This week has been a total blur. Starting last Friday the 5th, when Wesley got his hearing aids. When he first got them, it took four lollipop suckers to bribe him to keep them in his ears. Four. And he decided to put all of them in his mouth at once. On the way home in the car, Wesley started talking, babbling, making noises, clapping his hands, and he found a duck that squeezed. He loved hearing himself. After we arrived home, I noticed they were constantly falling off his ears because the tubes looked too short and decided we needed to go back. Thankfully, Wesley's audiologist is AMAZING and squeezed us in on Monday morning before therapy! Now, since the newness has worn off, he pulls them out as soon as we start driving. Hopefully, THAT will wear off soon!
We left for the Children's Hospital early Wednesday afternoon. The trip down went well and after a horrible hotel experience, we finally were settled in a NEW, CLEAN, DIFFERENT hotel and ready for bed. We woke up at 3am Thursday morning and left for the hospital at 4:45. We arrived at 5am and were promptly checked in.
After we were triaged, Wesley's stress levels were increasing and he started crying, causing him to need a breathing (nebulizer) treatment before taking him back to the operating room at 7:20. They placed the
port in his chest for the enzyme therapy and fixed his umbilical hernia. The surgery was completed within the one hour time-frame the surgeon gave. The surgeon called and said surgery was complete and Wesley would be heading to recovery very soon. While we were waiting, the main anesthesiologist nurse, who was educated in MPS children, came out and advised me to not have any of Wesley's surgical procedures done anywhere but a Children's Hospital. The reason being that Wesley's airway has already started to thicken due to the MPS and it was very difficult to intubate him. She said it took a lot of pressure to place the tube and if someone wasn't trained well regarding children with issues like Wesley's, they could easily kill him.
After she was done advising us, a cardiologist arrived who moved us to talk privately in a consult room. There he explained that when Wesley was trying to wake up from anesthesia his heart had an episode of Supraventricular Tachycardia, also called SVT for short. His heart rate shot up to 269 in a matter of seconds and required a medication called Adenocine to be administered immediately. It took 10 minutes for the medicine to get his heart back to a normal rate.
They aren't sure what caused this episode but are suspecting a combination of anesthesia, his thickened heart valves, and stress on his little body from surgery creating a 'perfect storm'. The cardiologist said he wanted to delay Wesley's transfusion of Elaprase until the next day so they could monitor his heart to see if it happened again. He also mentioned that from now on when Wesley as surgeries, I have to mention the episode of SVT so they can have medicine ready to treat him if needed.
I was finally called back to recovery after an hour and a half. I found Wesley being held by a nurse named John, who was rocking him in a rocking chair. It's the first time I've seen him in recovery NOT crying. Wesley was sleeping peacefully in John's lap with his arms wrapped around John. I wish I could have gotten a picture, it was a very sweet moment. From that moment I knew John was a nurse at heart, because he genuinely cared for the children not just for the science behind nursing. He sweetly handed Wesley to me as I took his place in the rocking chair as he started explaining what had just happened there in recovery. I couldn't help but have tears rolling down my cheeks. My sweet little boy. How brave he is.
We were admitted to a room in the IMU which is Intermediate Care Unit; it is a step below the ICU. It's still one-on-one nursing, but the patients are more stable yet still require constant monitoring. Normally we would have just had a private room after this kind of surgery and for Wesley's first infusion, but the SVT episode elevated his status. The rest of the day was long and a even longer night as Wesley didn't really understand why he couldn't get up and out of bed with all those wires attached to his little body. He tried to do normal things and was frustrated when he couldn't or wasn't allowed to do them.
Wesley's heart rate monitor alarmed every few minutes as his heart would not stabilize. It didn't go past 200 again, but it would make drastic leaps from the high 50's to 170's easily. He just wanted to be held and yet he fought sleep like crazy. Wesley finally drifted into a good sleep around 1:30am after I requested the nurse give him some melatonin. I was glad we were able to get it administered. We've started using melatonin at home with Wesley as it is recommended for the restlessness kids with MPS have at night and it really does help!
Wesley awoke at 5am so I climbed into bed with him and he quickly fell back asleep. At 6am he was awakened for Benadryl and Tylenol as a pre-med to his Elaprase infusion. He took them and drifted back to a deep sleep. Wesley slept the whole way through the infusion. He did exceptionally well, his vitals didn't change at all and he showed no signs of reaction. It took 4 hours to complete.
After that, we waited on more doctors to visit on their rounds and check on Wesley. Got another visit from the cardiologist and he wants us to pick up a holster heart monitor from them in a few weeks. Wesley will wear it for a couple of days. Those drastic leaps and lows his heart was making through that night might be because of that 'perfect storm', so he wants to know what Wesley's more normal heart rate is in the regular circumstances of our everyday life.
Dr. Wesley is my favorite!!!!
With infusion #1 completed, the cardiologist said we were free to go!!! I am so exhausted!! Goodnight everyone! I am so so glad to be home and able to sleep in my own bed tonight!
Thanks for your prayers and support.
Have a warriors heart my friends.
Always with LOVE,
Wesley's Mom
