Life as a Leach

Abby had a pulmonary appointment today, and it was awesome! I shared all of the pulmonary data we collect each day, and showed her how her high respiratory rates are trending down.  Abby also did another Pulmonary Functioning Test.  For the first time in a year, she was actually able to do the entire test without getting too exhausted to finish!  Her lung volumes have increased to 30%, which is amazing!  (It's all relative, but 30>15!!)  After discussing with her pulmonologist, we decided that we could cut the morning bipap time and also reduce the amount of saline nebs we do per day.  This gives us SO much more freedom and makes her respiratory treatments so much quicker!! Our pulmonologist was just ecstatic about how much better Abby was doing!  We are so thankful! The icing on the cake was that Abby's blood draw was super quick and on the first try.  We were in and out in 5 minutes!  Side note:  A year ago today, Abby cam...

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...

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 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.  

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. 

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 ...

The questions are written, the pulmonary data is collected, and the CHOP records are in a stack.  Physically, we are ready for tomorrow's pulmonary appointment. Emotionally, we are a wreck.  Tomorrow will hopefully answer a lot of questions, but it could also involve some really difficult conversations.  We are anxious. Thankfully, today was full of visitors and fun! This morning, Abby's teacher and assistant came for a tea party and they even brought a craft!   We all made very fancy hats--even Caleb!  Later, her friend Facetimed her from Sweet Frog to get her order, then delivered!  They had a great time playing and I got to spend some time catching up with my friend (her mom)!   Abby's appointment is at 12 tomorrow.  Please join us in praying for lots of answered questions and positive news.