I guess after 26 days of watching my helpless beautiful daughter just continue to get thrown worsening curve balls left and right, I finally hit my breaking point today. I just can’t do this by myself anymore. Daddy is flying in on the red-eye tonight to be here with me for a week. I need him.
Hannah’s brain MRI was ordered as a “stat” today at 3:00 pm, Friday afternoon. So come 4:00 pm, the nurse anesthesiologist came to do the paperwork. Apparently, it is very rare to get a “stat” brain MRI done when ordered late on Friday afternoon unless there is an “overwhelming necessity” to get it done that quick. Hannah was “next” in line to get her MRI, which amazed me and scared the hell out of me at the same time. Everyone was rushing around trying to get things signed, paperwork in order, and assessments done.
But, like everything else, there was a catch. Hannah was still on feeds. Even though they were only at 10 mL/hour, it still mattered. (She is getting most of her nutrition from TPN right now until her GI system also recovers from the sedation). She had to be n.p.o. (no food) for at least 6 hours.
So she is scheduled for early morning, Saturday. Yep, I know what you are thinking — wow, they are doing it on a Saturday? I am so thankful they are.
On a separate note, they cut down her fentanyl drip this afternoon as well, part of her weaning process. By early evening, I could see that Hannah’s movements were becoming more jerky, obviously as a result in the drop in medication. It wasn’t as bad as the first few days, but it definitely worsened since earlier in the day.
She was able to get 1-hour of nap in this afternoon. That was it.
Around 11 pm tonight, I was exhausted, so I called down to Hannah’s night nurse and asked how Hannah was. I was going to bypass my late night visit and get some sleep. Unfortunately, Hannah was still thrashing around.
I could not even think of going to sleep until she was resting. It just drove me crazy thinking about her down there like that and me all nice and comfy in my RMH bed.
So I went downstairs, and I broke the cardinal rule of weaning. I asked the fellow and the resident that were on tonight to sedate Hannah enough so that she could sleep for a couple of hours. She was so exhausted, but her body just would not let her rest. I could see the resident was nervous because at rounds earlier that day, it was clear that Hannah was not to get anymore p.r.n. (as needed) sedation meds since the night nurses during the last two nights overdid it (in all fairness, they were NICU floaters and getting Hannah was a ‘tough’ assignment).
The fellow agreed to do whatever it took to get her to rest. So the nurse tried one dose of fentanyl and versed. It lasted about 5 minutes, maybe. Then she got another dose. Finally, Hannah fell asleep. I asked the fellow to make sure she sleeps for at least a few hours if not more, and he agreed that she needed it.
When I saw her resting there, peacefully, her body all still …. I just took a deep breath. It was then I realized how stressful it was just watching her in that state all day long. I cannot imagine what it must feel like being her.
So it is 1:00 am. Daddy’s flight comes in at 6:00 am. But now I feel better getting some sleep. Hannah is finally resting. Daddy will be here soon. I can breathe.
Tomorrow (well, in a few hours) will be a new day.
I am so glad you will have your husband by your side tomorrow. You are one tough cookie but even tough cookies crumble. As always I am reading and praying along. Much love to all of you.
Every time you add details it sounds more and more like med withdrawls. I really hope that’s all this is. I understand hitting bottom. Same thing happened to me. You can probably live without that story though. When your hubby gets there you should ask the docs to prescribe YOU a fast acting sleeping pill so you can get in a good 8 hours of sleep. It WILL help you be able to deal with everything better emotionally. In my experience, nothing else (getting away, hanging with friends etc. . .) makes much of a difference. I love you even more now that you have a weaknesses. But not in a creepy stalker type of way 😉
Thank goodness Robert can get there quickly. I hope you’re able to get some rest.
I am really glad you will not be alone for this next little bit. I wish I could just give you a hug right now.
I have a Hannah as well. She too (and her brother Jake) has a rare and fatal metabolic disease. You know as well as I that words just can’t take the pain and grief away. I am so sorry your family and little Hannah has to endure this heartache. You remain in my thoughts and prayers…find the moments to dance in the rain, laugh, smile, and enjoy each day. Our babies are a gift…they are stronger than we could ever be. They teach us so much.
I’m glad Robert is there with you now. I agree that you should do whatever it takes to get yourself a long, uninterrupted sleep. Know that you are in my prayers. I am praying for Hannah and her medical team as well.
You need to sleep! Please take care of yourself.
Pam
With only 3 nights in the hospital, I had Matt cancel his trip for this weekend because I needed him. And we’re discussing what to do about his trip this week.
I think having the dads there is good for them too. Good luck with the MRI!
I’m glad hubby will be there with you soon and for a bit. Try to rest and I hope Hannah gets some much needed rest while weaning. I pray the MRI has good news. Take care.
I am so glad your husband is flying in- you need some support right now. I am so, so glad that they are rushing Hannah’s MRI so that you can find out what is going on- once you have an idea of the cause of her movement disorder, it might help her treatment. I am sending every prayer and positive thought in Hannah’s direction- and in your direction. I have every finger and toe crossed for a good MRI!