Wednesday, January 29, 2014

Emily's follow up appointment

Emily has another surgery scheduled next Tuesday.

Yep, you read that right. Another one.

And this time, in the surgeon's words, he's throwing the kitchen sink at her.

He will be re-suturing part of the tongue flap to her palate and securing it with bone anchors. He will reattach the tip of her tongue to the roof of her mouth (yes, she has pulled it almost entirely out because she canNOT be quiet!). He will wire her jaw shut to help minimize the amount her tongue can move.

And the possibility of hyperbaric oxygen treatment for additional assistance in healing is being considered. We met with a wound care doctor today (all seven of us--the kids were the hit of the [adult] waiting room and even got graham crackers out of one of the nurses!) and looked at the hyperbaric chambers to see if Emily thought she would be able to handle being in it. She's game, but we're working out the logistics between insurance and having a pediatric patient treated at an adult wound care center. All of the hospitals are connected (literally; the kids loved walking all of the bridges over the roads) but there are still a bunch of details to be worked out and we should know more on that end tomorrow or Friday.

I keep thinking we're on the last surgery, but her mouth just won't heal. And she's not very good at that "Emily, don't talk" command she keeps hearing. Repeatedly. Like every two minutes. Sigh.

So here we go again.

Renovations

The cabinets are in, the countertops are in, half of the kitchen is floored, and the sink, garbage disposal, and dishwasher are reconnected and working! Of course I don't have pictures of all of that, so you'll have to make do with what I have on the computer. Here's what we started with:
 Note the oak cabinets, tile floor, and lack of wall cabinets across from the sink/stove.
We took out the peninsula/island thing, which looked cool but was really a glorified trivet and not useful for much else. The two drawers and cabinets underneath it were it for storage; underneath the actual peninsula was just dead space. We also swapped the dishwasher and sink to place the sink centered under the kitchen window. We moved the stove across the room to get it away from the window and give more continuous counter space. Here Mark is hanging wall cabinets during one of our snow storms:
You can see the wall cabinets on the opposite side and the stove in its new location in the following photo. The pot rack is no longer up as everyone over 5' would walk into it (it was originally over the peninsula). At this point there were still no countertops, but we were using some pieces of the old countertop to make do until the new ones came in. We also put in a new overhead light to match the new lights in the living room and dining room.
 Here is the closer-to-finished product. The new countertops are in in this picture but there's still a lot of wall work to do. I have some better "finished" pics that I haven't gotten off of the camera yet. It doesn't look great in this photo, but I LOVE the new layout and look!

Saturday, January 25, 2014

Julia is 8!

Julia had a birthday while Emily and I were at the hospital. Mark and Julia made her cake--check out Mark's mad decorating skills! He made a cat cake (that was what Julia requested) without a mold. He even made icing from scratch and can I just say...it's way better than mine!





Julia is into doing her own hair and loves to braid. She is reading really well and loves to be involved in anything anyone else is doing. Happy birthday, Julia! Now we have three eight-year-olds for a few weeks!

Thursday, January 23, 2014

Home

Sorry for posting so late. We are home. Mark and I passed in the hall at Children's (literally) as he was taking the kids to speech and Emily and I were leaving. Em and I came home and showered and unpacked and enjoyed the quiet house. After lunch, I took a nap for a couple of hours which was great. I feel a little more unwound. :)

Emily is doing great, although not so thrilled about being on the liquid diet again. We have a follow-up appointment next Wednesday just to make sure everything is holding together. She'll go back to surgery in a few weeks to release the flap.

Wednesday, January 22, 2014

Resting

Thank you for all of your prayers. Emily's surgery went really well. She apparently threw up a little bit in the OR as she was coming out of anesthesia but she doesn't even remember that. There's now a little running joke because the male anesthesiologist washed one side of her hair and the female nurse washed the other side. Apparently the anesthesiologist didn't do so hot and they were chiding him about tangling her hair. :)

We didn't spend much time in recovery and came to our room quickly. Emily was alert but tired but didn't throw up at all! She did ask why she was crying before the surgery. I told her I thought she was really tired and just didn't want to do another surgery.

Mark and I were talking tonight and I think even if our surgeon came back tomorrow and said he needed to get back in there we would refuse. She just needs a break. So I don't see anything keeping her from going home tomorrow. She was "eating" (yogurt thinned with water to a drinkable consistency) and drinking hot chocolate and tea an hour after surgery and is now asleep. Praying for a good night and a discharge in the morning!

Breakdown

Emily just went back to surgery.

It was ugly.

Mark and the kids had come up to visit and we went to the playroom and got to play bingo. Then we went back to the room and right as we got back our nurse informed us that the OR had called and would be sending someone up for Emily in a few minutes. The kids stayed and played for a few minutes and when the stretcher came up they all left. Emily opted to walk down to surgery instead of ride which was fine--she likes pushing the IV pole (see previous post on stress relief ;)). We had to take a separate elevator from her stretcher so when we got down to her prep room she and I walked in to wait for the stretcher.

She got into the middle of the room and then just stood there, staring at the ceiling, then almost fell over. I caught her and said "Hey, what's going on? You're falling over." She just started crying...really, really hard. I pulled her into my lap and we just cried together. I didn't mean to do it, but I lied to her when I told her that Monday's surgery was her last one for several months. She feels so betrayed by her doctors and by me (which she told me in slightly different words).

Here she was ready to start "eating" (drinking) and go home today, and now she's back in surgery. She's hurt and scared and really doesn't want to throw up.

I just want to make it all go away for her.   

Please pray for our little girl, that God would heal her mouth...and her heart.

Not going home

Not only are we not going home, Emily's having another surgery. :( She's managed to pull out one of the stitches holding her tongue to the roof of her mouth. As a precaution and to try to help her mouth heal the surgeon is going to reattach that area of her tongue and possibly stitch the tip of her tongue to the roof of her mouth to limit movement. He was a little unhappy about how much range of motion she has with her tongue right now and how much she is able to open her mouth.

I am not surprised in the least; I'm glad we caught it before we left. This should be a really quick in-and-out procedure (she'll be sedated and intubated but hopefully just for the procedure) but we'll stay the night tonight since the surgery won't be until late afternoon.

We have a cute little roommate now who had throat surgery this morning so she and Emily have been swapping toys. :)

Tuesday, January 21, 2014

Moving up

We're now on the tenth floor and Emily is asleep. She had a really good day other than not being allowed to get out of bed. Now she is off of all IV fluids (still has two IVs, one in each hand) and is allowed to get up to go to the bathroom. She has been taking liquids by mouth for a few hours. I think she should be allowed to go walking tomorrow...and provided she has a good night we will be going HOME tomorrow!

**And as I finished typing that the nurse came in with an IV pole and is hooking her back up. I guess they just didn't do it when we got moved. The worst part about the IV fluids overnight is that she has to get up and go to the bathroom and neither one of us get much sleep. Plus then she thinks it's time to get up since she doesn't usually get up in the middle of the night.

Extubated and awake!

They took the breathing tube out at 11:30am and Emily is ready to be up and walking. Literally. I'm having to push her back down on the bed. She's not agitated, just wants to get up and go. We just removed the catheter to help her feel a little more comfortable. I'm guessing we'll move off of the ICU today but of course I'm not in charge. Good news from the PICU! :)

Morning

I've been awake and up since 5am, which for me is the middle of the night. ;)

Radiology came in and did an x-ray at 5 (to check breathing tube placement?) and I've been up since then. That's not bad. I got about six hours of sleep, an hour at a time. :) Emily is doing well. She's had a couple of coughing episodes but no vomiting. She's still completely sedated but they're running her spontaneous breathing trial (SBT) for two hours which means they've minimized the ventilator settings to see if she can breathe on her own. The vent is still supporting her lungs but is not breathing for her. So far she's doing great. Even if she passes it doesn't mean she will be extubated (have the breathing tube removed) because she still has a lot of swelling and secretions from her mouth. Rounds aren't for another hour so I won't know anything until then. Em's managed to pee around her catheter (which explains her low urine output) so her nurse and I changed her bed linens a little while ago. The nurses here have been great about letting me help. I really dislike just sitting around when I can be doing something.

I think the above paragraph doesn't sound very coherent. I'm even drinking coffee and I'm groggy. This is why I don't do mornings. ;)

Monday, January 20, 2014

In the PICU

There's not much to report since Emily's still sleeping. I did comment to Mark that it's weird to be in the same room with Emily and have it be quiet. ;)

She's having quite a bit of blood oozing from her mouth which is discouraging because it means there's probably also blood going into her stomach. Blood in the stomach=vomiting. :( The nurses did give me permission to suction her so I'm happy about that (not having to ask the nurse to come in every 20 minutes for something I can do). Because she's not supposed to have anything in her mouth, we're only suctioning any fluids right around the edges of her mouth but I figure anything that's not going into her stomach is helpful.

Mark's coming up in a few minutes (thanks, Brad!) to hang out with me for awhile. I'm mostly just sort of bored but also running on adrenaline. I'm not anxious or worried, but I can still feel that my body is running at a higher level than normal. So I'm listening to Joy FM online and annoying the floor with my singing. :) :) I checked out a couple of movies from the Family Resource Room (Soul Surfer and Neverending Story) so I should be well-entertained tonight.

Surgery is done

Emily's surgery is done and I am in the PICU waiting for them to get her settled. The surgery went pretty well but they did decide to leave the breathing tube in so she will remain sedated until that is removed--hopefully tomorrow but the ICU gets to decide that. :) Her surgeon feels good about the tongue flap but he felt good about the cheek flap as well, so we have to wait and see if Emily's mouth feels good about the flap and is willing to heal.

Mark and the kids went to the zoo today after the plumber finished the plumbing in the kitchen. They REALLY like it when Emily has surgery because they have a few days off of school and they get to do fun field trips with papa. Yesterday Emily said she wanted papa to go with her to surgery and when I asked her why she said "so the other kids can have school." Nice. ;)

At Emily's first December surgery Mark and the kids went to the Missouri History Museum homeschool day and got to take a carriage ride. Today they rode on the train at the zoo (thanks, Babushka!) and were watching gorillas wrestle when I last talked to Mark. We make sure not to tell Emily what we have planned for the other kids so she doesn't feel like she's missing out on as much. By the time she gets home she's played in the playroom at the hospital and done crafts and all kinds of other fun stuff so she doesn't mind having missed out.

Trying to be patient but I'm anxious to see her!

Alex and the helicopter

Alex got a really cool remote-control helicopter for Christmas. He sat down with Mark to learn how to control it and the results were pretty funny to watch. It was a little like watching a vertical tennis match. :)



video
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Surgery update

I just got my third call from the nurse (they call about every hour to update the families in the waiting area). They just finished putting the AlloDerm (tissue matrix to help the tissue grow into the hole) in and are starting to place the tongue. This was only supposed to be a 2.5- to 3-hour surgery but I had a suspicion it would go long. I'm supposed to get another call in an hour. Emily's doing great...of course, she's asleep and can't chat everyone up!

A funny thing about Emily: she likes to push things around when she is stressed or nervous. I didn't realize this until her second surgery. When we came in for her first, she wanted to push a Little Tykes car around like a shopping cart while waiting to go back for surgery. She made numerous laps around the surgery wing.  She did it again once she was mobile after being admitted, pushing her IV cart around the hospital wherever she could go. It finally clicked at the second surgery that she had done the same thing in Ukraine, pushing a baby stroller in the orphanage around and around. Now I understand why and made sure she had the opportunity to take laps with the car again today. Surgery is nearly empty so it was easy for her to make lots of laps, first with the car and then pulling a wagon. I figure this is a pretty good stress relief tactic (better than some of the other ones in our family) and she can continue it as she gets older by pushing shopping carts around stores, as long as she doesn't decide she needs to actually buy things!

Christmas

These pictures are mostly for the grandparents. :)













Third surgery

All of my good blogging intentions just don't seem to be leading to posts...until it's surgery time again. I have a lot of free time on surgery days. :)

Emily went back to surgery at 11am and I just got a call from the nurse that they are starting the procedure. She'll be admitted to the PICU when she's done. If I understand everything correctly, if they have to leave the breathing tube in (through her nose) she'll stay sedated in the PICU. If they can remove the breathing tube she'll go to recovery and have some wake up time and then be sent to the PICU.

She's getting the tongue flap this time (really and truly) and the surgeon is using permanent sutures instead of dissolving sutures. She will come back in about three weeks to have those removed. Please pray for her surgery and especially coming out of anesthesia. They're adding all of the anti-nausea drugs they have available this time. :)

Friday, January 03, 2014

Next surgery

Emily's next surgery is scheduled for Monday, January 20. Although the initial plan after the last surgery was to wait a few months to do another one--to allow her mouth to heal--the surgeon was pretty discouraged at how much tissue has completely degraded and saw no reason to wait a few months for this surgery. There's not any tissue left to heal so no reason to wait.

She's got two and a half weeks of eating food (you should have heard her rejoicing!) and brushing her teeth (thank you, God) before we're back to a liquid diet for three weeks. The plan is a tongue flap this time (highly unlikely that will change) and she will probably be admitted to the ICU after surgery and kept sedated until the tongue swelling goes down and there is no concern for her airway. That could change depending on much swelling she has during the surgery, but we have been told to anticipate an ICU admission.

She was thrilled to eat dinner tonight and even got to eat the Christmas cake I froze for her!

Cookie decorating

We had a cookie decorating party at church the day after Emily's last surgery. She refused to stay home so I let her go, but she was a bit out of it. :)




 Julia was sitting across the table and we didn't get many pictures of her, which is ironic because she decorated the most cookies! These are not all ours but enough of them that we still have some left.

Christmas eve

A friend of ours from band, Bill-the-tuba-player, and his wife dropped by on Christmas eve to surprise the kids. They don't have any little ones anymore and enjoyed treating the kids to a visit from "Santa".

 Bill found a huge stocking with six pockets and they added the kids names to it in glitter. It was great since we didn't have a place to put our stockings up this year with all of the renovations (notice the boxes and plywood in the background)!
 They also brought a Santa cake made from a mold that Bill had as a child. Doesn't Bill make a great Santa?
We don't celebrate Santa and the kids don't get gifts from Santa, so this was a lot of fun!

The Christmas tree

This year was the coldest it's been getting a tree. The whole process was pretty quick but we found a great tree that everyone liked. The kids always think the tree is too small in the field and then we get it home and they can't understand why it looks so big in our living room!




Wednesday, January 01, 2014

Disappointment

We still have Emily's surgery follow-up on Friday, but I already know the outcome.

She still has a hole.

Her speech has been getting worse and worse since the surgery and I suspected things weren't healing quite right. I asked to take a look at her mouth and this is what I saw:


Below is an explanation with arrows (please forgive me if there are mistakes--the surgeons did their work correctly but I may not explain it correctly! ;)). The arrow on the top right is new tissue from the cheek flap that was placed in her first surgery on December 9. This repaired the base of her nasal cavity. All of that healed up nicely! The bottom right arrow is the remainder of the first cheek flap that was also placed December 9. This was supposed to cover the original hole. That part of the repair failed. The left arrow is the buccal flap that was done December 21. That was supposed to cover the remaining hole after the first repair failed. It, too, has failed, as you can see by the circle in the middle of Emily's mouth. Inside that circle is a hole.  
Not that I probably need to say this, because there aren't that many people that read this blog, but these pictures are copyrighted by us and may not be used anywhere else without permission. I felt the need to add that since they are interesting palate pictures and someone might get the idea of using them.

I'll update after her follow-up appointment once I know our next steps.