is a rock star. I told him earlier today about the blog updates and the Facebook group and how great it that other kids and families can see how good he’s doing and then not be scared themselves. I could see in his eyes how proud he is and then he said “I’m glad I have fibular hemimelia because it makes me famous”. That’s my boy. The famous Nicholas Curley. Truly though, knowing we have helped other families is beyond heart warming. It adds a dimension of goodness to a situation we would not have chosen.

Mary from physical therapy came earlier to help get him out of bed after the epidural was removed. He did it like a pro. The cast is pretty heavy but other than that I think he felt ok. He decided he would walk from the bed to the wheelchair so he could go to the play room and that’s what he did. Steven is there with him now and I am alone in the room. I even got a 15 minute nap. Nick has not slept since this morning. I think after playing he will be wiped out. We can’t wait for him to be wireless (he still has the catheter and iv). I don’t know how he has not complained about that catheter.

Again I have to say how great everyone at Sinai has been. Nick is doing so well and I think I am just as emotional as I would be if he was not doing well. Seeing him walk made me so teary and seriously he walked in her yesterday so seeing him walk should not be such a big deal!

He will likely be discharged tonight but we wont be going home yet. Rishi and Nick’s nurse encouraged us to stay at Hackerman Patz for the night since we have the room anyway and so Nick can rest more and recover more before the 2 hour car ride. I want to get back home to the other kiddies so badly but I also want to give Nicholas the focus he needs right now. He is also dying to go to HP!!!! Even though he is feeling fine he seems pretty subdued today. He has impressed everyone here already with his easy going way and the fact that he just got up to walk without a fuss at all. He did ask for Steven but he was out filling the pain meds rx! I think he wanted him because he knows he is stronger but Mary from PT did great.

I should go check in and see how he’s doing. When I left the play room he was playing a racing game on the Xbox. When I have more time I will write about the “birthday gifts” all the kids received yesterday. It was the sweetest thing and gave us lots to play with! I am so grateful for that and for the Project Linus. Nick received a blanket and he loves it. He did not even ask us to get his Bakugan blanket from the car. The kindness of people is overwhelming sometimes. There is so much goodness here. The stress of having a child in the hospital is overwhelming sometimes even when things are going great but the kindness can be overwhelming too! Tears are cathartic, right?

Update: Catheter removal caused first tears of this hospital stay. Nick’s pain meds didn’t quite make it to the 4 hour mark but they’re giving him 3ml and I would give him 5ml. As long as he is ok I’m not pushing it. Now Steven wants to go home and Nick wants to go to HP and I am not sure what we are going to do. Nick will have to sit without a booster sideways and I am worried he will not be comfortable. We shall see! Oh and we have to wait for him to pee before they will let him leave. This could be a while.

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!

Super Blue Cast

Nick is enjoying cable tv, sushi, ginger ale and all the attention he can stand from mom and dad! He is feeling good. Has a sore throat but his leg is feeling fine and he is in a big blue cast which was unexpected but just fine. Apparently in the case of Nick’s knee being immobile for a little while is ok. His surgery went really well. An epidural is currently keeping him pain free. If the does well on oral pain meds tomorrow we may be able to leave! Nicholas will not want to go until he gets to play in the playroom.

Dr. Standard came out and explained all of it and if I had a better memory I would tell you but the important part is that he was able to do small incisions as opposed to a large one and if the cast comes off in 2 weeks as planned Nick will be swimming in no time! His knee is still a little loose and that is why he’s got the cast for now. If Nick becomes super athletic down the road he could need more work done on his knee as an adult but so far sports are just not his thing so I am not going to worry about that.

Steven and I also got to chat with super nurse Lee and give her, Dr. S and Jen (the fellow) No Fibula No Problem t-shirts. I wish I had brought enough to give one to every person who has care for Nicholas.

As I type this Nick is engrossed in Penguins of Madagascar and waiting for his pepperoni pizza to arrive! He has already eaten 12 pieces of a california roll! His nurse Donna said “Wow sushi, thats zero to sixty alright”. Thats our boy! I am hoping he continues to feel well and heal well. I would be so grateful for that. Time for coffee and maybe a cuddle if Nick does not mind sharing his bed with me. I hope I can fit next to the big blue cast.

Super Knee in Progress!

Nick is in surgery right now with Dr. Standard! He’s got a very kind nurse Harriet who he has had before and a fellow named Jen (the other Jen from the chats!) who will be leaving soon to go to San Diego. I don’t know everyone else’s name but it felt like a great team to me. Nick was so very calm! I was too just until I walked out of the operating room. Jen walked me out and was very kind. That moment does not really get easier even though this is surgery number 6. Dr. Standard explained what he would/could be doing during the surgery. He makes it seem so simple but I know it is not. Even on these stressful days I feel so grateful that he is Nick’s doctor! I am grateful as well for the wireless internet service that allows me to be distracted and to send updates to friends and family. If your reading this now some thoughts and prayers for successful surgery and recovery would be appreciated!

It seems there has been some construction since we were last here. The waiting area is a different and there were private pre-op rooms. It felt luxurious! Nicholas was thrilled to get to watch cartoon network for a while and he is looking forward to it in his hospital room.

On the crummy side I forgot my purse with my wallet and phone and lipstick!!! No lack of lipstick is not the end of the world but it helps me to look alive on little sleep which is what I’ve had and will likely have tonight. Plus I am a little sad that today is Elizabeth Eileen’s 1st birthday and we wont get to spend it with her. Yes I realize that she is a baby and does not know but I know.

One final note for now… the t-shirts are done! Sale details will be coming soon. They look great!!!

Link

Pease consider joining our team. This team was created for any one with fibular hemimelia, their families, friends, care providers, and anyone who wants to help save limbs! Certainly consider joining if you believe families should at least have options and access to accurate information. Even of you can’t do the ride you can still fundraise and support the save a limb fund. T-shirts will be on sale soon. $10 for team members. $20 for everyone else : )

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