We have had two years full of "new normals" in our house. With every change things are tough, but eventually it just becomes our new way of life. It is really hard to see that in this new place. I just don't see how this could ever feel normal.
Friday night I had to cath her for the first time. She has had it done so many times, she knows exactly what is happening. I have always hated watching it be done to her- so personally violating- and now I have to be the one doing it. I knew it wouldn't be easy because as much as she does lay down and accept it, she is also very strong and fights back hard.
I had everything out, all the different steps and sterile procedures. I tried for a while without success and realized it was not going to happen. I called in Emily, my emergency backup. Even she had a tough time. Every one's anatomy is unique. It took both of us and all our strength to make it work and we were sweating in the end. It rips my heart out to here her screaming and choking like that. I do not look forward to doing this by myself. Honestly, to do it well and comfort her at all, you would need like eight arms.
I got her settled again. She is resistant to comfort afterward and doesn't want to talk about it. She was finally settled in bed by 10pm and I am happy to say she slept through the night. She was feeling pretty good when she woke up at 10am. She seems to be recovering slowly, but surely. She spent much of the day on her feet. Sitting is uncomfortable and getting up and down is hard. She did the best she could to play with Carter, even if it meant leaning against the window and watching him outside. She was excited to have some visitors today. It helps take her mind off things and give her something to look forward to and that feels somewhat normal. She and Chloe happily painted and played this afternoon. So sweet...
The hardest parts of our day are the procedures- cathing, wound cleaning, cecostomy flushes, bathing, diaper changes, and suppositories- she screams through every one. I hate that we have to do this. Every few hours, there is something else to do. And there is no end in site for several years.
We made it through bath last night and were moving toward bedtime. She had not peed since 4pm and the clock was ticking. She was laying on my bed while I cleaned up the bathroom and she fell asleep. I just couldn't wake her up to do it. I decided to put her to bed and give her until midnight. I checked her every hour and they were dry every time. Finally at midnight, she was wet. I have never been so happy about a wet diaper in my life. So now I can go to bed.
An hour later I was woken up by a little voice next to the bed. She couldn't sleep. My guess was she had a bad dream or was scared, but she wouldn't say. She crawled into bed and cuddled into my arms. I was so happy just to hug her and try to make it better. When she is in the hospital or going through procedures she does not usually want any sort of extra comfort. I was so thankful for that opportunity even for just a moment.
After a while it was obvious she wasn't falling back to sleep. She said she wanted to watch TV, so back to the couch. She was clearly agitated, but satisfied watching Noggin. She kept asking for snacks and drinks, but was still upset about something. She started crying around 4am that her stomach was hurting really bad. I gave her a dose of hydrocodone and we finally went to sleep at 7am. So here it is 11am and we're sleeping.
The good news- some friends have arranged for "Princess Ariel" to come visit and entertain her today! She is very excited. Her friend Claire is also coming to see her. And Mimi and Grandpa are coming in town for a few days. Hoping to brighten her spirits in the midst of all the pain.
A certain attention-loving boy is VERY excited about company...
Friday night I had to cath her for the first time. She has had it done so many times, she knows exactly what is happening. I have always hated watching it be done to her- so personally violating- and now I have to be the one doing it. I knew it wouldn't be easy because as much as she does lay down and accept it, she is also very strong and fights back hard.
I had everything out, all the different steps and sterile procedures. I tried for a while without success and realized it was not going to happen. I called in Emily, my emergency backup. Even she had a tough time. Every one's anatomy is unique. It took both of us and all our strength to make it work and we were sweating in the end. It rips my heart out to here her screaming and choking like that. I do not look forward to doing this by myself. Honestly, to do it well and comfort her at all, you would need like eight arms.
I got her settled again. She is resistant to comfort afterward and doesn't want to talk about it. She was finally settled in bed by 10pm and I am happy to say she slept through the night. She was feeling pretty good when she woke up at 10am. She seems to be recovering slowly, but surely. She spent much of the day on her feet. Sitting is uncomfortable and getting up and down is hard. She did the best she could to play with Carter, even if it meant leaning against the window and watching him outside. She was excited to have some visitors today. It helps take her mind off things and give her something to look forward to and that feels somewhat normal. She and Chloe happily painted and played this afternoon. So sweet...
We made it through bath last night and were moving toward bedtime. She had not peed since 4pm and the clock was ticking. She was laying on my bed while I cleaned up the bathroom and she fell asleep. I just couldn't wake her up to do it. I decided to put her to bed and give her until midnight. I checked her every hour and they were dry every time. Finally at midnight, she was wet. I have never been so happy about a wet diaper in my life. So now I can go to bed.
After a while it was obvious she wasn't falling back to sleep. She said she wanted to watch TV, so back to the couch. She was clearly agitated, but satisfied watching Noggin. She kept asking for snacks and drinks, but was still upset about something. She started crying around 4am that her stomach was hurting really bad. I gave her a dose of hydrocodone and we finally went to sleep at 7am. So here it is 11am and we're sleeping.
The good news- some friends have arranged for "Princess Ariel" to come visit and entertain her today! She is very excited. Her friend Claire is also coming to see her. And Mimi and Grandpa are coming in town for a few days. Hoping to brighten her spirits in the midst of all the pain.
A certain attention-loving boy is VERY excited about company...
1 comment:
My heart is so heavy for yall... I pray that God will give you the strength for each moment. Do not worry about tomorrow; each day has enough worries of its own. Jesus knew we can only handle one day at a time. Praying!
Hannah ;)
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