Post-Op Day Fourteen: Catching Up

           Two weeks ago today my son had open heart surgery. Even now, after sitting in a hospital for two straight weeks, its hard to believe. I think sometimes that I'll wake up and this will all have been a dream and that Jack will get to be a regular kid. That one day I will be able to watch him run and play in the yard without making him take breaks and watching to see if he's turning blue. That a cold won't be the scariest thing in the world. That a cold will just be a cold.
            But as far as I can tell, I'm not dreaming. But the good news is that God is in control of our little world. And I'm quite certain that He has a BIG plan for my son. If my sweet boy has to be sick and has to go through all of this then at least we can rest in the promise that our God is sovereign. He rules over all people and all things and is in absolute control.
            ....And who wants to be normal anyway? Normal is totally overrated.

<3--------------------------------------------------------<3

Post-Op Day Fourteen


         I am so terribly sorry that I fell off the blog wagon this past week. I have just been staying with Jack as much as I could since he's been awake a lot more and so I haven't had much extra time. I will do my best now to get you guys up to date on what's been going on around here.
        First of all, we're still in the CICU and probably will be for at least a few more days. We've hit a few more bumps along the way but overall he is doing better and it seems like we are finally headed in a good direction. He has a killer team of doctors and nurses who are working diligently to fix him. Last night when we walked back in after shift change, there was a "class" going on where Dr. Jackson was brainstorming with the nurses about how to get Jack's sats up. 

 --- Here is the board she was writing on. ---

        In my last post, we were on day eight and Jack was battling an infection. His lungs were junky and they weren't able to extubate as soon as we had hoped. Jack was put on several antibiotics and since then that infection has completely cleared. They tried for a PICC line in his arm but it failed. A couple of days later they tried again in the other arm and failed again. At this point our poor baby looks quite similar to a used pin cushion. Thankfully. he was knocked out both times and didn't feel the pokes. He does have bruises but they are healing now. The day after the second try for the PICC, the doctor decided to just go for another central line and take out the old one. The point of all of this was that his original central line had been in way too long and was in danger of causing an infection but they needed a good line that they could use to draw blood gasses and give his meds. They finally got the new CL and took out the old one. But before they took the old one out they had sent off blood cultures from that line. Those cultures came back positive for an infection in the blood which was terrifying because when the doctors talked to us about infections they always said that the only infections that scare them are blood infections. They assumed that the blood culture was contaminated because of the line being so old but they couldn't be sure for a couple of days. So, we had to live with that added fear for a few days but it turned out that there was not really any infection in the blood, or anywhere else for that matter.
        His lungs finally started to look clearer and his sats were hanging out in the 50s and 60s but then they discovered a new infection this past weekend, similar to the original one we had just gotten over. Plus he had spiked a fever that we couldn't seem to shake. So, extubation was put off a few more days. BUT, finally on Sunday morning, after nearly two long weeks, it was time. They pulled the tube out and turned the vent off. It was a BIG day. Jack fussed all day because he didn't like the new nasal cannula that they put in his nose and the tube that was still going down his nose into his belly. He tried to pull those out every chance he got which meant me and Josh spent most of the day trying to keep his hands away from his face. He also still didn't feel great because of his fever and so he threw a few little fits. We watch the sat monitor all day praying it would be different this time and he wouldn't have those scary dips in the numbers when he got upset like he did last time he was extubated. It was a long, intense day but this time it was better.
         Over the last few days Jack has kept his fever. He has been tested for every infection and virus that can be tested for and all have come back negative. The doctors seem to think he has some kind of respiratory virus that is keeping his temperature up and his lungs junky. He is coughing hard and throwing up a lot of thick mucus. He will start coughing and then gag and then throw up. Poor baby. The fever is really high and persistent. 
           We are also dealing with withdrawals from all of his pain meds. Our doctor explained to us that 100% of babies who are on the pain meds after surgery become addicted and then withdraw when they are coming off of them. He is now off of the two pain meds he was on and is now on Methadone and Ativan to help ease the transition. The withdrawals have been hard to watch because he shakes and seems really miserable. This morning the doctor decided that the withdrawals were too intense and she decided to go back up on the Methadone and ween him a little bit slower. Hopefully we'll be fully done with the pain meds in a day or two. What's really crazy about all of this is that before surgery, I was reluctant to even give Jack any Tylenol. His dosage was 2.5 mls and I usually gave him 1ml. 
            Just a couple of days ago we started having another problem. He was having a strange side effect to one of the drugs that he really needs. He is on a drug called Sildenafild which is actually Viagra. It dilates the blood vessels in his lungs which helps his heart work more efficiently. Jack really needs this medicine to help with his saturations but this weekend the nurses started to notice that his little "man part" was always standing up when they changed his diapers. They told the doctors about it and they told the nurses to watch it for a while. After several hours of this, they realized that something was wrong. They called the urologists who then came down to look at it. They told us that if it continued to be erect for more than four hours at a time it could possibly cause permanent impotence. The only way to solve this problem was to give him a shot right through his little man part. Funnily enough, when Josh was signing the consent form for them to give him the shot, he just happened to glance in Jack's diaper to check one last time and guess what? It was down. I guess Jack heard what was coming and was not about to let that happen. Haha


  ---------   So, where do we stand right now? 


               Jack still has the massive fever that we can't seem to break just yet but hopefully soon. He is getting fed through an NG tube that goes into his tummy and is tolerating feeds well but won't be able to try a bottle until after his fever breaks and they test him to make sure he can swallow good. He is finally awake and alert for most of the day and his eyes are clear, blue, and beautiful. He is watching Spongebob on the Ipad which we have rigged up to hang from some medical equipment over the side of his bed. He is also playing with toys and being held for most of the day just like he would be at home. No smiles yet but I am determined to get the first smile although Dr. Alten is in a contest with me for that. All of his surgical wounds are pretty much healed and his scar looks great. Tomorrow we even get to start putting onesies on him. :) 

Here's me and Dad holding him. Precious moments. <3

Here's him playing with his giraffe rattle named Geraldine and then watching Spongebob. <3

               Our goal is to break the fever and get him past this virus. Continue to ween him off the meds and Nitric and then eventually ween him down on the oxygen and get rid of the high flow nasal cannula. It's pretty likely that we'll go home on oxygen but we can certainly handle that and it should only be for a couple of months. 
               Jack has been on SO many meds and antibiotics that it will be imperative when we get home that we keep him as healthy as possible. If he were to get sick it would be so much more difficult to get him over it because he has had such heavy doses of so many different antibiotics...Not to mention his heart issues and recent surgery. We will really have to enforce the "no kids" rule for a while and probably keep him at home for a good while. Believe me, nobody hates that more than I do because I LOVE to get my sweet boy out and show him off BUT I will make any and every sacrifice to keep my boy healthy. 
              
-----------    You're talking about when you come home...but are y'all ever coming home?


                Yes! We will be getting out of here eventually. When? We don't know. Right now we have to focus on the fever. Then he has to get off the meds and Nitric. Then we have to ween down the oxygen. Then we have to make sure his sats are living in the high 70s to low 80s consistently. Then we can go out to the floor. Then we can focus on learning to take bottles regularly again. Then once all of that has been accomplished we can talk about going home. Once we get home a home health nurse will be assigned to us who will come and set up our oxygen system and teach us how to use it. She will come every so often to make sure we have what we need and are doing ok. Then we'll start our frequent visits to clinic to make sure everything with his heart is working right. 


----------    Now is definitely not the best time to ask me about the Fontan. After this crazy ordeal, I am currently refusing to come back. Me and Jack are formulating a plan to run away to Mexico to live on the white sandy beaches. NO MORE SURGERY for my boy. Maybe by the time he's two and a half years old I will reconsider. Maybe. 

            <3---------------------------------------------------------<3

"For dominion belongs to the Lord and he rules over the nations." Psalms 22:28

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

"“As the heavens are higher than the earth, so are my ways higher than your way and my thoughts than your thoughts." Isaiah 55:9