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Brianna (VSD) has had three hospitalizations - two planned, one not. For her catheterization (she was 2.5 years old), we told her older sister (Julia, 6 years old) she was having her heart looked at with special equipment and had to spend the night at the hospital. Julia stayed with my mother-in-law who is a professional child-care provider. She was able to maintain her regular schedule, with the added bonus of a sleep over with "Mom-Mom".
Brianna's second hospitalization was for Bacterial Endocarditis. We were "flying without a net", so to speak. Four days of uncertainty, not knowing what was going on, followed by six days of getting the situation under control and getting ready to go home. Julia ( 9 years old at the time) stayed with my Mom (Grandmom) because she was going to summer day camp. Julia got to stay with Paul and I at the Ronald McDonald House , and went to an Orioles game with her dad. Both children were told exactly what was going on - infection in her heart which required antibiotics, they were using a special pump and catheter to make sure that they got all the infection, etc.
Brianna's third hospitalization was for her surgery. Both children knew exactly what was going to happen except we prepared them for a much longer separation than what really happened (YEAH!). Again Julia stayed with my mother-in-law, so her schedule was the same except, because she stayed at Mom-Mom'she got to sleep in. She really liked that. Both kids knew that Brianna's "broken heart" was going to be repaired and that she would have a scar.
I spent a lot of time preparing the kids for the surgery and recovery period. My mother-in-law was adamant in her opposition to my methods. She wanted me to not tell Brianna what was going on so she would not be scared. There was no way that I could let a 6 year old go up to the hospital expecting just another checkup and then end up in the PICU!!!! Once again, I had to agree to disagree with my
her.
I told Brianna that she would hurt when the surgery was over, but to try not to scream. She needed to be able to concentrate and tell someone WHERE she hurt so they could help to make it stop. I told her that Mommy and Daddy would be with her as much as possible, but we would not be able to be with her all the time. We went through this scenario on a regular basis.
When we saw her in the hallway just outside of the PICU, she had chest tubes, catheter, tons of tubes, but no vent tube and was easily the most beautiful thing I had ever seen. She had made it through surgery - I think the waiting is the worst part. My mom started sobbing because the child across the street from us had died from this surgery when I was child. I didn't remember this, but Mom had.
Brianna never cried or screamed in PICU. In fact she refused morphine, codeine, etc. The only painkiller she took was regular Tylenol. The nurses were really nice to her and us. The only time Brianna had any complaint was on the ride home. She said, "I know you said that my surgery would hurt, but I didn't know that it would hurt so much." I just sat in the front seat with tears rolling down my face.
I believe that it is very important that the children (both heart kid and siblings) be given information (age appropriate) about what is going on. Uncertainty to a child is devastating.
S.H.
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