Surgery #2

Evelyn had surgery yesterday.

She got a g-tube because she was "Failure to Thrive", meaning she wasn't gaining enough weight. She also got a fundoplication Nissen, a "tying" of the top of her stomach to stop it from refluxing. And while she was out, the wonderful ENT, Dr. A, did an endoscope to check things out down her throat.
I wasn't as nervous for this surgery as I was for the shunt surgery. For one, she was not having "Brain Surgery". And two, she showed that she was capable of being intubated and extubated.
I was still concerned about this surgery for a couple of reasons. Number one, I do not like Evee being in pain. I knew that this would cause pain to my little girl that would not understand all that is going on. I was also nervous that the anesthesiologist would look at Evee's history and not be as concerned and conscientious about putting her under since it had already been done before. I felt that at her last surgery one of the reasons she was so successful at being extubated was because the anesthesiologist was incredibly attentive to her case. My friend, who is a nurse, calmed my fears by informing me that no one would look at Evee's breathing and take sedating her lightly.
Tuesday morning the surgery was set. We got to Rainbows at 7:30 AM and checked in at the surgery waiting room. We were brought back to the Pre-Op to get Evelyn ready. The nurse checking us in was very nice and helpful.
We had met the surgeon, Dr. S, a couple of times, and of course, true to University Hospital standards, he is very nice. And he does Ironmans :)  He again explained what we could expect and how he felt things would go.
The Pediatric Anesthesiologist came by. Knowing how much schooling and time it takes to get into something so specialized, I was surprised with how beautiful and young this doctor was. But I was more impressed with how attentive she was to Evelyn's case. I had gotten the record of Evelyn's surgery at the other hospital, and though it was a huge stack of papers, the doctor looked through it all. She called up Evee's cardiologist to consult him. The surgery was actually pushed back an hour and a half for she was making sure everything was in order.
Though I was grateful for how thorough everyone was being, having the surgery start 1.5 hours late was also a little frustrating. My poor little girl was starving. She was crying and crying.

Inconsolable. It was difficult to see her upset and not be able to really help her. Finally she fell asleep.

At 10:40 AM, the OR nurse came over and told us she would be taking Evelyn. Todd and I said our "good byes" to Evelyn. At this point Evee was pleasant and happy. I kissed her, knowing that I would miss her and knowing that the next time I saw her she would be sore.

During the surgery, Todd and I went down to the cafeteria. I was starving and grateful to finally be eating. We tried to not think too much about what was going on upstairs. After we ate, we went to the waiting room and waited.
After what seemed like forever, Dr. S came in to talk with us. The surgery had gone well. Everything went in beautifully, and inside Evelyn looked "normal". He told us that she was just then coming off of anesthesia and we would be able to see her in 20 minutes.
I was so grateful and 20 minutes could not come fast enough! Dr. S had mentioned that there was a chance that Evelyn could skip going to the ICU and straight to the "floor", so when the receptionist came to Todd and I and informed us that we could go to the PICU to see Evelyn, I was a little surprised, but not totally. I found out later that the anesthesiologist made the call that Evelyn needed to be in the ICU. She felt that with Evelyn's breathing already being concerning, it was only wise to be careful.
Todd and I went over to the ICU. We went over to her room, bed 14. I was so excited to see my baby, but was very sad to see what I saw.
Evelyn looked hurt. You could tell she was in pain. It broke my heart to see her that way. I don't think any mother ever wants to see their child in pain, but when you see your baby, who has no idea what is going on, no time to prepare and process the thought that she would be in pain, it is incredibly difficult.

We lifted up her gown and looked at her wounds and the g-tube. It looked great, but sore.
Evelyn's breathing was worse than usual. She always has retractions on her neck and ribs, but it was extending to her stomach. Her abdomen was working a lot harder. Her breathing also sounded very striderous and labored. It was a little nerve racking.
They administered an racemic epi aresol to her, but it didn't seem to help much. Todd finally told me that if they had to intubate her, it would be okay, it wouldn't be the worst thing in the world. Thankfully they didn't have to.

It took several hours for her breathing to start sounding better. It didn't get back to it's baseline until the next morning. The doctors and nurses did say that it was a good thing she was taken to the ICU for she would have just been shipped down here anyway.
Evelyn got some morphine and calmed down and went to sleep. It was tough seeing my baby "stoned out" on drugs, but it was tougher to see her feeling the pain. All day and all night she would wake up, crying out in pain. We would give her another dose of morphine and I would stroke her head until she fell asleep.

I want nothing more than to hold her, to feed her, but both are not permitted right now. Her abdomen is so sore that if I were to try holding her, I may cause pain to her.

Because of the surgery, they have to keep Evee's stomach empty for 48 hours. This is so that the stomach does not expand and rip the stitches out. She does have an IV drip, but unfortunately she can still experience hunger pains. Not cool.

Today Evelyn has been doing better. She's still in pain, but not as much as before. Miss Betsy and Miss Amanda, her PT and OT, stopped by to visit her. I had to laugh for when Evee heard Miss Betsy's voice she started crying. She was probably nervous that she would have to start "exercising". Miss Betsy did get her into a bouncer though.

 For being such a large hospital system, it is starting to feel more and more like a small community. I am starting to recognize and know people that I see in the hallway - which isn't all that difficult since Evelyn has about 15 doctors that take care of her. During the surgery Todd and I were walking down a hallway and saw a doctor that had treated Evelyn during one of her hospital stays. He asked how Evelyn was doing and even came into her room later to see her.

Of course I shouldn't be all that surprised. Evelyn is a very rare, and special case. Her pediatrician even remarked how doctors do love seeing something different and that he was sure that there were all sorts of HEPA violations going on with people discussing her case. Which I really don't care. I feel that the more people talk about her case, the more ideas can flow. But besides being a medical abnormality, I have not once felt that a doctor saw her as a potential "paper", or a test tube. Rather I have felt that Evelyn's doctors have all been very concerned about her, have viewed her as a very special baby, one that many have fallen in love with.

I am getting more use to spending my time, and days, in the hospital. I feel incredible appreciation to the nurses. They take such great care of my girl, and they will usually chat a bit. It can be incredibly lonely at times. I am one that appreciates time to myself, but sometimes it can be a little overwhelming in the hospital.
My brother, Reagan, came in from Utah to watch my boys while we're in the hospital. Reagan will do a good job. But he is a 25 year-old bachelor. When I told Saint Dorothy about Reagan coming to help, she asked my friends what they thought about bringing meals in. Without me realizing it, during Relief Society a binder went around the room and in it was a sign-up sheet to bring dinner in to my home for my brother and children. It filled up so fast that I even was asked afterwards if I had room in my freezer for some extra meals for those that were not able to sign up. I was flabbergasted. Todd and I have tried as much as we could to not have Evelyn's problems affect other people's lives. We try to be self-sufficient, but that can be difficult with Todd's already busy schedule, four other children, and no family in the area. I have been incredibly humbled and touched by the love and support that I have found and received from my friends and members of my church. It has been difficult and there is no way that I would still be standing if it weren't for all of their help. Just even knowing that there would be at least one good meal a day available to my kids gave me peace in the prospect of leaving them for a week. 
Today was Todd's only day off of work this week. So he brought the boys and Reagan in to see Evelyn. I was so excited to see them, and they were thrilled to see me. Mikey and Roger asked the nurse a thousand questions about all of the equipment in Evelyn's room, and the nurse was very kind to answer their questions and even later brought them stuff to color.

Reagan got to finally meet my little girl. Normally Evelyn is very social and happy, but she was in pain, so he didn't get to meet the "real" Evelyn.

Evelyn hadn't smiled once since her surgery, another clue that she isn't feeling great. But she did smile for her brothers, I think she has missed them too.

After a couple of hours it was time for the boys to leave. I gave them hugs and kisses. I hated to see them go.

Roger asked me, "Is it better to be with four of your kids and have one missing, or to be with one of your kids and have four missing?" Roger is very sensitive and I knew that it was hard on him to have me gone. I told him that if that "one" kid is in the hospital, that I need to be with the "one". He understood, but kept saying that he didn't want to be away from me.
I know Buddy, me neither.
Hopefully Evelyn's recovery keeps going well. The nurse thinks that we may be out of the hospital by this weekend. I hope so. I do want to be back home and with my boys. But I do know how it is to go home prematurely and be worried sick the whole time. I am not pushing it one way or another.

I just want my girl happy again.