Wow! The fated day finally came and went. It wasn't easy and it's still not, but I'm relieved and Desmond is on the mend. I'll start from the beginning and try to give some details, but this may still be brief because I am bone tired. We came to New Orleans on Wednesday and checked into the wonderful vacation rental my sister booked so we would have a place to cook, shower and rest during our stay at the hospital plus a few days after we get out. The long walkway to the gate was the perfect spot for this little walker to get some practice and for momma to get some good pre-op photos.
|He loved all of the different plants in the garden.|
|Desi had to point out everything.|
Wednesday morning Desmond was pretty amazing considering he hadn't had any solid food since dinner the night before. We checked in at New Orleans Children's Hospital at 10 a.m. and were in a room waiting for surgery by about 11. Rhonda and Willie, Desi's grandparents on his father's side, arrived right as I was having to pin him down so the nurse could draw his blood, which I'm sure was not a very comforting site for them. But that was soon over and we all got to just hang out with him for about another hour before they called us back for triage. In the mean time, he fell asleep and was given some "giggly juice" so he would be nice and relaxed when they had to take him away from me. He never even woke up.
They took him back at around 12:30 and told us that the surgery wouldn't actually begin until about an hour later and that it would be an hour and a half to two hour long surgery. So, we were hoping to hear something from them by about 3 p.m. They came and told us when they made the incision, which was at 1:20 p.m. We all sat together, my mom, Willie, Rhonda and myself, and talked about what a great little boy he is.
Not even an hour later the door to the waiting room opened and there stood Dr. McBride, the neurosurgeon, and Dr. St. Hilaire, the plastic surgeon, telling us that everything was over. They said everything looked exactly as it had in his scans, sagittal suture completely fused from front to back. All of the other sutures looked fine. He did have to have a blood transfusion (thank you Elihu!!), but that is normal. They said it would be about an hour before they would have him cleaned up and awake for us to go see him. This is when I began to get impatient. It took longer than an hour and I started to get worried. Just as I was about to lose my patience and go ask someone what the holdup was, they called us back.
When I walked in the recovery area a nurse was trying to give him a bottle of apple juice. He saw me and started crying. When I came over and took over with the bottle he was content and started to fall back asleep immediately. It makes a mamma feel good! He was not swollen badly yet and they didn't shave his head one bit, so you could almost not tell he had anything done. They were ready then to wheel him to his room, so we all followed him up and got settled in pretty quickly. He went straight into my lap and stayed there for a few hours.
|The poor little fella was so exhausted!|
Dr. McBride said when we lye him down in the bed to make sure he lays flat on the back of his head to help flatten out that bump he used to have back there and to prevent him from getting any flat spots on either side of his head, but it's pretty hard to do. I never really thought about it before, but he has never been able to sleep with his head straight. The bump in the back has always caused him to turn to one side or the other. So he has a little donut pillow to help him keep it straight and hopefully he will learn soon to do it on his own.
The first night he would start to bleed behind his right ear when we laid him down, so they had to put a bandage around his head and it looked like a big, white turban. Still nothing to worry about, the nurses said. Some bleeding is normal. That night they came and took his vitals every hour for the first four hours and then for the next four hours they came every two hours. The nurses were great and tried their hardest not to wake him. I woke up every time they came in, but I was able to get back to sleep pretty well most times. At about 2 a.m. Desi woke up and was chatting and smiling and playing peekaboo with the nurses. It was such a relief to see those dimples again. It felt like it had been an eternity.
|Nana enjoys one of the few times Desi allowed himself to be out of my arms.|
He eventually went back to sleep and so did we. We were all up by 6:30 and mom ordered our breakfast to be sent up with Desmond's. Desmond ate most of a banana some yogurt and drank a carton of milk. He has always been such a champ when it comes to eating. The swelling was a lot worse that morning, especially on the right side. His eye was mostly swollen shut and he had a mean shiner. They said it would probably migrate to the left side of his face too and not to be surprised if the other eye swelled shut as well, but fortunately that never happened.
We spent most of the day just hanging out in the room with the Desmonster. He was playful and sweet most of the time. The doctors and all of the nurses have said they wished all of their one-year-old post-op patients could be as awesome as he is. We played bubbles a lot!! That is hands down the best thing I brought with us to the hospital. He points to them at least ten times a day and says "bubbles!" He even said "pretty bubbles" once!!
Today, the swelling has gone down significantly. His right eye is not completely swollen shut and the bruising is starting to fade already. He had to have another blood transfusion because his red blood cell count was down, which, again, is normal.
|Desi and I chill while his wonderful nurse, Sabrina, |
finishes all of the paperwork for the transfusion.
They said after the blood transfusion that he will feel a whole lot better and he MIGHT be able to be discharged tomorrow if his blood count stays up. So keep your fingers crossed for just a little bit longer that we get to get out of this hospital and move on to healing in the comfort of our very own vacation rental for a few days and then Nana's house on the coast.
I'll try to update the next time I have some good news. I want to let you all know that I could not have made it through all of this, from the very beginning when he was diagnosed, without each and every kind word and encouragement. From my close friends and family to people I haven't seen or talked to in a decade and complete strangers from all of the craniofacial organizations and their supporters, I am humbled by the love and outpouring of support. Thank you so much...and keep it coming 'cause this isn't over yet.