Showing posts with label Emily. Show all posts
Showing posts with label Emily. Show all posts

Friday, December 20, 2013

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. :)

Tuesday, December 17, 2013

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.

Friday, December 13, 2013

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.

Wednesday, December 11, 2013

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! :)

Tuesday, December 10, 2013

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!

Monday, December 09, 2013

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.

Tuesday, September 13, 2011

On reading

Emily thinks she can read.

She can't. She can sound a few words out, but she much prefers to just guess.

I do oral reading every day with the three oldest as part of our homeschooling, and sometimes she just can't stand being left out (I do reading with the youngest three as a group as they are all at about the same place), so occasionally she begs me to allow her to read to me. While I would love to encourage her, it's honestly incredibly painful.

Let me illustrate.

She gets a reading book and begins going through the pictures and telling me the words she knows. Then she gets to C-U-B.

"Cat?"

"No, Emily, sound it out."

"Cup?"

"No, try again."

"Basement?"

Sigh.

Thursday, April 21, 2011

Some explanations

I think there might be a little confusion out there about the current state of our family, plus there may be a few of you who are just joining in from this last adoption so I thought a detailed explanation of "us" might be in order.

Mark--sole breadwinner and highly esteemed physical therapist, house rehabber (rebuilder!), and worm digger

Courtney--highly educated (not the same thing as qualified, FYI) stay-at-home mom as of this past Monday, former maker of medicines, now dispenser of more band-aids than can be counted

Alex--8 years old and going on 40, loves history, has issues with anxiety especially with schedule changes

Tim--7 years old, loves to tell jokes and do "magic" tricks, keeps me laughing when he's not driving me crazy with his antics

Danielle--7 years old, thinks she's a princess, prefers not to do any work (princesses don't have to do work, do they?) and is definitely going to want the largest share of the mirror as she gets older

Bianca--6 years old, new to the family in March 2011, loves language and almost knows the alphabet song (there are lots of C's in her version)

Emily--5 years old, thinks she's cute (and will tell you!), never ever EVER stops talking

Julia--5 years old, new to the family in March 2011, has an infectious giggle and a monster pout

Those of you who've seen us out and about during the week have probably also seen another little girl with us. That's R. She's 18 months old and the daughter of one of Mark's co-workers. We babysit her during the day. We did not adopt another child right after Bianca and Julia. :)

As you can imagine, things at our house are a little chaotic. Right now during the day it's usually just Bianca, Julia and R, but on days like today and tomorrow when the other kids are out of school I have all 7 at home. I've found divide-and-conquer to be an effective strategy. As in, send two to play in one room, two upstairs, etc. ;)

In the stay-at-home realm, I am still LOVING IT. I am so much more relaxed than when I was working (that should say something since I have 7 kids at home!). I love that I can do all of our meal preps during the day. I am slowly tackling various projects around the house to try to better organize and streamline our lives.

Sunday, February 20, 2011

Home

We arrived home Saturday evening about 5:30pm. The flights were great and we actually managed to get exit rows for two of them (no, not the really long one ;)).

Poor Emily put her hands on her hips when we got home and said "Where are my sisters??" She is very proud to tell you she has two new sisters names Julia and Bianca. All of the kids are really excited to get the girls home, which is so sweet.

Now it's back into the swing of things for a week. We had lots of school papers to go through and we let the kids sort their Valentines yesterday--that was on hold until we got home.

We've had two meltdowns since getting home from two different kids. I was just happy they were at two different times. I fully expected this since they are all on emotional overload with us being gone for a couple of weeks and then being home again.

And while we were traveling, Bianca turned six. So for those of you keeping track, it's 8 (Alex), 7 (Tim), 7 (Danielle), 6 (Bianca), 5 (Emily), 5 (Julia). And yes, we've already nearly had heart attacks at the thought of what our household will be like in 10 years!! ;)

Monday, November 29, 2010

Thanksgiving

We had a nice Thanksgiving visiting family. Mark had to work Thursday and Friday, so the kids and I hung out at home. I grilled out a turkey in the snow(!) and we did lots of playing. We left to visit family late Friday and got in even later (well past the kids' bedtime). Of course they were still up early Saturday so we put all of them (and Mark :)) down for a rest at 10:30 Saturday morning so they could have some down time before family arrived.

And when they arrived, the kids had a blast. They had lots of second cousins to play with and of course lots of food to eat. Once lunch was done, Mark and I took all of the kids (still loving the 12-passenger van) to a playground. We had to laugh when we got out at the playground and watched the other moms' faces when 8 kids got out of our van, ages 13, 13, 8, 7, 7, 6, 5, and 5.

The other adults at my mom's house were quite happy we had rescued them from the swarm of small children. :)

We spent about an hour at the playground before heading back to my mom's house. The cousins had to head home (two of them were in the car three hours each way--just for lunch!) so the kids all said goodbye but are excited about the possibility to see everyone again at Christmas.

I loved getting to meet my 3-month-old niece for the first time. She's a sweetie and the kids adored her--although Alex decided she needed to go home and take a nap when she was crying.

We've paid for the quick trip and the overstimulation of lots of people with some increased negative behaviors with Danielle and Emily. It's unfortunate, but it's going to be quite a while before they're really able to handle a lot of family. Of all the things we have to be thankful for, I am so thankful for our supportive family and their understanding of our need to do things differently for our kids. It sometimes takes a little extra planning, but it helps so much to be able to have them rest, or take breaks, or whatever they need to help them better process and enjoy the holidays. :)