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!"



- Posted using BlogPress from my iPad

Doing well

Abby is doing well. We will go home tomorrow and pray that she doesn't have any more seizures.





Her G-J tube fell out Sunday night. We replaced it with a regular old g-tube. That's another option off the table.

A few med changes are being made, but overall, good news. They have no idea about what could have caused Saturday, so we wait and pray it never happens again.

Better

Abby has had a surprisingly good day. She's still weak and obviously has something going on, but it could have been a virus. So far blood cultures are negative.

I am so thankful for this unanticipated good day. Even the doctors are surprised at how well she's doing. Her vital signs are stable, no more seizures, and though the fever was stubborn through the night, today she's been good. If it's bacterial, the antibiotics shes on are doing their job.

She stayed in ICU today in case she had more seizures, but no doubt tomorrow she will move to the regular peds floor.

I am exhausted and confused from the emotional roller coaster I'm on, but thankful for every day that Abby feels well. Maybe even more thankful for this day that I didn't expect. This morning the doctors spoke with us again about the seriousness of Abby's condition, and by the end of the day, they were very happy with her.

With every day that passes I am even more convinced that God is completely in control of Abby's time here. Each time that we think it's over or time to stop, she rebounds with very little intervention. There will be a day when that is not the case, and we will trust Him with her then too.

I never understand people who question their faith and God when things go wrong. When did we start believing that God only exists when we get our way? If a person can't believe and trust God while holding their dying child, then what good is faith ever going to be? If you can't hold it, and let it hold you in your very worst moment, why believe?

God created and loves us. He promises good to those who love Him. He doesn't promise only good will pass through our lives. He says to trust Him, and He will direct the path. In this very difficult valley we are walking through, I believe that is true with every single step.

Therefore, I urge you, brothers and sisters, in view of God's mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will. (Romans 12:1, 2 NIV)

ICU

Not nice letters, to be sure. Not nice to need to be here either.

Did I say we were trying to stay OUT of the hospital? Apparently, I lied.

Abby is in the ICU right now. This morning she slept in late, and Jeff kept checking on her to be sure she was alright. She finally woke around 11 am wretching. As Jeff started to turn her over she had a grand mal seizure that lasted 6 minutes. We called 911 and EMS brought her to the hospital.




She looked awful all day. She wretched horribly, the worst I've seen, for hours. Her heart rate was in the 130s, all the way up to 187. Her head CT was clear. We didn't know if her Neuro status was just worsening. It was very scary.

Then it got scarier. Around 4, she had another massive seizure. This time her sats dropped in the 70s and she got emergency meds. I knew she had to stay at that point, so I left to get some clothes at home. While I was gone she began seizing again. This time it lasted 40 minutes. They started a dilantin drip and brought her to the ICU, mostly so she could have 1:1 nursing.

Once she got settled in her room, we noticed her fingers were totally blue and her hands were mottled. We didn't know why, but it soon became clear. She developed a 102.9 fever. With high fevers, the body naturally protects the core, so extremities shut down.

We don't know exactly what is going on, but she is a very sick little girl. I can easily say that this was the hardest day I've ever had with her. It's very scary to watch her seize like that for so long. The doctor said he is encouraged that they were able to get the seizures stopped with medicine. Sometimes if kids are in neuro shut down, they seize continuously.

I'll update more tomorrow, but she needs lots of prayer now.


- Posted using BlogPress from my iPad

We are...

Holding on to every minute. Loving on our girl as much as we can as we continue to try to keep her comfortable. Most days she is in pain more times than not. It's so hard to watch her go through that. I've been asked more than once why we are continuing. The simple answer is that her life is precious to us.

The time we have with her, holding and talking to her, kissing her sweet face, listening to her voice, matters to us. Every single day there are times when she is completely Abby. Every day there are many hours that we are reminded she is a very sick child. Each one of those days I go to bed asking myself if the time she spent in pain and sick is worth the smiles and family time to her..

I can't answer that. I can only say that we have faith that each day that we spend with her is a day that God preordained for her, and the first day we are not with her will be her first day with Him.



~Abby's sweet hand in mine

We are definitely running out of time, and even as I shed tears each day, peace fills in the empty places already forming in our lives.

Today, I sat with the social worker and began making funeral arrangements. I was doing well until I said "we are going to bury Abigail". I couldn't finish the sentence for a minute. Then I told her about the plot we already picked out on a mountain surrounded by great great grandparents she never knew. Last year, we began to think about what we would want. Now we are trying to plan in detail to make the last days a little easier.

Jeff is taking family leave to spend some time with her. We can't wait to have him with us everyday. It's hard for him to concentrate at work with this going on at home.

This is the hardest thing any parent ever goes through. Our greatest comfort as a family is the belief that our loss is her gain. We know that Abby will be healed and perfect for eternity. We know that we will see her again. Every day I talk to her about heaven and Jesus. I tell her how happy I am for her, and that's true. It's all those left behind to miss her I'm sad for.

Thanks for praying with us. Please keep remembering our precious Abigail Grace and smile BIG at someone for her each day.

No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (Romans 8:37-39 NIV)


- Posted using BlogPress from my iPad

Home

We brought Abby home tonight. The hospital was wonderful with knowing how much we wanted her here and working with us. They put a lot of time and energy into helping us get here.

The antibiotic they decided to use can interact with other meds she's on and cause serious heart arrhythmia's. Of course we hope that doesn't happen. We are really praying for peace in her life, and I don't think that scenario would be very peaceful. There is a long drawn out explanation as to why we chose an antibiotic that could have that reaction, but the bottom line is that it was best. All of her blood counts are way down, so we don't know how she'll do.

Thank God we are home! While we were gone a new nurse started working with Emily. She LOVED her. That is such a blessing. We also came home to a wonderful home cooked meal from a hospice volunteer. Another blessing. Abby woke up a little today too. That was an answer to prayer. All in all, a very blessed day.


- Posted using BlogPress from my iPad

Super quick update

Abby's blood cultures were positive. No surprise, given how she looks, but still not what we wanted to hear. She's growing gram positive rods, not sure what species yet. She's still very tired and her color is plain ole icky.

This was a loooonnnng day filled with hard conversations. What we know is that we will try to get Abby feeling a little better. Even though they would like to pull the line, we're not going to do that. They can treat her and it, but that's all. I can't even say how deeply my heart breaks with thoughts of stopping treatment. I honestly don't know how anyone does this.

Jeff tells me that we will know. We knew it was the right decision to bring her to the hospital. We will know what to do next. We have prayed over this child for 14 years. God loves her, and He is with her.

My mother in law read a story about a woman losing her husband. She said that she made one decision that felt right, and then when it was time for the next, she did what felt right again. And again. Until there were no more. I pray each day that we are able to do that.

Hopefully, tonight we will get some sleep, and tomorrow we may be able to go home on IV antibiotics. We are still praying that we are able to have some quality time with our girl, knowing that as we trusted God with the timing, it may not be what we hoped for. Doors are quietly closing all around us.

Gifts and prayers

I've been trying to write for days, but there is so little time/energy to actually finish a post.

I'll try to condense what's going on.

I want to start with Monday, because it was a gift. Plain and simple. God, in his goodness gave Abby back to us for a few hours. She laughed and played. She didn't seem drugged or in pain. She spoke with a clear, strong Abby voice. I had forgotten her laugh. She's been so sick that we haven't heard it in a long time. It was like a miracle. She was so much like the old Abby, it brings tears to my eyes even now. As the day wore on, our problems returned.

But not for a single second did the return of pain and sleepiness diminish the gift of those happy moments with my daughter. I know that God gave us that refuge and I am thankful. He knew we needed her, even for a little while.

Yesterday was very hard for her. It was one of those days we just made it through. Holding and trying to comfort all day long. Today, she had a GI appointment that we had debated about keeping. We decided to see Dr. Gomaz again, to work on more comfort measures. She didn't feel well at all. She woke up with 100.5 temp and was very pale. She had pain and her belly was a little tight. An x-ray revealed large amounts of contrast from her upper GI 3 weeks ago in her intestines. Nothing is moving through that belly. It was yet another confirmation of severe dysmotility.

All that white is contrast that doesn't belong there.



Although Dr. Gomaz wanted to admit her, we decided to bring her home with a hydration and clean out the contrast plan. Unfortunately, by the time we got home, her temp was 102.8. We thought it could be the central line, so the pediatrician was going to order home IV antibiotics and fluid bolus'. When we got down to it, they realized that the antibiotic could interact with the fentanyl and tramadol she's on, so we had to bring her to the hospital to be monitored while we started antibiotics.

So, here we are. In the place I thought I'd never be again with her. And I'm glad we're here- even weirder. She looks SO bad. She's an icky yellow-gray-pale color. She's barely waking up, no matter what we do. Her heart rate has been up, blood pressure down, and sats all over. I would have been afraid at home with her level of consciousness.

This line of keeping her comfortable without being overly invasive is an awful one to walk. I'm this girls mother and I want to scream FIX IT! But, I'm this girls mother and I owe it to her to acknowledge that it can't be fixed and love her through it. We are doing antibiotics because blood infections would not be a nice way to go. We know this is Abby's last central line, but we still see treating infection as a comfort measure.




This is an extremely difficult time. We are trying to pray our way through it with every single breath. It's a blessing to have family and friends praying along with us. Jeff's mom and step dad have been here for a few weeks loving on Abby. My mom and aunt came last weekend, which was awesome. We know that we are not alone. Thanks to all of you praying each day. Can ya add Emily to that list? She's struggling with seizures and other issues that we don't have time to address, so she could definitely use some prayer time!


- Posted using BlogPress from my iPad

Smile

I think I wasn't clear in my last post about not doing well. I only meant that I dreaded facing Abby in pain each day, not necessarily the day itself. I wanted to say that instead of feeling peaceful and grace-filled, I've been snappy and a little mean. I think it's normal for what we're dealing with, but I want to honor God and my daughter in each day, even if it's not an easy one. I haven't been doing either well.

I'm upset that Abby has had so much pain. We found out yesterday that the nerve block isn't likely to help, so that is probably out. That was a huge disappointment. We are beginning to run out of options.

This situation is hard because we remember Abby before she got sick. That's not easy, but heartbreaking is that she remembers. She still wants to do the things she did before and can't. I'm trying so hard not to miss her while she's still here. She misses how she was, and even though I don't want to, so do I.

Abby is in less pain. I would say about 85% of the time, she's comfortable now. Unfortunately, she is tired and dozing on and off when she isn't in pain. The amount of meds she needs to relieve the pain makes her exhausted. We knew that this would likely happen, but again, disappointing.

Last night, after Abby fell asleep, I took Sarah to see Brave. I haven't left Abby much in the last month (if you saw my hair, you'd know how true that is!), so leaving last night was hard. I know Sarah needed to get out for a bit, but I was afraid to leave Abby. When we were on our way home, I had a knot in my stomach. I realized that one day I will come home and she won't be here. There will be a day when I have to walk back into this house without my daughter.

But not this day. This day, she is here and I have morning meds to do. I have prayer time that I am trying to gear towards gracefulness. There is so much to be thankful for. Abby's strength and spirit continues to amaze me. Jeff and I are so proud of her. She has fought harder than anyone I'll ever meet, and even as she is in pain, she smiles every single day. I don't think she will ever lose that sweet smile. Thank you God for that.

Smile at someone today for Abby.





- Posted using BlogPress from my iPad

?

I think it's only fair to say I am NOT good at this. I am not handling what Abby is going through well. At all. I can't seem to make myself care that there are reasons for everything when my child is in pain. I only want it to stop. I don't care how.

I spoke with the kidspath nurse last night and expressed, yet again, our general distress at Abby's level of pain. We all agree that she is getting heavy duty pain meds and should not be in as much pain as she is. It seems certainly related to her stomach more than the spine at this point. We hear her stomach gurgle and she screams in pain. Usually mornings are ok. She always has pain, but not as severe. Every afternoon is terrible. It almost feels like all the meds are dulling Abby, not her pain.

I dread getting up in the morning. I don't know how to help her. I'm stressed and snappy with Jeff and the girls. I'm not proud of that, just honest. I don't really have time to think about anything. We just keep trying to get through each moment.

Jeff has a few days off, and we hope to spend some quality time with all the girls. Today, the pain team added another Fentanyl patch and a pain med that works slightly differently. She still has Morphine if she needs it too. Her GI Dr. is setting up a consult for a possible celiac plexus nerve block. It would be outpatient through interventional radiology, but likely to provide the most consistent relief. We aren't sure how quickly that could happen, but obviously if it would help, I hope it would be soon.

She seems tired the last few days, which is completely understandable. Her favorite spot is lying directly on me. That's perfectly fine.





I think we are making some progress with her, it's just so slow. She has been home a week today, but it seems like much longer.

I can't say how thankful I am for all of the prayers and support we are receiving. There are cards in the mail everyday, and messages letting us know we are loved. It means everything to have so many wonderful people in our lives. Thanks for standing with us and loving my girl. We love you too <3

Posted using BlogPress from my iPad