Yesterday morning we went to see Summer and sat in on rounds with the doctors. She had made it past 48 hours remaining stable. They decided to move her surgery up to 11:00 AM because of an opening. We had just a half hour to sit with her before the long wait. Tom gave her a blessing and we took a few thousand deep breaths. They prepped her and wheeled her out at exactly 11:00 AM as we took more deep breaths...
Tom and I headed for the cafeteria for lunch, though neither one of us really felt like eating. As we choked down our food, we discussed all the possibilities the surgeons had given us. We reflected on our previous experience at Children's and hoped that we could turn this time into something a lot more positive. Tom's parents came to see us during lunch...we finished up and headed upstairs alone to wait some more.
At about 12:15 I heard the receptionist on the phone talking about Summer Cameron. They didn't realize she was in surgery and didn't know we were in the waiting room near the desk. I popped my head up and they told me the surgeon wanted to come out and talk with us. More pits and knots in our stomachs came on. The surgeon came out to let us know all 50 cm of tissue they left in hoping to recover had died. She had only 22 cm that could remain...only 10% of the normal length. He wanted to know what we wanted him to do...of course, we said, do what you need to do to save her. He let us know the odds were not in her favor, and she would likely be TPN (IV nutrients) dependent for what may me a short life. The constant need for TPN can be toxic to her liver, increase bilirubin, and cause liver failure...we were in shock. He returned to the operating room and finished, forming a shunt for an iliostomy and sewed up her incision.
I was speechless and numb. I was really thinking she would come out of surgery with different results...she had been so stable and showed no signs of continued infection. They brought her back in her room and we went to see her. She was very stable through the whole surgery and they felt good about how she looked. Now we have to wait some more and see how she will recover from the surgery, how her body will adapt to the shortened bowel, and what it will all mean for her future.
It had now been 36 hours since her surgery and she has remained strong. Her vital signs have been even more stable than after the first surgery and she hasn't needed morphine to stay comfortable. As we have visited her today she has been sleepy, but trying to respond to us...trying to open her eyes and move her arms and legs. We are scared and hervous for what is in her future...trying to hope for the best. We may get to hold her in the next couple of days...we can use some good baby therapy!
Tom and I headed for the cafeteria for lunch, though neither one of us really felt like eating. As we choked down our food, we discussed all the possibilities the surgeons had given us. We reflected on our previous experience at Children's and hoped that we could turn this time into something a lot more positive. Tom's parents came to see us during lunch...we finished up and headed upstairs alone to wait some more.
At about 12:15 I heard the receptionist on the phone talking about Summer Cameron. They didn't realize she was in surgery and didn't know we were in the waiting room near the desk. I popped my head up and they told me the surgeon wanted to come out and talk with us. More pits and knots in our stomachs came on. The surgeon came out to let us know all 50 cm of tissue they left in hoping to recover had died. She had only 22 cm that could remain...only 10% of the normal length. He wanted to know what we wanted him to do...of course, we said, do what you need to do to save her. He let us know the odds were not in her favor, and she would likely be TPN (IV nutrients) dependent for what may me a short life. The constant need for TPN can be toxic to her liver, increase bilirubin, and cause liver failure...we were in shock. He returned to the operating room and finished, forming a shunt for an iliostomy and sewed up her incision.
I was speechless and numb. I was really thinking she would come out of surgery with different results...she had been so stable and showed no signs of continued infection. They brought her back in her room and we went to see her. She was very stable through the whole surgery and they felt good about how she looked. Now we have to wait some more and see how she will recover from the surgery, how her body will adapt to the shortened bowel, and what it will all mean for her future.
It had now been 36 hours since her surgery and she has remained strong. Her vital signs have been even more stable than after the first surgery and she hasn't needed morphine to stay comfortable. As we have visited her today she has been sleepy, but trying to respond to us...trying to open her eyes and move her arms and legs. We are scared and hervous for what is in her future...trying to hope for the best. We may get to hold her in the next couple of days...we can use some good baby therapy!
My sister Kathy, me and Summer
Now, we have to wait some more. The nurse today told me she is still in the 3rd trimester of growth (I would be in my 3rd trimester of pregnancy at this point)...the bowel does some growing in that time and sometimes a child with shortened bowl will have some growth in the remaining sections. We will take any added length we can get, it will mean an easier time for her body to be able to absorb food.Yesterday Tom ran into a woman who was very upset. He decided to ask her if she needed anything and they got talking. It turns out she has a baby here that is TPN dependent, has no intestine left, and is now 6 months old. She has no family here and has little support from her husband. They talked for a long time about the process she has gone through to keep her baby going. There is a doctor here who has helped her get in contact with a drug called Omegaven that is not widely used and only available from Canada or Germany. Her son's bilirubin had climbed to 19, after Omegaven it came down to 2. There are not any case studies because the drug is only 2 years old, but he found lots of testimonials from families whose kids have benefitted from it. We are grateful that Tom listened to the spirit and talked to her...we would have never known about Omegaven otherwise. For now, we wait and see what we will actually be faced with. Summer has a long road ahead and we will do what we can to make it longer...
