Surgery Day
On Monday afternoon, CHP called and told us to have Elizabeth down to the surgery center at 8 am on Tuesday. So, I let our families know about the time. I spent the rest of the day packing a few bags, because it was unclear exactly how long we would be staying, and trying to push back the increasingly mounting nervousness. I refused to let it overwhelm me. So, I popped some popcorn and watched some Christmas favorites on ABC Family. It took my mind off of the impending surgery and also gave me a few much needed laughs. Laughter is the best medicine after all, and how can you not laugh at Will Ferrell playing a giant elf in tights. Celtan went to spend the night at Aunt Lori and Uncle Steve's, and he was very excited. It was so nice to know that he would be taken care of and that we would not have to wake him up early to take him somewhere in the morning before we headed to CHP. He was also excited to be dropped off to Aunt Holly on Tuesday afternoon. He didn't seem the least bit bothered by the coming events.
On Tuesday morning, Jason and I picked up my mom and headed to the hospital. We arrived and headed to the fourth floor. We were quickly registered and taken back to pre-op. We met with the anesthesiologist team, discussed surgery plans with Dr. Jabbour (the ENT performing the surgery), and then waited to be taken back to surgery. Elizabeth was starting to get very restless. She had not had any food since Monday evening, and it was nearing 10 am on Tuesday. Jason, his dad, my mom and I all waited and passed Elizabeth around trying to soothe her. She especially enjoyed playing with her Frozen Princess Elsa wand.
The time finally came to take her back to surgery. I held her as we walked down the hallway that branches off to the OR and the waiting room. It felt like we had a parade following her, and I was so glad that Jason's dad and my mom were able to be here with Jason and I for added support. We all gave her a kiss, and then the nurse anesthetist wheeled her down to the OR in her crib. Dr. Jabbour said the procedure would be 60-80 minutes. As I walked away from Elizabeth as she was being wheeled off, I started to cry. I mean, I've been very weepy lately. Hell, I cried on the way to the hospital a little bit when I was singing along to the Wilson Phillips song, "Hold On," while it was on the radio. For me, nervousness is usually paired with tears. It seems to be a natural combination of emotions for me. Anyway, Jason, his dad, my mom and I headed to the Surgery waiting room.
It probably was a little more than an hour later, but it seemed like an eternity to me, before Dr, Jabbour came to the waiting room to talk to us. This was the third time that Elizabeth has been put under anesthesia, but no many how many procedures or surgeries it doesn't seem to get any easier. It's hard to watch them get wheeled away from you, it's hard to wait to hear how things went, it's hard to wait to see them. I talked with another parent in the waiting area who shared the same sentiments. It's hard as a parent to watch your child experience anything adverse, but in situations with special needs children it becomes a necessary part of your existence. Whether it is surgery, treatments, appointments, fitting in, extra steps in the day, it is a tough but rewarding road.
Dr. Jabbour is awesome. You can tell that he is very knowledgeable and skilled when you talk to him. I am so glad that he is on Elizabeth's team. He sat down with us and began to explain her procedures and surgery that he performed that day. He brought a sleeve of pictures to show us that he took while he was working on Elizabeth. Here is a list of what she had done, and Dr. Jabbour's findings.
1. She did have a Laryngeal Cleft, which he filled in with a special gel injection. This will, hopefully, reduce her aspiration while feeding, because the laryngeal cleft was basically a direct shot of food and fluids into her lungs. A laryngeal cleft is essentially a hole in your larynx.
2. He checked both of her ear tubes. The left ear tube looked great, but the right ear tube was blocked. So, he replaced her right ear tube. She has recently had ear infections in the right ear, so this should help the right ear to drain and prevent infection.
3. He also did a scope of her esophagus and voice box. He took some biopsies of the esophagus because it was slightly inflamed. He said that it was not super alarming, but since there was inflammation he wanted to biopsy it.
4. He was able to perform a Supraglottoplasty to help her laryngomalacia. Elizabeth has pharyngomalacia and larygnomalacia, which means that she has a floppy airway. This impacts her ability to breathe and swallow efficiently. So, Dr. Jabbour made small incisions to the floppy tissue at the top of the larynx. This should help her breathing and swallowing to be easier for Elizabeth.
5. Dr. Jabbour also found something unexpected during Elizabeth's procedures. He found that she has a Laryngeal Web, which means that she has extra webbing in her larynx. A normal larynx has about as much webbing as you have between your fingers, and it should look like a "V." Elizabeth's Layrngeal Web is a significant size. It can effect both breathing and speech, but right now Elizabeth is not showing signs that she is having negative effects from the Laryngeal Web. So, Dr, Jabbour did not do anything about it at this time. In the future, it can be cut down and thinned out if it is causing problems for her. However, this finding is one of many indicators that Elizabeth has that indicate that she may have Velocardiofacial Syndrome, which is better known as a 22q11 deletion disorder. So, he reinforced us bringing this up to genetics on our upcoming appointment.
Dr. Jabbour said that we could keep the pictures. We thanked him for his time and for his skilled work with Elizabeth. Since she did have the Supraglottoplasty, she was going to be transferred to the PICU. So, he gave us directions on how to get there. He said that she would be admitted for at least 24 hours so they could closely monitor her breathing and swallowing. She did really well during the surgery, and she did not need to be put on a CPAP machine, which was great!
We went up to the PICU and checked in. They gave us her welcome packet, and they allowed Jason and I to go and see her. She was very sleepy. So, my mom came back to see her briefly. Then, Jason, his dad, my mom and I went down to meet my dad in the lobby. Then, the five of us went to lunch. It was important to let Elizabeth sleep off the anesthesia. We ate in the cafeteria, and Jason's dad left after lunch. We were so glad that he was able to be here with us today.
After lunch, Jason, my parents and I took turns coming back to see Elizabeth. Only two people can visit her at a time. She continued to wake up, and she was very fussy when she would wake up. Her nurse, Athena, was great and she kept Elizabeth comfortable. Athena kept reinforcing the need for her to sleep, and she kept teasing my mom not to wake Elizabeth up. My dad and Jason headed home in the early evening, and mom stayed with me at the hospital. I was glad that she decided to stay.
Shortly after my dad and Jason left, Elizabeth started to get awake. So, we put on Frozen for her to watch. We watched it three times, even though she wasn't awake for all of it. When she was awake, she would kick her legs when Elsa sang "Let It Go." She ate a few teaspoons of applesauce and drank 8 oz of milk later in the evening. She was very cranky, and so we kept her comfortable by giving Tylenol and Motrin and just allowing her to sleep. Mom and I took a trip to the gift shop and to get some food. We ran into an old friend from Karns City, Breanne Gray, who works at CHP. She had stopped in to visit Elizabeth while we were out. We went back up to her room after we ate, and we met her nigh nurses, Chrissie and Sandra. They made a big fuss over Elizabeth, and she enjoyed that! She was still cranky so we gave her some more medicine and milk, and we laid her down for bed.
Elizabeth, mom and I went to sleep. I found myself watching her monitors instead of sleeping, and I remembered doing this in the NICU. It was a bittersweet memory, as I was reminded of both how scary that time was and the joy of how far she has come since then. I had just fallen asleep when I started to hear Elizabeth moving around in her bed. Then, a little bit later I woke up, because I could hear the nurses. Elizabeth moved so much that she blew her IV. They pulled it out, and the doctor in the PICU decided to not to put another one in since she was eating and drinking.
I woke off and on throughout the night checking on her, watching monitors, listening to the sounds of the hospital. Once again, Elizabeth has proven to be one tough miracle. She has done remarkably well with everything that she had done today. The doctors and nurses agree, and if she does well in her swallow study then she will be able to go home sometime on Wednesday. So, I finally rested well and was filled with hope.
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