We got the word at breakfast that we were moving over to Shirley Ryan at noon! The EMTs came and strapped Annie and Michael the Koala onto the stretcher.
Annie was not a big fan of the sirens in the ambulance bay, but now she can say that she rode in an ambulance for 20 minutes. (Yes, because of traffic and one-way streets, it took us twice as long to ride over as if we had just walked.)
The room is smaller than our hospital room at Lurie, with no recliner, but at least I have a desk. We’d hoped for more space and maybe a bigger bed, but the nursing staff said apologetically that the parent sleeping arrangements here are actually pretty dire. Many parents bring in an air mattress or share the bed with their child. (This would have been helpful information one of the ten or so times I spoke with someone from here in the months leading up to this stay…) Look at the size of the bench and loveseat, with my laptop for reference… I’m asking about a Ronald McDonald House option as soon as Annie is sleeping through the night again and doesn’t need me to carry her to the potty between 8 pm and 6 am. (She could call the nurses, but our experience at Lurie was that they didn’t respond quick enough when she felt the urge to go, so I just took her to the potty myself.)
Today is just for settling in and getting all the intake paperwork done, then we’ll start therapy tomorrow!
We just got the call that our insurance approved our transfer to Shirley Ryan, but they don’t have any open rooms for us tonight. So they’ll have a meeting tomorrow at 10 am to assess rooms, and hopefully we’ll know by lunchtime if we’re able to move tomorrow. Annie and I are bummed to have to stay here another night, but we’re praying this is our last one here!
We just had a bath, washed her hair, put her in shorts, and took off the bandage over her incision site! She’s much more like her normal self today, has had just minimal meds, and is hoping insurance comes through so we can transfer to Shirley Ryan today.
Yesterday afternoon, Annie was daring enough to transfer into her stroller for a walk around the 19th floor, then down to the 12th floor for the family fun room. We picked up a puzzle, and when it got too loud in the family room, we came back up to the 19th floor lounge. I lesson planned while Annie did her puzzles. We were both big fans of getting out of the room for a while, though she came back and crashed and even had an early night. The night was our best yet–she woke a bit when the nurse came in to get vitals at midnight, but we both fell back asleep quickly and slept until the floor-wide alarm went off at 5:45 for a Code Red Drill. Annie was not happy about that, and she had slept so hard that she had an accident in the night, so we got up, bathed her, and started our day nice and early.
So I found the laundry room! Two washer/dryer units for the whole hospital, but better than nothing! Annie is getting more comfortable with me leaving her for a few minutes, so I got to leave the room to put in the laundry, transfer it to the dryer, and then brought her down with me to pick up our dry clothes. Since I hadn’t set foot outside the hospital except a brief outing to pick up dinner last night, it was good to remember that life is continuing outside of room 1908.
We explored the 11th and 12 floors–not too much to see outside the playroom except a Chicago fire engine and dalmations that Annie couldn’t really play on because she’s not bearing weight yet. But we definitely enjoyed walking around a bit. We decided last night that instead of screaming and crying every time I move her, she’s just going to grunt hard. That worked some of the time getting her in and out of the stroller and on and off the toilet.
She’s now pooped and peed and is off all IV meds, so we’re mainly doing oral meds with the g-tube as a backup for some water rinses. She’s still not drinking as much as the nurses and I would like, especially with all the meds we need to process out of her body, but thankfully her pediatrician Dr Griffin and I had agreed to keep the g-tube port in until after the surgery, even though she’s eating everything orally now. It’s sure been the source of many of my most stressful moments of motherhood, but it’s a great back-up now!
Dr Raskin stopped by and said that she’s met all of his criteria for transferring over to Shirley Ryan! He’ll still be seeing us there, but we’re eager to get to a (hopefully) bigger room with a (hopefully) better parent sleeping arrangement and to get started on the PT and OT. His nurse administrator came by to say that everything has been submitted to insurance, and we’re just waiting on them to approve her transfer. Good news is our insurance company tends to be pretty prompt, so best case scenario, we transfer tomorrow, and if not, hopefully Wednesday. The hilarious thing is that the hospital policy is that any hospital-to-hospital transfer has to be done via ambulance. Here’s a map to show you how ridiculous this is in our case.
A is the Lurie tower we’re in. You can walk through second floor hallways across the street, past the shared Lurie/Prentice/Northwestern parking garage, and into the main Northwestern hospital (B) without going outside. I did this on Saturday, when it was raining, and it takes no time at all. Then you literally see Shirley Ryan (C) down the block. Okay, so the main entrance is around the other side, but you get the point. The gal who was telling me that we have to ride an ambulance to get there was shaking her head that she would gladly come pull my suitcase while I pushed the stroller, but alas, hospital policy is hospital policy. It will almost certainly take us longer to get to the ambulance, load up, drive, and unload than if we just walked over, but we will do what we must!
The Child Life folks found another puzzle for Annie to play with, and she’s been sitting up and doing puzzles more today. And after lunch, we wandered back down to the family center and found a piano!
Last night went better than our first night here. She is on more meds for pain as well as muscle relaxers, and they only had to come check her every four hours instead of every hour. The vitals machine did wake her with its beeping at 2:30 and 3:30 am, and both times she said she wanted to try to use the commode, screamed cried as we moved her on it, and then didn’t go. By 3:45, having been awake for over an hour, I was feeling pretty exasperated, but we both finally managed to fall back asleep on and off for another 3-4 hours, so we’re both feeling much less tired today. We also got her a sponge bath and a new gown this morning, so she’s feeling fresher. Dr Scoville, the neurosurgery fellow, checked in on her again this morning and doesn’t think her complaints about legs hurting are a sign of hyperesthesia because she only complains about them sometimes and tolerates blankets and some pressure on them. This is an area where her intellectual disabilities make it difficult to figure out exactly what she means by “hurting”–are her legs sore from being still, sensitive from the nerve stimulation, still feeling heavy because the anesthesia is still working its way out of her system? We will continue to monitor this, and while I’m looking forward to getting out of here and over to Shirley Ryan, I don’t want to leave before we have a handle on her pain.
She sat up to eat breakfast, rested, then sat up to watch our church service with me, rested, and sat up for lunch. The food here is pretty mediocre, but we’ve established that she likes the mac and cheese. I also found a Keurig on our floor, so I was able to heat up some water in it for slightly coffee-flavored tea.
Her buddy from horseback riding therapy gave her a care package for the hospital stay, so we pulled out some toys and played for a few minutes before she asked to lie down again and take another nap.
She wants her siblings to see that she’s going to take her afternoon nap on her tummy today! So far, it’s just been on her back and side, but I figured her incision site needed a break.
We had a visit from the PT and OT at about 11:30 to get Annie to sit up for the first time. She had been asking about it for hours but screamed and cried when we actually sat her up for about 20 seconds. I was told to get her moving as much as possible now, but she is not interested yet. We took out the catheter and raised her bed up for lunch, then she rested (in tears). The pain doctors came by and gave her oxy and said we can discontinue through morphine drip, so with the veritable cocktail in her system, she shouldn’t be feeling pain from the incision site. I think it’s actually just being so stiff from reclining in bed for the past 24+ hours. We did unhook her from the IV hydration bag because we can use her g tube to hydrate, if necessary. I dumped all of her leftover milk after breakfast and lunch through the tube, figuring we need to get things moving through her system. She had a failed attempt to use the portable commode the first time after lunch (but held herself up, wailing, for ten minutes) then rested for an hour and just finally had success trying again. She is crying a lot every time we move her and hasn’t tried to bear weight on her legs at all yet, but it’s heartening for me to see that she *can* move her legs and hold herself up, even if she doesn’t want to.
I don’t think she’s going to be a particularly dedicated patient in rehab, judging from today. She just wants to stay in bed and not move. We really need her to get some sleep so she’s in a better mood to try!
I have yet to leave the room today. She wants me within sight at all times. The one time I went into the attached bathroom to take a shower this morning, one of the machines started beeping as soon as I had shampoo in my hair. Sigh.
So Dr Raskin was overly optimistic about the pain levels. Last night, we got Annie settled into her room on the 19th floor just in time to order dinner, and she fell asleep for Derek shortly before something attached to her beeped, so she only had a half hour nap. After enthusiastically eating 3/4 of a kid cheese pizza and saying goodbye to Daddy, she fell back asleep for about half an hour, just as the night nurse came on shift and had to wake her up to have blood pressure taken. She cried a lot, was very upset about her hands being out of commission with IVs, but eventually fell back asleep after the 10 pm blood pressure check. The nurse had to follow protocol to check her every hour, but Annie and I both managed to fall back asleep quickly after the first couple. At 1:30 AM, she tried to sit up, made it far enough to slump over bent over, and then was in a lot of pain because she wasn’t supposed to be bending yet. We had to do quite a bit to calm her back down and tried shifting position and meds, and I think she might have fallen asleep after 3. Then she was up fussing at 5:45 again, and the nurse noticed that her main IV hand was getting puffy and secondary IV was not working. So we had to disconnect her, take out both IVs (she cried with every pull of the tape), and bring in the IV team to put a new line in on her left forearm. Her first two IVs were put in after the gas mask knocked her out in the OR, so doing this awake was pretty traumatic for her. I feel like I’ve spent the last 5.5 years working on overcoming her PTSD from medical visits–she used to cry so hard she vomited all over me when she had to have blood pressure taken or blood drawn back when we first got her–and I can tell we’ll really be regressing for a while.
As I was typing, part of the operating team came in to check on her this morning. She’s been complaining that her feet and legs feel weird, but after feeling her legs and feet, the doctor thinks that everything is just feeling overstimulated and sensitive after the surgery and put her back on a nerve medication that she was on in the OR. Hopefully it will soothe everything and allow her to settle. He did say that judging by her leg movements which he tested in the PACU, she definitely has reduced tone (which was the goal of the surgery!), and he is not concerned.
I frankly feel like a zombie. I am 5’8″ and the couch that folds into a bed is about 5’5″ long. We’re both going on essentially two naps overnight, but now that the day nurse has come on shift and checked everything, she seems calm, so maybe she will take a nap now with meds flowing smoothly again. Of course, it’s 8:30 am, and I’m not sure I will be able to nap. The doctor amended orders so that they only have to come check on her vitals every two-four hours rather than every hour, so at least that will give us both some downtime.
Bleery eyed after a rough night, but trying to smile.
Hoping that today is calm from here on out! She ate part of a chocolate chip pancake and a piece of bacon for breakfast, and she wants to take a nap until lunch.
Annie is awake, and we’re hanging out with her in the PACU while the anesthesia works out of her system and we wait for a room to open up. She woke up asking who was going to give her the “shot” (IV) and then was confused that she had slept through everything. She says her head hurts (probably a headache from the anesthesia) and that her feet feel weird. (Maybe noticing the missing nerve feedback to her feet and ankles? She was still asleep when the fellow surgeon came to check in on her, so we’ll ask him when he comes back.)
She really doesn’t like these little wrist covers they have to keep the IV lines secure, so she’s been fixating on those and all of the noises from her monitors and beyond the curtains. We’re having to wipe up her tears with a wash cloth since she can’t use her hands right now! She had a couple sips of water and then felt sick, but she hasn’t thrown up.
Dr Raskin just came back to say that surgery is all done and went exactly as he had hoped. In operation, they were able to test which individual nerves were sending good and bad signals, and he said those tests all made sense with her history and observations of her gait. For example, the nerves that send messages to upper legs were only about 20% corrupted, so he and Dr Rojas were able to be very conservative with those. She has most of her extra tone in her ankles, especially her right side, so those bad messages were the ones he was able to disrupt. They are very specialized and don’t cut all the way through the nerves.
As far as the spinal cord, he has no concerns about spinal fluid leaking. He said he sewed everything up nice and tight. Someone told us she would have to stay flat for three days, but he and his team have determined that a day of staying flat is sufficient for healing and have exactly the same outcomes as more cautious peers at other hospitals (which is probably where we heard about the three day restriction). So she is only going to have to stay flat through noon tomorrow, and she can be on her back or her tummy. This will be much easier for me than I had expected!! She has a catheter and two IVs still, and the pain team will monitor her pain meds, but he says there is very little pain associated with recovery.
We will definitely be staying here at Lurie through the weekend as they monitor her healing, then we’ll stay here until they get our insurance to approve the transfer down the street to Shirley Ryan. He will continue to check on her while she is here and then will come over there for her post op visits once we’re settled there.
For recovery, he says she will likely need at least the six weeks of intensive rehab and not to expect her to roll out of bed and move normally until they retrain her on how to move her body without the confusing feedback she was getting. This is what we expected, so no worries there!
Praise God for how well everything went! We are now just waiting for them to start bringing her out of anesthesia, and we’re hoping to be able to go back and see her within an hour.
We just got a visit in the waiting room from Dr Rojas, the pediatric rehabilitation doctor at Shirley Ryan who was in the OR with Dr Raskin, the neurosurgeon. She was the one who analyzed the reactions to the nerve stimulation during the surgery to advise him which nerves to cut and who will be overseeing her rehab when we transfer over to Shirley Ryan. She said her portion of the surgery is done. Everything went exactly as expected. Dr Raskin is still working. He will be using tiny screws to reattach the bone they had to remove to access her spinal cord, then they will stitch her back up.
We spent several hours eating and working in the cafe court next door at Prentice Women’s Hospital (where I delivered Elizabeth!), but now we’re back in the Lurie surgery waiting room until they bring us up to Annie in recovery.
