Life as a Leach

Yes, I do still have a blog!  I know I’ve been MIA here for a while, but I figured a New Year’s post might be a nice way to get back into it. We had a wonderful Christmas and were thankful to be home.  It is definitely a unique perspective when you spend so much time in hospitals!  Our break has been slower than usual with much less “going,” which is a nice change of pace.  I would be lying if I said that I loved 2017.  It was tough—probably the toughest we have had. Abby spent time in the hospital for 7/12 months for repeated rod infections and a large wound that just wouldn’t close, and losing the rib rod proved to be catastrophic for her.  The rib cage collapsing wreaked havoc on her tiny little lungs, putting her in lung failure.  All of this also had a profound effect on Caleb, who hates when we aren’t all together and worries so much about his sister.  But I learned a lot this year too.  One of the biggest lessons was not to get too com...

We met with Dr. C this morning.  He had had a phone conference with our Ent and pulmonologist at Hopkins last Wednesday.  Together, they decided that putting the VEPTR back in on the right side was the best option.  He checked her wound today and doesn't feel that it is healed enough to do another major surgery.  The incision he will make it any in the same place, but there's always a higher risk of that new skin tearing if it's not fully healed. So....he will do the surgery, but not yet.  We made an appointment for January and he will reevaluate then.  We just need to keep her healthy until then.  We don't have a tentative timeline yet--we will discuss that at the next appointment.   We are thankful that he is now willing to do it--we just wish it was going to be sooner rather than later.  But we will hunker down for the winter and get that back completely healed!

Our little family spent the afternoon doing something fun in Philly for a change!  Today is Abby's 7th birthday, and she has an appointment tomorrow morning at CHOP.  But today was all ours and we came up after church.  We decided to make a trip to the Philadelphia Lego Exploration Center.  It was a lot of fun!

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. 

Abby continued to need bipap off and on today, in addition to her regular scheduled times.  It seems to be about 3 hours after treatments that she starts needing bipap.  But she was in a pretty good mood and loved her visitors!  Matt and Caleb came this afternoon, and then my mom and dad brought Anna and Lucy this evening.  Abby was excited and surprised! Now, she's enjoying Descendants 2 on Disney Channel and getting her treatments.  :) As is typical for the hospital, things don't get done as quickly on the weekends.  Pulm ordered an echocardiogram to check for pulmonary hypertension (always a concern), but only emergency echos are done on the weekend.  They want to talk to CHOP about her thoracic insufficiency, but that can't be done until Monday.   Pulm did increase her pressure support to the highest setting in hopes that putting more air in her lungs will help.  We will hopefully see a difference tonight. If not, there will be many ...

Abby came back to Hopkins last night after talking to pulmonology.  Her respiratory rates have been very high again when doing literally nothing.  She was admitted to the floor.   It was a Rough night. The respiratory rate was 68-70 sustained on bipap, when she is typically in the 20s while sleeping on it.   Heart rate was in 150s.  She was very asleep, but so fast.  When we repositioned her, she woke up and slowed down a little, but then went right back to where she was when she was sleep.  Pulm came in and saw it too.  They called the attending and increased her breathe rate on the vent to 14, but it didn't help. We thought they might send her to the picu.   10 min off bipap this morning and she is 70 laying in bed, so she is back on and getting a treatment.  Hopefully it will be better after that.  They won't let her eat or drink on bipap so I hope her numbers come down so she can eat breakfast.  

Check out this beautiful, CLOSED WOUND!!!! We are so very thankful!  God has been faithful through these awful months.  We are thrilled for some happy news and Abby celebrated by taking her first REAL bath in over 9 months.  🎉 I have already contacted orthopedics to see about a tentative VEPTR reinsertion date!  Onward and upward!

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...

Our CHOP appointments last week were productive.  Her plastic surgeon was thrilled with the progress of her wound.  It should be closed by the end of the month!  We will see him in mid-October and if everything goes well, Abby will be cleared to proceed with the VEPTR reinsertion!! We had some fun at the aquarium after her appointment.  Abby really loved being out and it was the perfect scenario--the place was empty!! She had her MRI the next day and recovered well from that.  We came home Thursday night to a very happy boy and dog! This weekend has been kind of rough, sadly.  Abby's respiratory rates have been very high and her saturation levels have been low...we want them the other way around!  She's been on her bipap a lot this weekend and we have had to stay inside.  Even then, her respiratory rates have been in the 70s.  She has been SO out of breath and has been really frustrated with herself. She is literally gasping for breath while ...

Abby loves to water the flowers with her watering can! We visited the puppies one last time before they go to their new homes.  She is going to miss these dogs!  They have been a bright spot in her summer. Abs hasn't taken a "real" bath since December because of her open wound.  Just think about that for a second....sponge baths and hair washing that takes 2 people for 9 months. Lying down on a bath bench to wash your hair to avoid getting the wound wet for 9 months.  (Well, actually, she had 4 months in the halo when she couldn't bathe or wash her hair at all!!!) Crazy.  This girl LOVES her bath and has so missed playing.  She asked if we could put a little water in the tub tonight so she could walk around in it.  She had the BEST time stomping, sitting on her bath bench kicking her feet, and playing.  💜 Tomorrow morning we head to CHOP for a few days.  Abby has an appointment tomorrow with plastics.  We know he is going to be excited ...

What an awesome day!  The weather was beautiful with low temps and humidity, which meant Abby could be outside!  We took full advantage of this today!  Her cousins were staying here, so they played in the water table, laid out on the hammock, and played with the fairy houses on the deck.   Later, some friends came to visit and we sat on the deck and ate had popsicles and played with light sabers.  There was a lot more hammock time too!  They all had a great time running around. In the late afternoon, we took a rare trip out of the house to our local beach!!  There were only a few families as far as we could see, the weather was gorgeous, and the kids had a great time playing in the sand, collecting shells, and getting their feet wet.  (Getting truly wet is a big no-no for Abby for several reasons, so we just told everyone not to go in any farther than mid-calf.) After a while, sweet Abs was so tired that she laid on the beach blanket!  She ac...

We saw Dr. Campbell this morning.  He took one look at Abby and said, "Well, we've gotta get that VEPTR back in!"  We wholeheartedly agreed!  When we asked about the opposing opinion we had before, he noted that in this case, being old equals having more experience in these situations.  He will talk to the other surgeon to let him know the plan. So what is the plan?  Well first, we have to get this wound healed up.  Nothing surgical can be done until it's closed.  When it is closed, we can schedule surgery.  The good news is that the wound shrunk a centimeter in both length and width in the last week!!!!  This is fantastic news!   The kyphosis still needs to be dealt with, but the ribs (well, the lungs) are the primary concern right now.  We may still go to Boston for the kyphosis, but we are going to take care of this first.   He also LOVED her shirt and took a picture of her to use in a slide for a presentation he is doing fo...

We had a pulmonary appointment yesterday where our Pulmonologist stressed the need for a plan for Abby from CHOP.  She echoed my frustrations from a medical standpoint.  We are really hoping that tomorrow will give us answers, but we have also gotten an appointment for Boston and are pursuing those plans.   We keep detailed data about her oxygen levels, respiratory rates, and necessary interventions.  I took it in to our pulm and she was very happy to have it.  After examining the data and the trends, she decided that it is best for Abby to be on bipap twice a day during the day.  She reiterated the big concern for germs and the danger of her catching even a slight cold.  We have decided that Caleb will change his clothes from school as soon as he walks in the door to hopefully keep those school germs out of our house.   So, as we already knew, no school until there are some big improvements.  Our pulm also helped us to create a plan for Abby...

This week is going to be a busy one around here.  Abby has 2 appointments in Baltimore on Wednesday.  She needs her hearing aid mold redone (it squeals constantly!) and she has a pulmonology appointment.  Not too much has changed with her breathing--she is usually still requiring daytime bipap, and sometimes needs it twice during the day.  There doesn't seem to be a rhyme or reason to it, except that it is always in the afternoon.  We have kept the temperature in our house lower in hopes that heat will not be a factor, but the weather has really been pretty mild anyway.  I don't think our pulmonologist will change much at this appointment, since there really haven't been improvements.  I have a feeling we will just "stay the course" with daytime bipap as needed, respiratory treatments and airway clearance 4x a day, and inhaled steroids 2x a day. On Friday, we have appointments at CHOP with the infectious disease team and our orthopedic team.  Th...

Here's me being wide awake at midnight because I drank too much caffeine today! 😳. I will pay for this tomorrow. Abby's appointment went really well today!  Our surgeon was pleased with the progress of the wound using the wet-to-dry dressings, despite the failed skin graft.  Her wound has shrunk nearly a centimeter since surgery.  He really thinks that this method will be best for Abby, even though it is the longest and slowest of the options.  The curvature of Abby's spine fights everything else he has tried, so this is now our best chance.  It is going to take a while, but it will eventually close.   I can't say enough about our surgeon.  He has been SO diligent and truly cares about Abby. He knows this has been a long road and he is not willing to put Abby through more surgeries without positive outcomes.  His goal is to keep her out of the hospital for a while, and we are hoping that too!  He really is a great guy! So, my theory was prov...

Well, I've been reluctant to say this, but it's official now...Abby's skin graft failed.  We pretty much knew it had just a day or two after getting home, but it fell off completely last night, leaving us with no hope.  She has an appointment on Wednesday at CHOP, so I guess we will see what the next steps are then. We were so hopeful that this would work, so it's a big let down.  We really aren't sure what we will do from here.  We are continuing with bandage changes 3x a day until we see him on Wednesday, but I'm guessing we will eventually try another graft. Abby is also needing bipap much more these days.  Most days, we have to put her on twice a day.  She is still happy and playing, but she is starting to recognize much more than she is having trouble breathing.  Several times, she has asked me to check her breathing because she can't catch her breath.  I'm glad she's becoming more aware of her body, but I wish she weren't needing the bi...

We are on our way home after waiting most of the day for our surgeons to see us.  That didn't happen despite many emails and conversations.  It's frustrating and it feels like they are avoiding us.  We made an outpatient appointment in a few weeks when we already had other appointments scheduled, so now at least they have to see us.   At any rate, we are thankful to go home, armed with new wound care supplies and 2 new respiratory machines.  Here's hoping we will STAY home for a while.  

Today was our last day of hanging out until Abby gets her wound vac out tomorrow.  Matt will be here around lunch time to pick us up! Today, Abby and I went for a walk around the gardens. It was such a beautiful day with low humidity that Abby could finally spend some time outside! Abby was ecstatic to find 21 Kindness Project rocks in the garden!!!  We found one and started hunting until our bag was full!   We brought them back to her room, added some embellishments, and Abby picked out her 3 favorites to keep. A little later, we rehid the rocks all around the outside of the hospital property--and found 3 more Kindness rocks!  It definitely brightened our day and we hope they brighten someone else's!  If you're not familiar with the Kindness Rocks movement, look it up on Facebook!  We have been painting and hiding rocks all summer in our county and it is SO much fun!  Painting rocks is so relaxing and therapeutic.  The kids have really enjoyed it...