Fontan Day 1

So today was THE day. I have decided that the hardest thing in life, as a mother, is handing your child off to complete strangers fully knowing that they will cause your child hurt and pain and yet also fully knowing that there is no other option. This was by far the worst experience so far. I have been through this several times already and having a child that can voice his fear and pain is like having someone reach into your heart and tear it to pieces little by little.

All of this aside, the procedure was a success. The did have to give him a fenestration, but other than that, it was a typical Fontan. They were able to pull his breathing tube before returning to the floor, which was good. However, his heart is having rhythm issues and he is on a pace maker. They have restricted his fluids which is making for a very unhappy little boy, but they are working to keep him calm with medication. Right now he is resting comfortably. Lets hope for a restful, healing night.

Fontan Here We Come!

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.

Check Up

I know I have said it before but let me repeat... Elijah is amazing. Brave. Strong. We had our cardio check-up today. These are incredibly long, tiring, and often frightening days. It's not just the doctor's exam. It's the X-ray. It's the echo. It's the vitals. And the EKG. and let's not forget about the waiting. For hours we wait. And through all of that Elijah was a trooper. And you know what? He is doing great! The doctor was impressed by his attitude and his strength even so far as to tell us that he believes that this is the strongest he has seen Elijah. 

Elijah is in the 5th percentile for weight and on the chart, barely, for height. His echo looked good and his pulses were great. His pulse ox continues to read between 82-84 and his lungs are clear. It was a good day. Dr. Sklansky wants us to return in March for another check up and Elijah will most likely have a cath in April or May. We are looking at having the Fontan in the summer, although that depends on his growth and the opinions of Dr. Sklansky and the CHLA doctors. 

All I know is that I have already gotten a great Christmas present (besides the iPad my mom bought me 😉). My baby is doing well, thriving actually. And in truth, that is all I need. 

So So Long

I guess in this world, no news is good news! I made it a goal to update this blog over Thanksgiving. It has been so long. We had a great, although short, summer. The boys got to explore and travel a little. I got a promotion to Assistant Principal. That has been an adjustment, but overall the boys have handled the new routine well. Elijah, except for a few colds, has been well. They are projecting his Fontan, the last of the three stages, to take place in the Spring or Summer. I dread even thinking about it. He is active, vibrant, and feisty. This kid knows his mind and isn't afraid to tell you. He is currently throwing a ball at me and telling me that he is going to "play basketball and then football." He is amazing.

Home sweet home!

I realized, after a friend pointed it out, that I had not updated the blog to let everyone know that Elijah came home. We had an intense, but short stay at CHLA. Elijah did not like staying the night and he gave Dion a really hard time. No one slept. But once the doctors came by and did their rounds in the morning, they gave us permission to leave! Elijah is doing well, although I am a little unsettled by his breathing. He still pants when he moves around and I thought that would be better after the cath. Hopefully it is just a side effect of being intubated and it will get better with time. We have a follow up appointment with Dr. Sklansky tomorrow. Wish us luck!

Post Cath

Elijah is out of the recovery room and in his room. He is sleeping comfortably. They ballooned his stent and coiled quite a few collateral arteries. For some reason his body fights the coils and figures out how to go around the coils, so they had to add coils to arteries they had already done in the past. He still has a bunch of collaterals, most of which are too small to coil. The doctor described them as a nest. Elijah has a major one that is also supplying blood to his stomach, therefore it can't be coiled. Overall, it seems like things went well and we are on a positive path. His pressures were good and he still looks like a Fontan candidate.

Pray for a good night and discharge tomorrow!

Cath Lab

I hate days like this. I hate getting my baby up in the middle of the night. I hate driving in the dark to the hospital while he cries in the backseat. I hate going to admissions and signing all the paperwork. I hate the multiple waiting rooms they filter you through as they get vitals and ask the same questions over and over again. I hate trying to keep a scared little toddler distracted. I hate trying to smile through everything I hate so that the scared little toddler thinks everything is okay.  I hate taking him to the surgery room and handing him off to the nurses. I hate waiting in a silent room for someone to come in and give me an update. Ugh.

And yet through all of my hate, I do smile. I do laugh and play and sing. I do because I have to. Because that is what that little boy needs. But man oh man is it hard. Please keep our little boy in your prayers today. He went into the cath lab about 20 min ago (7:30am) and he will most likely be there for the next 7 hours or so. He will be spending the night at CHLA.