Life as a Leach

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...

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 me...

 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 sur...

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!

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 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!!!! ...

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!

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 surg...

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 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!!

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!

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!

"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!

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 ...

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!

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 practicianer...

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!

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 aske...

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! https://www.facebook.com/441813502533940/photos/a.520030668045556.1073741828.441813502533940/722756457772975/?type=1

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!!

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!

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!

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.

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!!

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!

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