I am going to post this by day for the most part. On Dec. 7th we came to Children's Mercy Hospital in KC for a Heart Catherization procedure. We knew that this would be happening and weren't overly concerned. We talked to all the Doctors and did Elizabeth vitals and anything else they needed to be done. She was happy and content. I had not worries when they took her in for the actual procedure.
During the procedure we called to see if we had been able to get into the Ronald McDonald house here. We had to call three times but we did get in.
When she was taken to recovery things were still going well. While she was there we got to look at the pictures of her heart. That was when we found out the the left descending coronary artery wrapped around the right side of the pulmonary tree instead of staying on the left. So it crosses over right where they would need to do surgery, and the traditional fix will not work. Thus come in the need for a donor valve and multiple surgeries as she out grows the valve, and it has to be replaced. This is called a homograph and All I could think of what it is in reading. Then chuckled later realizing the word IS a homograph.
About 30 to 45 minutes later they came and got us and took us to see her on the floor where she would be for the evening. She was doing well and they had given her some apple juice and we tried to give her more grape juice as to hopefully protect her bottom from the damage apple juice does. While doing so, it became apparent that she was having trouble breathing and was getting raspier by the minute and was struggling. Her O2 stats kept dropping until they had more doctors than you can shake a stick at in there. When the nurses started calling for the doctors I remember a friends (Jennifer) advice and left the room. Since it was obvious that I was upset the other nurses called the Chaplin and came over to talk to me. Mark soon appeared and as the chaos was going on around us the other nurses and the Chaplin let us know what was going on. The hardest part was hearing them call a code on her and facing the possibility that we could lose her right there.
We talked to the cardiologists, both Dr. Kane and Dr. Hubble and the let us know that she was having a severe Tet spell and had lost consciousness. Since it had happened once they couldn't send her home as planned because having one spell increases the chances of another and an intermediary fix would need to be done, but they would know more after conference on Friday when her case was presented to the team and they could discuss treatment options for her.
We where then moved to the Pediatric ICU or PICU, where we spent the night. The chaplain, Janie, contacted a priest for us and let the Ronald McDonald House know that we had an emergency and would be there as soon as it was possible for us to. We did get checked in and the priest arrived. We started to let family know that things had changed and we would be here awhile. Then we started laying plans for taking care of the things at home and getting necessities like a boarder for the cats and clothes. I stayed at the hospital that night while Mark slept in the room.
On Friday they moved her up to the floor where we spent the weekend. Mark headed home to take care of things there. Susan came up to visit and help me run some errands. After a terribly long 48 hours and about 6 hours sleep in that time. I crashed at 1:00am till Saturday morning and was back in the room by 9:00am. Only because security didn't pick me up.
While in the ICU we had wonderful nurses. Lenee, Lauren, Nicole, and another that I can't currently place a name to were a God send. May God bless them and their colleagues as they are truly talented and caring people.
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