My Facebook status post 4/7/2015 sometime late into the night:
They say she won’t remember these days. I wish they could say the same for us. After a successful surgery things post op took us for a loop. After multiple complications they realized Lily was rejecting her own blood they gave back to her in surgery. That caused a whole lot of problems all leading up to her being ventilated. We thought she’d be off the vent by now but seizures came fast and hard and then a plethora of medications that weren’t doing anything for the seizures. I think I can safely say she is resting peacefully now and we might get a little rest but because she is so sedated she can’t come off the vent. I am clinging to my knowledge that joy comes in the morning. I am clinging to knowing this needed to be done and knowing we are not alone. And I am praying she has an uneventful night and we make a plan and all goes well tomorrow. Thanks for praying. Trying to keep folks updated but it’s hard. This is hard. Parenting can be the most heartbreaking job on the planet.
Our nurse that night was Amy and she was in our room AROUND the clock. I don’t know if she even had another patient. Lily was top priority and because of her I was able to close my eyes and sleep.
Many people would say “try to get some sleep” or “I know it is hard but you need your rest”, kind words somewhere along those lines but here is the truth. I slept. I pretty much slept every night we were in the PICU. It may have not been 8 hours resting on luxurious 1000 count Egyptian cotton, but there were at least 5 – 6 hours each night where I was rolled into a fetal ball and I slept. I don’t know if it was God’s sweet mercy on me, I don’t know if it was pure exhaustion, maybe it was the amazing nursing staff I was comfortable leaving in charge, whatever it was, I slept. So that night when I finally laid down, I slept.
I was up early of course, found myself the coffee machine in that big nice waiting room we neglected to find on the day we needed it, but it took me several days to find the cream (IN THE REFRIGERATOR!) seriously, that was a huge stress for me. That first morning I had to wait for Andrew to get there (which was early) so I could go down to the hospital coffee shop. Eventually (a couple days later) I found the creamer and that made life easier for me on the 6th floor. But geeze. Maybe a black sharpie saying CREAMER HERE IN THIS DRAWER IN THE FRIDGE would have been more helpful.
But again these memories are probably not necessary for our story. And I realize some of you are planning an intervention with my coffee addiction. You are wasting your time. I will flee.
Here we are Wednesday the 8th:
I am relying heavily on Facebook and Instagram for these details. I can tell you we had visitors but unless those photos are posted I won’t know what day it was or what we talked about. I probably won’t mention the visits for the most part because I will for sure forget someone and I’d rather not hurt any feelings by making visits seem forgettable because they weren’t. We were so loved on during this time I know it is what kept us afloat. We were carried through this time by friends and family. If anyone asked me to visit I would pretty much say not today, but others just came anyway and it was refreshing and re-energizing. So thank you friends and family. Facebook posts, private messages, texts, calls, visits, gift baskets, gift cards, food drop offs, those were all life savers, we were told to keep on swimming and we did, but those things held us up like a life boat when we couldn’t muster the energy to keep on swimming.
OK back to Wednesday the 8th, Andrew came back early and never left. Lily was intubated and during those morning rounds we looked at her x-rays which I already shared in last post, reminding us why we did this, and our plan was for her to wake up, get the vent out and manage her pain. New nurse, Gina, came and we were blessed with for 3 days. She was amazing and funny and another shining moment from those dark days. Throughout the day the Respiratory Therapist would come in and check on her and do coughing tests with her. His name was Jamie and we saw him a lot over those two weeks. He was opinionated and a true expert in his field.
And he pissed me off.
Let me say Lily has never had respiratory issues ever, OK well she had gotten RSV as a baby while on vacation in Colorado where they threatened to air flight her Children’s but we talked them out of that and she recovered just fine with treatments and steroids and then in November 2013 she developed pneumonia but we caught it so quick she didn’t even require hospitalization so her past behaviors were our best indicators for the present, right? So I kept saying, she can breath on her own, she is a healthy kid. I was sure she wouldn’t wake up because she hated the tube in her throat and was for certain she would wake up once we got the tube out.
Jamie disagreed. He tried these cough tests and kept saying she was failing. So he said she could not be extubated on Wednesday. I was so annoyed with Jamie.
That day Lily slept. Andrew would pace the room, touch her feet and see no reaction and go back to pacing. His worry wore on his face and on his feet. He should have worn one of those things that track how far you walk in a day. I realize those things have a name but at the current moment it has not come yet to me so I am saying a whole bunch of words to fill the space of one tiny word.
Fitbit! Yes! Fitbit, thank you brain, you can be slow, but you do show up. Eventually. (editor note: I was almost done with writing this when it came to me)
Andrew paced and I am not sure what I did. Watched him? Look at magazines. Yeah.. not sure. I think a therapy dog came by that day. And sweet friends, sweet friends came by and we prayed. Our moms were there and I am sure we walked to the cafeteria for something to eat. I don’t really know.
Andrew would play Slumber by Needtobreathe on repeat and we prayed some how those words would sink in.
Wake on up from your slumber
Baby, open up your eyes
Wake on up from your slumber
Baby, open up your eyes
Sing like we used to
Dance when you want to
Taste of the breakthrough
And open wide
April 8th nighttime post:
Sweet girl is resting too hard still for vent to come out. Trusting in his timing even though it’s hard. Not much to report. She’s sleeping hard and stable. — with Andrew Nothdurft at Phoenix Children’s Hospital.
|Lily sleeping with her beautiful gift we were given before getting to the hospital. That gorgeous blanket was admired by everyone|
Thursday April 9th
We slept the night before (did I say we? Oh yes I did, Andrew and I bunked up in the tiny couch and we slept like honeymooners all cuddled up as tight together and as comfortable as two very tall people can manage sleeping on the width of about 4 feet can sleep comfortably. Neither of us were leaving her and that was that). We had nurse Megan and we had her for 3 nights. Thank the Lord. She was wonderful. I said “Megan, we are really tired, we want to go to sleep, is that OK? Will you wake us if anything happens?” She assured us and we slept. We woke up with a heavy blanket lovingly tossed over us and I thought man Andrew’s mom is here early. She always covers those who sleep with a blanket. Then I rubbed my eyes and realized it wasn’t Cheryl, it was the X-Ray tech throwing a lead jacket on us and taking an X-Ray of Lily. My bad. I liked my initial thought better. They had to check her tube to make sure all was well. This was how we continued to wake up for many, many mornings. Except for the mornings they forgot to cover us and I am probably now sterile forever.
It was a new day.
There is something us crazy Christians like to say and it is his mercies are new every morning and it is such a beautiful and comforting reality for me. Nighttime is dark and fearsome. At night I am weak and feel defeated, but each and every morning I wake up to his light and I am powerful and brave and ready for a new day. I am filled with Hope and the incredible thing about waking like this every morning from the 6th floor at the Children’s Hospital was this is what we saw every time we looked out our window.
This is the reminder we had that we will all wake to a new day:
|Our view right outside our window – Phoenix Fire Department|
I feel like I should explain why Andrew and I were able to be with Lily around the clock. One simple answer, Grandma’s. My mom would sleep at our house get the kids to school and come to the hospital and then get back there before they got home from school. It was a great plan and we were able to get meals and walk around the hospital when needed because we always had Grandmas there. Grandpa would come too sometimes, but Grandpas aren’t super hospital people so it’s more Grandmas. We had it covered with support and were able to not have to worry about our little hearts beating away from us at home.
After rounds on Thursday morning we found out her hemoglobin was really low, she was on a low setting on the vent, she was still sleeping and still unresponsive.
The intensive team wanted her extubated and that was the day’s goals.
I thought well damn, give her some blood. Then she’ll wake up. Right? Something. We had all the Doctors come in and check her. Dr. White always came in with a smile and told us to hang in there. The resident was so sweet and wonderful and always answering questions and had wonderful bedside manner. Dr. Nelly, the Fellow on Lily’s case was hard to read. She seemed a little tough at first but ended up being one of our most favorite people we looked forward to seeing every day.
We had a new respiratory therapist on this day, but she was sounding a lot like Jamie. I was not happy about that. I thought give her blood, take the tube out. You will all see, Lily will be back to Lily. This is where I realized my gut isn’t always 100% – hope all the while is a good thing most of the time, it can also block your brain from reality. It’s a side effect of parenting I think.
It was in the afternoon and our Pastor Palmer and his beautiful wife Veronica came to visit right when they decided to extubate. Great timing for them. We all stood and watched them remove the tube. I was nervous but thrilled, they’ll see I thought. She’ll be Lily again.
Andrew asked the RT if she thought it was OK to extubate her and she gave him a look and walked away. She was angry. She was so obviously angry that she was extuabting a child that was not ready for extubation she couldn’t formulate one word. RT was mad, Gina (RN) was mad and I thought what is happening. Fellow and Attendee said pull it out. They knew right? So then Palmer and Veronica put their hands on Lily and we all prayed.
Once Lily came off the vent we were able to close her door. I didn’t want her door closed but Gina said they were bringing in a patient from life flight and it will be a trauma situation and we won’t want to hear it so she closed the door. I don’t think she realized my favorite shows all have to do with Doctors. But whatever we closed the door. Trauma was unfolding next door and not before long trauma was unfolding behind our closed door.
Lily had on only a nasal cannula after being intubated for over 48 hours, it didn’t take long before we saw her shaking, and her nostrils were flailing and she was trying so hard to breath. I thought she is in pain, medicate her! She is in pain! She wasn’t breathing, it was chaos in the room as all the monitors were beeping. Her heart rate was in the 140’s and her breath rates were in the 40’s-50’s. We open the door, hit the nurses button and ran out to find Gina. Found her and then she was yelling to get an RT in our room, but it was shift change, no one was available, she said “Get someone in here now!”, it was chaos. I don’t think I was breathing as I watched our baby girl struggle for each breath. Oh my heart aches remembering what I have tried so hard not to remember. She was fevered, she was trembling, nostrils were flaring, monitors were screaming and I thought one more step… I physically cannot take one more step emotionally. I cannot do this. I wanted to run from that room and write a wish you were here post card. Thank God he swept in and took the steps for me. I had lost any will left in me, he was in control. I was broken and my pieces were all over the floor. God held me and therefore I was able to stand there and watch our world come undone. Finally got an RT to put her on bipap, she got pain meds and seizure meds needed via NG tube. I am not even sure when that was placed. I think Tuesday night I am sure. Then again she was resting peacefully and we sat down.
I don’t remember what night it was but I was talking with Megan (our night RN) and I was telling her how I can’t imagine working all night long and she probably believed me as she saw I am able to sleep no matter what area of space I am limited to and she was telling me how it isn’t that bad and I joked about how she probably doesn’t have to deal with parents as much during her shift and she said that it was true and she said “I love the families but sometimes in there (PICU) it is hard because people don’t realize how sick their kids are”. And even as she said those words I thought oh yeah I bet you’re right. And she had to be so right because I had no idea she was referring to kids in Lily’s condition. There we sat in the most critical area of the PICU across the way from the nurses station and I was thinking she must be talking about some other poor chumps with sick kids. Because that is the reality of life. We don’t see what is right in front of our face because seeing that would mean believing it and that was something I wasn’t prepared to hear, see, nor believe. Our daughter wasn’t breathing on her own. Breathing is pretty much an essential of life. Therefore Lily was really really sick and Megan was right. We had no freaking clue.
April 9th evening Facebook post:
Sweet girl hasn’t tolerated the vent out well and needs bi-pap to help her breathe. It’s been a scary evening. Pray Lily will wake up. She is still pretty unresponsive.
I want to go into Friday the 10th, but that was her hardest day of all and I don’t want to keep going if I have a ton left to go with. So I promise to come back soon. And you all must admit this was a quicker turn around than last time. See doing IS proving!