Nothing seemed to be out of the ordinary with Jaycee.
We took Jaycee in for her routine heart echo and waited for the results in a little room. When the cardiologist came in, shut the door, and sat down, we knew automatically that something was wrong. The cardiologist gave us the bad news and feared that another open heart surgery may be necessary. Only a small percentage of kids need a second heart surgery. We were hoping Jaycee wouldn't be in this group.
A diagnostic heart catherization was scheduled to determine precisely if another surgery was needed. We were scared of all of it. The heart cath had its own risks, and we were afraid to find out anything bad. Jaycee was 21 months old and had just started walking. Now, her health was priority number 1 again and developmental issues would have to take a back seat.
Jaycee made it through the actual catherization. Afterwards, she had to keep her legs completely still for six hours to prevent a hemorrhage. Jaycee was groggy but moved around often. My husband and I took turns holding down her legs for the next six long hours, which was something we had not anticipated. Near the end of the six hours, we were preparing to go home. However, Jaycee went into respiratory distress and a blood clot formed in her leg; both of these were potential risks of a catherization. It landed her in the intensive care unit for the night. But, she recovered quickly and responded to treatment.
The next day, she was "better" but the results were not good. Two leaks in her heart and pulmonary hypertension were confirmed. Another heart surgery would take place 6 months later. There was plenty of time to get more photographs of her and of us together and to make necessary preparations.
This time, before the surgery, we took a short family vacation to Branson, Missouri. The vacation helped me relax and I enjoyed getting away from our ordinary life of therapy, medicine, and work. My husband, on the other hand, said it was hard for him to enjoy the vacation and would have rather been home. It's mentally hard when your child is going to have major surgery. Still, we had some neat experiences with Jaycee during that trip. Even my husband would agree with that.
In May 2008, we once again took Jaycee into the hospital for pre-operation tests and meetings. The next day, we arrived early at the hospital. Jaycee was 2 years old. We knew her personality, what her cries meant, and had developed a strong bond. It wasn't that we weren't bonded when she had her first heart surgery, but as a newborn she just didn't do much. Now, we had 2 years into our relationship. It made it difficult to hand her off to the surgical team this time. I didn't want to let go, but I knew I had to.
Jaycee's surgery lasted 4 hours. The valves were repaired. The surgeon felt it went well despite there being some scar tissue. Jaycee spent the rest of the day being sedated in ICU. The next day, Jaycee was moved out of the ICU and was off of oxygen. Her voice was hoarse and she choked on liquids.
After surgery, Jaycee was in pain. She wasn't sleeping well. It was apparent that she was sore. It was hard to find words to comfort Jaycee in her pain, especially because I had consented to it. A couple of days after surgery, the chest tube was removed. We stayed and watched the removal. I was fine but my husband got completely white. The next thing I knew, he was in Jaycee's bathroom vomiting. The doctor told me to attend to him while they finished with Jaycee, but he didn't want my help. We have laughed about his weak stomach for years now.
On day 4, Jaycee was discharged from the hospital. This time, the recovery was quicker, and we didn't have to deal with home oxygen. Some of the after care was easier since we had been through it before. We knew how to clean her chest, to avoid swimming for a few weeks, to avoid large crowds for a few weeks, and to give sponge baths for a short period of time. Unlike the first surgery, Jaycee didn't develop a bump on her chest. Perhaps that only happens to babies? She was back to normal in a short amount of time. She never lost any skills while she recovered; she just picked back up where she left off.
It was a relief to have Jaycee home again with a more efficient heart. Today at age 8, her heart is still monitored yearly and often checked during admissions for illnesses. Currently, Jaycee has some "mild" leaks in her heart that should be fine. The cardiologist does not anticipate any more surgeries. She is not on any heart medications. But, when Jaycee gets sick, her oxygen saturation levels do tend to fall. We have oxygen on stand by at home and generally use it a few times a year. Also, Jaycee cannot take the heat at all. I'm not sure if the heat intolerance is from her heart history or her asthma. I just know it affects our plans all summer long.
So, that is the end of Jaycee's stories of how her heart was mended.
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