As you may have guessed we're back home! You can always tell when we're home because I suddenly have no time to write. But with the last post ending so abruptly and obviously there's more to our journey seeing as the heart catheter was unsuccessful. So, I'm going to dial it back a week and get you caught up.
Recovery
After speaking with the surgeons and getting the bad news that we would be coming back for an open heart surgery in the near future my mom and I began to text the family to let them know the results. Even though James was out of surgery we had to wait until he was ready to move to the ward before we could see him. They do this because there is always the risk that the person will not wake up from the anesthetic so they don't allow family to see them until they know they're awake and stabilized. This is pretty routine so we waited where we were told... and waited, and waited. Usually this process only takes about an hour but after an hour and a half had gone by I was starting to wonder if they had forgotten about us or if something had gone wrong. So I headed back into the cath lab "holding room" (for lack of a better term) and the charge nurse told me they hadn't forgotten he just was being slow coming out of the anesthetic but should be ready soon. As I headed back to my mom I DID catch a glimpse of my baby boy. He was breathing but still pretty out of it. That being said he didn't look nearly as bad as he had after his open heart surgery. We ended up waiting another 15 minutes or so and then got to follow James and his nurses up to the ward where we got to see our room for the next 24 hours.
The Ward
Considering the NICU is a large room with no privacy, rows and rows of beds with very little space for the parents to sit, and nothing but florescent lighting, the ward felt like a 5 star hotel. We had a spacious room to ourselves with a private bathroom and a window that looked out on to the main corridor of the hospital where they have the massive atrium. There was so much natural light they never even put the room lights on! It was amazing. Plus there was a cot for me to sleep on! I actually got to stay with my baby!
James looked so much better this time then he had after his last surgery in December. He wasn't on a ventilator, he was swollen but not nearly as bad as before, and the only thing going through his IV was saline to help rehydrate him. No Fentanyl. No Morphine. Just a little bit of baby Tylenol. He was still pretty groggy too so he slept most of the afternoon. I took a short nap on the cot while he slept and my goodness am I glad I did. The afternoon went well, but I had no idea what was coming that evening.
For recovery James had to lie on his back completely flat for a minimum of 4 hours which meant I still wasn't able to feed him since that would require moving him. By the time he woke up later that afternoon he was full on HANGRY! I don't blame him. I get hangery (angry due to excessive hunger) when I don't eat for a few hours, let alone over 12 hours! We did our best to pacify him and finally at 4pm we were allowed to move him so that I could feed him. He ate like I was never going to feed him again and then we heard a burble. Yup, he was pooping. That's a good sign! Means everything is moving around properly. But this time it smelled like he had pooped out a dead cat. It was awful! We figured it was from the anesthetic. So I passed baby off to my mom so she could transfer him to the bed while I covered up before changing him. As she went to put him in the bed he pooped again but it came exploding out his diaper, all over the bed, the floor, my mom... and it looked weird. I went to change him while my mom cleaned up and I realized it wasn't just poop. There were clots of blood in his stool. That's never good. Called the nurse in and she asked me to just monitor his future poops and gave me his vitamin D for the day.
Considering the NICU is a large room with no privacy, rows and rows of beds with very little space for the parents to sit, and nothing but florescent lighting, the ward felt like a 5 star hotel. We had a spacious room to ourselves with a private bathroom and a window that looked out on to the main corridor of the hospital where they have the massive atrium. There was so much natural light they never even put the room lights on! It was amazing. Plus there was a cot for me to sleep on! I actually got to stay with my baby!
James looked so much better this time then he had after his last surgery in December. He wasn't on a ventilator, he was swollen but not nearly as bad as before, and the only thing going through his IV was saline to help rehydrate him. No Fentanyl. No Morphine. Just a little bit of baby Tylenol. He was still pretty groggy too so he slept most of the afternoon. I took a short nap on the cot while he slept and my goodness am I glad I did. The afternoon went well, but I had no idea what was coming that evening.
For recovery James had to lie on his back completely flat for a minimum of 4 hours which meant I still wasn't able to feed him since that would require moving him. By the time he woke up later that afternoon he was full on HANGRY! I don't blame him. I get hangery (angry due to excessive hunger) when I don't eat for a few hours, let alone over 12 hours! We did our best to pacify him and finally at 4pm we were allowed to move him so that I could feed him. He ate like I was never going to feed him again and then we heard a burble. Yup, he was pooping. That's a good sign! Means everything is moving around properly. But this time it smelled like he had pooped out a dead cat. It was awful! We figured it was from the anesthetic. So I passed baby off to my mom so she could transfer him to the bed while I covered up before changing him. As she went to put him in the bed he pooped again but it came exploding out his diaper, all over the bed, the floor, my mom... and it looked weird. I went to change him while my mom cleaned up and I realized it wasn't just poop. There were clots of blood in his stool. That's never good. Called the nurse in and she asked me to just monitor his future poops and gave me his vitamin D for the day.
Now with everyone cleaned up, albeit a bit on edge, I settled in to finish feeding him. After a while I decided I should probably give him his vitamin D before I forgot. As I did I heard his make that sort of acid reflux sound that baby's make when they're going to spit up but it wasn't spit up. He began to violently throw up. It was shooting out his mouth and noise in a stream. It was unlike anything I'd ever seen before. And it just kept coming. He was choking at this point too because he was trying to breath and couldn't. We hit the emergency bell and the nurse came to help. Thankfully it stopped but I was covered in vomit, as was everything else in the vicinity. He also pooped again, but this time there was no poop. It was ALL blood. At this point I'm worried. The nurses assured me that this was all still normal but they wanted a second opinion on the stool so they called down to the cath lab so they were aware. The ward doctor came in to check for fissures and thankfully there were none that he could see. One of the anesthesiologists also came to check on him and ask some questions about how he had reacted to the anesthetic after his first operation. As I was telling her some of the details she stopped me and pointed to James who had spaced out. She asked if he did this often. I told her about how we had just been to neurology and were being monitored. She mentioned that she had noticed him space out like that during recovery as well and was concerned. This isn't good news of course BUT it helped me feel validated in that I wasn't being a crazy mum. He really is showing signs of absence seizure.
A Long Night
After everyone had left and the stool sample had been sent down to be tested James got really upset. I rocked him, sang to him, hugged him, tried to feed him... He was having none of it. I could tell he was really uncomfortable and in pain. But we weren't allowed to give him any more Tylenol for a several hours so my mom and I just went back and forth taking turns hold him. Our backs were so sore and I biceps were quivering. He screamed and cried in pain for nearly 3 hours till it was finally time for his next dose of Tylenol. It seemed to almost have a placebo effect on him because as soon as he tasted it he began to settle down. I know the stuff is fast acting but it's no miracle drug and takes 20-30 minutes to take any physical effect. But I guess he recognized the flavour from when we've given it to him the odd time for teething pain and he knew it meant relief. That's speculation of course, but in either case it meant we could all breathe a bit easier now. With James settled down a bit I headed back to the hotel for some dinner and to change since I had been sitting in vomit all afternoon and it was 9:30 in the evening. You know how the crotch area of your bathing suit never really dries until you take it off? Yeah, I had that... but with baby vomit. Silver lining, not as gross as adult vomit, but vomit nonetheless. I grabbed my stuff for over night and headed back to the hospital. Since James had settled down and I wasn't sure how long it would last I sent my mom back to the hotel so we could both get some sleep.
For the most part James is a good sleeper. He's fussy when you put him down but he generally only gets up two times a night to eat (usually around 1am and again at 3:30am). This was not one of those nights though. He wasn't screaming as he had been earlier in the evening but he did get up every hour and just needed some love and comfort. I still think that first night I had alone with him in the NICU Winnipeg before being discharged in January was the hardest night of my life next to my labour experience, but it certainly wasn't the easiest night I've ever had.
Right As Rain
My mom brought me some breakfast the next morning at 7:30am and James was acting like nothing had ever happened. It was crazy! He was happy, active... normal! It was like nothing had happened at all! He still wasn't happy about all the lines and wires coming out of him but otherwise was good as new. He's stool sample had come back normal and the bleeding had stopped so there was no more concern. They just asked me to keep an eye on it and if it came back or if he showed any other signs of infection to bring him in to my pediatrician in Winnipeg or our Children's ER if it seemed urgent. All there was left for us were a couple of final checks and we'd be done.
Up first was an echo. The technician this time around wasn't nearly as patient as our last technician so after trying to get a couple shots for several minutes without success she left with the pictures she was able to capture to discuss with the doctor and our surgeon Dr. Coe. She had left Baby Einstein on the tv for James who really wasn't paying any attention, but all of a sudden they started to play Bach's Air on G which I've played for him at home on my flute. James looked at me, looked at the screen, then holding on to my finger fell asleep! I'd NEVER seen him do anything like that. It was like he knew that this was the song mummy plays for him at home! The technician came back and seeing that he was asleep got back in there and quickly got the extra shots she wasn't able to get before. Before we left the lab Dr. Coe stopped by to make sure we were doing ok and gave me his card. I don't think I've ever heard of a surgeon handing out their personal card to patients before. It was unbelievable! After he left we were sent back to the ward to wait for our next appointment.
Because they sent us without a nurse escort I got to bring his medical file. Normally we aren't even allowed to look in the file, let alone carry it! Since the nurse wasn't in our room when we got back I MAY have taken advantage of this opportunity to look through the file. I'm such a rebel. lol. Soon enough the nurse came back and sent us with another technician to have a chest x-ray done. As far as I know this was his first ever chest x-ray and it was a very cool and weird experience. I feel like it was probably terrifying for James because if someone did that to me I would be scared too! We got into the room and the nurse had me hold him still while she strapped him into this plastic tube that kind of reminded me of the pneumatic tube system they used to have at Costco a million years ago - or a sausage. Kind of both. So my little guy was naked aside from his diaper, strapped into a clear tube with his arms above his head and velcro straps on his head for his x-ray. If you didn't know what was going on and someone did that to you, I bet you'd be scared!
The x-ray itself was neat to see though because you could clearly see all five ties holding his chest together. You could even see how two of them must have been attached by someone on the other side of the OR bed because they were twisted together from a different angle than the other three.
With this last appointment finished we headed back to the ward one last time. The nurse gave him his final vitals check, took out his ART-line, removed his heart-rate, respiration, and SpO2 monitors, and we were free to go! We packed up and headed back to the hotel before 1pm! James was SO glad to be free of all his wires and monitors. The rest of the day we just let him roll around and play on the floor in our room and he was happy as a clam.
Heading Home
Friday evening my mom got to spend some time with one of her friends, Karen, while James I had the opportunity to meet up with an old friend of mine, Stephanie MacMillian (I knew her as "Swigs" or "Wiggy" back in the day) for coffee/dinner. It was so great to catch up on the last 3 or 4 years and reminisce on times past. She and I used to work together when we were still doing children's musically theatre on the touring circuit. That feels like another life time ago... But I was really glad to reconnect with her and I feel like I have more in common with her now than I even did then. Makes me sad we're not in the same city but I'm glad to have a friend in Edmonton seeing as we'll be going back. BTW's if you're in the UofA area GO TO REMEDY and get their falafel wrap... it was all kinds of heavenly chickpea goodness. It was WAY too much for one meal but OH. MY. GOODNESS. I couldn't stop. Seriously. I'm going to make a point of going back for that bad boy again. Oh, and I had an iced Coconut Chai too... UGH! *happy belly eye roll* Actually though. I'll punch you if you don't go try it. ;)
Saturday was a lazy morning for all of us. While James rolled around again we packed up our things for the flight home. We weren't leaving until 6pm, but checkout was noon so we left our bags at the front desk and headed out for a quick walk around campus with one of my mom's friends and then did some exploring on our own before heading to the airport.
James was good on the flight home and even managed to make friends with an "older woman" (a baby girl on our flight who was 13 months old). When we arrived in Winnipeg Chris was his ever charming self and had brought me a bouquet of roses and a pizza since I had missed our regular Friday night pizza cheat meal. <3 This man gets me.
Friday evening my mom got to spend some time with one of her friends, Karen, while James I had the opportunity to meet up with an old friend of mine, Stephanie MacMillian (I knew her as "Swigs" or "Wiggy" back in the day) for coffee/dinner. It was so great to catch up on the last 3 or 4 years and reminisce on times past. She and I used to work together when we were still doing children's musically theatre on the touring circuit. That feels like another life time ago... But I was really glad to reconnect with her and I feel like I have more in common with her now than I even did then. Makes me sad we're not in the same city but I'm glad to have a friend in Edmonton seeing as we'll be going back. BTW's if you're in the UofA area GO TO REMEDY and get their falafel wrap... it was all kinds of heavenly chickpea goodness. It was WAY too much for one meal but OH. MY. GOODNESS. I couldn't stop. Seriously. I'm going to make a point of going back for that bad boy again. Oh, and I had an iced Coconut Chai too... UGH! *happy belly eye roll* Actually though. I'll punch you if you don't go try it. ;)
Saturday was a lazy morning for all of us. While James rolled around again we packed up our things for the flight home. We weren't leaving until 6pm, but checkout was noon so we left our bags at the front desk and headed out for a quick walk around campus with one of my mom's friends and then did some exploring on our own before heading to the airport.
James was good on the flight home and even managed to make friends with an "older woman" (a baby girl on our flight who was 13 months old). When we arrived in Winnipeg Chris was his ever charming self and had brought me a bouquet of roses and a pizza since I had missed our regular Friday night pizza cheat meal. <3 This man gets me.
Obviously more has happened since we've come home but tomorrow I'll fill you in on what's next for us. We just got the call today so we're gearing up for round three.