Tuesday, May 27, 2014

Night Time At the Hospital: Saturday night-Sunday morning

This next section includes the most emotional events for me so far. Fair warning for any of you prone to cry.

The doctor told me somewhere around midnight that the decision had been made to put Wayne on ECMO. He went through all the dangers of it. The most likely and threatening was brain bleeds or bleeds anywhere. Because the blood is run through plastic tubes on the outside of his body the likelihood of clotting is very high. To keep the blood from clotting in the tubes, and make sure he has a steady blood flow, high doses of Heparin were used. While it is necessary for the tubes it also means he is getting all of that in his body which makes his blood thin and unable to clot. He also explained that almost every baby, even babies born Cesarean, are born with head injuries from the trauma of birth. In almost any case those small injuries don't ever show up. However, if there was any slight bleed in his head or anywhere the Heparin could cause him to hemorrhage. Even without any sort of injury, spontaneous bleeding is still a possibility.

Just before 1:00 A.M. the surgical team had gathered outside the room. More nurses were beginning to prepare things in the room. I was still holding on to his leg and foot for as long as I could. I had to step away for a minute while someone was doing something to him. I choked down the lump in my throat threatening to choke me long enough to ask if I could say good bye before I walked out. If I thought leaving him for the PICC line procedure was rough this was a hundred times worse. I couldn't stop the tears and didn't really care if I did. I had no idea what would happen in the 1-4 hours the doctor had estimated it would take. They were getting ready to cut into the neck of a very sick baby boy and place tubes in his jugular vein. And I had to walk away.

I gathered all my stuff quickly and walk out before anyone had to ask me to. I thought it might be easier that way. The walk back to the waiting room was exceptionally long. Not that it is a short distance at any time. My sheet, blanket and pillow were still in the floor so I was able to just go lay down. Praise the Lord I was actually able to sleep. I had been afraid between everything going on and the fact that I was laying on a hard floor I would not be able to sleep. I slept solid for two hours which I thought was absolutely amazing.

When I awakened I decided to go back and see if they were done. The walk back was about as long as the walk out. When I woke up I knew there was a possibility that he hadn't made it through the surgery. Walking down the hall I could see the bright surgical lights in his room and lots of people still milling around. I just stood in the hall until someone noticed me and told me they were still working. I went back and laid down and slept nearly an other hour. Upon arriving back again I was told it would just be a few more minutes so I just waited in the hall. The good news was the procedure went well.

The bright lights were on for quite a while and the room was very busy. I just sat in my little space, the couch. Every once in a while I would ask someone a question or someone would say something to me. Before too long, I think it was 6:15 I started getting sleepy again. Bright lights were on still but I didn't even care. I laid down, put a sweatshirt over my eyes, and fell asleep. About an hour later I woke up, rolled over, and thought about what a funny thing it was to awaken to a room full of strangers. I smiled at a couple of the nurses and they smiled back.

There was conversation between everyone. Sometimes I joined in and sometimes I just listened. I tried to decipher some of there medical talk but didn't understand 99% of it. I could usually tell pretty easily when something was good or bad though.

I decided to wander down to the first floor and find some breakfast. I didn't want to go as far as the cafeteria on the other side of the wing so I just went into one of the shops along the "blue line" hallway. One of the things that amazed me about the hospital was the prices of things. The shops along the walkways remind me of airports so I expected the prices to be like that. No! Everything is so inexpensive. I got a bagel with cream cheese and a large coffee for $2.09.  I am sure no one cares about my breakfast, but as I said, I am writing this all down for myself  as much as anyone. I want to remember details. Oh! And just as a random added bonus detail I discovered I like Starbucks Blonde Roast coffee. I don't really like Starbucks but that shop sold it. I tried it out and it was really good!

The doctor arrived somewhere between 8-9 I think. The lights had been lowered again and I was just sitting there slowly eating my bagel and drinking my coffee. He was examining Wayne when he turned to me and said "He is awake." I was very surprised so I jumped up to look at him. The Doctor said he was responding to touch and had opened his eyes. The doctor touched him again and he opened his eyes and began to look around. he look at me and I about melted. This time it was sweet. Later on it was one of the three hardest things that happened during those hours I was there.

The morning passed relatively quickly, as had the night. I had gone into it expecting it to be the longest and hardest of my life. I am sure it was the hardest, I can't think of anything even close to match it, but the time went by quickly since I was able to sleep nearly four hours.

Sometime mid morning I was standing over him again holding his foot and talking to him. The nurse was standing on the other side and noticed a tube or wire wasn't quite where it should be and started to adjust it. Wayne didn't like that at all. He jerked and opened his eyes. He began to stiffen his arms and move them around what little he could in jerking motions. He started trying to cry but no noise would come out with the tubes down his throat. I just about collapsed into a puddle. I began to try to talk to him to see if that would calm him any but it didn't do any good. Soon I had to go back to the couch so both nurses could work.  I wanted to leave the room so badly because part of me was saying I couldn't take it.  The other part of my said "Don't you dare leave him."* Thankfully it didn't last long and he was calm again. After that they had to keep him a little more sedated. Moving the tubes, especially the ECMO tubes can be very dangerous so him jerking around could be very bad. The other reason was he was breathing over his ventilator and it  was messing with the ECMO circuit. (I won't even try to explain that one. It was too complicated)

Sometime in the morning, I am not sure I am getting all these events in order, the doctor was discussing with one of the nurses that the site on his neck were the tubes were was seeping. He said he wanted gauze over it so the amount could be monitored. He went on to say that no one had noticed it before because it was running down behind his head. I had in mind a few drops of blood and didn't pay much attention. A few minutes later I went and looked at him again and noticed the whole back of his head was laying in blood.

When it came time for the nurses to take the cooling blanket out from under him (ECMO was doing the cooling now) and replacing it with a different kind of mattress it was unbelievable. It took *six* of them. Five nurses lifted and one nurse moved the stuff out and the mattress back in. I am not sure how long it took. I think about 20-30 minutes. It seemed like forever. The ECMO tubes are so touchy that the numbers would begin to drop as soon as it was slightly moved. They had to figure out how to get him in the air and keep the blood flowing as it should. Up and down it went like a yo-yo. The number was supposed to be around 100 or above and in a matter of a couple of seconds it could be down below ten. They eventually got him all settled onto his comfy new mattress and his numbers back to being steadily where they belong.

I was there a few more hours before anyone else was about to come back. I can't think of anything else note worthy right now about the morning so this seems like a good breaking point,

*I have gone over it and over it in my mind and I cannot remember if the struggle of wanting to leave was then or when they were changing the pad and the monitors were all going crazy. I am sure it was some of both. I wanted to include it so I just put it in one place.

Part 2: Saturday Afternoon and Evening

Todd, Mom, and I arrived at Children's hospital somewhere around 3:30 I believe. Todd was able to register without any trouble. The worker told Todd that he would have to go to the NICU and fill out some paperwork before Mom and I would be allowed onto the floor. He went up and we began to wait, and wait. There wasn't even a waiting room for us to stay in. We heard from Todd about 45 minutes - an hour into our wait. He said he hadn't been able to see Wayne yet because he was told they were running tests so he couldn't go into the room. Mom and I got very tired of waiting on backless wooden benches so we finally went outside for a while. About three hours after we got there I decided to ask the receptionist (at a different location than the first one we talked to) a question that I don't even remember now what it was. She answered and then asked why we had been sitting there so long. I told her we had been told we had to wait to be able to go upstairs. She got a puzzled look on her face and asked who had told me that. I told her the woman at the first desk. She said there was no reason we had to wait down there. She got our ID and made up our badges and let us go to the waiting room upstairs where Todd was.

When we arrived on the 4th floor Todd had just finally gotten to see the baby. He took Mom back to Wayne's room immediately. Todd's sister in law arrived with the other kids about that time. I cannot remember who went back next but I suppose it doesn't matter. I think Todd took each of the kids back one at a time. Mom went back with Kristi (Todd's sister in law) and me.

As I had expected everything hadn't really sunk in until I saw him. He hadn't quite been real nor had his terrible sickness. When I saw him I fell in love immediately. I had been told at the other hospital that I wouldn't get to touch him but when we got here they said we could. That was quite a wonderful surprise. His little leg was so soft and new born feeling. I just played and played with his leg and toe. I am pretty sure that was when my heart began to break.

When I had to walk away from him it was rough. The details of this next part are pretty fuzzy. I am struggling to remember what happened next. I know there was some more waiting in the waiting room. I am pretty sure mom and Todd spent some time with the doctor while he told them they were considering doing ECMO and explained what that was.

Later in the evening it was decided that Todd was going to go back to the other hospital to stay the night with Monica and I would stay here at Children's with Wayne. Parents are the only one allowed to stay the night so the nurses went to bat for me and got permission from all the people. When they came in to tell me I was allowed to stay they said they weren't allowed by law to tell me anything. She said even though being in the room I was going to be able to tell if something was wrong and hear them talk they couldn't answer any questions. I wasn't thrilled with that idea but I wasn't about to argue with them. I was thankful just to be allowed to stay.

Mom left with Kristi and the kids at 9:30. Todd stayed in the room until well after 10:00 while the doctor went through more about ECMO.
After Todd left I stayed by the baby for a while. The doctor came in and did something then asked me if I had any questions. The nurse looked at him and said "We told her we couldn't tell her anything. Don't make  liars out of us." Dr. S. said "She has bedside permission which means she can know anything there is to know." I was yelling "YES!" on the inside. :)

Not long after that I was told they were going to have to put a PICC line in so I would have to leave the room for about 20-30 minutes. Leaving him was incredibly hard. Each time I left the room that night I didn't know what would happen and if he would still be there when I came back.

Monday, May 26, 2014

Baby Wayne's Eventful Arrival

I am going to attempt to journal some of the events in this journey with Baby Wayne in the hospital. It is times like this that I really wish I was better at writing down thoughts. I will do my best.

This first part I am going to rush through details. Mom and I got to Todd and Monica's house about 10:00 Friday night. She was in full labor. I left around 11:30 to go stay the night at Todd's brother and sister in law's house. In the middle of the night I woke up and saw a message Monica had posted in a private thread on FB that she had been transported to the hospital. I assumed that it was because she wasn't progressing and labor had been so hard from the very beginning. Later that morning Mom told me that the reason she had been taken to the hospital was because the midwife had checked the baby's heart rate and it was very low.

About 10:00 I was getting ready to head back over to Todd and Monica's to pick up mom and take her to the hospital when Mom called. She said it was a boy and he had a collapsed lung and was on a ventilator.

When we got to the hospital we went back to the room to see Monica. The midwives went in with us at the same time. We all sat around waiting to see Baby for quite a while. Monica filled us in with the detail of the night and morning. Most of the time for the next couple hours was spent trying to let Monica rest. We were all, of course, very anxious to see the baby.

I think it was around 1:30 the doctor came in and gave us an update. It totally blew us away. We had no idea things were where they were. He started by telling us that they needed to transport him to the Children's hospital.  He then told us Wayne had inhaled meconium in the womb. When he was delivered he tried to breath but his lungs were stuck together because of the meconium. He actually ripped a hole in his lungs trying to get air. That is what caused the lung to collapse. At this point I still didn't realize just how severe the issues were. He said "He is a sick, sick boy." At that point I think I started to get a slight hint of what was to come. He told us that they would bring Wayne in before he was transported so Monica could at least see him a minute before they left since she hadn't seen him yet at all.

We waited a little longer. I have absolutely no idea how long it was. The doctor came back in and told us that they weren't going to be able to bring him in. Things were too severe and they had to get him to the hospital as soon as possible. He continued to say how sick he was then told us that he might not make it through the day. I was totally not prepared for that at all. It blew me away. Everyone in the room just sat there and looked at him.

Things started to move. Papers had to be signed for them to take the baby. Phone calls had to be made  to set up permission for Mom and me to go see him. Probably a lot more things went on then that I don't remember. They told us to wait about an hour I think before we headed to Children's.