Yesterday evening JT had 3 visitors! My best friend from our summer swim team brought me dinner and stayed to hang out a while. She loves my kids so incredibly and they love her back. JT looked at her and told her he loved her and they had a chat. It was so much of what we both needed.
After that, his beloved teachers stopped over! They came bearing gifts galore too! If you know JT you know he is a words of affirmation guy AND a gift giver! When his teacher gave him a gift to open he lite up like a Christmas tree. It was the first time since before surgery we saw his big wonderful smile! They gave him a book (Thidwick the big hearted Moose because JT is so big hearted) and a moose light up stuffy (he slept with it all night!) and a book they made. This book is a compilation of letters and stories from his classmates. Many of them had green drawings because his friends know his favorite color is green. Last night when the pain was beginning to set in I started reading some of them. Those stories and letters brought him such incredible joy. They brought me so much joy too. He love to hear from his friends in such a special and unique way. Oh, and I cannot forget - they also brought me a goodie bag of chocolate! I mean, how can you NOT love these people!
After they left things started to go downhill a bit. I read the book to JT while the pain was increasing and we were waiting on the nurse to talk to the doctors about medications.
The night didn't get better for a very long time. It was a rough night but it was totally different kind of rough than from the night before. Last night, for some reason, JT woke in pain. His muscles were spasming like they did yesterday morning. It was like the epidural stopped working, they even checked to make sure it was still in place - it was. It was the oddest thing.
The night doctor came in, a tall NBA looking Russian man. He was so kind and gentle and patient with JT. I am thankful for the nurses who stay to chat and who listen to me. I have even had a few doctors respond that I am not "just mom" I "AM MOM and mom knows best." It's sweet to hear. Anyway, I say this because I told our nurse that I think they scared him awake and that was part of the problem, I think the startle of being woken two nights ago attributed much to his vomit. Last night the nurse, very gently woke JT from a dead sleep at 11pm for some medication, some very needed medication and he flipped out. He was screaming much like he did that morning. We gave him all the meds we could and finally got him to calm down.
Oh, did I mention there was something wrong with is catheter?!? Yeah, it was blocked and the poor kid hadn't emptied his bladder since surgery! The nurse fixed that too and man did that kid have to go! Poor guy!
So here we are, 11pm with a screaming child, got him calm, got his catheter to work and the doctor and nurses worked for the best of JT. They decided to clump the rest of his medications together so they didn't have to come in 3 more times that night, just once at 4am. I also said they should wake me and let me give the meds so he isn't so scared that a stranger woke him and tried to put food in his mouth. At 4am, the nurse woke me from a dead sleep, I too startled much like JT does. I got up, he took his meds and quickly went back to sleep! IT WORKED! All the talking and listening and trying things a little differently worked. YAY!
At 5am Jt woke again in pain. Screaming his hip hurt and it felt like a broke a bone. This is the most interesting comment to me, he has no idea the doctor did in fact break his bones. We told him he was having a procedure where she was going to put his hips where they should be, but we never once told him they were going to break his legs. After about 2 minutes of him getting worked up and being unable to calm him down I called for the morphine. He hadn't had it since midnight so I felt okay about it. I am not a fan of drugs and medications and specifically opioids. Heck, we hardly use Tylenol and Motrin in our house. But I also know and firmly believe your body needs rest to heal! If your body is expending all of its energy to stop the pain it has no energy left to heal. Thankfully, after telling me he wasn't tired and asking for TV (I said no, its too early) he is back asleep, resting.
I know it sounds odd to many, but as sit here watching my baby boy sleep I can see the angels around him. Comforting and healing, moving from head to toe and back again. Justin is in good hands here and I am so thankful. The doctors and nurses have been wonderful, but more than in their hands, he is in Gods hands. There is no other place I would rather he be than in the hands of the God most high!
Today's prayer request - PAIN MANAGEMENT!
His orthopedist will be here today so we will see her and chat and find out what's next and perhaps what to expect.
I made the comment the other day that this surgery is like being in the NICU all over again. What do I mean? In the NICU doctors tell you pretty much nothing! The NICU is at best, the scariest rollercoaster you have ever been on and in the pitch black too. On one end, doctors don't want to scare you. On the other end, they don't want to give you too much hope or false hope. In the middle is you, waving in the wind with no idea what might happen next or the ups and downs that are ahead.
Here we are riding a scary ride, in the dark with no idea of what might happen or what could be next or anything like that. I am hopeful that today we will get a little more light shone on the rode ahead of us. We knew JT would be in pain, that's not a surprise. How much pain is a surprise.
**as I sit here typing this he started crying again and whimpering in pain.
I am going to sign off - thanks for the prayers - it's going to be a really hard and painful day for JT. Pray that he can manage the discomfort and learn the difference between pain and discomfort.
Thanks!!
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