Super Emmie started her most recent battle getting fueled for the journey to Atlanta. Krispy Kreme’s Superhero Day. Donuts energize every time. Okay, the sugar does.
Then it was off to pre-op.
Super Emmie surveying the land for evil lurking below.
Ah, all is well with the world.
She did great with pre-op and only had one stick to get a blood draw. Then it was off to get Greek pizza and a quick view of an art museum before it closed and then we were out for the night.
The next day, bright and early…actually, it was really early and really dark, we made our way to the hospital.
Mark and I both were at peace. We knew that God was in control and we were trusting Him above all else. We were constantly getting messages throughout the morning and day with beautiful verses and encouraging words. It was hard not to feel His presence through one of the hardest things we have ever had to do.
Sock play was a good distraction but didn’t keep her occupied for long.
Before they took her back, they gave her versed to calm her and help her not remember leaving us.
Let’s just say it did the trick. At one point her neurosurgeon, Dr. C, was talking and Mark was holding her. She reached over to me and started laughing hard. Then she started squeezing my nose and laughing. It was so hard not to laugh while he was talking about the serious stuff. At another point, she started singing and laughing.
Soon it was off to surgery and mommy, daddy, grandparents and Zoe all waited.
Surgery took about two hours. When we went to the consult room to meet with the surgeons, we looked up on the whiteboard and someone had written,
“You are the God who works wonders;
you have made known your might among the peoples.” Psalm 77:14
Another reminder that our God was in control.
Dr. C, the neurosurgeon and Dr. R., the general surgeon came in and were very positive. They were able to get in and do what needed to be done. Dr. C., feels that he got all of the plexiform neurofibroma that was causing the kyphosis but we’ll know for sure after her MRI in June. That tumor was about the size of a grape or walnut but given the size of Emmie, is pretty good size for her age. Dr. R was able to work at getting some of the plexiform neurofibroma that is in the soft tissue area. Because that plexiform is not causing any issues, Dr. R didn’t want to risk any damage to the nerves and so, only did very little.
While we waited for Emmie to finish up in recovery so we could get settled in PICU (where we were told we would go), we grabbed a bite to eat. As we were settling in, to eat we got a call from Recovery. Emmie was doing so well in recovery, Dr. C saw no need for her to be monitored so closely and would be going to a regular room.
We quickly finished eating and headed to her room as fast as we could.
She had been crying and was sobbing when they brought her in. I’m pretty certain that was Dr. C’s first clue that she didn’t need extra monitoring. As soon as they got in the room, she saw me and started crying. They asked me if she would calm down if I held her….um, yeah.
And mommy’s heart was full.
After getting settled in. Emmie was able to nurse and get some undisturbed sleep.
And when supper rolled around, she perked up and stole our fries.
The other neurosurgeon who was also in surgery popped in and said he wouldn’t be surprised if Dr. C would let Emmie go home the next day. What?! We were first told 3 to 4 days. Then two to three and now we were looking at leaving in about 24 hours. Ah, we were excited but cautiously so. We knew things could change and a lot needed to happen before we could go home.
Also, the day of surgery brought a new brace. She had broken the second brace (the first was broken after four weeks…the second only took a week of Super Emmie before breaking). Dr. C was gracious and didn’t make her wear it right away though.
She had morphine at 2 the day of surgery but after that it was all ibuprofen for pain management and she was tolerating foods so well.
At some point during the afternoon, while I was holding her, I felt a warm spot on my stomach. Her catheter had come loose and her diaper leaked a bit on me. Another step towards going home.
While Mark and I didn’t sleep well as we rocked her and kept our eyes on the monitors, she was relatively comfortable through the night and able to sleep some.
The next morning brought a very happy and very alert Emmie.
We were actually having a bit of trouble keeping her occupied and keeping all of her various monitoring cords out of her way. The neurosurgeon who came in to see her thought she looked great but said Dr. C would be in that afternoon to make the call about when we would leave next.
Eventually, after a bit more play and eating (like a whole pancake and half a banana), she managed to get all of her monitors popped off and her nurse decided to just unhook her. She told us about the playroom and off we went. Emmie had a blast before getting sleepy again. So, back to the room we went.
Dr. C came in while Mark was getting lunch and Emmie was cruising the room. He first looked for her in her crib and then started asking where she was. He was so shocked to see her walking around and smiling. And he told us outright that he really didn’t see any reason why she couldn’t go home that day. We agreed!
Orders were put in and Emmie got her final iv dose of antibiotics and we packed up and headed home.
But first…a nap was needed.
(FYI, the right side of her face is a bit swollen but one of the neurosurgeons told us that that can sometimes happen and should be gone in a week or two).
She was so happy to be home and rewarded us with this (36 hours after surgery):
This girl. She is a fighter. A super hero. And she continues to amaze us every day!
God has blessed us with one amazing little girl. We praise Him for her quick recovery and her fighting spirit.
From what we’ve been told the rest of the kids fared well! We had some amazing volunteers who willingly gave their time and watched our kids or cooked meals for them (and us). We received such amazing blessings of gift cards and snacks to prep us for this time! It was such a blessing and warmed our hearts to know others were thinking of us and willing to help. Now, when we are home, those blessings are continuing and making it so much easier to relax and enjoy my family and focus on Emmie’s care. Thank you so much to everyone!
So, what’s next? Are we done? Will she have more surgery? Is the kyphosis corrected? Stay tuned for another thrilling blog post in the Adventures of Super Emmie and her fight against Neurofibromatosis!
