Mass General has a site called CarePages for people undergoing surgery to keep everyone up to date on progress. I thought about posting the first set of CarePage posts from Sam's first surgery -- a proximal femur osteotomy -- to correct his bilateral coxa vara, but felt it was too long. But because I've been so out of touch with my blog, I wanted to post this for those who might not have caught my hospital updates. Like the last time, it's hard to find time to blog with a 3-year-oldchild in a spica cast, and a 5-year-old child who isn't. The only links you'll find are in this introduction, but can link to information from older blogs if necessary.
Wednesday, April 7
Well, the time between Sam's cast coming off and right now has flown by. Sam got his cast off in just under four weeks, and began walking one week and four days after that. (The doctors said it would take around 3-4 weeks.)
He had a birthday on March 13, and now he's a big 3-year-old. Luckily, he's still a little young to quite get all of this.
He just went running by. He's getting faster. A few minutes ago he came jumping in. He was never able to jump at all before the first surgery.
We and the grandparents all chipped in for both kids' birthdays to buy them a playset that has a tall ladder/ rock-climbing wall and a big slide. We had a big party for the kids' birthdays (Maya turns five April 12, but we wanted Sam to be mobile for a party) and the slide and ladder were already set up. By the end of the party, Sam was scaling that thing in a second, screaming, "I'm doing it myself!" and hurling himself down the slide. His back was sore the next day since he can't really catch himself at the bottom, so the next day we arranged pillows at the bottom for him to topple onto. That worked.
He immediately began relying on his right leg the moment it would support his weight after the cast came off. This just reiterated that getting the surgery done was the right thing to do for him. He finally is starting to get the motion of a more typical walk in his right leg in the past few days, and I'm thrilled about that. It's taken this long A) due to the stiffness after being in the spica cast, and B) because he was getting used to his right leg now being about an inch longer than the left after they made that nearly right angle of his femur obtuse. His right leg used to be shorter, so he had to get used to the new lengths.
I hope that when they're both the same length, everything will be easier for him. It's just getting through the next month. Ugh. Mostly, knowing what's ahead and how to manage everything from pain to poop is a plus. But man, knowing what's ahead in terms of pain and dealing with that cast, and Sam's frustration, twists my guts in a knot.
So we get there tomorrow at 8 a.m. I have to make sure Sam's gut gets packed so full today that he still feels full when we wake him up at 6 a.m. to go to the hospital. I can't even remember where we go in the hospital. It all feels like a blur from the last time. Guess I should give them a ring...
Until tomorrow.....
What a boy
Sam's is the best mood.
After a few minutes of being upset this morning because he couldn't eat (we told him it would make his belly sick before the surgery) Sam snapped out of it and hasn't asked again for something to eat.
Then he told me, "OK. I'm ready for you to drive me to the hospital."
When we first got to the waiting room, he held his little arm up in sort of like a shrug, and said, "This is just a really hard day."
But he seems to be completely unafraid this time. He's obviously not looking forward to it, but I thought the fear would be even more intense for him this time because he knows what's coming. He seems to be more like us; much less afraid, just filled with a little more dread at knowing what's ahead.
Right now he's running around the waiting room, cracking up, with a huge green monster truck they have here. Daddy's playing with him too. He's doing awesome.
Doh! Spoke too soon. Dave and I are talking about coffee, and Sam wants to eat. (We're waiting on the coffee.) We told him he has to have surgery first, and he said, "Can I go that way? Can I run that way?" pointing to the staging area.
He wants to get the surgery so he can EAT.'
He's in..
Sam did really well, with the exception of getting him to breathe the anesthesia through the mask. I had to hold him for that, so it wasn't very pleasant, but we just kept telling him what a great job he was doing and then it kicked in, so we gave him a kiss and left.
We just got an update on the fishie beeper saying the procedure began about 10 minutes ago and everything is going well, Sam is doing fine.
Osteotomy is done, applying spica cast
We just got an update saying Sam's surgery is done and they're putting the cast on. We convinced him to go with green cammo this time, so he can wear cammo like Granddad wore as a soldier. He liked that.
It will still probably be a while before we see him. I remember the cast taking quite a while last time.
Everything went well, so we're mostly out of the woods.
Some smiles are better than others
I love to see Sam's surgeons faces walking in looking that happy. They said everything went smoothly, he's in the cast, and they're waking him up so we should see him soon!
YAAAAAY!
Now comes the next hard part... But I'm not going to think about that... I'm just going to ride this humongous high.
Love to you all, thanks for your support and positive energy and prayers.
In Sam's room
He's sleeping peacefully. He was awake and in pretty good spirits before, and had half a small bottle of water and has had about two popsickles already.That's more than he had in two days last time. The nurses seem to be in love with him; many from post-op remembered him from last time. He was sweet and making jokes, but of course, is still in and out. He's assigned to an awesome nurse Celine, who made sure he got some valium so we don't have a repeat of the first night last time, where he was seizing and screaming in pain. They'll probably wake him up around 7 or so if he hadn't already gotten up for more morphine. I'd like to get some food in his belly! But sleep is good too.
Now I'm off to go get dinner while he's snoring.
Not the most restful night of sleep
Sam had a tough night last night, the kicker being a catheter and midnight because Sam's bladder was so full that he was crying out in pain. I heard his screams when she was putting it in all the way down the hall so I ran in there and helped keep him calm. Dave was already there, but I just had to run down there having never heard him scream like that.
So it was dripping out slowly, filling a huge bowl.
He was being such a good boy that Erin, the night nurse, was telling an aid to go find him a toy. "Something big," she said. About 10 minutes of dripping later, she asked him, "Does that feel better Sam?" He faintly said Mmhmm.
A couple minutes later he looks at the nurse and says weakly says, "Thank you."
"Oh my gosh! You're so sweet! You're the first to ever say thank you for a catheter! Hey Michelle can you hear me?"
*muffled* "Yeah!"
"He gets two toys. He just said thank you."
Waiting on Sam's bed were Lego Thomas the Tank Engine (Stanley) and a crazy Batman batcave that he can work with his new Batman helicopter. It was like Christmas.
So, the nurse practitioner is talking about sending him home today, and I, rousing from my 3-hour-ish nap, asked shouldn't he be eating and drinking and peeing first? She mentioned he'd had wet a big diaper (from IV fluids) had a few sips of smoothie, and I was still kind of like, but that's not really food....
So I told Dave I want his pain to be managed better -- so there's something between screaming and crying in pain and doped up daze -- and I want him at least eating and drinking.
So to me, I'd guess we're staying until tomorrow.
Sorry about all the typos, I've had no sleep and only a few sips of coffee, and I'm bed with Sam while he cuddles up with me. He doesn't want to be not touching me.
More pain
I wish we could make it go away.... the meds just aren't doing it. Sam is miserable. He does not want the TV on, he doesn't want to be played with, read to, spoken to, moved, eat, offered food, or anything else.
It just makes me feel so helpless when I can't help at all.
Yay!
Well, after a very sound hour or so of sleep (which indicates better pain control -- they doubled his dose of Valium), Sam woke up as we were discussing the pain with the nurse practitioner and Dr. Albright just to prove me wrong. I've never been so happy to have him do that.
He asked for his drink right away, had a few bites of pizza, has had most of a smoothie since this morning, and is drinking some of Mommy's sizzie water. He wanted Thomas to be turned up (I snuck it on on while he was asleep, hoping it would just distract him when he got up and keep him calm enough to eat).
He is talking back to Thomas, and I got a little smile.
Hooray.
He seems to be sweating much less too, which leads me to believe those spasms are under control now.
He just smiled: "It's Thomas."
looks like we might be able to roll him down to the playroom in a bit and see if a change of scenery will help him further along in his progress.
Cristy rocks, and we're leaving!
Aunt Cristy came to see us last night. I love her so much I can't even stand it. First she made Sam smile and laugh, and brought him an Iron Man mask. Then, she took me to a pub for a few pints and some chowder and stuffed mushrooms and actually yummy quesadillas, which I tend to avoid ordering because they typically are about as pedestrian as what I do at home.
THEN, she swapped with Dave, taking him out for a pint or two and getting him the soup. It was actually good clam chowder. Not thickened w/ all that flour, and with actual fresh herbs.
This break from everything is so amazing. It's fine for Sam, he's happy as long as a Mommy or a Daddy is there. It's great for us, because you can't really sit still long while Sam's in his cast. More so in the hospital actually than at home, believe it or not, because somebody is bringing him food, taking it away, washing the dishes from the food, and emptying trash, sweeping, etc.
But, that being said, thankfully we're on our way out of here, but Sam is refusing to eat b/c his meds were an hour overdue. This is how it goes when we are just a little late. But mostly, we all slept well last night. A nurse came and woke Sam up to give him meds at 3 a.m., and we went right back to sleep .... well almost. He wanted a smoothie and we were out, so I went down the hall and found him one of his banana yogurts and mixed it with juice and water until it tasted right. he drank it all.
So about a half hour after the Codeine, and a bribe with the playroom, Sam ate a pancake, a bite or two of egg, and a bite or two of yogurt. I'm happy with that. So we're getting ready, and getting OUTTA HERE! Based on past experience it's not as quick of a process as we'd like, so we went ahead and ordered Sam lunch, but we're out. I get the sense from the staff that the sooner, the better. ;)
