It has been a long time since I have updated this blog. I suppose that is actually a good sign. We have been so busy living life, I haven't had the time to write about it! Elijah has been doing very, very well. He is full of energy, full of love, and full of attitude. I know that most people refer the terrible two's as being the hardest age during toddlerhood, however I have to disagree. Three is by far the hardest in the Coley household. He has his own mind and you had better see things his way or else! He is now potty trained and sleeping in the bottom bunk in a room he shares with his brother. Both Noah and Elijah love sharing a room. Although they fight all of the time, they love each other so very much and they depend on each other to be there.
In the last month or so we have had a bit of a bumpy road when it comes to Elijah's health. About a month ago, we were scheduled for a cath at CHLA. We did the pre-op the day before and arrived early the next morning for the cath. We went through the admitting process, through all of the evaluations, and got all the way to the upstairs bay. We had been there for five hours by this time and the doctor came back and said that we would soon be taking him back to begin the procedure. Twenty minutes later, the doctor returned to tell us that the procedure had been cancelled. The hospital was full. There were no beds left. It was heartbreaking. It is so, so difficult to emotionally prepare to hand your child off to a surgeon. The idea of having to do that again was painful. In addition to our emotions, we had to make plans for Noah. The poor kid had a melt down at school when Elijah didn't get dropped off with him. Noah knows that there is something wrong with Elijah's heart, but he does not fully understand what is happening. They rescheduled Elijah for the middle of spring break. This was both a blessing and a curse. We were happy to not have to take any more days off of work, but that meant that our spring break would be spent preparing for and recovering from the procedure.
In the end everything worked out. My sister was kind enough to pick up Noah and plan a fun day/night for him. He felt very special. Elijah was a trooper. The procedure went well and we were discharged that evening. Elijah has never been discharged after a cath. We have always had to spend the night. As for the results of the cath, those were not as positive as we would have liked. Elijah's heart function looks good. However, they explored the function of his lung a little more. They found that certain segments of his left lung are not filling "normally". This means that the pressures in his left lung are higher than they would like. Although we understood the anatomy of what was going on, we did not know what impact this would have on the Fontan.
This was answered last week. We met with Dr. Starnes, Elijah's surgeon, on the 16th. Dr. Starnes explained that although Elijah's pressures were higher than he would like, they are not considered to be too high. Once the Fontan is complete, Elijah's circulation will change. All of his blood will flow directly to the lungs. However, if the pressure is too high, his lungs could seize up and the blood could be redirected elsewhere. This could cause a host of other complications. In order to prevent this, it looks like they will do a fenestration. This means that they will pop a hole in the tube they utilize for the Fontan and a hole in his heart. This will allow for a "pop off" if the pressure is to high.
Although this is not the news I wanted to hear, it isn't the worst thing. Elijah can still have the Fontan. The difference will be that he may still be a little blue after. He will probably sat in the high 80s to low 90s instead of high 90s. They can close the fenestration in the cath lab later on, when Elijah's body can handle the change.
All of that to say, Elijah is scheduled to have his Fontan on June 11th. It's such a conflicting thing. I look forward to getting it over and done, and yet I dread the thought of what my little boy will have to endure. However, I am incredibly grateful that we have such gifted doctors and surgeons to work with our little boy.
