Sunday, July 16, 2017

Abby Update

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 respiratory status, considering she averages 65 breaths per minute these days.

Abby doesn't seem to care too much about staying home, but Caleb gets bored.  I'm trying to keep it fun around here while also trying to get some things done during the time we are home.  My mom has been a HUGE help!

Lots of people have brought smiles, either with visits, texts, calls, or sending cards and packages.  We are so thankful!  Yesterday, caleb and I spent some quality time together at a movie and dinner.  It was fun to hang out with just him.

Unfortunately, the special template that was put on Abby's wound to stimulate skin regeneration started coming off of the staples a few days ago.  Despite contacting our surgeon, sending pictures, and doing exactly as he said, it came off completely 2 days ago.  It's disappointing because we wanted this to stay on until surgery to give her wound the best chance.  Our surgeon has us doing wet-to-dry bandage changes 3x a day now, and we are hopeful that this will work.  

This is tough, guys.  It's hard to see Abby like this and she is frustrated with her limitations.  We have a lot of decisions to make, and we are looking to our pulmonologist to give us some guidance on where to go from here.  Please pray for our appointment on Wednesday.


Susan Shaw said...

I am keeping you in my prayers and hoping and praying that Wednesday's apptmt will bring some answers. How old is Caleb?

Anonymous said...

I have always felt that it wasn't what happened to you in life, but it was how you handled it. From your posts, you are carrying a heavy burden and doing it well. I am glad that you made time for Caleb because his childhood is in the balance and needs to be a happy one to be remembered. I am also glad that your Mom is able to help. May God pour down a blessing over you and your precious family each day, so that you can see the hand of the Almighty lifting you, Abby, Caleb, and Matt up. I love in scripture how we are reminded to cast our burdens on Him and also that he is always in the midst of even our most difficult tasks. Thank you, Lord, that you do not leave us alone! Know that you are deeply loved by everyone, especially God, and that you can reach out to them for help.

Sarah Wilson said...

I used to follow your blog - I used to follow a LOT of blogs that I don't anymore - and a story from 2012 just popped up on my FB "On This Day" so I thought I would check in to see how the family was doing. I can't believe it's been 5 years! Abby has grown so much! <3 I'll be praying for you, that you get answers and relief soon. I know I've never met any of you (I don't even remember how I came across your blog in the first place!) but I know that you're an amazing mother and Abby & Caleb are blessed to have you.

Anonymous said...

Julie, my heart goes out to you, abby and your entire family. This journey you are on has been so long. I pray for strength for everyone, physical and emotionally. We dont understand why, but we put Abby in Gods hands. Gods peace and love surround you each day.
Janice Maksim

Erma said...

Julie, you have always been special, and that hasn't changed. You are an amazing mother of two wonderful children. May the Lord give you wisdom and strength as you cast your cares on Him. I pray for you, Abby, and the family, as well as the doctors. Love always, Erma Mishler