We haven't posted in a very long time. It's been almost a month since our last post. We have now been in the hospital for almsost 7weeks. Honestly, we've all been traumatized from this entire experience. It's hard seeing myson suffer and feel pain each and every day. Every day there is a new test or procedure that needs to be done to him that causes him pain. It also sucks that this will be his new norm when we go home. So here's an update:
Chris Jr. has significantly improved. It amazes all of his doctors. There is no longer any concern re: his heart function as of now. Although he will need another heart surgery in about a year, this surgery has been deemed successful. His heart function is described as being in the "lower limits of normal". Although it's on the low side of normal, this is good given his circumstances: the right side of his heart is doing all the work. My son went through so much physically and they were doubtful of his recovery. Yet, he has recovered signficantly. It's a beautiful thing. Three weeks ago, he couldn't move the right side of his body. He couldn't hold his head up. He couldn't bear weight on his legs. He couldn't focus his vision.l At one point, we thought he actually had some blindness due to the stroke. He became left side dominant and would just stare off in the distance. It was like his eyes were "stuck" and he couldn't keep eye contact with anyone. He wasn't the same. He used to light up every room and it just seemed that his light turned off- not dimmed but just completely switched off. It's hard to explain but it was like he saw the horror on the other side. We were so frightened looking at him somtimes because he wasn't our baby boy anymore. But I mean, whow ould be the same after facing death? His heart stopped. Who knows what he experienced or felt while he underwent CPR for an hour or life support for 48 hours. We were told to prepare for a long road of recovery. We were told that this was Chris Jr.'s new normal and we had to leave behind how he acted before the surgery. They couldn't give us a timeline for his recovery because no one knew the extent of his neurological damage. He started having physical, occupation, and speech therapy every day. Then we became frustrated with our team. He was put on medications without even having assessments to see if he even needed them- just the "standard" of care. Slowly but surely, our son gained his mobility back. We were even told that some medications shouldn't have even been prescribed to him. I'll never forget a specific day. The neuro te3am told us that he could have permanent brain damage which was causing paralysis on his right side. They were unsure if he would ever recover. We were trying to do everything to get him to look to the right side or use the right side of his body. I was so upset and called my mom. She said it sounded like he needed her to come play with him. In that moment, I really wanted to scream at her for not taking this serious. But she came anyway determined to play with him. It would be the first time he saw her while he was somewhat alert. Now let me explain this. Chris Jr. has levels to his love. We all have our roles. I'm his mama- he know I have food and I'm the nurturer. He eats with me, sleeps with me, and expects me to comfort him. Chis is Daddy- his teacher and rule enforcer. He has a love/hate relationship with him. When he's just with his Daddy everything is fine, once he sees me, then it's over. Now Grandma Jones. Grandma Jones is Chris Jr.'s best friend in the entire world. His first playmate. Mama spends too much time attached to my breast pump that I really can't play and entertain him. But as soon as Grandma Jones arrives, he knows it's playtime. They are partners in crime, two peas in a pod. I say this to explain what happened. So that day when Grandma Jones came to the hospital to play, we weren't expecting anythign to happen. He didn't want to interact with anyone or even look at anyone. As soon as Grandma Jones walked into his room and called his name, Chris Jr.'s head turned to the right and looked straight at her. In that moment, I cried. Ever since then, we haven't had any issues lol. I know that sounds weird to say that something so simple changed him drastically but it's the truth. Ever since that moment, he started using the right side of his body, grabbing for toys, and keeping eye contact. He followed our voice and our gaze. He still was really miserable and grumpy but it was definitely a step in the right direction.
We were in Cardiac ICU for a total of 4 weeks. In that time, we had our share of arguments and interactions with Chris Jr.'s medical team. When I say "we", it's mostly me but Chris had his disagreements as well. One time, I asked our bedside nurse to evalaute Chris Jr. because there was some weird twitching going on with his eyes. We had never seen the physical manifestations of his seizures so I was worried. She assured me that he was okay and then went back to chatting with the other nurses. Chris overheard them laughing about my question and he went off on all of them. None of our nurses had children of their own so he wanted to make sure they understood that we were worried as parents and only wanting them to do their jobs.
After four weeks, the Cardiac ICU team decided that Chris Jr. was ready to go to the recovery unit. We knew it was time when his "rounds" started becoming 2 minute conversations. All improvements. Nothing to report. Chris Jr.'s central line and arterial line were both pulled (important point for further down the road). His NJ tube (which was giving his breastmilk) was moved to an NG tube (moved from the intestine to stomach) and he was ready to go. We thought we were in the clear and ready for a new adventure.
Let me tell you. The first week in the Heart and Kidney Recovery Unit (HKU) was a total disaster. It was a shit storm. Excuse my language but I was going off on everybody. Within a matter of two days of being in HKU, he was evaluated to see if he needed to go back to the Cardiac ICU. It had nothing to do with heart function but all about the care (well LACK OF) he received. The transfer process between the ICU team and HKU team was horrible. Basically the ICU team removed/changed everything that was happening with Chris Jr. for the last 4 weeks and he wasn't ready for it. Because his central line and arterial lines were pulled, Chris Jr. had to now receive all of his meds through his NG tube. He was on 20+ medications. There wasn't a gradual transition for this. His meds for the last four weeks had been given IV and in the span of a 24 hour period, they were all now given straight into his stomach via the NG tube. That was a disaster because the schedule they had in place didnt make sense for a 7 month old. He was getting 5-6 medications at once. It made no sense and no one on his medical team thought to reevaluate this. I had to say something about it. I had to refuse ihs meds until they got his schedule together. Then we had a hard time with that because the nurses said that spacing out his medications made more work for them. As if taking care of my son isn't their job. Chris Jr. went to the HKU not needing alot- just meds and feeding. That was it but the nurses wanted to push all his meds so they would only have to come in our room every 4 hours. Nahhhhhhh do your job. So again, we had to talk to another nursing manager about our concerns and issues. This was within the first 3 days of our stay in HKU and we had issues.
Our family is well known at HKU. We've had many hospital stays and they remember us vividly from Chris Jr.'s first surgery. They know we are no nonsense. They know that I will observe everything they do and let them know when they're wrong. They know that I want to be involved in his treatment process. So we tried our best to make this stay as smooth as possible. As soon as we were transferred, we gave them a list of nurses we would like to be our primary nurses. These nurses knew Chris Jr. They had been with him since he was first born and we had developed a great relationship with them. Not every nurse can tolerate a mom who is also in the medical field. Not every nurse can tolerate a family that has specific requests. Not every nurse works for our family and we understand that. Our first couple days was great when it comes to our nursing team. We had nurses that we asked for. It went downhill after that and we started getting new nurses. Ex. it was a NEW nurse who told me that she didn't have enough time to space out his meds.
Besides his medication disaster, his feeding process has not been optimal. His NG tube was placed a day before our transfer. He was still getting meds by IV so we didn't see any issues. Once he started getting the meds and breastmilk via NG, it became evident that something was terribly wrong with his GI system. No one listened to us at first because babies are "supposed" to vomit. One day, I wrote down every single time Chris Jr. vomited and showed it to his medical team. Let me stop right there. I will also add that Chris Jr.'s medical team is different. His rounds are completely different and involve different people. In the Cardiac ICU, his rounding team consisted of the ICU attending, resident, fellow, dietician, rehab, neuro, etc. There were at least 7 people that we met with during his rounds and we covered every system during his rounds. Moving to HKU, we only meet with the nurse practitioner of the CV surgery team. That's it. So if we have a question regarding his diet or GI, any other system outside of his heart, she then has to follow-up with them then relay any information to us.
Our first three days in HKU,Chris Jr. vomited 12+ times a day. After almost every feed. They couldn't figure out why he was now vomiting in HKU when he didn't vomit in C-ICU. Mama and Daddy to the rescue. The answer was simple and not yet so simple. He was not getting food directly into his stomach instead of his intestine and he was now getting his meds via NG instead of his IV. I explained this to them and the HKU team looked at us in bewilderment. Why would they do all that before transferring him and not even making sure that he tolerated it? Hmmm sounds like a communication issue on their end.