CHLA Day 5

 First, lets go with the good news. The good news is that Elijah is off of the high flow oxygen and the medication that comes with it. This means that Elijah can eat and drink! Although his first meal consisted of only a few bites, his second meal was substantial. I am hoping that this will help him gain some strength and also help him rest more peacefully. The other good news, at least for now, is that they have stopped the epi drip. I say "for now" because his lactate levels have increased and there is a possibility that they may need to resume the drip. More good news, Elijah's sats have been great and in all honesty, he has never looked better color-wise. He is pink and the swelling is going down.

Now for the not so good news. Day 5 actually means post op day 4. That is important to know because each day signifies something. For example, Fontan patients often have a fever during the first 1-3 days post op. Elijah had a fever until yesterday. Fontan patients typically slow down their chest tube output during the first several days post op. Elijah has not slowed down his output. In fact Elijah has increased his output to such an extent that they are walking a very fine line trying to replace his fluids. We have had several doctors today express concern over the amount of fluids he is dumping. Dr. Starnes came by this morning and said that he believe there was a 80/20 percent chance that they would have to go in and redo the fenestration. Meaning 80 percent we don't have to do it, 20 percent we will have to do it. We thought this was positive. However, throughout the day, the dumping has increase. The doctor this evening went over his concern at length and said that he agreed that it was either 80/20 or 70/30 and that he believed that this was actually significant in that 1 in 5 or 1 in 4 that that they will need to fenestrate. He actually said that he was "concerned." This is a word I have learned to dread when it comes out of a doctor's mouth. Ugh. Please pray that Elijah's body will figure out his new physiology and in turn his out put will decrease. And pray that Elijah will be without pain and will be able to rest peacefully.

Day 3

Today was a better day for Elijah. He looks better in that his color has improved and he is warm in his hands and feet. However he is on a great deal of support to look that good. The doctors focused on keeping him stable and allowing him to rest from the events of yesterday. His little body needed to recover, so they didn't change much in his treatment. They were able to slightly lower one of his medications, but overall things stayed the same. He was able to go off the pacer today for a little while, but his rhythm couldn't quite stay regular so they had to turn it back on. His lungs are sounding better and he is beginning to cough quite a bit, which is actually good. He is incredibly vocal about wanting water and demands that anyone who comes into the room bring him some. It's so hard to see him so miserable. He isn't allowed to take anything by mouth right now.

Noah came to visit for the first time today. He had been asking to see Elijah since Thursday, but with the events of yesterday being so intense, I didn't feel comfortable having him here. Today was calmer, so Noah was able to visit. He handled the visit very well. He sat on the bed next to his brother and held his hand. At one point Elijah rolled onto his side and put his arm over Noah. He wanted to cuddle with his big brother. You could feel that Noah brought Elijah comfort and Noah was happy to see his brother. I was hesitant to let him see Elijah in this state, but I think that seeing him was better for Noah then just allowing Noah to imagine what was happening.

I am hoping that we have a calm night and that we are able to make some adjustments tomorrow, but I also don't want to rush him. Keep us in your prayers!

Fenestration what????

So first let me tell you that today sucked. I mean royally sucked. Basically, Elijah's numbers went completely wonky this morning and he made everyone, and I mean everyone, work for their money. At one point we had 20 people in his little room trying to figure out what was going on with him. Although they discovered that his fenestration had indeed closed (say whaaaatttt! who knew this could happen????), they agreed that they did not think that this was the problem. After a big pow wow and some serious argument, his team believed that if they backed off of his meds, added another chest tube to address the fluid in his lungs, and gave him some time, he may be able to adjust. So far, so good. They took a different approach and he has been responding well. His chest tube dumped a large volume of fluid and his breathing became far less labored. He is still being supported by a great deal of oxygen and quite a few meds, but he is stable. Hopefully, he will remain this way throughout the night so that he will be stronger in the morning. His night nurse is amazing so I am hoping he will continue to rest throughout the night.

Fontan Night 1

Elijah did okay over night. They had to medicate him every hour to keep him calm. They are restricting his fluid intake and man oh man did that make him angry. Every hour, once the medication wore off, he would demand his water bottle. The nurse was able to keep him calm until around 5am. He became incredibly agitated and was thrashing around. They had to restrain him and put him on additional sedation. This was so hard to watch. During all of this, his heart rate increased and his sats decreased. He also developed a fever.

During rounds, the doctors developed a plan for Elijah to address his heart rate/rhythm issues which includes both medication and a pace maker. They also discovered that Elijah has fluid around his left lung. They are going to start him on lasix to helpfully dry him out and therefore negate the need for an additional chest tube. Basically, we now sit and wait and see if the medication does its job. Hopefully they are able to keep him calm and resting in order to allow his little body to heal.

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.