The Good and the Careful

I will begin with the good news first regarding the surgery. But first, you have to check out this cute little poser before he got his Mic-Key button removed and his Gastrostomy closed.

The surgery itself went well overall. But I have to tell you, surgery is still scary for me. I have a really hard time accepting the fact that my baby is getting put under anesthesia and will be cut open. Plus, it's very hard to watch him be active and fall asleep within seconds.

We began in the room with some medicine to help calm him because he was very agitated and the doctors thought it would be better for him to not be so combative. It worked great. He was extremely calm and awake, just taking in everything. We gave him the medicine in the hospital room and then headed straight to the OR. Along the way, we stopped and dropped Mike off in the holding area (sounds funny, I know). But only, one parent could go to the OR. I volunteered.

When I got in there with him he was busy checking out the room and kept looking back and forth between me, the equipment, and all the people in blue scrubs and masks. I should mention that I was covered in blue scrubs as well, including the mask. I think that was kind of hard for Jayden because he couldn't see my mouth or smile. But again, the medicine kept him calm. I put him down on the table and they put the mask over his face. It didn't take long for the tears to start rolling down my face. I'm such a softie when it comes to him. Anyhow, within 30 seconds and about 3 cries, he was asleep and they sent me to the holding area where I cried some more. When I finally had it together, we headed to the waiting area.

It took forever for the surgery to start. I kept wondering if the pager was working and was thinking it couldn't be, since it hadn't started. Everyone else in the waiting area had pagers that were beeping, but then, mine started to beep. Surgery had started.

Before surgery started they had to run Zyvox through his IV because he has tested MRSA positive. When I put him on the table, they didn't have the medicine yet. So they had to wait for that medicine to come down and run through him for 30 minutes. That's why it took so long.

Surgery was over within 40 minutes and the doctor came to talk to us right in the waiting room. We asked lots of questions about how it went, how the incision looked, and how long we would be staying. Then he asked me if I wanted to see him. I jumped up and said yes! So off to recovery we went. As we were walking in, the doctor told me to keep my eyes forward because there were other patients where I was walking and their families weren't back there. He led me to a small corner area where Jayden was being held. He was still sound asleep and was receiving oxygen. Without the oxygen he started to desat, which they figured was because of the anesthesia and pain medicines. He eventually came out of that. The nurse asked if I wanted to hold him, which of course I did.

I sat down with him and held him close. He was very floppy as he hadn't woke up yet. I touched his toes and rubbed his hair and looked at how long his eyes lashes were. Then I started looking at his legs and I noticed purple dots from a marker on his legs. I was confused. He was having surgery on his tummy, so where were there markings on his legs. I asked the nurse and she didn't know either. She thought maybe it was where he would be strapped to the table during surgery and suggested I ask the doctor later. Well, I kind of forgot for the time being.

We headed back up to the room finally where he watched the whole way up. He was still very groggy, but trying so hard to see everything going on. This is his tiny incision. The doctor made the original hole into the shape of an eye in order to close it. Then he closed all four layers starting with the stomach, then the muscle, then the fat, and then the outer layer. All of the stitches are on the inside and will dissolve on their own.
Back to the marking on his legs....later on that day the doctor came up and told us he finally had a change to fully examine Jayden while he was asleep and wondered if we had ever noticed the size difference between his legs. We had definitely noticed and had mentioned it to our family physical, who was not concerned as he was using both legs fine. The doctor in Sioux Falls hadn't had a chance to fully examine him in almost two years because Jayden throws such terrible tantrums at the sight of any health care provider.

Anyhow, the doctor had actually found a tape measure and was measuring both legs in length and in width. It seems right now the legs are very similar in length, but not in circumference. The picture below shows the difference. The bottom leg is much bigger than the top leg.

The doctor began to explain what he thought was going and told us right away that he had already consulted with the Vascular Surgeon. It seems it could be one of two things at this point. Two years ago, when this all began, he had a central line placed in his groin for easy blood draws and for easy injections of medicine. Doctor thinks the venous vessel in his leg or groin was damaged from that. He figures it is either completely clotted off or is narrow, which has caused the blood vessels around it to bridge around it. There is still blood flow to the leg, but the pressures aren't equal, and they should be. He explained some positive and negative pressures based on how we breathe and that his right leg is probably having to work harder to get the blood back to his heart.

This picture is what the doctor drew on our board. It shows the heart at the top with the vessel coming down to both legs. In the picture, on the left, is the possible scenario that is going on. It shows the bridge bowing out to get passed the damaged vessel. Because the right leg (left in picture) is working so hard, it is bigger or more swollen. I feel like it's worse after the surgery. The doctor says I will think that because now that we talked about it, I will always notice it. I had already noticed this before (obviously).

What will we do from here? Well as of right now, the Vascular Surgeon does not think we need to stretch the vessel, nor did he want to dig in to him right after surgery. However, we need to watch his legs and make sure they are not changing in length compared to the other one, or getting any bigger. Possible tests that could be done would be injecting dye into his vein to see where it goes to see what the probem is or to do an MRI. But again, they want to wait for awhile, since he is not showing any symptoms or problems with his leg.

The other thing that could be going on is a Hemangioma, but the doctor is almost certain it is not. I heard the word "oma" and immediately went into a brief whirl wind of "cancer". Doctor said oma means lump, not necessarily cancer. I was relieved to hear this. But still knowing there is something wrong with his leg is bothersome to me.

The doctor also said that when children have problems with their central lines they can usually tell right away if there is going to be a probelm. Rarely, does it go on much later and present a problem. He also mentioned that some children have lost their leg due to the venous being damaged, but tried to comfort me immediately by saying that happens right away. Yuck, it still makes me sick to think about this.

We have to watch his leg closely and when we go back in two weeks, they will have more of an idea of what they should do from here on out. Doctor wanted to consult with the VS again. I do know that Jayden does not lead with that leg, but brings it equal to the other one. When I mentioned this, the doctor said that's because he's right handed, so he will automatically lead with that leg. Doctors almost always have an answer for everything, don't they?

Jayden, peacefully watching me outside his crib in the hospital. He looks like such an angel.

Anyhow, as of right now, Jayden is doing well. We are home and he is playing. He's seemed like himself since shortly before lunch. Now mom and dad just need to learn to not over react to his leg and to pray for guidance on what to pursue with it and pray the doctors know what direction to take, if any.

(After being interruppted many times during this post, I hope I covered everything.)