So this is just a bit over due. I already posted about the hours before we left
for the hospital. I also posted about breastfeeding while Kian was in the hospital here
if you are interested. Chas posted his thoughts here
. This post covers the rest of my experience.
We arrived at the hospital right at 6:00 am just as we were told to do. The procedure was still scheduled for 7:30 and they needed to process us first. We checked in with Registration who did not have a reservation for us, meaning that his room was not ready, but we were reassured that this was not a problem. We were directed to the cardiac care floor to take Kian's vitals and let us meet the medical team.
We were escorted to a consultation room where we stripped Kian out of his pajamas and some wonderful nurses admired Kian while taking his measurements. I was impressed when Kian returned to sleep quickly. Angie was the kind of baby who would have stayed awake and cranky with all that fiddling--her loosely established pattern of sleeping and eating could easily be altered. Kian quickly developed the ability to sleep for several hours at night. Nothing can shake his schedule. He slipped back to sleep immediately after feeding at 3:00 am that morning as well.
We were told to wait and someone from the lab would be down to see us. It was 6:45 am at that point. We waited for about twenty minutes, then Chas went to the nurses station. Finally, a cardiac resident entered the room around 7:30, when the procedure was set to begin. The first thing she said was, "The procedure has been rescheduled for 8:30." The scheduling department allegedly called us the day before to provide the new time. Ummmm. We never received that call. I thought Chas was going to jump out of his chair and hunt down the schedulers.
The resident gave us the basics--I can't tell you how stressful it is to hear, "We're doing this procedure because the risks of the procedure are far less than the risks of doing nothing." I just hope you never have someone say that to you while referring to your child, especially when you've had little sleep and are holding the sleeping child in your arms. It kind of takes your breath away.
At 7:45, the resident left, Chas and I continued our waiting. I think the delay just added to our stress, because we just sat there, looking at Kian, and worrying about what might happen next for almost an hour.
Finally, a nurses came for us and put my suitcase in a locked storeroom. Then she took us into the hallway to meet some of the nurses who would be caring for Kian during the valvuloplasty. One of them directed us to a pair of ominous doors down a long hall and I thought my legs were going to give out. I would have done much better if we had been told the correct time. I would have had less time that morning to stew over everything. I wanted to run away, with Kian. I wanted him to be perfect and healthy and not need this medical intervention. But I took him through those doors because I knew that I couldn't wish him to be well.
Once through the doors, we met the doctor who would be performing the valvuloplasty. I could not have described him. I don't think I actually looked at him, I was so busy staring at Kian who was awake and confused by the lack of food. What I did see was a man's hand gently touching my son's head, complimenting Kian and asking if we had questions. I was inordinately grateful for the kind manner he used with us and with Kian.
We entered the Cath lab with the Doctor, the Nurses and met still more nurses and medical staff. I'm embarrassed to say that I don't remember any of their names or faces. They were all very nice to us, but Chas and I were so tense from the waiting and worrying that I'm sure we seemed stiff to them. I could barely speak I was so nervous and overwhelmed by the enormous banks of equipment and monitors. One of the nurses asked about Kian's name, and she had to ask me to repeat my answer because I was barely audible. More waiting as the anesthesiologist had not arrived. The Doctor sat with us for a few minutes and asked if we had any questions. I babbled something about trusting him and feeling comfortable with what the resident had explained. I just wanted it to be over because we had been waiting so long. I wanted them to work on Kian so that we could learn whether this procedure could help him.
Once everyone was present, we laid Kian on the table and he was screaming at us. One of the nurses joked, "there's nothing wrong with his lungs." We were told to leave his binky (pacifier) on the table because, "he might need it." They readied the anesthesia and we were told to say goodbye. "Now it's time for Mom and Dad to leave." Chas remembers seeing them put the mask over his face; I don't. I didn't see anything except the door out but as I left, I heard Kian crying hysterically. I couldn't do anything to comfort him.
Chas and I ate a bagel downstairs before going to the waiting room. I pumped for a few minutes in an empty exam room and felt better than I had all morning. I returned to Chas in the waiting area and picked up my stitching for the love quilt to keep my hands occupied.
It did not seem that much time had passed, when Chas bolted from his seat to the door of the waiting area. I looked up and saw a man in surgical garb. My legs locked and I stared uncomprehending for a few moments until it sunk in that this was Kian's doctor. I ran out the door worried that something had gone wrong, but the Doctor was smiling. Kian did very well and they were just taking some measurements as a baseline for future reference while Kian was still unconscious. His aorta was between 45 and 55% blocked before the procedure and they had managed to open it to roughly 10%. His heart chambers looked good and the area where the aorta connects with the heart appeared strong. This means that Kian is a good candidate for a second valvuloplasty, if it becomes necessary. We would be able to see Kian shortly as we would all go down to the recovery ward together. We thanked him and returned to the waiting room.
When they finished with Kian, another nurse retrieved us and we stood in the hallway outside the lab eager to see our boy. The doors opened and the medical team wheeled Kian out in a bed about 2/3 the size of a normal hospital bed. The team looked very pleased, happy with what they had accomplished. Their faces were a blur to me because I was looking at Kian, whose eyes were opened wide and seemed confused an in pain. Most heart-rending of all--Kian was whimpering. I hadn't expected to see him awake just yet. He whimpered the entire trip to the Recovery Ward.
We were briefly deposited in another waiting area while Kian was taken to his assigned station in the ward. Chas barely had time to ask me if I thought he should start calling family or if he should wait until we return to the Cardiac Floor ("wait"), when we were taken back to Kian's bedside.
The Recovery Ward is an amazing place--it's a large open room (one of two) with children separated by curtains. We were there just a few minutes when I turned to Chas and said "I couldn't work here." The sound of all those children crying in pain would tear at me. Kian was strapped into an adult leg brace (the type used in ACL injuries) to restrict his movement and prevent him from bleeding to death. Faithfully every fifteen minutes, the nurse assigned to Kian checked his vitals signs. Chas insisted that I sit down because I was wobbling due to hunger and lack of sleep. I bounced between sitting in the rocking chair and standing at Kian's bedside. Kian slept. Occasionally, his eyes would pop open, but he closed them just as quickly and I don't know if he realized we were with him. My husband, bored with waiting, read Kian's chart--not that he understood anything written. Kian's nurse scolded Chas and took the chart from the bed when Chas kept peeking at it. My husband is incorrigible.
After an hour, Kian was doing wonderfully and was sent to the cardiac floor. For the rest of the day, a host of doctors, residents, interns, fellows, nurses and nursing assistants came to Kian's pie wedge room. I must confess that as serious as it was, I felt a bit like I was on an episode of Scrubs. At one point Chas was dozing on the pullout couch, Kian was surrounded by eight residents, interns and nurses all trying to find the pulse in Kian's foot. The conversation was something like this:
"Can you find it?"
"I thought I found it but now I'm not sure."
"Get the Doppler."
"That's the Doppler we have for this floor? It's ancient." (it looks like an old transistor radio)
"Let me go borrow one from NICU."
"Hmmm. I thought I felt it here. Let me try his other foot."
"Is that my pulse or his?"
"The nurse in recovery found the pulse?"
"Yes she said she had no trouble."
"That is so weird that we can't find it now. "
"Too bad she didn't mark it on his foot."
"We'll mark it when we find it." (Pen is readied)
To me "Don't worry--he's okay, sometimes its hard to find the pulse on infants."
" Oh that's a much better Doppler." (clearly a more modern piece of equipment)
"Can you find it now?"
"I'm still not sure." (two more doctors enter the room)
"Hey, which side did you go in?"
"Really, I thought it was the right."
"No it was the left."
"We can't find his pulse."
"Really? I found it here. Hmm."
This went on for fifteen to twenty minutes until the chief pediatric resident came and found Kian's pulse in both feet, which were promptly marked with x's. I would have worried but I was giddy from lack of sleep and I was watching Kian's steady heartbeat on the monitors.
Another time, a resident brought another Resident to our room and said, "We were told your son has a perfect heart murmur. Is it okay if we listen to it?" In my grandest voice I replied, "Yes, you can listen to our son's perfect murmur." They also let me borrow a stethoscope so I could listen. I couldn't distinguish the sounds though I had thought I'd heard something prior to his procedure with my ear to his chest (they assured me that wasn't likely).
Angie came to the hospital to check on Kian and me. I read her a few stories because I had missed her and wanted to snuggle with her for a few minutes. Chas returned home with her and his Mom. Kian slept most of the afternoon and awoke to gulp some pedialyte aroud 3:00 or 4:00. By 6:00, I was breastfeeding him directly and at 8:30, just before Chas left, Kian graced us with the most beautiful smile.
I spent a very sleepless night because Kian wanted food and comfort every ninety minutes. Doctors and nurses continued to come in and out of the room around the clock as well. And the young girl whose room connected with Kian's watched a "Fresh Prince" marathon from 10:30 p.m. until about 2:00 a.m. I sang to Kian while he nursed and told him stories (thanks to Laurie Berkner and Don and Audrey Wood). I was exhausted but at least my son was gloriously alive in my arms. It was wonderful just to live inside those moments with Kian and not think of anything beyond holding him in my arms while trying to keep all the monitors attached. I changed positions when his oxygen levels decreased slightly and reattached the monitor when it fell off. All night long, Kian would rest in his bed for a bit, then he would let me know that it was time for some cuddling and feeding.
We were released from the hospital with some instructions for pain relief and a follow up appointment with his regular cardiologist. Kian's left foot was oddly cold, it seemed to radiate cold at times, but that is normal. The needle and tubes used in a valvuloplasty are the same diameter as the artery and this can make the artery spastic for a bit. It took three or four weeks for his feet to be the same temperature.
It was a few days before I felt rested. It was a few weeks before Kian was happy being held by anyone other than me. Angie was a bit angry both at having me gone for the over night and for having Grandma leave the next day.
The doctor who performed the valvuloplasty is cautiously optimistic that this will resolve the problem and Kian won't need additional medical intervention in the future. His regular cardiologist is certain that the stenosis will return in a few months or years. I worry, but I remain hopeful. I'm trying to just enjoy the little moments for now.
Labels: family, fretting, gratitude, hope, kids