I guess I might not have updated with her surgery date. We have known about needing to do this since November but Dr. L has a wait list! So we had to wait for our turn. I was given three dates to choose from and we chose March 21st, which is the week before spring break here.
Dylan and I spend most of our day at her pre-op appointment with Dr. L and the anesthesia consult and man, was it a long morning! We got there at 9 and with a quick store stop and picking up Greyson we walked back in the door at 1:50, right before the boys get home on early day! For a minute there in the Lab waiting room I wasn't sure if I was going to make it back for the boys. Now that's a long day! She did so great all day, we played and she was so happy and fun.
Dr. L was running late (it's his MO) and he was super fast in and out of the room. An Ortho resident came in first and then he went to get Dr. L. I really didn't get much more information than I already had, he did a quick run down and then the physical part checkin all of her rotations and her flexibility in her legs and hips.
As for the actually surgery - He said there will be a large incision on the outside of her thigh, along her femur, where he will do his magic and he will go down lower to her prior incision which he will use to remove the plates. He will use the same small incision on the inside of her thigh to remove the plates on the other side. Small is relative I hear, her scars are 3-4 inches long, he tells me that's small. The new plates will have to be taken out by an "easy outpatient procedure" in 9-12 months. They will just be on the outside. Easy outpatient procedure... uh huh.
In my post explaining it all I mentioned that he may have to lower her kneecap depending on where everything lines up but that's basically the plan now, I think they will indeed have to do this. To do it she will have a long scar going right over each knee. Baby girl gonna be tore up. Poor thing. We got another xray of the side of her legs so he could see the current set up of her knee.
After the surgery that got us in this mess she bled so much on one incision that I had to take her in for them to clean her up and re-bandage it. All of these incisions will be covered with a cast! So... then... uhmmm... this is how it works huh? She will have these huge incisions that he can't see until the casts come off.
As I mentioned, she will leave the operating room in full leg casts on each leg with her legs straight. She will be in full casts for at least four weeks when we go back in for x-rays. As long as everything looks good then they will cast her for removable casts that we will need to put on her every night. He said kids tend to curl up to sleep and we need for her not do do that.
Man, she's going to be ticked.
They will need to arrange a wheelchair with leg extenders to keep her legs straight. I have no idea what this will look like, how we will go in the car, how she will get around. Uggggghhhhh.
After one of the nurse practitioners came in after and spent a lot of time with me to try and give me as much information as possible. It will either be her or Natalie (who is the one I saw at clinic that got this big beautiful ball rolling with Dr. L) that I see the most of when Dylan is in hospital.
She will be in the hospital from 3-7 days, I am planning to stay in her room. The NP said they have a private bathroom, small fridge and futon, so I will probably be camping out there for as long as it takes. There was a brief conversation between Matthew and I on who would stay up there with her but yea, it was brief.
We got a proactive bowel routine in place, basically a complete clean out leading up to the surgery and small doses of Miralax in the few days leading up. I'm REALLY nervous about her bowels. It's a challenge on a typical day, add a knock out, pain meds and immobilize her and I have no idea how it will get all get resolved.
After Dylan gets home and as soon as possible she will need to be up in the stander or even in the GAIT trainer to walk around. This depends on her pain level but 1-2 weeks is his guess. It's going to be so much work, we will basically have to be in front of her entertaining her for four weeks! The plan is to have her in her stander next to me at all times. We might keep her home from school, or maybe I can go with her to school for a couple hours a day, I don't know. We have to figure out her transportation before we have any idea of that. So many things are up in the air.
The consult with the Anesthesiologist was a lot more detailed and into the nitty gritty. It was almost a complete medical history with prior surgeries, medicine, seizure info, the works. I didn't have 100% of the specifics but I provided as much information as I could of course. I gave the information to a nurse doing the pre-op questionnaire as well as the Anesthetist. Then they went and got the Anesthesiologist, I believe her name was Linda but I'm not sure.
Most of the Anesthesiologist I have met have been older men or young cocky guys. This was an older (than me ;) ) lady and she was very kind. Total mind bend.
Into the conversation she asked if it was hard to get an IV in Dylan and I said yes and she said she could see all of her scars from where she was sitting which was like 4 feet away! She said she could even see them on her wrists and she said usually only the Anesthesiologists go for the wrist so she had guessed she would be tough. They decided to make arrangements to use the IV team the day of surgery. (Yay! Even though she will be asleep by the time they do an IV, the bruises and pokes make me sad.)
Toward the end of our meeting the Anesthesiologist actually said "You know so much about her and were able to provide so much information it's been a true joy meeting with you today!" It was so funny, and SO sincere. You get all types in there I'm sure! I told her I like all the details and I'm a chart reader and probably know way too much about just one specific little person. She was great.
It was nice to be able to go see where we will be going on Friday for Asher's oral surgery. Even though it's so simple compared to Dylan's I'm still a bit nervous. At least knowing where we are going and meeting some of the players is helpful. I asked the Anesthesiologist if she was working on Friday and she told me she wears many hats and won't likely be in the OR but she will probably see him when he's released to go home. She seemed genuinely excited to see us again.
A lot of kids with Holoprosencephaly have Diabetes Insepidis, even though we've not had an issue on a day to day basis, in the past Dylan's sodium got way high after a surgery due to the sodium in the IV fluids. After that issue, for subsequent surgeries, we have had to use the low-sodium drip. They decided to get a panel done on Dylan to get a baseline for her sodium. I'm not sure if they will use the low sodium drip like they have before but getting the baseline measurement will help them keep an eye on her post surgery to see what she's doing.
Dylan also used to get stress doses of Hydrocortisone and I know at least for the last surgery they gave her a stress dose just in case. I guess here they regularly give the kids Zofran and some other sort of steroid so they don't get upset stomachs and wrenching ( :( ) and she feels that that dose of steroid will cover a stress dose day of.
And that's about it! We are getting closer and closer to the big day. I tried to take pictures of in the office but she knew I was trying to get a picture so she refused to look at my phone! Stinker.
If you know her, she even looks like she's smirking a little here.
Stinker!
We had to wear stupid paper shorts for the x-ray. It was cold!
