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 regular bipap. The hope is that this will allow her to be off of the bipap more often though.
A lot of people have asked if we have a plan yet. It's not a clear-cut answer. At this point, the doctors at CHOP have decided that Abby is not strong enough to withstand such a big surgery when they put the VEPTR back in. Because of the scar tissue, it's an even bigger surgery than before. This was disheartening to us because we know how badly she needs this surgery, but we also want her to be safe and strong enough to recover.
It has been determined that Abby needs to have a trach so that she can get the ventilation going straight to her lungs to help her breathe better. Too much of the pressure has been leaking out of the nose and mouth and has a long way to travel to get to her lungs, so she's not getting as much pressure as she should be. A trach is the best solution to get her breathing better. (And yes, we do remember trach life all too well!)
Unfortunately, this is also not a straightforward trach and there's some question as to whether our ENT will be able to put the trach in. Lots of doctors from CHOP and Hopkins need to talk together to discuss the plan of action. It will be a carefully orchestrated procedure with many hands involved, if it happens. Our wonderful pediatrician is helping us to coordinate all of that so that I don't have to be the go-between all of the time.
So while we would like to say that we have a plan, quite a few pieces of the puzzle need to fall into place in order for that to happen. It is an unsettling place to be, and we are anxious. We certainly never thought that we would be praying for a trach, but we would ask that you all would join us in praying for that because it is the best option for Abby at this point.
Sunday, October 8, 2017
Tuesday, October 3, 2017
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 plan in place, we will certainly let everyone know. For now, we truly appreciate your prayers, love, support, purple thoughts, and pet photos!
Abby's body is tired, but she's still so full of life and feistiness. Just today, she told me to "slow my roll" when she thought I was getting ahead of myself in a game and she exclaimed, "I still got it!" When she passed a word list. 🤣😂. If she isn't giving up, neither are we.
My heart is breaking for my girl, but I know that God is in every detail of this.
Sunday, October 1, 2017
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.
Saturday, September 30, 2017
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 more serious discussions.
We would appreciate your prayers that the increased pressure support makes her respiratory rate go down!
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.
Tuesday, September 26, 2017
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!
Wednesday, September 20, 2017
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 medically fragile child ever wants to hear.
So, they sent her home with the caveat that Abby will most likely need increased bipap support, needs to have a swallow study to make sure she isn't aspirating (scheduled for next week), and will have a sleep study in October (previously scheduled) to tweak her settings because she probably isn't being ventilated enough.
It's hard to hear that your child is getting worse and there's not a whole lot they can do about it. We are clinging to Jesus and to the hope that getting the VEPTR put back in will improve her lung functioning. And every day, that wound is even closer to closing!!