Surgery Tomorrow

April 25, 2013

OK, so most reading this will not see it until it is tomorrow but that title is the best I could do.

Yesterday and today have been full of ups and downs. I will cut and paste a copy of an email Doug sent out to family yesterday then go from there. I have not been able to blog everyday because Doug and I trade off who stays overnight at the hospital with Gideon and Doug doesn't think about blogging. Sorry.

"Gideon made it through the catheter procedure with a little excitement. He didn't go into cardiac arrest, but his heart went into arrhythmia 4 times to the point they had to shock him out of it. A normal heart can take the stimulation of a catheter just fine, but damaged hearts don't always. The reaction he had shows how close he has been to heart failure. They said he is quite a fighter.

They had more details about the construction of his heart and it seems the more they find out about the defects, the more they are amazed he is as healthy as he is.

They stopped the procedure short of what they wanted. Now they are going to keep him sedated overnight and perform a MRI tomorrow morning at 10:00 to gather the rest of the data from the upper end of the heart and arteries they need to make decisions on surgery.

He was a little restless this afternoon so they changed the medication up a little and he has been really peaceful since they got that adjusted.

I tried to send photos with this email, but I am at the hospital and the connection speed is awful. I will send them a bit later after Deanne and I switch places."

Last night they also did an ultrasound to see what is going on with his organs. Everything is there but some are in the wrong place as expected but that's no big deal. Gideon has what is called Spleenia, I think that is what Doug told me. Gideon has multiple small spleens that most likely don't function well so he will be on antibiotics for life. Not a problem.

After the MRI and a meeting with the surgeons and cardiologists a decision was made. Throughout the day we waited for solid info. One doctor told us that we would not be doing surgery until next week or later and that Gideon would need to stay in the hospital until then. I knew that was not an option. My kids are starting to come apart at the seams emotionally. One had a screaming nightmare last night that mom was gone and would not come home. Another is not himself and constantly cries for mom. And yet another punched a kid as school today. We could not stay in the hospital any longer than necessary. We tried to sway them and let us take Gideon home while we wait explaining that he has survived for 2 years like this. I think that put more fire under the doctors. About an hour later someone walked up and with great surprise said "surgery is tomorrow". I had three emotions. Excitement, scared and disappointed that I wasn't going home. I didn't know how to feel so I just cried. I have been doing a lot of that! I don't even wear makeup anymore.

What the doctors came up with is now a two part fix. Gideon will have one surgery called a "Glenn" with the possibility of fixing his one valve so it won't leak. The Glenn is a procedure that reroutes veins and arteries to bypass the heart and cause the blood to flow directly into the lungs. The blood will then go into the heart and be pumped out to the body. The next stage may take place in a couple of years as he shows signs of needing it. The basic heart structure will stay the same without 3 valves or the separation of the chambers. After the second surgery all of the blue or non oxygenated blood will go directly to the lungs and the heart will be strictly a pump to get the blood back into the body.

Gideon has been very anxious. He is supposed to be sedated but the meds have not been working. He is now on his third medicine and he has slept well since. Last night he thrashed around most of the night and today half of the day was the same. It took two of us at times to keep him from moving around so much to pull out the oxygen tubes and IV's. Gideon is one strong little boy! I am so sore from leaning over the bed for hours at a time and holding him down will great force. All Gideon wanted was to go home and have us hold him. It was hard to see him go through this. I know we have much more to come.

I have been told that our joys will be as deep as our sorrows. Gideon has brought great joy already but the sorrow out weighs the balance for now. I am so hopeful that we will find that joy in this life with Gideon. Doug and I had a conversation as I left the hospital tonight. We both confirmed that even knowing now the pain involved we would still make the same decision to adopt Gideon. He is a great blessing in many ways. He brings light and love to those he meets. Everyone that has the opportunity to work with him at the hospital love him. They all ask to come back and serve him on the next shift. One CNA came by to visit and play even though she was assigned somewhere else. He draws people in without meaning to. Our Gideon is a light to this world and we are honored to be called his parents.