Once Josiah was admitted to the stepdown, I was feeling much better about where he was as far as being stable goes. I thought he seemed to be doing much better. I mean, being off of oxygen, tolerating his feeds, off of milrinone, etc. were big steps, right? At this point, Josiah was still 2 months old…wow that seems SO long ago! He was originally scheduled for his pre-Glenn cath procedure on April 29th. After our first morning of rounds in the CSU, it was decided that Josiah would go ahead and have his cath done early since we were already here. The findings from the cath would hopefully give us a better idea as to what our next would be. Josiah was put on the list for his cath the next day (April 15th). Like with anything else, you have to sign consent before this procedure is done…signing consent is never fun. One of the fellows came by that same day to go over the possible risks and mentioned that the biggest risk for Josiah would be going under anesthesia. Later on that day, Dr. Anna Kaiser (one of the cardiac anesthesiologists and the one who actually put Josiah to sleep for his stent and Norwood) came by to go over what she would be doing during the cath. She was able to calm my nerves about the risks of the anesthesia (especially with Josiah’s decreased heart function). She said there wasn’t much to worry about (which was the complete opposite of what I was told earlier), and it definitely made me feel better that she had already worked with Josiah before…love Dr. Kaiser! Unfortunately Josiah was not able to be added on until Wednesday, April 17th….at 4:30 in the afternoon, talk about squeezing him in!
You can never steal too many kisses!
We were told before Josiah had his cath done, that he would recover back in the CICU. This was totally fine with us as it’s better to be on the more cautious side (especially with Mr. Josiah). Dr. Kim was the one to perform Josiah’s cath and he was wonderful, a very nice guy as well. He said that Josiah’s pressures looked “respectable”, they were not terrible but they were not great either. I guess they were a little better than what they were expecting though. Anthony and I got to go and see Josiah right at shift change. They had him in an actual room, 2117 (little did we know that this is one of the rooms we would become very familiar with). He was still intubated and looked a little swollen. He had a new nurse that we had never met before, Jenna, and she was very sweet. I’ll never forget she had placed his pulse ox on his ear lobe…haha, the first time I had ever seen it there!
Love these pictures of Josiah! Taken on one of the days we
thought he would have his cath but didn’t.
After giving goodbye/good night kisses, Anthony and I ended up coming back home. I called up to the CI that night before we went to bed just to check on our little man. Jenna said he was doing great and that they planned on doing a few c-pap trials to see if they could extubate him. The next morning when I called before we headed back up to the hospital, I was told they were able to extubate Josiah at 5 that morning. Anthony and I got to the hospital right after rounds were finished so we were able to go right back to see Josiah. His nurse that day was Danielle. This was the first time we had met Danielle, but she soon became another 2nd mommy/hairstylist to Josiah.
The reason for performing Josiah’s pre-Glenn cath a little early was to determine the next steps we should take. A little while after we got to the hospital and visited with Josiah, Anthony and I met with Dr. Wolfe. He went on to tell us that he and Dr. Clabby had met with one another, as well as discussed the different options that they believed to be in Josiah’s best interest, with several of their colleagues. Our 3 options were: 1) Put Josiah back on milrinone to help out his heart a little more, wait in the hospital for about 2 weeks and perform Josiah’s Glenn early. 2) Take Josiah home for a little while, allow him to get a little bigger and hope he can get his Glenn a little farther down the road. 3) Go ahead and list Josiah on the heart transplant list. Both Dr. Wolfe and Dr. Clabby recommended that they felt the best option would be #1. As much as we desperately wanted to bring our boy home, Anthony and I both agreed that option 1 would be in Josiah’s best interest. However, before we set anything in stone I asked if we could speak with Dr. Kanter and I of course planned on talking with Dr. Vidilefsky.
That afternoon I was able to speak with Dr. V on the phone and he agreed that the best thing for Josiah would be for him to go ahead and get his Glenn early. He strongly felt that this surgery would help his heart to not have to work as hard (since it takes a good bit of the workload off of the heart). He also reassured us that he had seen children go on to do ok with moderate heart function.
Around 6:30pm, Anthony and I were getting ready to head home. We figured we would just talk with Dr. Kanter tomorrow since his surgeries seemed to have run a little longer. To my surprise, right as Anthony and I were getting up, here comes Dr. Kanter walking towards our room. We chatted for a few seconds and then I asked him the question that would allow us to make our final decision. I needed to know how Dr. Kanter felt about performing Josiah’s Glenn early. I needed to hear from him that he felt okay and that he felt Josiah had a chance of doing alright. The CICU doctors could tell me all day long that they felt that doing Josiah’s Glenn was the right way to go, but ultimately they are not the ones who were going to be cutting open my son and performing surgery on him. I will never forget that conversation with Dr. Kanter. He told me that “it was a little earlier then he’d like to be doing Josiah’s Glenn”, but that he felt ok with doing it. I remember holding Josiah’s hand while talking to Dr. Kanter, and after he told me that he felt comfortable, I couldn’t help but look at Josiah and start to tear up. There was my little 2 1/2 month old baby, lying there looking up at me. I had one more question for Dr. Kanter and I somehow managed to ask him without losing it. I asked him how he thought Josiah would do. He answered by telling me that he “wished he could tell me Josiah would do fantastic” but he couldn’t tell me that, but he did say “I think think he will do ok”. And with that, Dr. Kanter reached out his arm and gave me a “side hug”…I was kind of shocked, but then I brought it in for the real thing. This conversation gave us a little bit of comfort and allowed us to give the doctors our decision. We would put Josiah back on milrinone, wait for 2 weeks, and then go on to get his Glenn.
Sweetest little boy ever!
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