Life as a Leach

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...

Abby was in a good mood for the majority of the day! We played with some new friends in the play room, went to the library and read books, visited the atrium, and perished the gift shop.  She also spent a good amount of time doing math and reading practice on this program called IXL.  There's an app for my iPad, so it makes doing the skills very easy.  She enjoys it and earns virtual keychains for mastered skills.  A little extra practice never hurt anyone! :) The plan is for Abby to go home on Monday after the wound vac is removed! She has had no additional respiratory concerns, so that shouldn't hold us up this time.   We are still actively trying to see our surgeons to discuss the long-term plan for Abby's chest wall, but it's proving to be more difficult than it really should be. We will be staying in Philly until we can see them! We simply have to have a plan for her. Her lungs can't take not putting the VEPTR back in.  Please pray that this meeting wi...

The skin graft is in!  He said the wound looks a whole lot better than it did 2 weeks ago and he thinks waiting was a good decision.  Now we are praying for the graft to take!  She will have a wound vac for 5 days and then we will see how it looks.  We should know by then if it is going to take. So, step 1 is done!  We are waiting to see her.

Abby just went back.  Our surgeon is hopeful because he things the site looks good....so we are going with lucky #30!  🙏🏻 We aren't sure if she will go to the picu or the floor.  They have a bed reserved on both. 

We made it to our hotel at around 5 after having to call 4 different hotels before finding one that had a room. This is most definitely one of the hardest parts about not getting into the Ronald McDonald House.  They don't make it a simple process, that's for sure. But we are here, and the hotel is really nice and in an area with lots of restaurants.  We ate at a really good burger place (says the vegetarian!) with all natural, hormone-free foods and a great meat-free selection.   Our hotel is right across from Reading Terminal Market.  Abby doesn't have to be at the hospital until 11 tomorrow, so we plan to explore the market for a little while.  It's kind of fun to be in an area of Philly we haven't really visited before. As always, Abby loves to see all of the #purpleforabby pictures!  Tag me in it or post it to my wall so I can show her.  Thanks for all of your support!  We are seriously hoping that surgery #30 will be the LAST one for a while...

It's hard to write an update, but I'll try.  Abby is pretty much the same.  She gets worn out really easily, can't go outside in the heat, and her oxygen levels go down when she walks up the stairs.  She is getting nebulizer treatments and is doing the cough assist 4x a day, she gets wound care 3x a day, sometimes needs bipap,  and then medicines are on a different schedule, so I feel like I'm constantly doing something medical!  We are also keeping lots of documentation of her various numbers and when she needs to go on bipap so that we can prove to the insurance company that she needs a more portable bipap with a battery (the one we have right now doesn't have a battery, so it isn't portable.) I've been in close contact with pulmonology and we have an appointment on Wednesday.   Our pulmonologist doesn't want us taking Abby anywhere except doctors' appointments, so that is what we have done.  She's pretty concerned about Abby's respirator...

No skin graft today.  Her skin was only about 70% ready, and he wants it to be at 100%.  He cleaned out the wound today and put a special material on it to stimulate skin regeneration.  We will come back in 2 1/2-3 weeks for the skin graft and be here for another week or so then. At this point, she can go home when she is ready from a pulmonary standpoint. It's not the news we wanted, but we want the graft to work when he does it.  I haven't told Abby about the additional surgery yet.  I'm sure she will be thrilled.   I'm with her and she's as alert as she has ever been after surgery!  She looks great!

Abby went back at 10:15.  Surgery will be just a few hours, or shorter if he can't do the skin graft.