Oh man...this day...it was quite the day. It was so much more than a day. The MRI and the sclerotherapy procedure was on this day, November 9, 2015. However, there were preceding doctor's appointments to ensure Seiden's health and vital signs, days leading up to doing pre-op stuff at home, and a good six weeks of recovery. We are nearly three months post-surgery and Seiden still has a little bit of a bruise on her right cheek. This procedure, it put us through the ringer.
The reason we had to go through so much before this procedure is because Seiden had an MRI before Dr. Mac did the sclerotherapy procedure. All her doctors wanted to make sure she was healthy enough (we were in the middle of cold and flu season) and that all her vital signs were stable. Then, the few days before her procedure, the doctors wanted us to keep her as confined at home as possible because we needed to keep her healthy and free of any type of cold or flu that might have been floating through the air. The part about keeping her home and confined wasn't so much a problem. But the doctor's appointments we had preceding the procedure were hard on her. We were in the office for nearly three hours and she was poked and prodded and had tests run on her...I would say it was borderline traumatic. All more than worth it...but man...it's so hard to see your little one so upset. Especially when you know that this is all for her and trying to do everything we can to help get these cysts dissolved. The main reason to ensure her health and the stability of all her vital signs was because she was going to be under anesthesia for right at four hours. Maybe less and maybe more, it just depended on how long the MRI took, how long Dr. Mac talked to us in between the MRI and the sclerotherapy treatment, and how long the sclerotherapy treatment took.
We did the exact same thing for this procedure as we had the other two times. Drove down on Sunday night to Mimi and Pow Pow's, got up in the middle of the night for a snack, got to the hospital to check in, and my parent's met us there about 8:30. This time, one of my precious nurses that I had while I was recovering from my C-section after having Seiden came over to see us before we got all checked-in to the hospital. She works at Harris and works the night shift, so she was just getting off work and wanted to come visit with us and see Seiden before she headed home and we headed upstairs for surgery pre-op. I just love this precious friend of mine. We wouldn't be where we are today if it weren't for the amazing nurses and doctors Seiden and I both had while we were in the hospital and NICU. We visited with our sweet friend for nearly an hour, and then, before she left to head home to her family, she prayed over us. She prayed over us just like she had prayed over me the day I was discharged from the hospital and Seiden was going in to surgery just a few short hours later. She is an amazing women and I don't think she knows how much she really blesses us! Her sweet prayer over Seiden put us so much at ease and gave us so much peace.
Just like the past two procedures, Seiden played and was having so much fun with all the toys in the playroom at Cook's. There would be doctors and nurses in and out of her room, checking on her, taking her vitals, and just making sure that we were all ok and she wasn't under any kind of stress. It was pretty smooth sailing and Seiden was happy, just like always. She's just such a trooper. This little angel just continues to amaze me. The things she's been through and continues to go through and she just takes it on with such strength and determination. This will be the 5th surgery she's had in her short 2 years of life. And, she's been under anesthesia seven times. That's a lot for a little one. Anyways, this procedure was going to be the same as the others, but with an MRI before the procedure so that Dr. Mac could use those images to see exactly how well the other two procedures had worked and see what all was left. During the actual sclerotherapy treatment, he would use the sonogram machine for his imaging to see exactly where the cysts were located so that he could inject them with the medicine. After the initial check-in and all the pre-op stuff, it was time for Seiden to be taken back and be put under anesthesia. This is probably the hardest part. She was given some sedation medicine, but that doesn't keep her from knowing she's being taken away and being left with doctors and nurses. Thankfully, I was able to go back with her while they put her under anesthesia. I just laid my head down next to hears and held her as best I could until she fell asleep. After that, I walked out of the room and joined Cody and my parents back to the waiting room for MRIs. While we were in there, Dr. Thomas (Seiden's surgeon who performed the major extraction of the cystic hygroma when she was 4 days old) was walking down the hall. Cody just happened to be out in the hall on the phone with work stuff when Dr. Thomas walked by. Cody popped his head in and I joined them out in the hall and we just chatted while Seiden was having her MRI. While we were out in the hall talking, the nurse called our name that Seiden was done with the MRI and Dr. Mac wanted to visit with us before he started the sclerotherapy procedure. Now...listen to how awesome this is. My parents came to get us since we were in the hall talking and Dr. Thomas says, "I'm going to come to!" Ya'll, he was on his way to get his day started with surgeries and appointments and he stopped what he was doing to come with us to talk to Dr. Mac about the results of the MRI and the next steps for this sclerotherapy procedure and any possible treatments following this one. How amazing is that?!? Dr. Thomas has seen Seiden through so much and it just meant the world to us that he would come in and sit with us to listen to what was going to be happening with Seiden's future as far as more surgeries, treatments, and medicines go. We have just been so blessed by amazing doctors!
Dr. Mac told us that this treatment was going to be a lot more invasive than the previous two had been. Simply because the last two treatments he had gotten the bigger (macro) cysts. He can only use 10mL of medicine each treatment. So, those bigger spots took a lot more medicine. And, he wanted to tackle those bigger cysts before he got down into getting the smaller (micro) cysts. He also told us that he was so very pleased with how Seiden had been reacting to the treatments and to the medicine. They are so hard on her...and on us. But, this was just even more proof that we were doing what God wanted us to do with seeking out and being open to alternative treatments to getting these cysts gone. We talked for a few more minutes and then he said he needed to get back so that he could start on the sclerotherapy procedure. He told us to expect an hour to an hour and a half this time because of how many injections he would have to make. We said our goodbyes and our prayers and went down to the first floor so that we could pass our time going to the various places Cook's has to keep parents and families busy while the wait.
The nurses are so sweet to call every so often while she was back having her surgery. They called when she was just starting, when she was finished, and then they came to get us so we could go back with her during recovery. Recovery is so hard. She is in so much pain and is still so sleepy from the anesthesia. And...she's also so thirsty and hungry. She actually came out of this a little bit better than the second time, but not near as good as the first time. She had just been under the anesthesia for so long... The first thing she asked for was apple juice. And man, did she chug it?!? Which, in hindsight was not a good idea. She kept it down and about 30 minutes later, they released us and we headed back to the Harrison's house. On the way there, Seiden got sick. I'm not sure if it was the mixture of driving and the motion of the truck, the anesthesia, and the apple juice, or just the fact that this was just a lot on her little body, but all the apple juice she had drank came up. After that, she was fine and we got to the Harrison's house a few minutes after that happened, got her changed, and everything was fine. She took a nap and woke up a couple hours later and wanted to play. But, that didn't last long either. From the time she woke up from her nap until early morning that next morning. She fell asleep in the crib, then wound up in bed with me, and then mom and I made a pallet in the playroom floor and I slept on the floor in there with her and mom slept on the couch. It was so scary. I had called the on call nurse about the fourth time Seiden had gotten sick to tell her what was happening. This had never happened any other time she had been under anesthesia, so it was very concerning. The nurse told me just to watch her super closely and to call if anything had changed. She told me it was normal for this to happen after being under anesthesia, but it was still something that needed to be monitored. Jenny was her name, and she told me that she would call me first thing in the morning to check on her. Mind you, that next morning was a Monday and she had kids that she had to get ready for school. Jenny called me at 7:15 that morning to check on Seiden and see how our night had been. I could hear her own kids chattering and doing the normal "getting ready for the day" things. And in between all that, Jenny took the time to call me. And mornings are crazy when you're a mama! I told her we had been up a lot during the night, but that Seiden had slept for a solid 5 hours (yes...we were up every hour until about 2:30). She told me that was a good sign, but asked me to call her and let her know how our day goes. Thankfully, Seiden didn't get sick anymore and just proceeded to sleep for the better part of the morning,,,snuggled up in my lap. It was bittersweet watching her sleep on me. She woke up about 1:30 and wanted to eat lunch. I made her a PB&J and she ate every bite of it. Not too long after that, she fell asleep again. By the time it was dinner time, she was acting a little bit more like her normal self, so mom and I decided to take her on a little outing to get some fresh air and just get out of the house. We ran a couple of errands and then picked-up dinner and headed home to the Harrison's.
The next night was so much better and so was the night after that. By Wednesday, we were ready to head back home. And then, it wasn't so great. On the way home, Seiden got sick two more times. It was all fluid, but still, it was continuing to happen. Thankfully, we had come prepared with bowls and towels (thanks to Mimi and PowPow) just in case that happened. We got home about 8:00 and proceeded to go about our normal night-time routine, I was even planning on going back to work on Thursday. Cody and my dad had already been back since Sunday night, but us girls were going to try to get back in the groove and Cody was going to stay home with Seiden on Thursday and Friday. Well, we woke up Thursday morning and there was no way I was going to go into work. Bless Seiden's heart, her sweet right cheek was so swollen that her right eye was almost swollen shut. She had woken up crying because it was hurting her so bad. I called into work and stayed home again with her. As the day went on, the swelling went down a little. But, she was still so swollen...for a couple of weeks after that happened. In fact, when Thanksgiving rolled around, she was still really bruised and had a little bit of swelling. It was so hard to see her like that and know how much pain she must have been in. And still, she played, wanted to go and do things, and was her happy, sweet, strong, brave self.
I am honestly so glad to be writing this so many months after this last procedure. I think it makes me more thankful for the place we are at and the progress we have made with Seiden. She continues to amaze us and we are just in awe of her. Through everything she's been through, she still continues to shine light and love wherever she goes and she takes things as they come. She handles this so much better than I do! I can tell you one thing, we have relied so much on all of your love, prayers, and support. From the time we found out about Seiden's cyst when she was 19 weeks along in my tummy, you have gotten us through some of our hardest and darkest times. God has blessed us with so many wonderful people, doctors, nurses, caregivers, friends, and family, we just couldn't be more grateful. So, I am so happy to have written this post and to be able to move forward with so many more beautiful things that Seiden has done and accomplished in her sweet, precious life!
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