We are home!!

Emily woke up quickly in recovery and then fell asleep again and proceeded to sleep for a few hours. I was hopeful that that meant no vomiting but it was not to be. She started throwing up at 7:45pm and it's still going. But it's a lot less than last time and I think she'll be okay if she sleeps tonight. If she's still throwing up tomorrow we need to take her back in, but I think because the work on her mouth was different this time and there wasn't nearly as much bleeding she should be better in the morning. Last time she swallowed a lot of blood and continued draining blood from her mouth for about 24 hours. She's not draining much at all this time. Thank you, thank you, thank you for all of the prayers!

No tongue flap!!

Emily's out of surgery and her surgeon just came by. Everything went really well and by the time they were ready to close the final hole, the surgeon decided it really wasn't big enough to warrant a tongue flap. :) :) Instead he used a buccal flap. (Yeah, I didn't know what it was either. I just Googled it.) Essentially he took another flap from her cheek, but from within the cheek (part of the fat pad). So she now has two cheek flaps (one on each side) that are attached to her cheeks and sewn to her palate. The great news is that the flaps do not impair her speech!

She will be on a completely liquid diet until her follow-up appointment which will be the week after Christmas, but yay for no tongue flap! Waiting for a call from recovery and then we'll see where we go from there.

Update from surgery

Just got a call from the OR. They are still working on things. The surgeon has added another piece of Alloderm (a tissue grafting/growth matrix; they used this during her first surgery as well) and is thinking we may not have to do a tongue flap! He is supposed to decide in the next 30 minutes or so. Emily will have another flap, but he may choose to use a different one (another cheek flap? not sure on my end) instead of the tongue flap. That would be great news for Emily!

Back in surgery

Emily just went back to surgery; a bit late but they are very booked today. Everything seems to be according to plan except for one "surprise".

The surgeon was in agreement with me that the part of her cheek flap that is left looks really good. Unfortunately we had some additional necrosis (tissue dying) along the side of the flap over the past week so there is a bit more to cover than he had originally planned but that's not a big deal. We're looking at a tongue flap as well as additional stitches along the side where some of the tissue is gone; about a three-hour surgery.

The anesthesiologist mentioned one thing that caused me to catch my breath. Apparently when they are working on the tongue it tends to cause a lot of swelling which can compromise the airway. If she has significant swelling and they feel that she would not be able to breathe safely on her own, Emily will be kept sedated and admitted directly to the ICU.  

That I was not prepared for.

The huge benefit to that (I think) would be that her body would wear off of the OR anesthesia and we might have less vomiting. I don't know--I'm looking for a silver lining. :)

Change of plans

I got a call yesterday from surgery stating we needed to be there today at 11am. There were some details to iron out on my end so I got busy arranging everything for today. Then about 2:30pm I received a call from our surgeon's admin. An emergency case had come up and they needed to move Emily's surgery to Friday. Not a big deal--it really doesn't change a lot for us--but it has thrown me for a loop! I had planned out the entire week based on surgery on Tuesday. I cancelled speech this afternoon, planned a light week of school, set up someone to come stay with the kids until Mark could get home from work, and planned all of the meals around who would be home when...

 Now I feel completely disorganized.

The current plan is that Emily will be in the OR at 12:30pm on Friday. In the meantime we're doing a normal school week and I'm trying to readjust my mental schedule with the current actual schedule. Emily's doing well. Some of the tissue is definitely dying off and she is complaining of tissue hanging down in her mouth. Unfortunately there's nothing we can do about it; the surgeon will clean it up on Friday.

Surgery next Tuesday

Emily's follow up appointment with the surgeon was this morning. About 20% of the tissue from the cheek flap is dying (it's turning a lovely black color and does not smell good...avoid getting close to Emily's face for the next few days ;)). The discussion was whether we should go ahead and do another surgery to remove the dead tissue and possibly do a tongue flap or just wait and see what happens with the dying tissue. The problem is as the tissue continues to die it will start sloughing off into her mouth, and she will have not only a lot of mouth odor but flaps of dead skin hanging down from the roof of her mouth. I'm thinking that won't be so pleasant for Emily...or the rest of us.

So the surgeon is going to go in and remove the dead/dying tissue. If the tissue underneath is sufficiently healthy and appears to be covering the opening in her palate, he will stop after removing the tissue. If, after removing the tissue, he determines that she still has an opening in her palate, he will cut a small flap from her tongue and sew her tongue to the roof of her mouth. The flap will remain attached to her tongue (like the cheek flap is currently) to give the tissue a good blood supply until it grows into the other tissue on her palate. Her tongue will be sewn to the roof of her mouth for three weeks.

Thankfully this will be a shorter surgery (1.5 to 2 hours) than the first one (almost 5!) and I'm hoping she will have an easier time after the anesthesia. Vomiting continually for 24 hours with your tongue sewed to the roof of your mouth sounds amazingly miserable.

Home!

We made it home about lunchtime today. The rest of the kids were at gymnastics with Mark so Emily and I had the house to ourselves to get unpacked. She is feeling great all things considered. The left side of her face is swollen and a bit tender, but she hates the Tylenol with codeine. I didn't give her a choice on taking it at bedtime. She doesn't settle down and go to sleep when she's in pain. I'll let her live with it during the day as long as she is eating, but she's got to sleep at night. Hopefully she'll only need it for a couple of days.

Everyone was glad to have mama home (and mama was VERY glad to be home as well). One of my favorite things about coming home was seeing all of the work Mark did in the kitchen over the last two days. All of the new cabinets on the west wall are in! No countertops yet (not until all of the base cabinets are set) but it opened up our kitchen so much to take that huge, non-functional peninsula/island out and have real cabinets.

The kids have been enjoying their week off of school. Since we've only taken one day off of school since starting in August (no, we did not take Thanksgiving off--we worked Thursday AND Friday!) I think we've all earned a break, and I knew it would be hard for them to concentrate with the difference in schedules. So Monday they did the homeschool day at the Missouri History Museum, Tuesday was speech and gymnastics for the boys, and today was sport stacking for all and gymnastics for the girls. Tomorrow is speech and a Christmas party, so we'll end the week with a fun evening and relax on Friday!

Going home!

The IV is out and we are just wanting on our prescriptions to be filled. The pharmacy doesn't open until 9am so it will probably be somewhere close to noon when we break out. Emily is doing great but ready to be up and moving.

And more great news--her surgeon was here this morning and said the flap is looking much better! We might not have to do this again after all!! We still have follow-up on Friday and then he'll make a decision as to what needs to be done. Please continue to pray that her flap tissue would have the blood flow it needs to heal so she doesn't have to go through surgery again! :)

One more night

Emily had a really good day after about 7am. She has been up and walking around and NO MORE PUKING. She only ate a few bites throughout the day but ate quite a bit more at dinner and is drinking much better since they turned her IV down. Our attending physician came in to see her about 6pm and said "everything looks good, see you tomorrow morning" so I took that to mean that we were staying.

The one thing she is not happy with right now is the taste of Tylenol with codeine. She hates it but they're not giving her any meds through her IV now so she's stuck with it. Hoping for an early release in the morning. I'm ready to get home and see the kitchen cabinets Mark has been busy putting in while I've been relaxing in the hospital!

I did point out to her that she can say her S's now--without wearing her retainer! She was super surprised about that. She is so used to wearing it all the time that she hadn't thought about the fact that it wasn't in--and people could still understand her. Her jaw literally dropped when I told her. Too cute.

Rounds

All of the doctors have come and visited this morning. Emily was resting for the first group but when the surgeon came he woke her up to have a look in her mouth. She's feeling much better today.

The good news: Emily has had about 5 mL of Sprite and a bite of applesauce and hasn't thrown up. Hooray!

The not-so-good news: According to our surgeon, the cheek flap is not looking healthy, meaning it is not getting a good supply of blood. If that is correct, the tissue will gradually die off. It won't affect everything they repaired yesterday, but they want to try to save as much tissue as possible so we will have a follow-up appointment with the surgeon on Friday. If the tissue from the cheek flap is dying, Emily will have surgery again next week to attach a tongue flap to her palate. This will be in place for three weeks and will effectively tie her tongue, preventing any kind of clear speech. If you know Emily, you could not imagine a worse punishment for her than not being able to talk for three weeks. ;)

Morning

Still vomiting. :( They're trying a different anti-nausea medicine to see if that will help. She asked me earlier tonight if she could go home. When I asked her why, she said "because I don't feel good here." Apparently if she goes home she'll feel good.

I don't think that's going to work. :)

On a positive note, she just took a sip of Sprite--pretty much the tiniest sip imaginable--and it hasn't come back up yet, so that's a good sign!

Bedtime

I was all set to post that the vomiting had stopped and then she threw up again. Hopefully after a good night's sleep all of the anesthesia will have worn off. The bigger problem has been all of the blood she is swallowing from the areas of her mouth that were worked on. While they will continue to ooze for a while, I think the majority of the bleeding is done and that will help her stomach tremendously. Please pray for a restful night for both of us.

We have some awesome nurses here! Many thanks to John (day), Lauren, and Sean (both night) as well as all of the great surgery people!!

Ugh

Still throwing up. Please pray. She's not in any danger, just miserable. :(

Settled

We've made it to a room on 10W and Emily is sleeping. She threw up a lot so I'm hoping she will be able to sleep off the nausea and wake up feeling better. It's pretty painful to watch as she is throwing up a lot of blood (swallowed during the surgery as well as running out of the incisions when she vomits...hope no one's reading this during dinner.). After her strabismus surgery she felt much better after sleeping so my bet is she will wake up and be ready to eat. In recovery, the first thing out of her mouth was "can I eat?". Poor thing thinks we're starving her. :)

Right now we have a room to ourselves which is super nice since Emily can rest undisturbed.

Surgery update

Since you haven't heard from me in months, I'm now going to inundate you with lots of posts in one day. :)

Emily is done with surgery (as of 12:45pm) and is in recovery. I am waiting to be called back. Her primary surgeon (there were two working on her mouth) is optimistic that as long as the flap is able to maintain blood flow this will be the only surgery on her palate (she'll have additional facial surgeries as necessary as she grows). The surgeon was concerned that the flap looked a little pale, indicating decreased blood flow, so please pray that her palate tissue would get the blood it needs to survive and heal!

At the hospital

It's finally here. The day Emily has been asking for for almost a year now.

She's having her "hole surgery".

This would also be known as a palatal fistula repair. :)

Em's back in surgery right now. It's supposed to be a 3-4 hour surgery. Mark's home with the kids (they're going to the Missouri History Museum homeschool day!) and I'm hanging out. A dear friend is on her way with coffee from Starbucks. This same sweet friend has been through a few surgeries with her girls and was able to offer some great advice as Emily and I will be spending the night here. Originally we had talked about having this surgery done in Boston but I am so glad we are home.

Please be praying for Emily. She does NOT like waking up from anesthesia (she threw up a lot after her strabismus surgery) and she is really dreading that part.

I have a cold

...but my antibiotics have cleared my previous infections up nicely. This has been quite the month. I think I felt good the first few days and not since then. It's not that I feel terrible, just run down and ready to be healthy again!

We took Danielle's first (okay, second) set of casts off tonight and she gets the next set tomorrow. Then only one more set. She's also getting casted tomorrow for AFOs (ankle foot orthotics) to wear at night to help keep her stretched. She has tolerated the casts GREAT! She calls them her boots and thinks they're cool. I honestly expected a lot of drama over them but we really talked them up beforehand. And since she's not missing out on any activities she's pretty content. I will be very glad to get the serial casting done before it gets hot and we're trying to go swimming.

Everyone can tie their shoes!

...and there was much rejoicing! ;)

In other news, the offer for our house finally went through. We went through about a week where we thought the contract was going to fall apart. They wanted some things done that we refused to do. They finally caved and we are set to close in mid-May. That will be a wonderful day. :)

Danielle got her first set of serial casts yesterday...and we have already broken BOTH plastic foot plates that are in the bottom of her casts. Thus, we go back in tomorrow for new casts, without foot plates. So tomorrow we have speech x1, physical therapy x1, and casting x1. Better than yesterday which was supposed to be speech x3 and casting x1. We switched our schedule around so we weren't spending all day at SLCH and did speech x1 and casting x1. Part of the difficulty with the casts is that Danielle can't be weight-bearing for four hours after the casts are put on. Yesterday we went down to the cafeteria and did schoolwork while they dried, and then Mark came by after work and got Danielle in the van. I'm thinking we'll run the same plan tomorrow. During speech and PT the rest of us will play in the rooftop garden, and then when we're waiting for the casts to dry we'll do schoolwork.

I must confess to loving the flexibility of homeschooling. Since we have so many different therapies going on right now, taking people in and out of school would be a nightmare. This way we just take school with us. :)

SLCH

It's a good thing we love Children's Hospital so much, and that it is so close! We are spending three days there this week, although very thankfully all as outpatient.

Tuesday was one hour of speech for Emily. Normal time, normal activities for the rest of us (playing in the rooftop garden).

Today was a tooth extraction for Tim. He had full sedation and was intubated (which was a surprise for Mark and I) and had three teeth removed. He had an extra adult tooth on the top row that was preventing a few of his adult teeth from being able to drop down. This also meant he had not lost some of his baby teeth since the roots were not being dissolved by the incoming teeth. No worries; he lost two baby teeth and an (extra) adult tooth today! He did great and is the first of our kids to undergo anesthesia without throwing up afterwards (he's the third kid to undergo full anesthesia, and another has had nitrous). We had prepped him pretty well. He felt miserable when he first got home. He took off his coat and shoes and went straight upstairs to bed. I think he thought that's what he was supposed to do as I had told him that when he got home he wouldn't feel good and would want a nap. ;) After he woke up he ate a bit, watched a movie (a very special treat in the middle of the week around here!) and then started playing. By bedtime he was pretty normal, but a little more subdued than usual. I made sure he knew to wake me up if he woke up in pain. Sometimes our kids just don't think to come tell us if they have problems at night since they spent so long without anyone to help them. :(

Tomorrow is speech for Emily in the morning (school for all the rest in the cafeteria!) and then a physical therapy evaluation for Danielle in the afternoon. I was hoping we could get those scheduled concurrently but I'll take a separate eval time if we can try to get regular therapy times coordinated! We had put off having Danielle do PT for quite a while, giving her time to strengthen her muscles and simply be upright for more than a few hours a day. But now I am concerned about her posture and think she probably needs to do some more stretching and strengthening to prevent back problems in the future. Our pediatrician agreed so we'll see what the PT thinks after the eval tomorrow.

Thankfully the kids are very used to our crazy schedule and are learning to do school pretty much anywhere. That's particularly good as both Julia and Danielle will be starting speech therapy next month. I think we're going to need our own schoolroom at Children's!

Spam

So apparently if you don't post for awhile, some kind of spambots take notice and start trying to spam your blog. I'm getting multiple spam comments a day.

I think it's a hint. :)

Without further ado, a brief update:

Hives: We had our first incident of hives. Although none of our kids have ever had hives, I recognized them pretty quickly. A sudden case of big red splotches seemed pretty clear cut. The problem was figuring out the cause. We had gone to the zoo over the weekend for Mark's work picnic, but we hadn't done anything unusual and the food was hot dogs and burgers, so nothing odd there. But nevertheless, Sunday night Emily was covered in splotches. I gave her some Benadryl and she was good in the morning, but then Tuesday afternoon they popped up again. After some Googling and a call to the pediatric nurse, we just kept giving her Benadryl. But no one had said how long to give it to her, so I gave it to her for 24 hours then stopped. Thursday afternoon she looked like this again:

After three more days of continual Benadryl, the hives seem to be cleared up. Still no exact idea as to what caused them, but we did pet the stingrays at the zoo and got splashed (dripping wet) by one of them, so it might have been something in the water. However, the kids and I went again this past Wednesday and she didn't have any problems, so...???

A birthday: Alex is 9! He had a great birthday and we've been talking a lot about being 9 and what that means for him. I think he's excited to be growing up. :)

Circus Flora: The kids LOVED the circus. I really hope we can make this an annual tradition. The newest girls were just in awe of everything they saw. I think the kids liked the dog act the best, but I really liked the jugglers.

I have pictures of Alex's birthday and the circus, but since I've already waited a week to post this hoping I could get to the other computer and add the pictures, I'm just posting without them!