WE ARE DONE!!!!!

Great news from the surgeon for Emily...her mouth was not healing well enough so he took everything OUT!

No, it's not good news for her cleft palate, and yes, it basically means she just did six surgeries for nothing.

I don't care.

She is done and she can eat again and she is going to be thrilled. :) :)

Surgery next Tuesday

...and no, it's not the last one.

Sigh.

At our follow-up appointment on Wednesday, the surgeon said he thinks some of the tissue on the left side of her flap shows signs of dehiscence. That's just a fancy term for the tissue coming apart. Again.

Emily's going into surgery first thing on Tuesday and the surgeon will release her tongue (not the flap) and suture anything that is coming apart. (Hopefully it's not much!) He's also going to reattach her arch bars and anchor them to the bone in her jaw. That means her jaw will be wired shut for another week or two. That timeline depends in a large part on what the surgeon sees on Tuesday. He doesn't have a clear look at the flap at the follow-up appointments because her tongue is also attached to the roof of the mouth so Tuesday will let him see exactly how everything is healing.

She's tolerating the oxygen therapy really well so we'll keep that going as long as we can. We were only granted 12 visits by the insurance, but if most of her flap looks good on Tuesday we may push for some additional visits to try to assist the healing.

And how are we doing? Emily is not thrilled about this, but she is on board at least for the moment. I'm trying to figure out what it is that bothers her about the surgeries so we can have her a little more comfortable going into this next one. I am pushing through. I had a hard time explaining it all to her at the appointment without crying. If you've seen Soul Surfer, there's a scene right after Bethany Hamilton sees her stump for the first time. The interaction between her parents right after that would be a great example of how I'm doing. (And if you haven't seen it, watch it. It's a great movie! I watched it during our last in-patient stay. ;))

I'm trying not to be frustrated and wallowing in self-pity. Emily's issues are not terminal, and if all of these surgeries fail she will just go back to wearing an obdurator (retainer). But I'm a bit mad that she might be going through all of this for naught. I know this is just one season of life and at some point we will look back on this and maybe see how it all fits with everything else in her life. Right now it's just hard.

Waiting is our new normal

We missed our Monday oxygen treatment because apparently God decided we didn't need to go. ;)

Yesterday was our first day back and Emily did great. I have to take Emily back and get her changed when we first get there so I have to leave the other kids in the lobby. So far I haven't been able to find someone to come sit with them and yesterday when I came back to the lobby they were practically in some guy's lap trying to see his cell phone. I was horrified and ended up not going back to check on Emily until 4pm because I didn't think I could safely leave the others. Tuesdays and Thursdays are big clinic days for the wound care clinic so the lobby is super crowded. But Emily does fine back by herself and it's probably better not to have me back there so she doesn't try to talk.

Today is another follow-up with the surgeon. I'm really hoping we get some kind of timeline as to when he will release her flap.

Happy Valentine's Day!

It started snowing right at the end of our Bible reading this morning so I gave the kids a break and sent them out to play in the snow. We've had quite a bit of snow this winter but it's been so cold the kids haven't been able to play in it much. Today was a prime opportunity with huge snowflakes and decent weather.

 
We were planning on going to our local homeschool co-op Valentine's party but we had to forgo that because of Emily's oxygen treatment. Of course I avoided wording it that way to the kids but they had really been looking forward to the party. They've been talking about it since last year.

So instead we did school and then we made chocolate-covered strawberries. I'm always a little leery of doing "projects" with all of the kids but this went really well!

We made 32 strawberries and the kids enjoyed them after dinner. Somehow I've inadvertently created a tradition of making individual heart-shaped pizzas for Valentine's day. I'm not sure how it got started but the kids insist we do it every year so we do. :)

Emily's oxygen treatment went well again today. She enjoys the attention and today they let the other kids come back one at a time and visit her because I was getting lots of interesting questions about it (like "Is Emily going to look different after she's done?", which makes sense since she keeps coming out of surgery with additional work done on her mouth). The kids thought it was pretty cool, but they were more interested in watching the Disney movie out in the lobby. We get a couple of days off and then a full week of treatments next week. 

Still breathing

I had the day planned out pretty well, I think. I had a dentist appointment at 7am. Then we'd do school from 8-9:30 and head to speech, taking any work that wasn't done. Then home to eat lunch and make dinner before heading to the oxygen treatment at 2:30. Then swing by home at 5pm to pick up dinner and get the kids changed for gymnastics.

Yeah, and then the wound care center called and asked if we'd mind coming in at 1:30pm to do some paperwork?

So we barely got lunch in after speech before heading back up to the hospital campus for the afternoon. I got a little bit of dinner prep done but not as much as I needed.

Emily's first oxygen treatment went well. She had to put on adult-size scrubs since they don't usually treat pediatric patients (the previous youngest patient was 17). We both giggled over her "clown clothes" and then she climbed up on the bed. She was a little nervous going into the chamber but did great once she was in there! She got to watch TV for two hours so that kept her pretty occupied.

I bounced back and forth between the treatment room and the lobby, giving three practice spelling tests and grading math work. We did finally get everyone's work done. :)

The other kids haven't seen Emily's "sliding bed" (as she calls it) so they kept asking me if she was going to look different when she was done today. I think they were a little worried about what we were doing to her back there. But no harm done; she came out talking up a storm ("stop talking, Emily...stop talking, Emily") and is ready to go back tomorrow. It will be good to have two days of this and then a break before we go every day next week...and the next. 

Still moving

Life is moving at breakneck speed here. I can't even remember what we did last weekend, but I know it's been cold and the kids haven't been outside until today. They should sleep well tonight after gymnastics and cup stacking this morning and then playing in the snow this afternoon.

We've been waiting on the hyperbaric oxygen approval from insurance before we could move forward. We finally got approval today for twelve visits but since I was concerned her mouth is not healing again I wanted to wait until we met with her surgeon before we committed. Emily's having weekly post-op follow-ups with her surgeon so we saw him again today. He thinks everything he can see looks pretty good and appears to be healing so we're going to start hyperbaric oxygen tomorrow. We'll be doing visits from 2:30-4:30pm every day for the next two and half weeks.

I still haven't figured out all of the logistics for this. We'll be missing speech twice and it will make Thursdays a nightmare but it will be worth it if it helps Emily heal.

I seem to be on a roller coaster of "God's totally got this" and "I'd like to crawl into a hole for the next few months" which I'm guessing is probably normal. I hate saying "Emily, don't talk!" every minute (literally) because even though her jaw is wired shut she is still talking. Earlier today I was on fire and ready to go and just knew we could make this all work. Then we got home and now I think I'd like to turn my life over to someone else to run for a few weeks. And then I think isn't that what God's supposed to do...if I let Him?

Prayers for my sanity are much appreciated, as well as whatever help God thinks we need now. I must confess to not even knowing exactly what it is we need although I think I'm going to be looking for someone to sit with the kids in the lobby of the wound care center while Emily is getting her treatment. I'll be able to go back and forth but especially for the first few treatments I need to be back with her some. Since the center is not normally available for pediatrics they had to get some pediatric riders and one of the conditions is that there will be a pediatric anesthesiologist monitoring her during her treatments. This means there will always be someone extra back with her and she'll love having an extra person to give her attention.

So that's today.

No surgery yet

Emily's follow-up went really well. As expected, her surgeon cannot fix the top arch bar without going in to the OR and sedating her. He doesn't want to do that and neither do I. Emily has been pretty traumatized both emotionally and mentally by this whole process. We ran into a doctor in the hallway yesterday at Children's and he was chatting with the kids. I noticed he was a surgeon (neurosurgeon) and mentioned that "he's a surgeon, like Dr. ...". Emily went completely still and just stared at him.

So yeah, no more surgeries until we remove everything.

Her surgeon took off some of the wires that had been attaching the top arch bar to her teeth and I had already cut the rubber bands off of the front few brackets. Now we just leave it. Since it's not actually there to stabilize her jaw--just to keep her from talking and moving her tongue--it should still be able to do the job.

That made this morning very happy for me. It was a quick visit to the surgeon and the news was as good as could be expected. I'll take it.

I love Thursday because it means the next day is Friday

Thank you for letting me vent. I'm better today. ;)

We will be going in to see the surgeon tomorrow to see if he can repair the arch bar in his office. I'll just leave it at that.

Got good news from the insurance regarding the hyperbaric oxygen treatment. They will basically cover it at 100% after we get the pre-determination letter (still waiting on that; it's supposed to be marked urgent and responded to quickly). Normally we would have some out-of-pocket cost before they would cover at 100% but we've already met our out-of-pocket for Emily for the year. :)

Another day at Children's tomorrow, but that only makes three this week. Four is our record, so it can't have been too bad/crazy of a week.

Mark and I watched Soul Surfer tonight after he ditched band to hang out with me. Awesome movie and such an inspiring story. Good way to end the day, with a little hope and encouragement (and time with my hubby since quality time is my love language!). :)

Venting

I'm not allowed to scream at home because it will freak the kids out so I'm going to vent on here. My apologies for the all-caps.

I AM LOSING MY MIND!! EMILY JUST BUMPED HER CHIN AND KNOCKED ONE OF THE ARCH BARS LOOSE! A CALL TO HER SURGEON SUGGESTS WE MAY BE GOING BACK IN....AAGGGHHHH!!! I'VE SENT A PIC TO SEE WHAT THEY NEED US TO DO. CAN I SAY IT MIGHT BE VERY APPROPRIATE THAT IT WAS JUST GROUNDHOG DAY??

Harder and easier

We made life a little easier by the arch bars that were put in Emily's mouth. They are similar to braces and use the rubber bands that people use with braces. But instead of the bands being along the sides or in the back, they are across the front of her mouth to prevent her from opening it. This means she can't talk without a lot of work so that is definitely helping her to keep her tongue still.

However, all of her pureed/blended food now need to be about the consistency of water in order for her to get them past the bands. She was able to do thin milkshakes before--now I have to strain everything and thin it as much as possible. Here's a picture from my computer webcam; I'll try to get a better one with the camera later.

Many, many thanks to Sara for coordinating meals and care for us and to all of you bringing us food. The kids LOVED the chicken tetrazzini last night, Thuy, and they were so excited to hear about the tortilla soup for tonight, Katie. :)

And I don't yet know where it came from, but a very special thanks to whomever is letting us borrow their microwave for a few weeks. It literally brought me to tears when I heard that Katie had found one for us. It makes it so much easier to heat up small quantities of blended food for Emily, and it's so much harder for her to eat now that the quantities I'm giving her are even smaller. Please pray that she would stay healthy these next few weeks and that we would be able to feed her well.

We are home!

I got Emily eating (drinking) and we were able to come home. She had no nausea or vomiting which was awesome.

She can't talk which is not awesome, but we'll make it work for the next few weeks.  Please pray for patience for me and healing for her.

Many thanks to all of you who are supporting and loving us through all of this. We are so very blessed to have family and friends like you. Thank you.

On the tenth floor again :)

It makes me giggle every time we come up here and one of the nurses says "you look really familiar...have you been here recently?"

We're up on the tenth floor and I'm watching the snow while Emily naps. She's doing really well but she is not enjoying not being able to talk. She's already gone to the bathroom and had good urine output but it was a little green so the nurse sent it to the lab.

Everything apparently went well with the surgery; it was just a bit more extensive than planned. The surgeon scraped off some of what he had thought to be healthy tissue (in previous surgeries) that turned out to really just be granulation tissue (which means it wasn't really healthy tissue to encourage tissue growth of the flap). Hopefully that will give her flap a better surface to adhere to and grow on.

Right now she's not complaining of any pain or nausea but she's really really frustrated by not being able to talk. Please pray that she will be able to adjust to this for the next few weeks. We have a PECS flip book (pictures to help her communicate) from speech therapy but it's just not going to match her normal level of conversation.

Waiting

I've talked to Emily's surgeon so I'm waiting to be called back to recovery. Our "2- to 3-hour" surgery has gone a bit longer. I'm at five hours and counting, but she should be done soon. I don't believe she's remaining intubated so I think we're going to be sent up to the tenth floor and possibly sent home tonight depending on how she's doing.

Back in surgery

There is something seriously wrong with being known by almost all of the surgical staff. Of course part of it is that Emily is so social and wants to chat with everyone. And part of it is we just keep coming back.

Em went back about 7:45 but not without a fight. She did great until it was actually time to go back. I think she's just mentally worn out with all of this. She started crying and the anesthesiologist asked her if she wanted me to go back to the OR with her. So I donned some lovely (huge) scrubs/covers--which did make Emily giggle because they were so big--and went back to the OR. She was nearly hysterical by the time they gave her the mask but thankfully the gas works pretty quickly and she was under in just a minute.

Before surgery you meet with lots of people and when we met with one of the anesthesiologists she asked me a question about Emily's sutures while she was looking in her mouth. I leaned over and nearly fell over when I saw her mouth.

Her tongue flap was completely dislodged and sitting on her tongue.

When the surgeon came his comment was "We have some work to do today!"

As it turns out (and what wasn't exactly clear earlier) she will be admitted after surgery. Apparently when they wire the jaw shut they nearly always admit to keep on eye on the airway and ability to swallow.

She's got about a three-hour surgery today. I'm going to just keep breathing.

Another notch in my belt

On Friday, Emily managed to pull her sutures out of the tip of her tongue. This meant that the tip of her tongue was dangling from the roof of her mouth. I spent about an hour on the phone getting in touch with plastic surgery to find out what to do about that. I was concerned that leaving it would cause irritation and potential harm to her tongue flap (which was still attached) and the tip of her tongue.

I finally got the go ahead to cut the sutures so I cut the suture between the roof of her mouth and the tip of her tongue and then removed the sutures from her tongue.

Pros: New skill learned--I can remove sutures!
Cons: Yuck. And the tip of Emily's tongue is no longer attached to the roof of her mouth.

AND...then on Saturday she managed to pull part of the actual flap away from the roof of her mouth. That wiring-the-jaw-shut thing cannot come soon enough.

I do want to clarify, though, that the difficulty in getting Emily's mouth to heal is not her fault. There is definitely something about the tissue in her mouth that does not want to grow together. But she is not helping by allowing the tissue to remain stationary and heal (she is 8, after all--you try not talking for three weeks!). That's the idea behind wiring her jaw shut.

Thank you to all of you who are praying. I am truly coveting your prayers both for her healing and for strength and patience for all of us. Emily doesn't complain but we went out to lunch yesterday for Danielle's birthday and she just sat and watched Alex move his pizza from the plate to his mouth...over and over again. I had brought all of her drinks, but she really wants to eat again.