Tuesday April 7th: 4:15 am the alarm went off. I was already awake. Got dressed and packed the room up, lastly Andrew picked up a sleeping Lily and put her in her wheelchair. I was told not to give her anything to eat or drink, I asked about 80 times if I can give her meds and they said no. They said she would have enough in her to not need her seizure meds. This is one of my biggest regrets. I could have given her the tiniest bit of water with her seizure meds. I didn't and regret that. We loaded up and were out the door before 4:45 am, it took a mere 5 minutes to drive down the dark and deserted Thomas road (that never happens) and then there we sat and waited until 5 AM when the parking garage would open. We sat, Lily slept. I am not sure what we talked about, if anything, I don’t have the slightest memory of that morning expect for watching the car in front of us -another early bird- and wondering what kind of surgery were they there for. We all know no one is at the Children’s Hospital before 5 AM for anything else. And I should mention if this was all on my time, my schedule, my choice we would have been 5 minutes late and didn’t have to sit behind this car and just sit. I run on perpetual crazy. I like it that way. Too much time just leaves my mind reeling and for a person who lives in constant chaos in the brain it’s no good (PS the other day Oliver asked me if chaos was a bad word. What a funny word for him to think is bad. That had me thinking about what it is like to be a kid (my kid most especially) and wondering what words are bad. It must be like walking in a minefield. Sorry kids. I don’t like bad words. Dammit.). So basically sitting still time is not appreciated, nor desired. Thanks hubby. You and your darn instance for being early to everything.
So the gates open and we park. Best spot in the place. You will understand this was very important to us and you will notice at the time when I absolutely had to re-park it was way more devastating than anything ever should be. AND when you read why I had to re-park you will think I am an enormous butthead for even thinking about my parking space so we will just save that story for later.
Enter the completely empty eerie hospital. PCH is never empty. Well yes it is, at 5 AM it is. We go and check in. I leave Andrew and Lily to get a coffee AT THE CLOSED COFFEE SHOP… you make us come in at 5 AM and don’t even have the decency to have the coffee shop opened? Now this shouldn’t be a big deal, but I didn’t have any coffee yet. I was out of fingernails to chew and really needed some caffeine to give my nubs a break. But these details are really not that necessary. But it is funny what my memory can recall. A few other families check in at the unGodly hour and I sit and watch them all. I could have been less conspicuous but I had no caffeine. I am a watcher of people. It’s why I heart reality shows so much. People are fascinating and I love their stories so I sat and watched other people's stories unfold as I bit what was left of my last fingernail.
LilyAnna they call. We go back to the desk and get a stack of papers, we pre checked in the day before when she got her blood drawn so that was easy. And probably the last easy thing to happen for the next two weeks.
“Take these up to the 4th floor and someone will meet you to take you back” and as sure as rain never is in Arizona there was someone there to take us back. Still fueled on nothing but fingernails and fear we walked back, weighed her, measured her, totally bothered her as she was still pretty much sleeping and then escorted to the pre op room we would stay until the fated moment they came to take her away.
|This is the picture that breaks my heart. I sit with tears in my eyes as I write this. She was so happy pre surgery. Just laughing at her silly dad. And it has taken a long time to see this smile again.|
That is the back story to explain when the Anesthesiologist came in and changed things up. We had spoken briefly to an Anesthesiologist the day before with the lab draws but he was more easy going answering questions, this woman was the one doing it and came in to talk to us of course as they do before surgery and it took all we had to not go running out of the hospital with Lily in tow to never been heard from again. I want to preface this with we really did like her. She came in our room and said she really didn't think she should have the battery replaced before surgery, she shouldn't lay on a fresh incision for 3-4 hours, she was going to talk to the surgeons, she was in charge and took care of that. OK. Then she started to talk about the surgery, how serious it was, how regular anesthesia doesn't work with this because they have to continually check her reflexes. She talked a lot and I don't remember lots of the words she used. I remember the feeling Andrew and I had when she said them. Doom. Doomsday. Like seriously let's run now, we still have time. She talked about all the side effects and she could struggle breathing afterwards, may require extended intubation, etc. BUT this is Lily she was talking about. Things go wrong for her often but not that wrong. She is healthier than any of our other kids, she is like an ox. She won't have breathing problems, she never has breathing problems. So she leaves the room, our white faces just look at each other I am not sure if we even said anything, just looked at each other. I thought I was going to vomit.
Then Dr. White comes in and says let's do this! He was optimistic and confident and that helped a lot. But our stomachs were still turning. We told him what she said about doing the VNS last and he was like sure, what evs... Neuro Surgeon said sure I'm here all day and so that was the plan, spinal fusion then VNS battery replacement and she comes out and she heals quick and we are home on Sunday.
And then God giggled a little.
They took her back sometime around 7 AM and my mom met us in the waiting room with COFFEE. And there we sat. Andrew took her wheelchair to the van and we sat. And sat. We didn't leave the waiting room. I went to the bathroom a few times to let some of my sob to escape. It just sat there in my throat and it was easier to excuse myself, let it out and go back to wait. Andrew's mom showed up after she got our kids to school and not much later my Aunt Gloria came and then our good friend Brian came. We sat and talked I guess. I don't really know. I got updates pretty often from surgical nurse on my phone and I would try to update my friends and family. At some point my Aunt Gloria spilled her entire cup of coffee on the floor and that made things interesting for awhile. Ha! Thanks Gloria. We really weren't allowed drinks or food in there. I wonder why they had that rule.
Then it was like I don't know 11 AM and we were in a room with Dr. White where he was excited to show us her before and after X Ray, surgery was successful!
|pre surgery 70 degree curve|
|post surgery.. what curve?|
Her pre surgery curve was 70 degrees sitting. She went from a 50 to a 70 in a short amount of time and was only getting worse. Surgery wasn't a cosmetic or really optional choice, she needed to be straightened to have a healthy body. She is now very straight.
Excited we left the room to tell everyone surgery was successful, now the hard part, recovery.
Not much later neuro surgeon comes to tell us all went well with the battery replacement. We go back to waiting room and volunteer tells us "she will be going straight to ICU and we can see her there."
And there we go to the ICU and sit and wait in a small waiting area. Unaware of the big one not to far down the way with a TV and coffee machine. We sat. Same crowd, different place.
I'm thinking it was about 2 pm when Andrew asked someone why we haven't been brought back to see her. Then there was a social worker and a Dr coming to talk to us. Things just got real right then and quick. Dr. Rosenberg (critical care MD) came to tell us Lily was struggling and had to be re-intubated and they were still working on her and will come and get us when the team is ready.
It was getting late my mom needed to be going for the kids so I texted my friend and super neighbor Dana if she could get them and not to tell them anything so they wouldn't worry, just say grandma lost track of time - which is totally believable ;) love ya mom! So we waited some more and more. Finally we got brought back and I was scared. Scared to see our baby intubated. Our nurse - Super nurse Jordan was giving us the low down, her hair was a mess, her voice was shaky and I was wondering what all was happening to our baby girl while we were down the hallway talking about stupid stuff. My heart was in little pieces dispersed all through my body. I was crushed. I cried a little when I asked my mom and mother in law if I should let Andi facetime with us that night. She had wanted to so badly. I never thought though Lily would be on life support. We decided no.
Then I looked at Lily's urine bag. It was bright red. Nurse Jordan said they sent a sample to the lab. No that it wasn't OK. They really weren't sure what was going on. Lily's heart rate with SUPER low and blood pressure as well. Trying to remember what else was going on. I know she was totally unresponsive and no one knew why her urine was filled with blood and why she crashed after surgery.
Details get a little foggy from here. I know we let everyone there see her. She got kisses and love from everyone. Mom went home to take care of the kids. We sat by her side.
Finally they said it wasn't blood in her urine, well it was blood but not red cells? Ack sorry this isn't a medical journal, this is my blog. I didn't graduate college. And even if I did it wouldn't be to write medical journals. What happened was they recycled her blood during surgery but when the blood comes out they wash it in a citrate formula and then put the blood back into her body. They realized what happened with Lily was she rejected or was allergic to the citrate so the blood just came out where ever it could and in her case it came out in her urine. They think that was the reason for her crashing and why everything went so bad. Oh Lily. Gotta be so unique. It was one of those yeah we really haven't seen that before scenarios. Anesthesiologist came by worried and wanted to see Lily. Said she was in the middle of a surgery with another patient wondering what happened to Lily and had a light bulb moment and realized it was the citrate. So while she was doom and gloom we liked her because she is a wonderful Anesthesiologist and is exactly whom I would want caring for my child again if God forbid we had to do surgery again. She cares and is intense and knows her stuff. Top doc in my books for sure.
And more sitting bedside. She would make subtle hints of waking up but then would go back to sleep. I was confident it was the tube in her throat frustrating her so she wouldn't wake up. Lily has a tendency to check out when things aren't going her way so I figured that was the problem. In most cases my gut is right but in this case it wasn't. It will be proved wrong later.
I have no idea around what time it was but Lily started to wake and would have a seizure each time she would wake up. They gave her ativan in her IV. I said she needs her home meds and now, it finally dawned on me she had gone 24 hours with out her home meds. They were running to get them for me. And she would seize again and again and again and then she just wouldn't stop. They weren't seizures like at home and I was scared. The most scared I had been all day long. And that is saying something. They kept giving her Ativan, they even gave her something that they said she would not be able to seize with and as they gave it she continued to seize. It was awful. Absolutely awful. Eventually they stopped, after enough drugs to knock an elephant out, she was out. And she would remain out for quite some time.
It had to have been about 9 pm when Andrew and his mom went to sleep at the Ronald McDonald house, reluctant to leave I sent him off with a promise to call if anything happened and then I sat on the couch/bed and sobbed myself dry.
I'm tired. Will continue again later. I will try not to take so long the next time. Although we all know trying is lying, doing is proving. Yup tuck that little motto in your hat. You'll use it again. You're welcome.