So, my last post was last Wednesday. Thursday we both worked and the kids both went to their in-home daycare for the last time. Big thanks to her for keeping the kids healthy for the entire 5 weeks, unbelievably she emailed to let me know both her and her son came down with a high fever the very next day!!! We packed up the car and headed out of town immediately after work, picking the kids up along the way. We dropped Jonah and the dog off at grandma and grandpa's house and had dinner with them. Then it was up to the Ronald McDonald House as they had called earlier that afternoon saying they had a room available. For those that have (thankfully) never needed to stay there, you never know until the day of whether there's a vacancy, but luckily once you're in you're welcome to stay the whole hospitalization. RMH in Milwaukee has been operating over full capacity for several years and just broke ground on a project to double the size of their facility. It's a wonderful place to stay and even donating more than a hotel would cost us we still felt it was the perfect place to be, the volunteers are wonderful, they're right across the street from the hospital, they offer meals-to-go and refrigerator/laundry/etc for use while you're there and they have a clean playground that Jonah was able to come visit and play at one day.
After checking in we pretty much got all settled for the night and went to sleep. We knew it would be a big day and figured Julia wouldn't sleep as well away from her own room. She did great and other than me waking her up at 5:30am to feed her one last time she slept through the night until about 7am! More than I could have hoped for. We had to be to the hospital at 9:30am so we took turns getting ready and gave her a really good scrubbing (at the hospital's request) and headed over. We checked in at the hospital at 9:30 in pre-op and got all her vitals and hospital bands and changed into her hospital gown. And waited (as expected). I'm convinced they build in time in case you're late so they don't delay the operating room or surgeons.
They started almost exactly on time, coming to collect her around 11:15am and coming out to tell us they were done around 4:15pm. They provided two intermediary updates via phone call to the surgical waiting room letting us know all was going as expected. They did have to do a blood transfusion during surgery and another that night and another the next morning, a few more than planned. Once they were done we met them in the hallway for a quick kiss before being debriefed by the surgeon and waiting another hour for her to get settled into her room in the ICU. He explained that because of the shape of her head he had to take a slightly different approach but that she looked great and he foresaw no problems. There was a small tear in her dura (the leathery muscle that protects the brain) so they were going to be cautious over the next day and use lighter suction. Then we were given a ICU tour there and settled in. We ended up staying there only about 24 hours. AJ stayed overnight at the hospital in her room and I stayed across the street at the RMH. Every night we switched off so we weren't zombies. Between nurses taking vitals every 3 hours plus Julia not sleeping very well anyways, the person staying overnight got very little sleep some nights. But I'm so glad someone was with her literally 24 hours a day, it made me feel better even if she didn't notice early on (though I think she did).
The first morning post-op I rushed over to the hospital so I could be there for rounds. They said she was doing well but crit was a little low and she needed another transfusion. Overall they were happy with her progress and they were moving her out of the ICU that day. What?!? But it was true, they gave her what would be her final transfusion, took out the Foley catheter and monitored her that day and we moved to a regular hospital room about 24 hours after she got done with surgery. We moved to the smallest possible room on the 8th floor in the neurological wing. I seriously think it must have been because Julia was in a small crib rather than a full sized patient bed, you could NOT have fit one more thing in that room. The nurse apologized for the state of the room (falling apart) as they are moving to the newer wing of the hospital in "a year or two so my supervisor doesn't want to spend any money here". Um...K?!? But the nurses were great and the care was what mattered so we didn't grumble (loudly anyways :)
We stayed there from Saturday night through Tuesday morning. The day of transfer was rough as moving her caused her some discomfort and she was also starting to throw up from all the pain meds which were rough on her stomach since she hadn't eaten much yet. On Sunday morning they took out her drain tubes, which were tubes with bulbs on the end providing suction to extract blood and other fluids from under her scalp. Her swelling peaked that day and because she was more awake it bothered her more that she couldn't see out of her eyelids which had swelled shut. That same afternoon they took off her head wrap and told us that would help her swelling diminish and to hold her upright to help as well. Monday she started eating more regularly and could just barely peek out of a crack in her eyelid and Tuesday morning we were told we were headed home. Our wonderful surgeon stopped by every day even though it was the weekend and was by multiple times a day most days along with visits from his fellow and residents. He was very supportive and is who will follow Julia for years to come, starting with her post-op appointment next week.
I thought I'd share a few photos that show her days in the hospital.
Day one - Waiting in pre-op
She was her normal smiley self and charmed the nurses
Day One - After the Operation
(Her room in the PICU, huge and filled with natural light...and a lot of machinery)
Day Two - (Day After the Operation)
This was in the morning, they still had her sedated which was a blessing as the only time she woke up was to moan or cry. She shared a nurse with one other patient next door and had a relatively uneventful stay. She had a foley catheter, two IV's, two drains in her skull, an arterial line (for blood draws and transfusions), a blood pressure cuff, plus pulse-ox on her back and toe (to monitor her oxygen saturations in her kidneys and outer extremities). Needless to say, no holding this day. The second picture shows the, like, 70" screen they had showing her stats when you came into the room. Thought my geeky friends might find the charts as much fun as I did in terms of quick visuals (Children's probably has the same consultants recommending visual management as my company).
Day Three - Swelling at it's Peak
The first photo is from mid-morning when her drain tubes had been removed but her head dress was still on. Swelling went up-up-up this day and because she had been weaned off the sedative she was quite aware of it. The second photo shows the actual incision a few hours after they removed the head wrap. They shaved just the strip that they needed to and the zig-zag pattern is to help her hair cover the incision as it grows back in. The dot behind the zig zag is one of the drain holes.
Day Four - Peeking Out Through Tiny Slits
Day four we had lots of visitors which worked out as it was when she started to turn the corner in terms of coming back to herself. The change from morning to evening was remarkable. She was still on some pretty heavy duty narcotic pain medicine but if you timed it just right between sleepy from the meds and in pain from them wearing off, you could get some smiles and giggles out of her. She now only had one IV line in and towards the end of the day we could even disconnect that in between her antibiotics which took about 40 minutes out of every 6 hours. You can't see it in the photo below but she can actually just barely peak out of her swollen eyes and she was loving sitting up and playing some games. They wanted her upright to help reduce the swelling but until this point we had just been holding her.
Day Five - Headed Home
Unbelievably she was headed home on day five. We of course had to spend hours between discharge there and moving out and cleaning at the Ronald McDonald House. Then had to stop at the pharmacy for some heavy duty pain meds and an oral antibiotic. Couldn't coax a smile out of her in the carseat as we made our getaway but luckily she slept on the way home. Once we got home we continued all the same meds as in the hospital but she was much more herself, seeming to realize things were almost back to normal. She was a bit afraid of being touched and especially of trying to feed her anything but I found her favorite food and let her make a mess for lunch which cheered her up.
Unbelievably she was headed home on day five. We of course had to spend hours between discharge there and moving out and cleaning at the Ronald McDonald House. Then had to stop at the pharmacy for some heavy duty pain meds and an oral antibiotic. Couldn't coax a smile out of her in the carseat as we made our getaway but luckily she slept on the way home. Once we got home we continued all the same meds as in the hospital but she was much more herself, seeming to realize things were almost back to normal. She was a bit afraid of being touched and especially of trying to feed her anything but I found her favorite food and let her make a mess for lunch which cheered her up.
Miss Julia is nearly back to herself. This was yesterday playing outside with her brother in the backyard. She was having fun exploring the grass and playing with Jonah's hat. AJ went back to work this Thursday and Friday and will be watching Julia Monday and Tuesday when I return to work. She got her first bath on day six and we'll be returning for her post-op to see how everything is healing late next week.
Thank you to everyone for your thoughts, prayers and help throughout our ordeal! Julia is a champ!!!
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