When I walked in, there were a lot of people in her room of course. Her heart rate was now in the 50's and she was still having frequent apnea and would not rouse. Her head was the same and so neurosurgery was called. The on call came in and assessed the situation. The resident had done a tap of the shunt (where they pull fluid) and it didn't come easily.... there was high suspicion that she would need surgery but the on call insisted on trying to turn down her shunt setting first (faster flow). I agreed because of course if possible, I want to avoid surgery. But in my gut I just knew we were headed there.
After her shunt was turned down, I waited for improvement. Typically with Meagan, you see a severe and rapid reaction. She will immediately show you if it's going to help or not. Sometimes we give 1-2 hours to see how things go, which is fair, and then if things improve, we move on. If they don't, she goes to the OR. This time, we waited. And waited. And waited. 1, 2, 3, and 4 hours passed. Meagan was still having apnea and bradycardia...and then she started to writhe in her bed. She wouldn't take a breath unless I or a nurse vigorously rubbed her back, legs, and torso to jostle her in to breathing. She would roll and get puffy cheeks - I knew that meant she was going to vomit. Pressure puke, as we so "professionally" call it. And sure enough within mintues, she did. Everywhere.
By this time, Brian had made it back to the hospital thanks to a friend staying with the kids at home. Meagan continued to projectile vomit, this time it was a TON. The nurses rushed in and were wonderful to clean her up. They even wiped her down with pre-surgical wipes because it was obvious to them she would need to go to the OR. They also continued to monitor her vitals which were now deteriorating again. Her heart rate was between 48 and 55.... she was continuing to have apnea, and now she was vomiting. Her head? Still hard as a rock. I was getting very concerned and finally asked the nurse to please call the on call NSG (neurosurgeon) again. Word came back that he was in surgery with another case. The hours Meagan had sat in her condition started to wear on me - I felt he did not realize how bad she had been all evening....because if he did, I don't see how anyone with surgical knowledge or a heart could leave this child in this condition for hours on end. In all my years with her, in all my hospital stays and surgery needs, I had never seen her this badly ... I had never seen her in such a state with no relief to need the OR. It sounds strange, right? Praying for someone you are frustrated with to take your daughter to surgery.. let alone brain surgery. But she needed it badly. I knew it and it really needed to happen soon.
Finally, the on call came down to look at Meagan... still the same but deteriorating and still vomiting. She had so much pain - she was moaning and writhing in her bed still as if she was trying to get away from something or the pain and would press her head against the side of her bed. He agreed she needed to go to surgery...FINALLY. Meagan was prepped for surgery and taken to the OR. 1am. It was about darn time. Brian and I walked with the PICU nurses as they rushed her in, we signed the papers, and off she went. Then, we waited.
A few hours later, the on call walked in to our room. He explained that her top valve, the high pressure valve, had a rip in it and was not working correctly. He told us he replaced the top valve and that hopefully she would start to feel better. Shortly after, the OR nurses brought Meagan back to the room. She was rough, but, stable. Once all the vitals and checks and notes were finished, I crawled in to bed with her and snuggled. Her hair was matted with three sets of incisions and staples and gooey medicine, her body was weak from the anesthesia and her coloring was faded....but she was there. She had come back to fight another day and I just hugged her and thanked God for my sweet baby girl.
The next day we already saw improvements. Meagan's vitals were stable (for the most part), she was starting to talk again and her coloring was coming back. We decided it was safe enough to move her down to the neuro floor that afternoon. Her heart rate continued to dip a little lower than desired....but if my body had been under the pressure she had endured those 10 hours, I would be the same way. They decided to watch her overnight and if all was ok, she could be discharged the next day. I was glad because that meant 1. We would feel a lot safer taking her home...and 2. Dr. R would be back the next day so I could discuss with him the events of the weekend and concerns I had going forward.
This past Thursday, I was driving the girls to dance class - instead of our usual back and forth about school, or talking about something irrelevant, or singing loudly to music on the radio, there was an eerie hesitance in my car. The girls were randomly mentioning what they remembered from the week before. As I drove by the highway connector, I saw the very spot I was with Meagan laying on the ground vomiting and seizing while we desperately waited for an ambulance that never came. I saw the exits pass and remembered how each mile seemed to crawl by when I was driving. Then I happened to look in my rear view mirror. Meagan was smiling and laughing at something silly Maura was doing. She was singing along to the songs on the radio, and she was beaming. She had once again, defied a precarious situation, and come out strong and ready to take on life again.
Meagan's latest episodes seem to have a 4 week pattern... I'm hoping with this valve fix, that we have solved the stress on her body which seemed to precede or trigger these events. I will definitely be holding my breath until the end of September passes with no major events. Of course, even if it does, I don't think we will all ever be the same. These last few episodes Meagan has had greatly impacted our family and our security in her stability. We always promised Megs happiness, love, and life experiences. We will continue to do our best to ensure our promises stay fulfilled. But even if the next four weeks pass and we avoid another catastrophic event, I don't think I will ever be the same. The best I can say to that is....... it's complicated.
We love you Meagan and are thank God everyday that He pulled you through these last few months. We cannot wait to celebrate your big milestone of turning FIVE in the next few weeks!