Surgery day is considered Day 0, Friday 1/17/14. So, Saturday 1/18/14 is Day 1.
Following the surgery Katie was put in a bassinet (they didn't have any cribs available) in the Pediatric Cardiology Intensive Care Unit (PCICU). The post-surgery room is not private; it is basically an open space with room for four patients. Katie had two nurses full time, the first 12 hours. The area had tons of machines, a TV with the speakers on the call button remote, and two chairs for the parents.
We spent all the nights while Katie was in the hospital in the Ronald McDonald house within the hospital. There are only four Ronald McDonald houses that are physically located in a hospital in the whole US and Rochester is one of them. We were lucky enough to get one of the seven rooms; so, we were only one stairway away from Katie the whole time.
We knew the night before they were going to slowly take Katie off the ventilator because she was trying to breath on her own. I went down at 4am to freeze some milk and stopped by to check on her. The nurse told me they needed to do a one hour test with the ventilator turned off, but still in, to make sure she was breathing fully on her own before they would schedule the removal. I asked her to call just before the removal so we could be there.
We got the call at 6am and Mike and I down to observe. The doctor first pulled out her nose tube going through her nose to her stomach and removing the stomach contents. Then they did a few puffs of air and pulled the ventilator out. Katie didn't like it very much and arched her back very severely. The doctor was concerned about her back arching, but we assured him that she does that all the time while she is stretching. She was given an oxygen tube which is normal protocol following ventilator removal. She then had to be slowly weened of the oxygen by reducing the volume and checking to make sure her blood gas levels were stable.
In the afternoon the catheter was removed which was handling her urine. We had to start diaper changes which is a little difficult with all the wires!
Katie was on two heart drugs which encouraged her heart to beat tightly. They slowly weened her off of these as well. By that afternoon she was fully off one of the two heart drugs. She had to be off the other drug before she could eat.
At 5pm we got to hold her! The nurses had to help us because of the sensitive arterial and central lines. It was so wonderful to get to hold her. We each held her for about an hour each.
At 8pm they removed her arterial line which is basically an IV that entered the big artery in her groin. This was difficult because the line was held in place by three sutures that had to be untied. Then pressure had to be applied for 5 minutes to make sure she did not bleed too much. Katie did not like that process.
At some point during the day we were able to figure out how we could video chat with Ellee. Technology is awesome. Katie could not have any visitors except Mike and I due to the hospital restrictions for flu, but with a couple smart phones Ellee could see Katie whenever she wanted. Every time Ellee called the whole week she would immediately ask to see Katie. Mike and I are second fiddle and proud of it! Katie and Ellee are going to be an inseparable team.
Ellee knew that Katie had a 'broken heart' that the doctors would 'fix'. We had read a Magic School bus book about the heart and a book called 'Matty's Heart' about heart surgery. Ellee knew the heart was important and Katie needed hers fixed. We also told her that Mommy, Daddy, and Katie were going to 'live with doctors' for 'a while' so they could fix Katie's heart. Whenever Ellee called she would ask if Katie had a check-up and what the doctor had said. We were able to assure her that the doctors had fixed Katie's broken heart and were watching as she got better until we could come home. At one point Ellee wanted to speak to the doctor but we were able to show her the nurse and distract her! :)
Following the surgery Katie was put in a bassinet (they didn't have any cribs available) in the Pediatric Cardiology Intensive Care Unit (PCICU). The post-surgery room is not private; it is basically an open space with room for four patients. Katie had two nurses full time, the first 12 hours. The area had tons of machines, a TV with the speakers on the call button remote, and two chairs for the parents.
We spent all the nights while Katie was in the hospital in the Ronald McDonald house within the hospital. There are only four Ronald McDonald houses that are physically located in a hospital in the whole US and Rochester is one of them. We were lucky enough to get one of the seven rooms; so, we were only one stairway away from Katie the whole time.
We knew the night before they were going to slowly take Katie off the ventilator because she was trying to breath on her own. I went down at 4am to freeze some milk and stopped by to check on her. The nurse told me they needed to do a one hour test with the ventilator turned off, but still in, to make sure she was breathing fully on her own before they would schedule the removal. I asked her to call just before the removal so we could be there.
We got the call at 6am and Mike and I down to observe. The doctor first pulled out her nose tube going through her nose to her stomach and removing the stomach contents. Then they did a few puffs of air and pulled the ventilator out. Katie didn't like it very much and arched her back very severely. The doctor was concerned about her back arching, but we assured him that she does that all the time while she is stretching. She was given an oxygen tube which is normal protocol following ventilator removal. She then had to be slowly weened of the oxygen by reducing the volume and checking to make sure her blood gas levels were stable.
In the afternoon the catheter was removed which was handling her urine. We had to start diaper changes which is a little difficult with all the wires!
Katie was on two heart drugs which encouraged her heart to beat tightly. They slowly weened her off of these as well. By that afternoon she was fully off one of the two heart drugs. She had to be off the other drug before she could eat.
At 5pm we got to hold her! The nurses had to help us because of the sensitive arterial and central lines. It was so wonderful to get to hold her. We each held her for about an hour each.
At 8pm they removed her arterial line which is basically an IV that entered the big artery in her groin. This was difficult because the line was held in place by three sutures that had to be untied. Then pressure had to be applied for 5 minutes to make sure she did not bleed too much. Katie did not like that process.
At some point during the day we were able to figure out how we could video chat with Ellee. Technology is awesome. Katie could not have any visitors except Mike and I due to the hospital restrictions for flu, but with a couple smart phones Ellee could see Katie whenever she wanted. Every time Ellee called the whole week she would immediately ask to see Katie. Mike and I are second fiddle and proud of it! Katie and Ellee are going to be an inseparable team.
Ellee knew that Katie had a 'broken heart' that the doctors would 'fix'. We had read a Magic School bus book about the heart and a book called 'Matty's Heart' about heart surgery. Ellee knew the heart was important and Katie needed hers fixed. We also told her that Mommy, Daddy, and Katie were going to 'live with doctors' for 'a while' so they could fix Katie's heart. Whenever Ellee called she would ask if Katie had a check-up and what the doctor had said. We were able to assure her that the doctors had fixed Katie's broken heart and were watching as she got better until we could come home. At one point Ellee wanted to speak to the doctor but we were able to show her the nurse and distract her! :)
Katie was asleep most of the day. When she opened her eyes they would mostly roll around completely unfocused due to the medications she was receiving. I wanted her to know that Mike and I were there but couldn't think of much to talk about. So, I started reading my book out loud to her. Mike bought me the Divergent series for Christmas and I waited to read it so I would have something to look forward to at the hospital. Therefore, Katie and I read Divergent together. Fun times!
No comments:
Post a Comment