Life as a Leach

We got the results from Abby's recent sleep study back yesterday, and we got fantastic news!  She NO LONGER has obstructive sleep apnea!!! The results of her last sleep study, done a little over a year ago, showed that she had severe obstructive sleep apnea (15 episodes an hour!)  Her jaw distraction did its job and fixed the problem!  That surgery was NO JOKE, so we are very happy with the results.  It would have been awful if she had gone through all of that agony without any improvement.  But it worked!!!  Yippee!!!  So thankful to God for this gift! Hopefully, this will make Abby's recovery from surgeries much easier.  We'll see in 10 days! By the way:  sorry about the weird post this morning.  My account apparently got hacked, but I changed passwords and deleted the post.  Hopefully, that will take care of it!

Abby is doing so well with this recovery!!  It has just been so different from the last surgery.   Yesterday, she went to the playroom and gathered lots of toys!  I couldn't believe she had just been in surgery that morning! This morning, Abby got to play music with a music therapist and hung out at the radiothon downstairs for a little while.  Then she had a wonderful surprise (for her) visit from Anna, Lucy, and Aunt Amy!  They played in the playroom, watched a little Frozen, and had several intense games of hospital bingo where all 3 girls were able to win Barbies!  They were all thrilled with their prizes. S Abby drank her required milk today and ate decently.  She's kept everything down, so we should be able to go home tomorrow!!!  Yippee!

The surgeon just came out to say surgery is done and was successful.  Here are some pictures of the metal that was in her jaw!   That's a lot of metal for a tiny mouth! We heard words today we really never thought we would hear.  Abby went from a grade 4+ airway (the worst) to a grade 1 airway (the easiest).  This is phenomenal!!!!  Our Ent has to make the final call, but her days of being a difficult airway are coming to an end!!!! Thank you Lord!!!!  We are so grateful that this surgery was a success.  It wasn't without its difficulties, but it was certainly worth it to open up that airway.  God is faithful.

Actually, we got home Wednesday.  I'm just horrible about posting after we get home from a hospitalization because it is soooooo chaotic.  You should see my living room!! Anyway, we are home and it was a joyous reunion between brother and sister.  We didn't post anything ahead of time because it was a surprise for Caleb. :) I jumped back into work with both feet, so it's time to go!

The picture on the left was taken just before surgery. The one on the right is after the external screws were removed. The hardware will stay in until the end of February, but there is certainly a visible difference in her jaw structure!

Thats what the sweet girl said to me this evening as I out her to bed.  Me neither, girlfriend!  It's been a long month away from home and we are ready to return to whatever our normal is.   My dad is still in the hospital, but is doing better.  He was taken off of oxygen today and has done well so far.  We are hoping that he will come home early this week.   We will all be very glad when he is home! Abby has done well with tolerating her feeds, so we are hopefully that this is her last night with TPN.  Her doctor will be back tomorrow, so we will see what she says.  It will be interesting to see how she does once we start compressing the feeds (we want to do a whole lot in 30 minute chunks so that she doesn't have to be attached to a pump all day). I hope her stomach handles it okay!   I did have a tiny fright with her gtube.  A small, movable bump appeared under the surface and was causing her pain.  We had several doctors vi...

As predicted, my girl's days have been very busy this week!  Yesterday, she had OT with one of our favorite therapists, who has a little girl just Abby's age.  He's so much fun and Abby adores him.  Today, she had PT and speech and had lots of fun doing those too.  The therapists do a great job of making it as fun as possible. Abby also got to spend several hours playing with the therapy dogs, Yuba and Katie Bell.  She was the only one in the playroom for most of the time, so she was ecstatic to have the dogs all to herself!  She played doctor, threw toys, brushed them, and gave them lots of hugs. The girl loves her some doggies!! Eating has been going very well and her chewing looks fantastic!  She was a bit more uncooperative in general today, so she didn't eat quite as much, but that was just her mood.  We are taking the opportunity to try new foods while she has all of this interest in eating!  I keep track of every single thing she eats,...

It was a slow weekend here at The Mount.  The playroom was only open for 2 hours each day and there were no other activities available.  I had some toys with me, but not enough to keep Abby occupied for 2 full days!  I've attempted a lot of origami, although I've determined I'm not good at it. Abby likes it anyway! She quickly grew bored of the same old stuff!  When that happens, she tends to make her own fun.  That inevitably involves either a mess or breaking something! Thankfully, my cousin and his son came for a visit yesterday!  Jacob is great with Abby and pretty much did whatever she wanted to do.  Jacob also brought a Frozen paint set, which was a huge hit with Abs! Abby has made friends with the little girl next door.  She has a lot of physical and cognitive challenges with no one to visit her, so I think she really enjoyed playing with Abby.  She pretty much cries all of the time, except when she is playing with us.  We think s...

We will be moving to MWPH tomorrow!  We are ready to be back among friends who know Abby so well. Abby was able to eat a little applesauce today!  They are being very cautious because they don't want to push her pancreas herself, but they think that tiny amounts every few hours should be okay. She will be enjoying pudding in a little while!  The funny thing is how interested Abby is in eating, which we have never had before!  This could be a good side effect of pancreatitis! Today was a fun, busy day.  She had OT in the gym, went to the library, walked all the way to the cafeteria and back (a very long walk!), and did a fall craft. I met with lots of doctors, did laundry, worked on insurance issues, and packed stuff up. I think Abby had more fun! :) So tomorrow, onto the Mount!  One step closer to home!

I'm at RMH tonight to get some sleep for a change!  Abby has been extremely needy and I've been basically running on coffee.  While I hate leaving her (she was bawling!) :(, this is the last night Matt will be able to be there for a while.  It was a good opportunity for me to rest and recharge. Medically, Abby is doing well today.  Plastics is pleased with how the scars look, so their job is pretty much done.  The peds team is following her very closely.  We usually have multiple visits from them each day, which makes me feel like they really care about her!  Her concerning enzyme levels have decreased slightly, so at least they are heading in the right direction. The thing we are learning about pancreatitis is that if you try to push someone too fast, you can have another attack.  There's already a good chance that Abby will have future flare-ups of pancreatitis, so we don't want to push her past her limit.  Therefore, every increase wil...

Praise God!!!!!  She is talking!!!  She was mad because I wasn't getting in bed with her (a bad habit we have started the last few days...) and she yelled Momma!  I nonchalantly answered and just kept the conversation going.  It worked!   The tears were flowing tonight!  I told her she scared us so much!  Her sweet reply was, "I won't do that anymore."  What a sweet, wonderful little girl!  I have missed her so much!!!

Abby and I were given permission to go on an adventure around the hospital!  We walked all around, taking our time to look out the windows, talk about colors, and notice various things around the hospital.  Even though she isn't talking right now, I'm trying to give her as much language exposure as I can.   I wish I could have taken a picture of our set up!  I was pulling the wagon and pushing the IV pole with the same hand in order to keep them close enough to not pull at her IV!  It was quite a workout! After picking up some dinner, we visited the statue of Jesus in the original part of the hospital.   We both loved getting out for a while!!  I'm hoping to make it a daily occurrence if I can.  It does us both good!

I'll start by saying that Abby was happier this evening than I have seen her in 9 days.  She had lots of visitors and thoroughly enjoyed being in the playroom with them!   She even enjoyed herself earlier today building an ambulance with Home Depot kid projects.   That one tested my skills!  She had a good time playing with the clowns who came to visit.  I was impressed with how purposeful they were with their play to incorporate fine/gross motor! I had her up and moving as much as possible to try to encourage using those muscles.  We did puzzles, walked around the floor, made little toy frogs jump, looked out the big windows inthe hallway, and did a few crafts in the playroom.  So I feel like my girl is heading back to me a little.  There's still no talking and communication is slow, but at least she seems more conscious of what is going on around her.   We still have times when she is far away, but at least I am getting some glimm...

Today was not a good day.   Abby's having some concerning neurological issues.  While I was told many times that it was all just withdrawal, today they decided maybe it wasn't.  We met with lots of doctors today, including the neurology team.  They were concerned enough to want to check for a stroke or seizures, so they did a ct scan and an eeg.  The ct came back ok but we don't know about the eeg.   I miss my girl.  I think she's in there, but she seems very far away.  She stares into space, won't usually respond to us, hasn't said anything or really tried to communicate much at all (we have been trying a lot of methods!!), has very tight arms, tremors often, and moves her fingers constantly.  Every movement is very slow and deliberate--she sometimes looks at her hands like she can't figure out why they aren't working. And needless to say, I am a wreck.  Matt came up when the doctors started being concerned today, but he went home a lit...

Thank you for all of your concern yesterday!!!!  They finally figured out a cocktail that controlled both the pain and the vomiting...and I've written it all down for the next time!!  She is tolerating pedialite now and we will start feeds later today. Abby hadn't gotten sick since last evening, but she has also only slept when the Valium forces her to--so about 1.5 hours every 4 hours.  Otherwise, she's been staring into space.  :( Thankfully, she had a great OT session today.  She stood for about 20 minutes with just a little support, peeled stickers and reached up to put them on a piece of paper, and colored!  We were pleased with her progress.   She even attempted to write her name, which is no easy task when you have tremors! I've been working with her a lot on signing today.  I'm using either yes/no or stay/go to help her communicate, because those signs require limited movements.  Fine motor is not easy right now with the withdrawal, b...

Abby is still getting sick constantly.  The disconcerting part is the amount of blood we are seeing, but the doctors assured us that it was normal after a long intubation.   They can't quite figure out why she is getting sick so much though. They've gotten rid of meds, added meds, increased meds, timed meds differently....and nothing is making any difference. They are still trying though. Despite all of that, she managed to take two walks today!  The second one was a pretty good distance to the playroom and back!  Toys are so motivational! :). Her gait is improving and that really seemed to be the only time she showed much interest in anything at all.   She got to meet Olive, the therapy dog, but her arms are so tight and her hands flap and shake so much that she couldn't pet her.  Olive was so sweet up on her bed though, and Abby clutched the picture of Olive her owner gave her for about an hour after they left! The rest of the day, she pretty much just st...

Abby is still throwing up.  They are changing a few things and trying to decide what works best for her.  Zofran doesn't seem to be doing the trick.  The poor girl keeps making her incisions bleed from the exertion.  They stopped her feeds last night and won't start them again for a while.  The good news is it looks like she should move out of the PICU today, and they are giving her permission to get out of bed when she feels up to it. I don't think that will be right now.... Poor baby.  It's so hard to see her shaking and clenching from the withdrawal.  She's not responding to me at all--just staring pitifully.  I'm hoping she will get through the withdrawal today so that she can start to feel better.

It's just about 3 a.m. and it's been a rough night so far.  Abby has been getting sick all night, even with Zofran.  She can't have another dose until 5:30, so we just have to deal with it until then. She definitely going through withdrawal.  She's shaky, has tight arms, high heart rate, glazed over eyes, refuses to lie down, and isn't responding to my questions or commands.  I'm hoping by tomorrow morning, it will be better. She has finally drifted off for a few minutes.  I've been in a chair by her bedside to keep her calm, but I'm going to take advantage of the current calmness and try to sleep a little.

Abby is back with us--tubeless!!!  She did great!!!! A trumpet is currently in just to secure the airway for a little while.  It will be taken out this evening if she does well.  She has "blow by"oxygen right now and is doing great!! She was angry and crying at first, but a little Frozen settled her right down.  She sleeping now. Thank you for all of your prayers!!!!

Abby just went back to the OR.  It should be about an hour.  She did really well weaving her meds last night, so they are hopeful that this extubation will be successful! Thanks for praying!