Sunday, November 30, 2014

Before and After


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!

I Cant Wait to Go Home!

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 visit her and they have determined that it is a dissolvable stitch that didn't dissolve, so the body is trying to fight it off by surrounding it with stuff.  It will hopefully go away on its own, so they don't think it's anything to worry about.  Shew!

The weekends are long and boring, so we were very thankful for our visitors!  It definitely helps make the days go faster and it's fun for Abby to have new faces besides me.  I think she's tired of me. :). 

We have also done a lot of playing with a few other kids on the unit.  The little 6 year old boy next door has had fun playing with Abby.  He is from Dubai and speaks almost no English, so we have been teaching him. (Who says the ESOL teacher is on leave right now?!). It's so cool to see kids still play together and enjoy each other, despite the language barrier.  We have learned a little Arabic too!  We have also been playing a lot of games with our buddy I shared about on Thanksgiving.  Everyone especially enjoys chasing after his remote control truck as he drives it around the unit!

We still aren't sure when we will be home.  It really depends on how she handles compressing these feeds.  Friday will be a month inpatient....for a surgery that was supposed to be 10 days in!  But, at least they discovered the problem and were able to treat it.  She is feeling well and is happy, so we can hang out a little while longer.  

Just as I wrote this last sentence, the kid next door started screaming through our paper thin walls. 

 I can do this.  I can do this.  I can do this...

*sigh*

Friday, November 28, 2014

Updates on Various Sickies I Love

Matt was able to stay with Abby today while I went home to visit my dad.  It's really hard for me to be away when he is sick, and I had a lot of concerns.  I was able to get a lot of the questions I had regarding his care answered.  I took a lot of notes during our discussions with the doctor and respiratory therapist, then texted those notes to my mom and sister so that we all had the same information!  I pressed the doctor for a plan (I like plans instead of the "wait and see" method of healthcare!) and was satisfied with what he laid out.  

The good news is that Nurse Julie successfully got his oxygen turned down and a portable rank for him so that he could get up and walk!


I'm pretty sure the staff has me on their list.  I might be blocked by security the next time I try to visit.  (No, seriously, I was very sweet and had no reason to even raise my voice!). But this is my DAD!  I have got to make sure he is okay, and I'm the one with enough medical knowledge to check up on the doctors and ask the right questions!

My hope is that if he continues to do well over the weekend, he can possibly go home Tuesday or Wednesday.  It's been a rough week!

Abs is doing well at MW and is now on FULL FEEDS!  That means that she is finally receiving all of her calories per day by gtube instead of relying on the TPN.  If she tolerates these feeds over the weekend, the TPN should be stopped on Monday! (Insert happy dance here!). Then we can finally work on compressing feeds and deciding how much she can take orally.  

I would be lying if I said I'm thrilled about her being gtube dependent again.  This was supposed to just be a safety net!!!!  That darn pancreatitis threw us for a big loop and has caused so many issues.  While we are disheartened that she will come home completely gtube fed (she can eat orally, but isn't really doing enough to account for any calories), it's what is best right now.  It's just a significantly bigger step back than we had planned when we agreed to put the tube back in.  

I really hesitated to even begin calling myself a "tubie mom" again because it was only going to be used when absolutely needed.  Otherwise, it would just be a fun belly accessory.  But now....yep, I'm officially a tubie mom again! Time to be loud and proud!









Thursday, November 27, 2014

True Thanksgiving

 Our Thanksgiving meal wasn't around a big, brightly lit table; we were in a cafeteria.  There was no carved turkey with all of the fixings sitting in the middle; we went through a line and got food ice cream scooped onto our plates.  The food was mediocre at best; I missed our candied sweet potatoes and homemade pies.  We didn't share a meal with extended family and enjoy the laughter and noise of the kids; we sat near complete strangers with CNN blaring in the background.  

But you know what?  I WOULDN'T CHANGE IT FOR THE WORLD.  Our little family was together and happy, and that is all that matters to me.

Today, my heart broke for the kids who had no one with whom to share their meal.  While I was blessed to eat with my family, they sat alone.  While we laughed and played, they sat in their rooms and watched TV.  

I don't know their situations and I know that some people do have to work on Thanksgiving, but I would absolutely make sure that someone was there for my child!  One 13 year old boy told me all day long that someone was coming to visit him...no one ever came.  When i took him some summer sausage from an awesome fruit/meat/cheese basket we got, he looked like he was close to tears. I tried to get him to play a game, but he wasn't in the mood.  I could understand.

For some of these kids, the only fun they have is with the therapists.  Today's holiday meant all of the therapists were gone. My wheels are already turning for what we can do in the future.  Maybe we can do a craft in the morning, or at least send craft kits for the kids to do.  Or maybe we can bring a bunch of games to play with the kids.  Something has to change...these kids have gone through too much to just sit there in front of a TV an entire holiday.

When you pray, remember the families in the hospitals.  But especially remember the ones whose circumstances left them without family today.  They need a little extra love tonight.

Wednesday, November 26, 2014

So This Happened...



Lol! Matt won't be walking around in flip flops for a while, but he is certainly a dad who will do anything to make his kids smile!


Tuesday, November 25, 2014

Busy Days!


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, because it affects her total caloric intake and how much TPN she gets.  She has currently eaten 15 goldfish in an attempt to avoid falling asleep.  So far, it's working!

We have seen no signs of pancreatitis!  Her numbers are getting better--not normal, but better.  They are going to check her enzymes again on Monday.  The TPN has been cut to 12 hours, which means she only needs it from 6p to 6a now.  She still has the feeding going all of the time, but at least it's only one tube instead of 3.  She is also back to her pre-surgery weight, which makes me very happy.  Next week, they will begin compressing her feeds so that we can have w more manageable home schedule.

Tonight, we had a little "girl time," as Abby likes to say.  I painted her fingernails and toenails....



And she painted mine!  :). You should have seen her eyes light up when I asked her if she wanted to.

The sweet girl next door is going home tomorrow.  I think Abby might cry when she leaves!  She really enjoys spending time with her, and it's so awesome to see kids just be kids.  Abby doesn't see the physical or cognitive delays.  She just sees a little girl with a pretty smile who likes to play.  Love!

On another note, please continue to pray for my dad.  If you've seen my Facebook updates, you know that he is in the hospital for pneumonia and is in a tremendous amount of pain.  He really hasn't gotten much better and they can't figure out the cause of the pain.  He had another CAT scan tonight, so hopefully that will provide some answers.  

Sunday, November 23, 2014

Slow Going

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 she even tried to say Abby's name!  Abby loves her too and has big plans to do manicures with her when Matt brings the nail polish up!  :)

A lot of the kids here don't really have visitors and just lie in bed watching tv all day.  It makes me so sad to see them when they should be out and about doing something!  The nurses try, but they have 4 patients each.  They can't entertain kids all day!  A nurse doesn't take the place of a parent.  I know everyone's circumstance is different, but I am going to be right by my girl's side.  As long as she is in the hospital, I will be too.  

My mom, grandmother, aunt, and uncle visited today, which was a great distraction from the boredom!  Mom came with her magical suitcase of fun, and Abby eagerly played with just about everything in it!  She left a few things to hopefully entertain her when we have downtime.



I expect that this week will be at a much quicker pace with all of the therapies Abby will have.  She will get OT, PT, and speech, as well as lots and lots of feeding therapy.  The Child life Specialists will be here more, so we can go to the playroom and participate in activities there.  I'm guessing they will probably have lots of Thanksgiving crafts to do this week.

We had hoped to maybe get a day pass to go home for Thanksgiving, but it doesn't look like that will happen.  Abby is still on TPN 24/7 and we aren't trained.  So, we will enjoy Thanksgiving as a little family of 4 here at the hospital.  Volunteers make dinner for the families, and I'm sure we will get lots of yummy leftovers from my family too.  It's being together that matters!  Choosing joy!

Friday, November 21, 2014

Welcome to the Mount!



We said a bittersweet goodbye to our friends at Hopkins today and traveled by ambulance to Mt. Washington.  

Abby was not thrilled with loading onto the ambulance, but she settled down when she realized I really was going with her!

We settled in at The Mount, thanks to my wonderful parents who brought all our stuff over and helped me unpack!  They rock!



Abby has already been seen by her doctor, 3 therapists, 2 child life specialists, and the therapy dog! :)


Fabulous news:  Abby chewed wonderfully for her feeding therapist!!!!  We were all amazed at how well she did. It looked fantastic and SO much better than before!  The new jaw alignment is working for her! 

Later, some Ravens Mega Fans came to visit.  They handed out treats and had cake.  These big, fierce-looking men were so sweet and gentle with the kids!


Abby ate almost an entire piece of cake during the party!!! I was ecstatic! She says that it is a lot easier to swallow now.  Yay!!!!

The Child Life Specialists then had the kids make their own Ravens shirts. In loyalty to our Redskins, Abby decided to use sparkly purple to make her own shirt!  She was 100% the artistic director!


It's been a fun first day, so hopefully they will have more fun things to do this weekend!






Thursday, November 20, 2014

Moving Out!

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!

Wordless Wednesday







Tuesday, November 18, 2014

Where Should We Go?

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 will be done very slowly and she will be closely monitored.  They just started TPN (artificial nutrition) this afternoon, and she is getting a tiny amount of pedialyte in her gtube to see how she does.  So far, so good.  They really don't know how long she will be on TPN.  It hopefully won't be more than a few weeks, but it could be longer if she isn't tolerating feeds.  They  have a low threshold right now for stopping anything by gtube if she vomits or has any pain at all.

So since she's going to be on TPN for a while, we will be heading to a rehab facility of some sort until the feeding stuff is straightened out.  We found at today that KKI won't have a bed available this week, so the coordinator is now checking with MWPH (where we have been inpatient several times and where we did our feeding program) to see if we can get in there sooner.  We know that the hospital setting is not the best for Abby, so getting her to a place that is a bit more homey will be good for her all around.  Plus, the therapy here has been less than stellar (very sporadic and not very helpful), so I am anxious to get her in a placement that specializes in rehabilitation.  Either place should meet the needs she has at this point, so I think it will come down to which one could take her quicker.

The good news is that the MRI came back clear, which apparently gave Abby permission to talk!  ;)  She's still only talking on her terms and is very hard to understand, but at least we've got something. Her fine and gross motor skills are better.  She's still got a ways to go before she is back to her baseline, but I definitely feel better about her not having lasting effects from a lack of oxygen.

So, we will do an intensive program to work on the feeding issues (I'm not even sure actual oral eating is even a goal right now, but we'll have to see how well she does switching to gtube feds), as well as work hard on fine and gross motor and speech.  I'm hopefully that if we get a jumpstart and hit everything hard now, we will be somewhat back to baseline when we go home and can pick up where we left off.  Wishful thinking?  Perhaps!

When are we coming home?  NO idea.  I was hoping to be home by Thanksgiving, but I don't think that's a realistic goal.  So now I'll just say that we will be home by Christmas and I'll be happy if it's before then!  Thankfully, our RMH family is here for us and we can stay as long as we need to.

Regardless of where we are on Thanksgiving, we'll be together as a family and thanking God for bringing our Abby back to us!

Monday, November 17, 2014

She's Talking!!!!

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!!!

Sunday, November 16, 2014

Adventure

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!

Plot Twist

This was just supposed to be a jaw surgery.  Abby would be intubated for 5 days to let the swelling go down, she would wake up, we would deal with pain, and then everything would be fine.  We would go home with our little girl and her fancy new jaw.

PLOT TWIST!  

Abby's neurological concerns are still there.  We have worked with OT and PT, as well as consulted with many doctors, and they all feel that inpatient rehab at Kennedy Krieger is the best placement for her.  Our insurance company has already been trying to say she could get therapy at home, so the doctors are prepared to fight.  All my local friends know that there's nothing comparable to kki anywhere near us!  Neuro came in to do another exam this morning.  While we are seeing some improvements with the spaciness, she is still having a lot of trouble with her arms and trunk control.  She is also still drooling uncontrollably.  Plastics kept telling us it was from the surgery, but now they are changing their tune.  There are certainly still enough concerns to warrant an MRI.  That will be done tomorrow when she is already under anesthesia for her pin removal.  Is is awful that I am almost hoping for something to show up so that we at least have an explanation?  I just want to know why this has happened!

At that time, a picc line will also be placed.  Turns out, she should have had one all along and the peds team doesn't really understand why plastics didn't order one from the start.  Awesome.

We waited to write an update until we had more definite answers to the newest concerns.  On Friday, Abby started having severe, intermittent belly pain.  It escalated overnight and she got sick, so they stopped her feeds and gave nausea medicine.  Things got even worse on Saturday, so blood work was ordered.  It showed an elevation of several enzymes, which pointed to pancreatitis.  Feeds were held altogether, iv fluids were ordered, and they did an ultrasound.  The ultrasound looked fine, so plastics said she was fine.  (Meanwhile, she is still writhing in pain...). 

The peds team disagreed (God bless them!!!) and ordered repeat bloodwork this morning.  The enzymes are significantly more elevated than yesterday, which confirms pancreatitis.  Plastics is still saying she is fine...

*sigh*

As far as I'm concerned, plastics has done their job and now it's the peds team who is in charge.  Unfortunately, she was admitted by plastics, so they are the primary team and everyone answers to them.  The peds team is now discussing Abby with them...  I'd love to be a fly on the wall in that room!  

The big question is what caused the pancreatitis?  It is always caused by something and is rarely seen in kids.  Typically the culprit is gull stones or alcoholism.  There were no gull stones on the ultrasound and we are pretty sure she hasn't been sneaking down to the liquor store after bedtime, so they are miffed.  The peds team is now analyzing all of the meds she has been on for the last week and a half to see if any if those could have caused it.  

Since feeds are out of the question right now and nutrition is always an issue for Abby, the picc line being placed tomorrow will allow her to receive tpn (artificial nutrition) until things settle down.  She will be able to go to kki on tpn, and the feeding team there (world renowned!) will work to get her back to where she needs to be.  

There's still no date as to when we are moving to kki.  It won't happen until she is medically stable and we get approval by insurance.  I'm hoping we will be there by the end of the week, but I'm content being here if necessary.  I'm working with Abby as much as possible and I think it is starting to show a little.  Sadly, literally the ONLY place she had left for an iv was in her foot (confirmed by ultrasound), so it had to be placed there yesterday when the last one blew.  Now she can't walk.  :(

To make matters worse, they were also testing for a nasty infection called c-diff.  Until results came back negative, she was on contact precautions.  That means we couldnt go to the play room or ride around the unit in a wagon.  I was confined to the room and was not allowed to go to the family kitchen for water or to heat up food.  I did sneak down to the cafeteria late last night when no one was looking (shhhh).  Anyonewho came in must wear a gown and gloves, but I was already "contaminated" if she did have it.  Thankfully, I literally JUST got word that it was negative.  Praise God!  It's off to the playroom for us!

So many people have asked about visiting.  We love visitors!  We declined any visitors today because we really thought Abby needed a day to just rest.  Her little body has been through so much and she is currently getting the best nap she has had!  Any other time, we love visitors! (Although we appreciate your flexibility, as she seems to go from one extreme to the other rather quickly!) 

Please know that her doctors have REQUIRED that all visitors have had the flu shot.  It takes 3 weeks to take effect, so you must have had it by the last week in October.  Please don't take offense when We ask you this.,,we are just trying to protect our girl from any more suffering.  If you haven't had the flu shot, the best thing you can do for Abby is pray!  She also loves getting cards in the mail.  Our room is quite decorated with thoughtful messages and I read her all of them!  Our address at rmh is:  

Ronald McDonald House
The leach family
Room 207
635 West Lexington Street 
Baltimore, MD 21021

Thank you for continuing to pray as we deal with what has turned into a bit of a nightmare.  Right now are specific prayer requests are:

*we are approved easily for kki
*Abby's enzymes return to normal and the inflammation of the pancrease subsides
*the c-diff test comes back clear
*all of the doctors get on the same page and work together to get Abby well
*we find an answer for the neurological concerns

This is all so hard.  We are exhausted in every sense of the word, missing being together as a family, and so frustrated by all of the crazy stuff that has happened.  The joy of The Lord is our strength right now.  I don't have any of my own left, that's for sure!


Friday, November 14, 2014

Glimmers, Frustrations, and Next Steps


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 glimmers of hope!

We haven't seen much improvement with the physical concerns.  She is still very shaky, is very reluctant to use her arms, has no grip, and lacks trunk control.  I am still moving her in and out of bed, she doesn't sit up well without support, can't pull up her pants or help get clothes on, etc.  

After talking to a lot of people today, including our awesome therapists at home, we have determined that our next step will be an evaluation from Kennedy Krieger.  I was told that this was really more than I could handle as a parent, and I agree. I will do whatever I can and have learned a lot from our therapists, but she needs a lot of therapy that Infants and Toddlers just can't provide because of the parent-training model.  There is a likelihood that she will go to kki for intensive therapy to gain back some of the skills she lost.  We won't know how long or whether she will be inpatient until the eval is Done.  I'm hoping for outpatient so that she can stay at rmh.  That's therapy in itself!

I was fairly frustrated with the surgeon, who has minimized my concerns and is telling me she is fine.  He thinks she's just tired and drugged up, except that she has come home on more meds than this and has NEVER had any issues like this.  He actually commented that she's not having apnea, so he calls this a success.  I disagree and have told him as much!  I let him know that I don't feel like he is listening to me and that this is not the child I came in with. (I was, of course, crying by this time!)  His reply was that he's not here to cry with me--he's here to operate on my kid.  

Yes, seriously.

However, he did write the order for the kki eval...whether it was to shut me up or whatever, I'm happy about that.  The bedside manner needs some work!

Chances are, we will not be coming home on Tuesday as planned.  If we move to kki, it probably will take a few days for insurance and paperwork to go through.  I'm hoping we are all under the same roof by Thanksgiving, but we are just taking it one day at a time.

For now, I plan to spend as much time as possible doing purposeful play with my girl so that we can gain back some skills.  And I'll be praying all the while that Abs wakes up and comes back to me.

Thursday, November 13, 2014

I Want My Girl Back

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 little while ago.  I just keep looking at old pictures and videos on my phone of what Abby was...and just praying we get her back....

Please pray for her and for us.  She is so brave and is working so hard.  I just want my girl back!

Wednesday, November 12, 2014

Movin' on Up!

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, but she is starting to communicate.  There is no chance she's going to try to talk right now!  Strangely, she isn't swallowing at all and is drooling to the point that she needs a bib.  Plastics is coming "soon" (hospital time!) to check that out.  

As soon as they do, we are headed to the floor!  Everything is packed up and ready to go.  Now that her vomiting has stopped, we feel comfortable with going. I am definitely ready for a little more autonomy, movement, and sleep on the floor! :). They also have nicer playrooms because kids are out of bed more.

We are SO thankful to the PICU staff for their wonderful care!  They have been phenomenal--everyone from the nurses to the critical care doctors to the pain team to the nurse practice antes to the desk staff!  We are so grateful to them and brought a yummy Whole Foods lunch for everybody today to show our appreciation.  They seemed very excited! :)

Tuesday, November 11, 2014

No News is the Same News...

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 stared listlessly into space and looked pitiful.  Her hands shake and flap constantly, she sweats like crazy, and she shakes like she is freezing.  Withdrawal is so difficult!!  She barely slept at all, and when she did doze off for about 20 minutes, she woke up to get sick. :(. It is so hard to see her like this!  I want my Abby back!

Tonight, I dragged myself away from the hospital to sleep at Rmh for the night.  It isn't easy to leave my girl, but I have to take care of myself in order to be the caretaker she needs. Plus, Matt will take good care of her tonight!

No changes

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.

Long night

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.


Monday, November 10, 2014

Improvements!

Abby spent most of the afternoon sleeping or crying as the sedation wore off and she became more aware of her pain. 


 But this evening, she started becoming more alert, watched a little of Annie on the iPad, and even sat up a bit!



Her face is still pretty swollen, so it's hard for her to open her eyes very wide.  But she's perking up!  She enjoying skyping tonight and I'm hoping to get her out of bed tomorrow. 

Her oxygen levels have been great and she's no longer needing any!  They did a blood gas to test CO2 levels and they were perfect!  Yay!!

Sadly, she got sick a little while ago and her stomach really hurts from all the meds and because she was still for so long. They're going to do some mean things to get things <ahem> going in a little while.  This one is a new experience for us, so it should be...uh....fun?

All in all, though, this was a great day!  We are praising God for how well she has done.  SO thankful!!


It's out!!!



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!!!!

Just Went Back

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!

Sunday, November 9, 2014

Family Time


Today was a good day!!  For an hour at least, I had my whole family in one room. 

And all was right with the world!

I loved my time with Caleb, short as it was.  He is such a great kid!  As usual, he had tons of questions but wasn't the least bit concerned about Abby's tubes.  He just saw his sister!  I love that about him.

Matt is here for a few days because Abby's extubation is scheduled for first thing tomorrow.  They will be coming to take her to the OR at 6:30.  If all goes well, she should be tube-free by 8! 

Please pray that extubation goes smoothly, Abby's CO2 levels stay low, and her oxygen levels stay high!  We are looking forward to being able to see our pretty girl's eyes and give her some hugs!

And I quote...

"Her X-ray looks gorgeous today!  Her left side has really opened up!"  

I'm praising God for this good news I heard during rounds this morning!!  

Today is weaning day as they get her ready for extubation tomorrow. Here's hoping she doesn't try to pull a fast one on anyone today!

Saturday, November 8, 2014

Late Night Update

Abby's CO2 levels have stabilized.  Thanks for your prayers--they are working!!  They still aren't where they should be, but they are better.  The doctors have ruled out several things and now believe it is a side effect of some of the medicines she is on.  They are hopeful that all of that will even out once the sedation is off and the tube is gone.

Her left lung is still not as full as they would like it to be, but she tolerated a lot of chest therapy today and has been positioned so that the lung can expand well, so hopefully that will help.  X-rays are taken at 4 a.m. (Oh yay!!), so we should find out tomorrow morning.  

Again, thank you for all of your prayers and support.  It encourages me so much to read your notes.  Thank you all SO much for loving our family!!!!

I am SO looking forward to having all of my little family in the same spot tomorrow.  We have missed the boys! Caleb won't get to see Abby, but at least I can spend a little time with him.  And then Matt will be up here for a few days....I am really looking forward to having him here!  

Never discount how tough a hospitalization can be on a family.  It's not easy.  While we all know our roles and how important each one is, no one is truly happy until everyone is together again!

Prayer Request

Abby's carbon dioxide levels are very high, and her left lung is diminished and not moving very much air.  Respiratory worked with her pretty much throughout the night, but there hasn't been much success.  

She got another chest X-ray done this morning and the doctors are taking a look and discussing her now. They may move the tube back again like they did yesterday to see if that helps.  They will also most likely be going up on her vent settings. 

This is all too familiar...I'm having flashbacks to the nicu! 

So our specific prayer requests today are for her CO2 levels to decrease and for her left lung to start working better!  

On a positive note, take a look at my girl! Her swelling has significantly decreased since yesterday!


Thanks for praying for Abby!

Friday, November 7, 2014

Abby Loves Attention

Am I allowed to call Abby a Drama Queen?  I think I can.  I just did, cuz she is!

Thankfully, today wasn't nearly as eventful as yesterday.  But Abby is still finding ways to show off.  Today, she was enjoying having low oxygen levels and high carbon dioxide levels.  She took turns between those alarms.  The team decided to change some of her vent settings, give her a significant increase in medication, and pull her breathing tube out a tiny bit because they felt it was too far down.  
Obviously, any movement of the tube concerned me!  It was all very structured though, and everything went fine.  

I have to say that I am very, very impressed with how seriously the team is taking Abby's airway.  Today during rounds, the attending doctor went over Abby's emergency protocol with the team. They discussed what they would do if the tube came out, then she quizzed various staff members. (There were residents, nurses, nurse practicianers, fellows, and a pharmacist in the rounding team).  Then, before they moved the tube, the doctor reviewed the emergency protocol with everyone again.  It made me feel very safe and secure!  Thankfully, no emergency protocols were needed today!

We had our same fabulous nurse as yesterday, so I felt like it was safe to go down to the cafeteria for a few minutes to get lunch after rounds were over.  It was nice to take a break for a few minutes, but I didn't stay long.  

The jury is still out about the night nurse.  He seems to think he knows all about Abby and has given wrong information several times.  I don't think I'll be sleeping much tonight either...

Thank you for all of your prayers and sweet comments about Abby.  I have loved looking at all of the purple pictures and reading everybody's encouraging posts.  We are hanging in there!

Thursday, November 6, 2014

Decorations

I thought Abby's room looked a little dreary.  Time to decorate it!

Abby's Grammy made this banner for her after her last surgery. Everybody needs to know her name!


I made this little sign using materials from the playroom to hang outside her door, along with a picture of the "real" Abby!

Abby's cousins drew her some pictures! :)

Making sure everybody knows what we stand for!



Thankful

To say that Abby had a difficult day today would be an understatement.  She is severely agitated, which has resulted in a lot of thrashing around.  The team hasn't quite figured out the proper cocktail she needs in order to keep her asleep, so right now she's just really anxious.

The day got a whole lot worse around 2:45 when Abby's oxygen levels suddenly started to drop rapidly.  I had just called the nurse a few minutes before because she was so agitated and I was hoping she could get some more medicine.  

When the nurse came in, Abby started having a lot of junk in her mouth and seemed to need suctioning. Her oxygen levels started to dip a little bit, but then the nurse couldn't get the suction tube to go down her breathing tube.  All of the sudden, her oxygen levels dropped from the high 80s to the 50s.  The nurse calmly asked for the lights to be turned on and to get the Ambu (emergency) bag.  

My mom was in the room, so I quietly asked her to step out...I had a feeling I knew what was coming.  The nurse started bagging her, but Abby went from the 50s very quickly to 26 and was blue.  Then the "no breath detected" sign started flashing.
  
The nurse pushed the button for help, and I was amazed at how quickly help came!  I stepped out of the room to allow the 15 or so people in there to do their jobs.  Mom and I watched and cried from the hallway.  

It was surreal.

I honestly don't really remember feeling anything.  I just watched with tear-filled eyes as I witnessed so many people working on my little girl.  

Long story short, there was a kink in the breathing tube.  The kind of intubation Abby has to have because of her airway can cause this kind of problem.  They believe that Abby's thrashing around probably caused it.  Since she is relying on the ventilator right now for all of her breaths, the kink caused her to stop breathing.

After everyone cleared out, I sent my mom out to my dad and aunt, who were waiting in the lobby without any idea of what just happened.  

I'd been pretty calm and basically holding it in, minus a few tears.  But when that room emptied and Abby and I were alone, I lost it.  

After another substantial desat this evening for an unknown reason (this time she only needed six people!), the doctors have decided to be "generous" with her medicines so that she can really be still and calm.  She's on a lot of oxygen, her chest xrays have been examined and seem fine, and she is currently sleeping.

I am thankful tonight...thankful for our quick-thinking nurse...thankful for her calmness...thankful for the team that ran to assist...thankful for my parents and aunt being here so that I didn't have to face that alone...thankful for God's protection on Abby's life...thankful that I can still kiss my sweet girl's head and squeeze her hand...just thankful.

The nurse scolded her for her antics and told her that she wouldn't get to sleep with the lights off until she learned to behave!  She has also earned herself her own personal nurse who will stay in her room tonight.  This is our same awesome nurse from last night who spent a lot of time calming Abby with me, so I know we are in good hands.

Where will I be?  In a chair right by her bed, keeping vigil.



Hug your kiddos tonight.  I can't hug either of mine right now, but I made sure they both know how much I love them!

Thank you SO much for all of your prayers, and I ask that you continue to pray for her as she faces this next week.  Let's hope the rest of it is far more boring!

An easy way to help!

If you "like" their page on Facebook, The Saavy investor will donate $5 to the Baltimore RMH!  How easy is that?!?!  3 likes pay for a family to stay at the house for a night.  21 likes allow parents to be close to their child during a difficult time for a week.  

It's so simple, but it means so much.  Please click the link to like the company!

Sassy

Update:  scratch that.  She is still moving around and I've traded in the couch for a chair next to her bed.  I guess I'm done sleeping.  You win, Abs!  :)



My crazy girl is showing her sassiness any way she can!  Despite her heavy sedatives and paralytic, Abby started waking up and moving around at about 1:00 am. She would calm down when I put my hand on her head, but would start right up again if I took it off.  She loves attention!  Lol!

The doctor went up on her sedative, but she started waking up even more--to the point where we had to hold the breathing tube in! Then the doctor went up on her paralytic AND her sedation meds (again). She finally calmed down once those drugs took effect. 

My girl can show off her personality even when she's supposed to be in a coma!  Sassy, I tell ya!  Love it!!

Wednesday, November 5, 2014

My Beautiful Girl

Abby actually looks a lot better than we expected.  It's still hard to see her hooked up to so many machines, but she is at least still looking like herself!


The jaw screws are really tiny!


Just a few medicines...


Really, though, I think she looks good.  Let's hope for a very boring week with NO excitement (excitement in the hospital is almost always bad!). Thank you all again for all of your prayers and well-wishes.  It means so much!



Surgery update: 6:00

Abby is done!  Everything went smoothly and our surgeon was really pleased with everything.  Now we just hang out until Sleeping Beauty is awoken!  They will attempt to extubate in the OR on Monday morning.  

We are waiting now to see her.  Thank you SO much for all of your prayers, #purpleforabby pictures, and love!  We have one loved little girl!

Surgery Update: 4:00

Our Ent just came to visit.  He said intubation was perfect doing it our special way.  Her right ear looked good, even though that was the one that multiple doctors thought was sideways.  The left ear has a sizable hole in it, which will probably need to be fixed in the future.  He's really not sure why she's having such hearing and speech issues, based on what he saw.  So...he will test her hearing in December and go from there.  

He went back to check and see how the jaw was going.  She should be done fairly soon.

Surgery Update: 3:00

We just got an update that they are done with the g-tube and ears.  Now they are working on the jaw.  She is stable and doing fine. Thank you for your prayers!!

Surgery update: 1:00

Abby just went back. Surgery started a bit later than we expected, but she is asleep now. As usual, she cried when they put the mask on her, but I was allowed to hold her while they did it.  We sang our usual "You Are My Sunshine" and she went to sleep.  Now we are out in the waiting room for the next 4 hours or so.  I will update as we hear how the surgery is progressing!

Pre-op




We have been here since 10 and have met with the anesthesia team. Now, Abby and I are hanging out in the playroom! :)