We apologize for the long interim between updates. These last few months since Mason’s first surgery have just been a whirlwind. So let’s go back to then…his first surgery.
Mason’s first surgery was on December 29th! That day was very stressful to say the least, but Mason came through like a charm. He was sedated for most of the day and he still had a tube in to help him breath. He looked like he had been hit by a train, but all the doctors and nurses kept insisting on how great he looked for having just gone through what he had gone through. By the end of the night he did give even the nurses a scare though. While they thought he was still sedated, Mason decided to roll over! He almost rolled off the bed! After that, he had to be restrained any time he was left in the bed alone. As he improved and progressed in his healing, he was moved from PICU to an intermediate care unit then to a regular room all over the course of 4 days. On the 4th day, his doctors came in to check him out while we were there and gave us an update. One doctor also decided to prove to us just how durable the distracters in his head were. Without warning, the doctor grabbed one of the distracters and shook Mason’s head… HARD! We all just gasped, and we swore that Justin was about to hit the floor, although he insists he wanted to hit the doctor instead! The whole thing didn’t phase Mason in the least! A good lesson to learn, but not one I recommend the doctor do to other patients! Overall, Mason spent 8 days in the hospital and then was released to go home. He would have been sent home after 6 days, but he developed a blood clot in his leg when they removed his central line.
Once home, then the “fun” started. Doctor’s appointments twice a week (the hematologist for the clot, and the Cranio-facial team for the distracters in his head). We also had to give him a shot twice a day for the blood clot and turn his distracters twice a day to slowly spread the bones in his skull. After 17 days, the extended part of the distracters were removed and we no longer had to turn them. All the turning created a 17 ½ millimeter soft spot all the way across his skull. The really cool part was that we noticed that he now had a round head. As you can see in the pictures attached (one is from 4 days before the surgery and the next is from the morning before we removed the extenders), the shape of his head had dramatically changed. Finally, after a month of shots, his ultrasound showed that his blood clot had completely cleared and we were able to stop giving him shots.
By then, it was February. Things had just started to settle down into some sort of normal-ness… yeah right!! February was just as busy as January was. My brother was promoted to Warrant Officer in the Marines and my sister had had her 3rd child. Since my mom, who had been staying with us to help watch him while he wasn’t allowed at daycare, was now away helping to take care of the rest of her family, we all took time off to stay at home with Mason. Mason started to really enjoy playing and crawling around. Then he discovered that he could crawl through the coffee table! Before we knew it, it was March! Mason started to pull himself up to a standing position, then he started “cruising,” as the physical therapist calls it, all around the coffee table. Now he is really getting fast at going around the furniture. He is getting braver about letting go just long enough to stretch and reach the next piece of furniture, but he hasn’t tried to walk solo yet. Along with all these new discoveries and accomplishments have come bumps, bruises and scares! All part in partial to any growing child his age. Thank goodness for his helmet!
We also decided that we should give Mason his own room, since he has decided that bed time, now means play time! One picture included, is an “in progress” shot of the living room during the room switching. All the stuff from the room was all over the living room and Mason was playing. Can you find the baby in all the mess?
And for his crowning achievement, Mason said, “da-da” tonight! Justin has been gloating all night! I am just happy that he is making the “d” sound because the speech therapist told us he probably wouldn’t make that at first because of his cleft palette! I guess he showed her!Look! I have shoes on!
Now as we near the end of March we are gearing up for Mason’s next surgery. On Wednesday, March 31st, Mason goes back in. This time to remove the distracters in his head. The doctors are expecting this to be an easier surgery than it was to put them in. They will also separate his pointer and pinky fingers on both of his hands while he is under anesthesia. After this surgery, both his hands will be in casts in order to allow the skin to properly heal. This is going to be the hardest thing for him to deal with. He is so active and mobile. Not being able to use his hands is going to be VERY frustrating for him. All in all, he is only expected to spend one, maybe two nights in the hospital this go round. As with the first surgery, I will be keeping everyone posted via Facebook and text messages.
All our love,
Allison and Justin
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