Monday, March 14, 2011

Little Rock, Our new home and the PICU

I took Harper home and put her back to bed. I started packing a bag with things for Ryan and me in Little Rock. I also packed a bag for Harper for a couple of days. I went to bed and actually fell asleep. I probably got about 2 or 3 hours of sleep.

Sunday morning I woke up early and finished packing the bags. Once it was a decent hour, I called a family in our branch, The Grovers to ask them if they would be able to take Harper. They said yes. I woke Harper up, fed her breakfast and got her ready for church so that she could go with the Grovers.  When I dropped her off, Dan (Grover) told me that Arkansas Childrens Hospital was one of the top childrens hospitals in the nation. That was very comforting to hear. It was so difficult for me to leave Harper, but the Grovers have four young children so I knew she would have a great time. I got in the car and made my way to Little Rock.

The drive to Little Rock is about 3 1/2 hours. It was the longest drive of my life! A lot of tears. I know that I must have had angels driving with me because I wanted to drive 90 mph (I never did) and I saw 3 or 4 police cars driving down but I never got pulled over. When I got to the hospital I went straight to the Pediatric Intensive Care Unit (PICU) to see Rigley.  When I got there he was coming back from a CT scan. He was accompanied by Ryan and three nurses. He was so swollen. The swelling was caused by a couple of things. They were obviously giving him a lot of medication and fluids to keep him hydrated. Also, at this point he was in Septic shock also known as Sepsis. One of the symptoms of Sepsis is that he had blood and other fluids leaking out of his vessels into his body cavity and other tissues. When my mom first saw him she said that he looked like a miniature sumo wrestler. He really did. At his most swollen he weighed 25 pounds. His eyes were swollen shut, his hands were swollen into fists and his ears were so swollen that they curved forward. His head, legs and arms were massive! 

The doctors thought that because he was so sick that it may have been meningitis. In order to test for that they would have needed to do a spinal tap but he was too sick and unstable to do that. He just kept getting sicker and sicker. His heart rate was over 200 for a couple of days.

On Monday there was no progress. Ryan's parents arrived Sunday night and drove down to Little Rock with Ryan on Monday. At this point the doctors were assuming that it was a Staph infection. Because he was so swollen they gave him a diuretic to get him to pee and release fluids. There was so much pressure on his kidneys from the swelling that he couldn't pee on his own very well (we learned later the real cause of the not peeing problem). Ryan and his parents stayed at a hotel and I stayed at the hospital. My mom got to Little Rock late Monday night.

On Tuesday the diuretics were helping but only for a little while. A team of surgeons came to observe him and they decided to perform surgery. The swelling was causing so much pressure on his internal organs (lungs, heart, kidneys, liver) that they weren't able to function. They made an incision about 4 inches long right above his belly button and put a small bag (silo) into it. The extra fluid and his intestines were able to go into the bag to help relieve some pressure. So, yes, I could see his intestines coming out of his body, although they were nice and safe in the bag.

He turned one month old on Wednesday. I went to the gift shop with my mom and got him a little gift of big rig trucks because of his nickname. He was urinating well and the swelling was starting to go down. They put in a central IV line to monitor his blood pressure which was good. That night, the attending doctor in the PICU told me that if he hadn't had that surgery that he would have died. He also said that he was still very sick and he could still die. He told us to be prepared to be there for a while.

On Thursday the days started running together. I started to forget what day it was. There was progress but it was very slow. At this point the doctors and nurses were just making sure that his fluids were staying balanced..

On Friday my mom went up to Bentonville to be with Harper so that Ryan's parents could come back down to Little Rock. He was switched back to a regular ventilator from and oscillator (breathing machines). The oscillator was a breathing machine that would keep his lungs full of air and just give him really small breaths. Going from the oscillator to the ventilator was a step up! Also, Friday night he opened his eyes! We hadn't seen is eyes since Saturday. It was still hard for him to open them because he was still really swollen but he could open them for a few seconds at a time.

Saturday was good. Rigley was doing fine. My dad and brother Ezra drove to Little Rock from Georgia to surprise me. They got to Little Rock late Friday and came to the hospital Saturday morning. They brought us a big bag full of goodies. They stayed and visited for a few hours had lunch with us and drove back to Georgia. It was just what I needed!

Sunday morning Ryan's dad went back to Utah. The surgeons came to see Rigley and scheduled him to be closed up on Monday (tentatively). They said that if he was able to get a little less help from the ventilator then they would be able to close him. Ryan and his mom went back up to Bentonville to be with Harper and my mom came down to Little Rock.

The surgery didn't happen on Monday. The nurses started to wean him off of the ventilator to get him ready for surgery. We got an awesome package from my sister. It had all kinds of art to decorate his room with from his cousins. She also made a prayer wall. It had everyone's names on it that was praying for Rigley (I'm sure not everyone. Mostly family and our branch family and stuff).

Tuesday was close up day! The surgery went well. He had a few other tests done to rule out some issues and syndromes.

Wednesday things were still going well. He was able to be weaned off of the ventilator a little bit more. They did an ultrasound to check his kidneys. They also took out his catheter and took him off of one of his antibiotics.

That is all that I have documented really well in my journal. The rest of his stay in the PICU was pretty good. We learned that his kidneys were really sick. He had to have a surgery to drain an abscess on one of his kidneys. He had his breathing tube taken out and was put on oxygen.

Ryan's bosses at work were kind enough to let him stay in Little Rock the whole time that Rigley was in intensive care. After three and a half weeks in the PICU, Rigley was moved to the Infant/Toddler Unit (ITU).

Ryan's mom was amazing and stayed in Bentonville with Harper all of this time and a little bit more, she did go back to Utah to be with Ryan's dad. My mom was able to come back to Arkansas and be with Harper as well.

So that was his stay in the PICU. I will do my best to write another post soon to tell you about the rest of his stay at the hospital. I will also try to update this post with a few pictures soon.


Ty & Kelli Taylor said...

Wow! What an adventure for such a little one! I am glad to hear he is doing better!! PS we need to have a phone date. I am 4 months a long!

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