Surgery #7

The toughest 5 year old I know had surgery number 7 last week, and once again, amazed me and everyone who knows her with her strength and resilience. That’s not to say there weren’t (really) hard moments, because believe me – there were! But she is so strong and always pushes through! It’s never long before her twinkly eyes and sweet smile are back!

After lots of jumping through insurance hoops and scheduling communication, surgery was set for February 23rd, 2022.

My mom, Hudsyn, and I headed to Oklahoma City Monday night, February 21st so we could get up for pre-op appointments on Tuesday. We checked in with Dr. Smith and his residents and met and visited with Dr. Yeates, the pediatric dentist who would perform some dental work on Hudsyn while she was under anesthesia. We are SO appreciative of her willingness to help us get this done at the same time!

After all of the appointments and shopping were done, we had dinner with some of our best friends we don’t get to see very often. It was so good to hug their necks!

That evening after Barrett’s musical program where he was one of only 16 2nd graders chosen to play the bucket drums, my dad, Isaac, and Barrett headed our way.

The next morning, Isaac, Hudsyn, and I checked in at OU Children’s hospital just as it started to sleet and get very slick outside, while Barrett, Hoot, & Honey hung out at the hotel. I prayed and prayed that this procedure would not be postponed because of the weather – we had come so far and worked so hard to make this all happen.

After checking in, we were taken to pre-op where Hudsyn got to meet Ned the therapy dog and do some fun activities with the Child patient advocate. She painted and decorated a mask which she was then able to choose whether to use that day for surgery or take home. She chose to take it home – and now it sits on her dresser!

We met with the anesthesiologist, the nurse anesthetist, the doctors, the operating room nurses, etc. And, after determining that Hudsyn would likely have some major separation anxiety when it was time to head to the operating room, they gave her some “silly medicine” so she wouldn’t remember. I sure wish I could have had a dose of that…. It is NOT easy watching your baby be wheeled away on a hospital bed crying for you. One of the nurses was so sweet to let her watch a movie while she took her back – but still…

Before they took her back; however, while they were waiting on the medication to start working, she got so silly! We got some pretty good videos of her laughing and being goofy- trying to find the cat on her head from the Snapchat filter, making funny sounds, and just being super wild!

We were told to expect around 2 hours max for the full procedure – including pre and post-op. Only Isaac and I were allowed in the waiting room, of course, and I think I drove him crazy with my pacing and anxiousness the whole time! Once she was in the operating room, Dr. Yeates was able to complete her part of the procedure including x-rays of her tiny mouth and five cavities that had formed where her teeth overlap in her cleft. She came to the waiting room to talk to us, assured us that everything was going well, and Dr. Smith would begin his portion, the pharyngeal flap (p flap) procedure soon.

Dr. Smith, the oral/maxillofacial doctor she has been seeing for her cleft lip and palate since shortly after her birth, was able to successfully use tissue from the back of her throat and bridge it to what would be her soft palate – if she had one. Essentially, he created one for her – although it looks and operates different than ours! The fact that her palate did not extend back that far made it hard for her to close off air flow at the back of her throat, causing extra nasality in her speech.

From what I understand, there are numerous ways to perform this procedure – hoping for the same results. The chosen procedure typically depends on the actual makeup of the patient’s cleft and palate. As I have mentioned previously, in other blog posts, Hudsyn’s palate end(ed) before the uvula (hangy thing) in the back of her throat. Dr. Smith chose to create a “bridge” using tissue from the back of her throat and connecting it to the back of her palate. Although she no longer has the large wide open area in the back of her mouth leading down her throat and esophagus like many of us, she has a bridge in the back of her throat. She is obviously still able to breath as normal; the air just comes around the sides of this bridge rather than straight up and down. It really seemed to take her no time at all to get used to this part of the change. It will, however, require specific speech therapy for an estimated 8-9 months in order to eliminate the nasality as much as possible.

Swelling (which could potentially cause airway issues) was a major concern for this procedure, so they stitched her tongue to the side of her cheek in case of any airway issues. This would allow them to pull her tongue forward should her airway become compromised. This was absolutely her least favorite part of the entire hospital stay – and I can’t blame her. Not only was the back of her throat swollen and feeling different, but also her tongue had basically been pierced, was really swollen, and she couldn’t move it as freely as she would have liked. I cannot imagine how mad I would have been about that.

In order for her airway and vitals to be monitored closely, this procedure required a night in the hospital in the Pediatric Intensive Care Unit (also referred to as step-down care). This simply allowed for a smaller nurse to patient ratio. They didn’t know they’d have self proclaimed “nurse mom” and worrier deluxe there to help them ;). Isaac joked that when the door of room 6144 opened, everyone either rolled their eyes, looked the other way, acted busy, or literally turned and walked the other way – yes, I actually had a nurse look right at me and turn and walk away, and quite quickly I might add!!

Barrett hung out with Hoot & Honey at the hotel – and they occasionally convinced him to leave to get a bite to eat! He just wanted to play play play! Sissy wanted to FaceTime him a lot – and he would make funny faces over and over again to cheer her up.

No suction of any kind was allowed in hopes of keeping the stitches intact, so she ate and drank what little we were able to get down her from an oral syringe with a long catheter like tube on it. This took me back to the first days of her life where we learned to feed our sweet newborn through a syringe and tube! I have to say – we caught on much quicker this time around and the supplies have come a long way.

We struggled to get her to drink, take her medicine, etc., for the first 24 hours. Once we were able to get orders for an anti-nausea medication and give the stronger pain medication that has made her sick in the past, however, she began to come around a little. The first 24 hours were really rough. Coming out of anesthesia, feeling pain, wondering what the heck was going on, being force-fed medication, listening to the beeps, buzzes, and noises, having her blood pressure taken repeatedly, and just wanting her mommy were really hard and confusing.

The amazing nurses we had – both day and night shift – brought her tons of options of things to try to eat and drink. She tried tiny bits of numerous things through her ”feeding syringe” (as she calls it): water, Gatorade, chicken noodle soup (which was a definite no), chocolate “Boost,” popsicles, vanilla ice cream, apple juice, and even chocolate ice cream (which she usually LOVES). She wanted none of it. Poor baby girl just was not a happy camper. I was amazed,
however, that she never batted an eye after waking up from anesthesia. She watched the iPad and laid in that hospital bed for hours – wide awake. For the most part, she didn’t want to be messed with – but she didn’t want me to sit in the chair across the room either – I had to be on her bed, holding her hand. Sweet sweet girl.

Finally, late that evening we decided she had to get some rest – and the only way to make that happen was to take the iPad – our kids don’t typically get to watch them unless we are travelling – so she was really enjoying that time! We told her it needed to be charged and turned on the TV in the room for a bit but it didn’t take long snuggling with mom for her to go to sleep.

Although they offered not to wake her when it was time for pain meds, I begged them to. I know all too well what it is like to let the pain get away from you and it’s so hard to get it back under control. So, we were up every 3 hours alternating pain medications through the night. She wasn’t happy about it, but always went quickly back to sleep and I’m so glad we didn’t let the pain get away from us!

Waking up the next morning was difficult – her lips were still swollen her tongue still stitched, and she was definitely still a little confused about what exactly was going on. However, when the doctor came in to remove the stitch – although she fought him like crazy – he was able to remove it and within minutes she was like a new little girl. **Side note – due to my hysterics, he had offered to allow her to go home with the stitch still intact if it would ease my mind. We could then snip it when we felt comfortable. They were all great and listened to my concerns (even when muffled through sobs). They were determined to help us in any way possible and he even assured me that it wasn’t unreasonable for her to stay another night if that was what needed to happen. The doctors and nurses all, however, assured me repeatedly that she had surpassed all of their requirements to safely be discharged from the hospital and they had no reason for concern. Honestly, it’s SUCH a blessing that Isaac is the opposite of me when it comes to worrying and being anxious because he was just ready to get the stitch out and go home – just like Hudsyn. His mind did not go directly to the worst case-scenario (like mine), and he knew that getting her out of there would make a world of difference. I, on the other hand, was fine with the stitch coming out at that point, but felt like staying another night would make me feel much more secure. I had spent the entire previous night wide awake watching her monitors (blood oxygen level, respirations, blood pressure, etc.) while her chest moved up and down to the point that I was literally driving myself insane.

We were discharged a couple of hours after the stitch was removed but decided to stay one more night in Oklahoma City just to be close if we were to need something. If you know me – you know that means that I (not so much we) decided to stay one more night – and I was so glad we did. We were able to hang out at the hotel room and Hudsyn even got to FaceTime her class! So sweet! We didn’t have to worry about jumping right into the car to try to rush home, and the ride home the next day was so much smoother than I imagine it would have been directly after discharge.

I’ve said it plenty of times, but I’ll continue to say it… when God chose this feisty girl for this journey – he knew exactly what he was doing! Within 48 hours of having major surgery, Hudsyn was playing in the bath tub at the hotel with a smile on her face and plenty of jokes to be told. I am so very blessed to be her mommy and I know there are so many things God is teaching me through her.

Barrett had a basketball tournament in Borger on Saturday and Sunday and sis wanted to go so we loaded up all the soft foods and hit the road to support him and the “Sharks.” I’m not sure she watched a single minute of basketball but she sure enjoyed the ipad – which allowed the rest of us to watch big brother and his team! 😊 She was such a trooper!

Then, Monday she went back to school for a few hours and Amy’s… she was so glad to be back!

We have SO many wonderful, supportive, praying people in our lives and our girl is so loved!! She received numerous calls, videos, FaceTimes, gifts, cards, treats, toys, books. flowers, and so much more! She couldn’t believe it was all for her!

Today, we went back to see Dr. Smith for a check-up and he was super impressed with how well she is healing. She was so brave and opened her mouth like such a big girl for him to see and then again when one of his students came in! We have still been doing lots of food and drink through the syringe; but, he said we can quit that! She is to continue soft-ish foods through the weekend and then she should be good to go – within reason! She is the bravest girl I know!