Life as a Leach

We got home late Thursday night (sorry to those of you who aren't on Facebook and didn't know that!  I'm terrible about posting here after we get home and things are crazy.)  Abby has had a relatively good couple of days, although today her respiratory rate was a bit higher.  We are trying a different technique with her vent to see how her body reacts to it.  It's called a "Sip and Puff," and no it is not illegal activity!  Basically, it's a concentrated bipap setting that gives more pressure for a shorter amount of time.  The idea is that once she gets used to this, she may be able to do this instead of spending hours on the bipap every day.  She can just "sip and puff" for 10 minutes or so as she needs it.  She is adjusting to it pretty well, but it requires you to only breathe through your mouth and that's pretty weird for anyone.  For right now, we are doing the sip and puff in between treatments and still doing the longer times on regula...

There's no way to sugar-coat this.  Abby is in respiratory failure.  Her health has declined over the last few months to the point that her tiny lungs can no longer sustain her.  None of the "bandaids" they have tried have done much, including oxygen.  See, it's not an oxygenation issue....it's that her lungs are more or less deflated.  Giving her oxygen doesn't really help that. They're using it to get her levels up a little higher when she is sitting, but it doesn't seem to be helping at all when she is walking.  We haven't even attempted stairs yet. We have had lots of serious conversations with our team here and at CHOP.  Their dedication and sensitivity in all of this has proven to us once again just how blessed we are to have two fantastic teams working with Abby.  Because our plan hasn't been finalized yet and seems to change every time someone walks through the door, we aren't quite ready to share publicly.  Once there is a solid pl...

Well, we're still here.  Abby had a great night and I was very encouraged.  But then she had high rates throughout the day, including a respiratory rate of 95 after walking just halfway around the unit.  We are going to try stairs tomorrow to see what she does with that.   But they can't figure out any rhyme or reason to her high RRs, as they sometimes happen when she is hustling lying in bed.  The one pattern we have identified is that she does better right after a respiratory treatment, but that is to be expected.  I can't limit any movement to only immediately after treatments!!   I'm hoping for answers tomorrow...and to see our pulmonologist. 

So, the good news is that Abby came home today!  Discharge actually happened pretty quickly and what we ended up waiting on was the lunch that we had dalready ordered and the respiratory treatments she was due to get at 12.  As soon as they were over, we headed out!  Caleb was surprised and thrilled that we were home (we never tell him unless we are certain because we don't want him to be disappointed if something changes), and the kids happily played together before dinner.  Then they had a puppy visit! Unfortunately, the bad news is that the doctors don't really know why the very high respiratory rates are happening.  They were able to rule out viruses and high CO2 levels, but they weren't able to pinpoint the cause.  The pulmonologist we saw used the dreaded words, "Progression of Disease."  I seriously almost hear "dun dun DUN!" music each time it is said because it's such an ominous phrase.  It is certainly not something the parent of a med...

Despite having limited resources, Abby and I were able to get quite a bit of school in today!  I got creative and used what I had, including writing on paper towels!   We did some good work with fractions and discovered that the cabinets in her room can be written on with dry erase markers!  Sweet!   She also did some online work on the iPad, much to her dismay.  That's not her favorite, but she did finally do it. Abs' respiratory rate is still pretty high in general, but they have ruled a lot of things out.  Unfortunately, we still don't know what is causing it.  I was able to convince them to let me get her up and moving a bit to see how she did, which was telling.  We will see what they say tomorrow.   Matt and Caleb came up to visit tonight, which Abby loved.  They both happily played Wii with another boy in the playroom.   The visits are never long enough, but we are hoping to be able to be home soon. 

I brought Abby to the Hopkins ER this evening at the request of her pulmonologist.  I called her this morning to fill her in on the weekend and to tell her it was continuing.  Then, I let her know that even on bipap, her respiratory rate is still very high, which was new to us.  Usually, bipap does the trick.   She told us to come here, so here we are.  Hopkins has great expedited ER time when the doctor calls ahead for you, so we went almost immediately to a room, and then she got a chest X-ray shortly after.   The X-ray showed that the Right lung is diminished, which isn't surprising.  "Noticeable deformity of spine and ribs."  Oh my gosh!  Seriously?  We had no idea! 🤣. That one made me chuckle.  I really hope the radiologist didn't think that was new information for us! An IV was finally put in on the 3rd try and her blood gas (CO2 level) was good, so that was reassuring.  But her respiratory rates and heart rate are still...

We went into this pulmonology appointment today so nervous and anxious about what would be discussed.  As you all know, Abby's respiratory status has really declined with no indication that it is going to improve.  It's more obvious to us every day that the rib-to-rib VEPTR is the key to Abby's lung volumes improving, but that won't be able to be done for quite some time because her body has to heal from the trauma of the last year.  We discussed that today with our pulmonologist and she is hoping that she can provide support to Abby as a bridge until the rib-to-rib VEPTR is able to be put back in--whenever that may be. The question is, how much support is Abby going to need?  She's needing additional bipap during the day now and seems to decline after every surgery...and she has another one next week.  What will she be like after that?  The bottom line is that we aren't sure how much more her little body can take, or how long she can continue with such l...

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.

Tomorrow afternoon, Abby and I will be heading to our home away from home--RMH!  She has a pre-op appointment at 8:00 a.m. on Monday, followed by a long audiology appointment to get her hearing aid molds done and get some training on the hearing aids.  I'm happy that Abby will have a little time to enjoy RMH after appointments! Matt will come up Monday evening after taking Caleb to my parents' house.  Then, Abby's surgery to remove the hardware in her jaw will be bright and early on Tuesday morning.  The surgeon is being very noncommital about this hospital stay, based on Abby's shenanigans the last time!  We are hoping that it will only be a few days on a regular floor with no PICU stay, but who knows with Abby! During this surgery, the anesthesiologists will scope Abby to determine her airway status.  We are hopeful that she will go from a 4+ airway (no visibility and extremely difficult) to a 2 (partial visibility and mildly-moderately difficult). ...

I've determined that Abby's pancreas is a drama queen, just like her.  As I've mentioned, Abby had what we thought was the stomach bug. When she just kept throwing up everything (even 6 hours after drinking it) with absolutely no other symptoms (she's a wild child!), we thought there might be more to it.  Our GI said to keep in touch if it didn't get better, so I sent her an email over the weekend.  She ordered blood work, which came back today as elevated liver functioning.  Of the two enzymes that point directly to pancreatitis, one is actually below normal and the other is a slow test that hasn't come back yet.  So... Abby's going to have an ultrasound tomorrow to check for gall stones.  Tonight, I put her on just pedialyte.  I started at a very slow rate and am increasing by 5 ml/hour each hour until I get to 50 ml/hour.  (It's gonna be a long night!)  If she doesn't tolerate that, then we are to head to the ER in the morning with the e...

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!

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...