Tonight’s scare

We had a very emotional scare with Hannah tonight.

It was only minutes after we had put Ethan and Abby to bed.  I had noticed Hannah waking up, so I went to grab her from her bed for some cuddle time.  The weird thing was she was really stiff in her lower body, something we hadn’t seen in many months (before hospice).

As soon as I sat down with her on the couch, her breathing started getting very erratic, very shallow.  Her legs started having these tremors or shaking spells which we had never seen before.  They were strong too.  I couldn’t even bend her legs during them.

Then the worst part came.  She started struggling in her breathing.   Her feet were freezing, and she was wearing socks.  Her stomach was also very hard, which was very unusual because she had an enema a few hours early and got rid of everything and then some.

Daddy and I got very nervous.  We called our hospice coordinator, and she had us give Hannah a dose of a med we no longer use, and fortunately that seemed to help knock out the tremors and get Hannah back to sleep.   But her breathing remained really scary.

Daddy and I thought that this was “the end.”   As I was sitting there crying and cradling Hannah, I realized that no matter how strong I say I am about “Hannah’s plan” and everything, I am just not ready to let her go.  I’m just not.

I even had second thoughts about not putting her on the vent.  She clearly needed to be on a vent at that point.   Daddy and I talked about it, and we both had our moments.  But even though I want to keep her around as long as possible, it just isn’t fair to her to have to go through all of this.  To be vented, to have her body manipulated even longer just so I could have more time with her…I just can’t be that selfish.  I want to be, I do.

After a really tough 2-1/2 hours, Hannah still was breathing really shallow, and she was very apneic.  Every time she would have an apnea spell that lasted more than 10 seconds of not breathing, I kept thinking, “is this it?  Is it going to happen tonight?  Are we going to lose her tonight?”   I must have rubbed on her chest a few dozen times just to get her to start breathing again.

Daddy and I were both exhausted because those previous couple of hours brought out a lot of tears and tough discussions, nothing we hadn’t had before really, but when it seemed like we could lose her at any minute… well, they are just harder conversations and more real.   When it comes down to it, we are both really, really scared for “that moment” to actually happen.

Daddy, completely exhausted and having to work tomorrow, went to sleep around 11:30 pm, and I ended up putting Hannah into her bed so we could hook her up to the oxygen and humidifier.   I crawled into bed right next to her, held her hand, and just laid there crying next to her.

I must have fallen asleep in bed with her because I woke up an hour later.  Her breathing was back to the way it was earlier in the day, before that episode last night.  Her stomach was nice and soft, her feet were warm, and her muscles were not stiff anymore.

It is now 3 am.  She has been back to her ‘pre-scare’ state now for over 2 hours now.

I am so not ready to lose her.  But gosh, to see her in so much distress … ugh…


  1. Praying…

  2. Praying for peace for everyone.

  3. theresa sweeny says:

    …I pray for Hannah to feel no pain through all of this and to only feel your love, and for you and Robert to be strong, which must be so hard. **Hugs to all of you** Carrie, you have reached out to me with support, if you need anything, ANYTHING, please call me. I will pm you my new number. I am up pretty late too

  4. Carolyn says:

    I, too, am keeping you in prayer. It seems that little Hannah’s fragile body has had a whole lot of life surging through it! And she’s has lots to live for–a wonderful family who has loved her so very, very much.

    Carolyn (in Las Vegas)

  5. Raelynne says:

    praying always for all! Love to all of you.

  6. Tevin Drosky says:

    My mom set me this page marsha! I watch the video and fell so bad for your family. She is a precious little girl I hope the best for her. I will keep her in my heart and prayers that she gets better. I will hug and hold my children close and hard because you never know with your own children. THe best for you. Kiss and hugs to little miss hannah. Thanks for the wonderful website and videos of your family.

  7. Nana Waggs says:

    Praying that the Lord will hold you each in His arms through this time. Hospice sounds wonderful to be there when you need them and give Hannah comfort.


  8. Carrie — Sounds like a significant seizure — especially the leg straightening. What you describe is what I felt the first time I called 911. Have you considered a seizure med??? Or changing up her seizure meds if she is one one/more of them? Just a thought but is really sounds like a seizure — we have so many of these we’re “used to them now.” Very scary…but sadly, it’s true.

  9. My family and I are continuing to pray for Hannah, and for you Carrie, and the rest of your beautiful family.