Wow, what a difference four (albeit intense and challenging) days makes. I can see now that my problem isn't going to be getting her up, moving and back on her feet but rather getting her to SLOW DOWN. She is walking (carefully) fully on her own now. Facial swelling is down to about 25%. She does have bruises, a black eye, and bruises on her cheek and chin, but they are fading quickly. She gets tired easily which frustrates her but that is to be expected. She is still getting anxious from time to time for example an itch on her incision set her into a panic, and she is not looking forward to showering and getting her incision wet for the first time (basically refusing to do it, I'll let it slide another day..) but other than that she is recovering much faster than I had expected her to. It's great to hear her trying to boss me around, although I can't imagine I'll find that amusing much longer ❈ Best of all her smile is back. ❈
Day two was a lot of resting, drinking water, and resting. Still trying to work all of the anesthesia and oxycodone out of her system. She had an extremely rough morning and was very upset, the lack of appetite didn't help. By mid afternoon the swelling in her cheeks was peaking and uncomfortable but the hip pain was getting a little better. Bedtime was tough - she caught a glance of herself in the mirror and was terribly upset, not recognizing herself. Having to swish with the nasty Rx mouthwash just added insult to injury.
Day Three brought some exciting changes. She was able to walk totally unassisted down the hallway. She still prefers to have a hand to steady her, and it's a bit uncomfortable, but she was very happy to realize that she was making her way back to "normal". It was a good thing to have something on the plus side because this day also brought some challenges. The first post-op shower which she had a lot of anxiety about (we got through it, but it was pretty traumatic for her agreeing to do it), and the removing of the outer dressing on her hip incision which was right up there with getting her IV taken out (add another crack to my heart). Very scary for her but we worked through it. Being fresh and clean and wearing a dress seemed to boost her spirits a bit. Still haven't seen a smile and she still has that look of iron will in her eyes, but she has gotten a bit of her appetite back and has branched out from resting/watching movies to coloring and playing Barbies. Swelling is down quite a bit, although it's still pulling her mouth down and to the side which she finds bothersome when she is trying to eat or talk. You can't really see in this photo, but she also has a small black eye and a small bruise on her cheek on the swollen side, although it doesn't seem to bother her... Great progress!
I would be remiss if I didn't mention that John is receiving the Husband/Father of the year award - he has kept Jack well entertained and happy, not to mention I have not had to wash a single dish or clean up any messes since we've been home. What a godsend!
Edited - 6pm She SMILED!!!!
Well, we made it to the big day by the skin of our teeth and all went ahead as planned. They actually ended up calling us to check in an hour earlier at 1:30 which was fantastic since we had a very hungry little girl on our hands. Her last meal for that day was at 7:30, last clear liquids at 11:30. She was just starting to get cross when the phone call came at getting in the car was enough of a distraction to lessen the complaining a bit.
We checked in first at the main desk (wait), then at the surgery center (wait), and finally they took us back to the surgery prep area. Rachel passed the time watching Enchanted. Nothing like a good musical to get your mind off of things ❈
Once in surgery prep we spoke to the CNA (wait), Nurse (wait), Surgery Nurse (wait), Child Life Specialist (wait), Anesthesia Doc (wait), and our Primary Surgeon (we love him and he is so worth the wait!).
And a little more waiting (look close, this is the last time you'll be seeing her great smile for a while).
Rachel, also known as our little Rock Star, has mastered the fine art of being scared and brave at the same time. She chose to walk back with the Anesthesia Doc all on her own. Considering the epic meltdown she had the night before we weren't sure how this hand-off was going to go. We were so proud of her!
She left us about 3:00, assumed they started around 3:30 or so and they called us to let us know she was out of surgery and in recovery around six. They said she would be another hour in recovery before they took her to her post-op room and we could see her. It was a lonnnnnng wait! About an hour and forty five minutes later (due to shift change while she was in recovery) we were able to see her. She was pretty out off it but everything had gone as planned.
She had a little nap, and then we had a really long night. She didn't sleep much. We watched movies, got vitals checked, slowly hobbled to the bathroom, talked about why the three week old baby in the next bed was crying (coming off morphine after his first of three open heart surgeries) (I didn't tell her the mom said there was only a 35% chance the surgeries would work... grateful we were just in for a bone graft and thinking we are getting off so easy here....) talked about why his mommy wasn't picking him up (they lived far away and she had two other preschoolers she was caring for in a sleeping room down the hall), talked about what all the beeps and bells and noises were. Got vitals checked multiple times. Tried to rest.
Finally it was morning. Doctors came an made their rounds.. she ate some chocolate ice cream... drank enough water and used the bathroom enough times to please everyone... they said she could go home before lunch. We ended up getting to leave just after 1pm. She was ready to go but terrified of getting her I.V. out. She made it through, but there was a lot of panic and tears. After that she was scooped up into a wheel chair and we were on our way. (Except of course for the wait at the pharmacy.) Although it's her hip/leg that is giving her the most pain what you see outwardly is the swelling. Swelling was really starting to kick in just as we were leaving the hospital.
Finally we were home, there was a good hour where she was feeling pretty horrible when we first got home. Swelling continued to grow.
But a while later, after two small bowls of mushed up stew, pear sauce and a lot of water (we can drink it here or go back to the hospital kiddo, what do you wan to do? Easy choice, even though she didn't want to drink it.) she was feeling well enough to give her Dad a manicure.
She's doing well. You can see the steeled look in her eye (I miss her sparkle. I miss her smile). She's going to get through this just fine, mostly because she has no other choice... I wish she didn't have to learn to be tough this way though.
She is still very swollen this morning. And a bit cross (to be expected). Not able to walk on her own yet. Sick of taking medicine. Hoping we see some improvement over the next couple of days. I'll update again soon, hopefully the pain and swelling will have lessened for her by then.
Today we had Rachel's Pre-Op appointments at the Children's Hospital in Seattle. We saw the Social Worker, the Intern, the Surgeon, and the Nurse. Made for a long morning. Everything went smoothly with the exception of the terribly lacking bedside manner of the Intern. I am going to cut him a bit of slack considering it was very clear that English was not his first language, but seriously, using the word "pain" repeatedly when talking to a child is just not a good idea. This is a teaching hospital so you are always going to see interns, comes with the package of your "team", but really, they need to make sure they have enough adjectives on board so that they can avoid using ones that cause little kids' eyes to go like saucers... our surgeon was much better using the words "ache" and "uncomfortable". Those she could deal with. We were also lucky enough to sweet talk our Nurse into calling her Head Nurse friend down in the surgery center and hook us up with a little tour of an empty room. This really seemed to put a lot of Rachel's fears to rest, being able to see where she would sleep, where I would sleep, the bathroom, etc. Didn't look one bit scary after all :-)
So, what is an alveolar bone graft anyway?
Some children with cleft lip (or cleft palate) also have a cleft or gap in the bone of the upper jaw that holds the teeth. This bone is called the alveolus (al-vee-OH-liss). An alveolar bone graft is a surgery to fill the gap in the bone of the upper jaw. To fill this gap, a small amount of soft bone is harvested from the hip and transplanted into the jaw structure. They usually harvest bone from the left hip (where the point sticks out in the front) as it's on the opposite side of the table from the anesthesia people and everyone has more room to work, go figure. Then they cut open the gum, pack the harvested bone inside, then sew up the gum around it and also the incision in the hip. Upon healing, the new bone hardens and then becomes part of the complete upper jaw. (The new bone and the bone that was taken from the hip heal and grow back in about six weeks.)
So this is what it looks like on paper at this point:
One week before surgery - No Ibuprofen or aspirin (tylenol is ok). No shaving near incision site (shouldn't be a a problem for a six year old girl). No getting a cold or any type of illness, if so surgery will have to be re-scheduled. (maybe I should have her tele-commute to school... she seems to catch every little thing..)
Two days before surgery - start using prescription antibiotic mouthwash and nose prep solutions. (This should be fun for a girl who only tolerates berry toothpaste).
Day before surgery - get the big phone call as to what time her surgery will be, what time she has to stop eating and drinking, etc.
Night before or Day of surgery - Wash/scrub thoroughly with Hibiclens solution from the neck down for five full minutes. This is to decrease the number of germs (!) on your child before surgery, hopefully decreasing the chance of infection.
Day of surgery - show up with a smile on your face (fake it till you make it!) Totally unrelated side note: This is scary crazy.. female patients above the age of 12 are required to give a urine sample to screen for pregnancy. 12!!!! Llalalalala I can't hear you..... can you even imagine?)
Surgery should take less that two hours, with another two or so in recovery.
Expect to spend at least one night in the hospital, possibly two depending on if the child is able to walk, pain is controlled, is taking fluids by mouth, etc.
After surgery expect your child's hip to be more sore than their mouth. Expect their face to be quite swollen (she'll be little Rachel Who from Whoville). Pain meds will be by I.V. initially, then by mouth as time progresses.
After surgery she will be able to drink clear liquids for 24 hours, followed by any liquids the following 24 hours. After that a NO-Chew soft food diet for about six weeks. Looking over the list of approved foods made me laugh out loud. This is going to be..... challenging. Maybe the picky eater will just get really hungry and surprise us both??? Either that or I'm buying a lot of ice cream next month.
Pain should lessen in a few days, but expect a sore hip when walking for several weeks.
Will continue using special mouthwash and use a baby toothbrush to brush teeth, gently clean graft site.
No baths for at least two weeks (this will be hard for my bath girl)
No school for a week to 10 days.
Upon returning to school there will be: No riding the school bus, no eating lunch in the lunch room, no P.E. class, and no recess for six weeks. Obviously, no rough-housing with Dad or running, jumping around at home either. :-)
So. Sounds like a piece of cake, right?