Status quo

Just a quick update to say that not much has changed. No new seizures. Some good days and some very bad days. Today, she seemed ill. Not just pain and nausea, although they were there, but just felt worse.

Her central line and g-tube sites were each a little red, leading me to question some sort of infection somewhere. Her white count was 3.8 Monday, which is up a little for her.

We still struggle each day with what to do with Abby. As soon as we think we know, she does something different. Last week, she was so sick that I thought surely we should let the poor girl go. This week she's been perkier and has such a strong will to live that we think surely she'll hang on. Then today she was concerning again.

Our hospice nurse says this is very typical with children, and their parents. Kids have good days and mom and dad think they'll be alright. They have bad days and we think it's the end. Truthfully, it is what it is. No words can express what it's like to go through this minute to minute. Every day is hard, and each day we are thankful to be living it.

Sometimes I lay her down at night and press my face as close to hers as possible. Cheek to cheek, I hold her and feel her warm skin and listen to her breathe, and know that in that tight, sweet space, God lives. He is there, holding us both. He loves Abby, and I have another day to say I trust Him with her.

A good day

Abby had a very good day for her. She was exhausted, and looked pretty bad to us, but she didn't seem to feel so bad. She definitely had pain, but not as severe as Thursday.

I took her off all of her medicine except her main nausea and pain medicine. I thought I might have seen a pattern of seizures after I gave a particular medicine, so I backed off. I decided I could always add them back, but maybe she was having some strange drug reaction.

It's too soon to know if any of the medicines made a difference. Two days now, she hasn't had any seizures, so they were a good 2 days. I am so very thankful for that! It's a little scary, and I held my breath most of the day, because I haven't seen her like that in a while. I'm not sure what's happening, and I might be dealing with bad days better than the good.

Good days hold the unknown. What might be coming lurks. Bad days, well at least I know what to be concerned about. She is obviously struggling, and very sick, but she's also rallying some. She is the strongest person I will ever know.

~Abby and daddy cuddling


~-playing with Sarah, still her favorite!


~Abby and me, I'm not sure which one of us has darker circles under her eyes


~Emily, Hannah, and Jeff hanging out



I guess we will just wait to see what our little girl does this week. :/

Emily is doing better, and though Hannah and Sarah are bored out of their minds from being home all the time, they are doing well too!

Ugh

Abby had another seizure today (yesterday). The kids path nurse was here when it started. We gave emergency seizure meds and it stopped after 6 minutes. The rest of the day was a mix of pain and nausea.

We are holding off on starting seizure meds because she would have to go in the hospital until her levels were therapeutic. We do not want to spend the time we have left that way, so I continue to pray she wouldn't have more.

I'm just about to put my girl to bed.

That was my last sentence before Abby's next 7 minute seizure. She had a long post seizure period with what we believe included a very long partial complex seizure. It began at 9:50pm,she didn't actually fall asleep until 1:30am.

I'm not sure what we are going to do. I know we can't live with these huge, horrible seizures. This is the last thing we want for her at this point.

I dread facing this day. She might very well end up in the hospital today. She can't live on diastat, so we have to figure something out.

I think I should definitely get a second cup of coffee today :/

Home, again

Abby came home yesterday afternoon. The heaviness Jeff and I feel each time she comes home is almost overwhelming. I can't believe it's possible for her to be even sicker than before,but she is.

Because of all the other meds she's on, we couldn't start any seizure medicines. We also moved most of her other meds to IV forms. We do have emergency seizure meds, but this is very scary. We are all on pins and needles because we don't know what caused them.

The last two days she has been in a significant amount of pain. When it comes, she's almost panicking. She holds her breath and throws herself back. Its very scary for me because it almost looks like a seizure. But we tell her to breath and she relaxes.

I know there is a reason for us to be here in this place. There is a reason God is allowing us to experience this in this way. I would be lying if I said I didn't hate it. Seeing her in pain and sick everyday makes our original decision to stop easy. Seeing Abby, my daughter, squeal with happiness when the doctor said she could go home, and laugh when her grandparents come in the room, and smile her big Abby smile when she sees her sisters again makes it all feel impossible.

I want to do what's best for her more than anything. It just feels like letting go of all of those sweet moments with her is more than I can do. I keep waiting for strength that is not my own to fill in, but most of the time I feel weak and scared. I always thought I would be able to let go when the time came, but it is so much harder than I could have ever imagined. Even when we wrote the DNR, I envisioned her being at home and peaceful with us. But that DNR is still in place at the hospital, and it scares me, because there, I only want to treat her. The last day we were there, I had that moment when I knew if she stopped breathing, I would pick her up and rock her the way I always have. I had a single day I felt like I could let go.

Then I brought her home, and saw her here with her sisters, and again, only wanted to hold on. She seems so fragile, and over and over we are told how sick she is, but then she's lying in her own bed sleeping, and again I can't imagine her not being there.

I just keep praying for her and over her. Praying she would know peace. I tell her about heaven each day. "you are one lucky girl Abby, you are going on a wonderful trip, and you are going to WALK there all by yourself. You will see Jesus, and all the people who love you that are already there. You are our forever child, and we will be right behind you".

I absolutely believe every word of it, so why is this so hard?

Abby popping her head up to say "good morning!"



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