Roller Coaster

During rounds on Sunday one of the cardiologists told us we would experience ups and downs similar to a roller coaster. Well he couldn't have been more right.

Colt slept all night on Saturday so we thought surely he would wake up well rested, in great spirits ready to conquer the day! We were wrong. He was extremely agitated and unhappy. When we went for our morning walk he cried pretty much the entire time. Every time he tried to nap someone was coming in for one thing or another. We ended up giving him some extra pain meds which seemed to make him much more comfortable. It was such bad timing though because his much anticipated visit from his girlfriend and BFF was that day. Emmy came around lunchtime and he was happy but nowhere near his normal. He had also already had pain meds and was kind of in a zone. She still brightened his day, I just wish he would have felt better and maybe she could have gone with him on a walk. He slept most of the day after that and also stopped eating. His vomiting came back as well. By the end of the day, the poor guy looked terrible. His eyes were purple and sunken in and he just didn't look right. His nurse and I were concerned he was dehydrated, but the doctor on the floor assured us he was fine. We were able to take him on a ride and go outside for a bit. It was great to get him some fresh air! But, we were very glad to see Sunday go.

He slept all night again Sunday night and woke in a much better mood. He still wasn't himself and wasn't eating. He was drinking more which was good. All of his labs came back great and he indeed was not dehydrated. The great news was his chest tubes had stopped draining and it was time for them to be removed!! He had to get an xray before and after, but they were removed around 1:30 and both X-rays were great. The relief was almost immediate after they were out. He was also able to come off his oxygen. He still didn't want to eat and continued to vomit afterwards so we were getting concerned. He took a good nap finally and seemed better after. He wanted to watch the food network for some reason and during he saw a commercial for Little Caesar's and said he wanted pizza! We were relieved he wanted to eat, however pretty sure pizza is not part of his low fat diet. He did get some low fat lasagna for dinner and ate quite a bit!! He was able to keep it down so we were very happy about that. We went for another long walk after dinner and it was so nice not to have to haul around the IV pole, and chest tubes!! On our way out of the unit, the poor guy said "I go home".

Just now as I'm typing this we are trying to get him to sleep and he's much more talkative and laughing. What a great sound. Hopefully tomorrow will be another "up" day!
















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Days 3 & 4

Friday started out pretty mellow. Colt was in pretty good spirits, more talkative and his great night nurse figured out his vomiting issue. They typically give a medicine after surgery if the child leaves intubated to help with the acids in the stomach and to prevent nausea and vomiting. But since Colt was extubated in the OR he didn't get it. So long story short, she started him on it and wa-la! No problems. He started out eating and drinking small amounts and began to feel better. He walked again that morning all the way to the fish tank, which was a pretty long distance. Cousin Bryn happened to show up at the right time and was able to walk with him that afternoon. What a great thing! As soon as they got to the fish tank, he was like a new person. He was happy, smiling and playful for the first time all week. He then got to take a wagon ride downstairs to the bigger aquarium. Ever since, he has been like the old Colt. We are so happy he's acting like he normally does. He's still uncomfortable of course, but he's getting used to it.

Day 4

Today has been more of the same. Great mood, still eating and drinking. Yesterday his chest tubes did start with a milky discharge which is typically from the fat in the food he eats. So he is now on a low fat diet. Thankfully he doesn't eat a lot of fried and fatty food, but it's also kind of hard in the hospital to have many choices. Good thing he can have goldfish and gummies though :). But on the bright side we moved out of ICU today, yay!! So we have our own little private room and we can all stay together! So as long as he keeps doing well we are just waiting for his chest tubes to stop draining and we can go home. Unfortunately there's no real timeline. They could stop tomorrow or 5 days from now. So, it's just wait and see from now on.

Again, thanks so much for all the support. We feel so loved and it's been so comforting having all of you praying for Colt and us.






















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Post op day 2

Thursday was much better for Colt. They moved his room so that he is in a much quieter room and is able to get more uninterrupted sleep. He got quite a bit, which was great. Drew was even able to get some rest. I made it to the RMH around 11 last night and felt like I had slept for days this morning!

He still couldn't keep anything down so they switched his meds from zofran to phenergan. It seemed to work better. He drank some ginger ale and ate half a chicken nugget. It stayed with him for a few hours but then he got sick several times again overnight. We will keep trying today.

It was also a big day in that he was able to go for two walks! It was such a huge milestone and very emotional for me. He cried the whole time because I can only imagine it was painful, but he kept at it and didn't give up. We are hoping to make it to the fish tank today!!

He also had more wires and monitors removed. He had two monitors called cerebral oximeters on his forehead that were taken off. Also a type of IV called an arterial line was removed and lastly a transthoracic line. So now he's left with two chest tubes and two IVs. And a nasal cannula for small amount of oxygen until he gets chest tubes out. We are hopeful that he may be moved out of ICU tomorrow if he can eat and have no issues with food and chest tubes.

Hoping for a great day today with lots of food and walking!












































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Fontan

Wow, what a long three days. On Monday Colt had his cath. We had to be at Duke at 7am. They allowed us to go back with him until he fell asleep which was great. They called us every hour to give updates on how things were going. It did end up taking a little longer than planned because they had to coil, or block off some blood vessels that he didn't need. So now he has platinum in his veins! He did great and we all stayed together in the hospital Monday night. I was surprisingly calm and felt at peace about his surgery the next day. His nurse woke us at 5:30 on Tuesday to get him ready and we took him to pre-op at 6. We were supposed to also get hourly calls to update us, but I wouldn't call what we got updates. Then on hour three, we didn't get a call. So, you can imagine how we felt. I waited thirty minutes after we should have gotten the call and asked the admin to please try to find out what the problem was. So about five minutes later the OR nurse called and said "sorry I'm a little late but he's still in surgery." Ugh!! I was so mad. I mean, no $h*t lady! So from then on I let Drew take the calls so I wouldn't get too emotional, and I proceeded to get some pepto and drink most of the bottle while waiting for it to be over.

Finally we got the call that it was done and waited to talk with the surgeon. He said everything went smoothly with no complications. We did let him know about our "updates" and he said he would take care of it.

Most of yesterday and last night they kept Colt sedated but he would wake frequently very upset. So in the middle of the night they switched his meds and that helped tremendously. Drew and I stayed at the RMH to try an get some rest, which we did finally. Tonight I am staying with Colt since they have changed their policy and now one parent can spend the night, woohoo! Crisis averted, haha.

Going back to this morning, we got to the hospital at 7:45 to be here for rounds. Colt had been up since about 6 and boy was he mad at us! He didn't speak to us for over an hour. I swear he was mad because we left him alone. But finally he forgave us I guess. The day progressed and they removed his catheter, one chest tube, pacing wires and his IJ which is internal jugular, or an IV in his neck. They let him drink some water in the afternoon and he almost jumped off the bed to get to the cup. He guzzled a lot down and then ate some jello. Unfortunately it didn't stay with him long. He still hasn't been able to keep anything on his stomach. Hoping tomorrow will be better. Otherwise he is doing great! It has been a long sleepless night so far though. His roommate is very sick and has to have around the clock care and attention. So that means it's always loud and the lights are on :( I think his tummy is also upset since he hasn't pooped in three days. We both will doze off for about 10-15 minutes at the time. But the poor thing just can't stay asleep. I can imagine trying to sleep with the two chest tubes he still has is very difficult.

We can't begin to thank all of you for all of your love, support and prayers. They were most definitely heard and answered. Please continue to keep Colt in your prayers and that each day will be better than the last.

For some reason this crazy app isn't letting me upload any photos. I'll work on that for the next post.

Ready Freddy??

Colt and I have a little banter or saying we say to one another whenever we leave the house, get in the car or really, get ready to do anything. I say "Ready Freddy?", and he replies back as fast as he can, "Ready, Ready!". It's pretty cute of course. Anyway, I figured that would be fitting for this post.

We made the trip to Duke on Thursday. He received a chest X-Ray and exam and everything looked perfect. Since it will be three weeks on Sunday since he has had a fever, and his pneumonia is completely gone, everyone feels like it is perfectly okay to proceed with his surgery next week. The past week has been a hard one. Lots of emotions have come into play. We had Thursday looming over us, and the anxiety of if they post-poned the surgery, how in the world would we keep him well for the next 4-6 weeks if we couldn't do it this time? Then, if they didn't post-pone it, the anxiety and stress of the surgery. So, now we are dealing with the latter obviously. Like I said in an earlier post, it's been two years since we have had to deal with this. It is really easy to "forget" about your child having to have a major surgery when he seems so healthy and active. It is even harder because he is older, and he will not understand what is going on. I hate the thought of having to leave him at night when he is in ICU, because we are not able to stay with him then. What if he wakes up in the middle of the night, or in the morning before we get back and we aren't there and he is scared? He won't understand why his mommy and daddy are not there with him. I'm hoping maybe I can get away with sleeping in the waiting room, so at least I will be there if that happens. I know there is no point in worrying and I have been trying to give it to God. Stress never really bothered me much. But, ever since I found out about his heart condition while I was pregnant, it's been almost like a disease. I just can't shake it sometimes. I really think that is a major reason why I went into labor at 33 weeks. Sometimes I break out into hives. It was so bad this week, I literally made myself sick and lost 7 pounds in two days. But, the last few days when I feel it creeping up on me, I try to relax and pray. It has helped a lot. Hopefully I will make it through the next few days :)

The good news is, I got my cast off! I now have a lovely boot. But, it is great since I can take it on and off, I won't have a problem showering when we are able to stay with him at the hospital. It's also much easier to walk in. Colt's Granne,(Drew's mom) came down and stayed with us all last week which was a huge help. She cleaned and did laundry and helped with anything else we needed. We also had a visit from my sister and Bryn last weekend. They had so much fun together! My mom is here this weekend, and is also helping to make sure the house is clean and laundry is done so that we can pack for the 1-2 weeks we will be gone. And, so that when we come home, we won't have to come home to a dirty house.

We have to be a Duke bright and early Monday morning at 7am for his heart cath. Then, he will stay over night and they will probably come get him about the same time on Tuesday for his surgery. I know everything will be just fine and we will be home before we know it! Thanks again to everyone for all of your love and support.

Rough week

Well it's now a lovely 2:05 a.m. and we are just getting settled into our suite for the night. At the hospital. Ehh. Remember how I said we were trying really hard to make sure Colt didn't get sick? Well, he got sick. He's had just what we thought was a cold and/or allergies for about a week. But Friday night about 3a.m. he woke up with a 103.7 fever. We decided to take him in on Saturday morning to get checked out and everything seemed ok, probably just a virus of some sort. But after alternating Tylenol and ibuprofen all day, his fever spiked around 8 at 104.3. So we called the doctor on call as instructed when we left earlier in the day. He wanted us to come to the ER to get checked for flu or pneumonia. And here we are with pneumonia. They wanted to keep him overnight mainly for observation due to his medical background. So far he's doing well and surprisingly his oxygen levels are good. We are hoping to go home tomorrow. We had a big weekend planned including family pictures, my step mom's birthday and uncle's house warming/engagement party. Unfortunately we had to cancel the pictures and of course not celebrate the others. Obviously Colt's health takes precedence. This sickness also means his surgery will more than likely also be delayed. It's frustrating but there's nothing we can do about it. Oh, did I mention I broke my foot on Monday?? Thankfully I have a great husband who has really helped out a ton with daycare duties and doing things around the house. Everything that involves standing really. Life has a funny way of reminding you sometimes that you are not in control! We could use a few extra prayers for the coming weeks. Hoping this one is better than the last!

Reality Check

Those of you that know me well, know that I am a huge procrastinator. So, it should come as no surprise that I have procrastinated on writing this post. For many reasons really. One, it has been well over a year since I updated the blog. Second, I guess I just don't really want to face the fact that our false sense of "normalcy" is about to end. The first 6 months or so of Colt's life was such a whirlwind, with him being born at 33 weeks and then undergoing two open heart surgeries by the time he was 6 months. He has done remarkably well. He has exceeded his doctors expectations in every aspect. We always knew he would, and never believed anything otherwise. But, here we go again. We knew this time would come. Even before he was born we knew he would need a series of three surgeries. But after things seemed to calm down, we have had almost two years to the day of "normal". (Minus the quarterly check ups and the occasional rush to daycare after getting a call that he looks blue.) We will make our way back to Durham for a heart catheterization on April 21 and he will have his surgery the next day. This surgery is called The Fontan, and the surgeons will connect his pulmonary artery to his inferior vena cava. He will once again be on a heart/lung bypass machine and will be in the hospital between 1-2 weeks. He will then be out of daycare for a minimum of 6 weeks, so he can recover and to make sure his chest bones have time to heal. We will not be able to pick him up under his arms for that same amount of time. We are very optimistic that he will come through this surgery just as well as the last two, and he will be back to normal in no time! I do have some anxiety about how we will be able to entertain him in the hospital and how we will keep him from pulling out his chest tubes, wires, etc. However, I know all the doctors and nurses have been there, done that and everything will be fine. The only thing that may prevent this surgery from happening next month is if he gets sick and has to go on antibiotics. We have less than a month to go and are hopeful that will not happen! Please continue to keep him in your thoughts and prayers in the coming weeks that he may come through this surgery stronger than ever.