Sunrise update

Little Sunrise is doing much better. We are hoping that this will be our last night in the hospital. He is sleeping right now, which is a big improvement. For most of the past 5 days he has not been able to sleep longer than 20 minutes without waking up screaming. I have also slept several times today, so I feel like I can finally think more clearly. The days and hours have seemed to melt together. He is also eating much better. When we were back in the hospital in American Fork, he would go 6 or 7 hours without eating, and then could only eat out of a bottle and not nurse. Now he is eating about every 2 hours and nursing for about 20 minutes. He has developed a rash, but the doctor said that it is a typical viral-looking rash. They are still operating on the theory that he has a bad viral infection.
So (mostly for my memory) here is an overview of what happened:

Wednesday: Thunder left on a backpacking trip with the Scouts, getting a late start on their way to Coyote Gulch. The kids and I are fine. Sunrise has been grunting and has seemed more sensitive for a couple days, but he had just been circumcised so I didn't worry too much. But that night, from midnight on, he cried and cried. He ate around 1 am, but then didn't want to eat again. Anytime I moved him or touched him, he cried more.

Thursday: Finally at 5 am, I took his temperature and he had a fever of 100.2 under his arm. Due to their late start, Thunder and the Scouts were still at the trail head with cell phone reception. I called him to let him know I would be bringing Sunrise into the doctor. As soon as the pediatrician's office opened, we were in. Some wonderful friends took the other kids. The doctor took his temperature, noticed his irritability and noted that is skin was mottled (patchy in color). She went out of the room to consult with another doctor and came back in. She told me to not even dress him, and to go straight to the Pediatric unit of the hospital. We left right away and I called Thunder on the way. They had started hiking and were just a few minutes away from losing cell phone service. I told him to get home right away. He was able to hike out (uphill in sand) and started the 5 hour drive home. At the hospital, the Pediatric unit had a wonderful nurse waiting for us at the door. Her name was Summer. We went to a procedure room where Dr. Edwards met us and they started an IV line, did a lumbar puncture, collected blood and mucus for tests, got a urine sample via catheter and did a chest x-ray. He was a sickly grey color and his skin was still mottled. He was extremely irritable. He hardly had any urine and it was cloudy due to being dehydrated. The doctor later said he was "very concerned" when he first saw the baby. I just knew little Sunrise was not himself, but I didn't know how serious it was. For the rest of the day he was poked, prodded, and evaluated multiple times. He was still grunting and making strange throat noises when he exhaled. He did not eat often or suck very well when eating, so I started to pump my milk. Thunder arrived around 5 PM and it was so good to see him. Our wonderful friends were still taking care of the other kids. Test results started coming back. Everything was normal except for low sodium levels. It was a long night and I cried a lot.

Friday: Little Sunrise was on constant IV fluids, Tylenol, and the antibiotics ampicillan and gentimicin. He had an IV line in his left arm, chest leads on and an oxygen probe. His little eyes looked so sick. Where he had been very feisty and irritable the day before, on Friday he was very tired and lethargic. His eyes would roll around and not focus. He went 5-7 hours between feedings and had a very weak suck. He was still grunting. A respiratory therapist came and listened to him, and started him on oxygen. His oxygen saturation was actually very good, but he kept grunting and making strange noises when he would exhale. More tests came back negative. They rechecked his sodium and it was lower. He would shake every so often, and his heart rate was so high (around 200 beats per minute). Dr. Edwards consulted an infectious disease expert and changed the meds- replaced the ampicillan with cephalosporin and added acyclovir (an antiviral drug). The new nurses were not as good as the day before, and botched a few blood draws. Sunrise's blood was clotting very fast, which gave them trouble. A coleague of Dr. Edwards came in that afternoon and checked him out, and said we would be staying at least one more night. Then I thought he left, but he came back 20 minutes later and said he really felt that Sunrise should be moved to Primary Children's Medical Center. Dr. Edwards also came in and they both said that while there wasn't any one thing that was extremely scary, that they both just felt that he needed to be more closely watched. His sodium levels needed more careful attention and so we prepared to be transferred. The transport team came with their "ICU on wheels" and asked us for a complete history. Thunder and I followed the ambulance up to PCMC as it climed up the hills in the midst of a thunder storm. When we arrived Sunrise was greyish-green again and skin was mottled. His eyes looked so sick. Again, we didn't realize quite how bad he looked to the nurses and doctors here, until later. All through the night, they were in and out checking on him, drawing blood for tests, and he got a chest x-ray at 2 AM.

Saturday: Sunrise started looking better in the morning. The head doctor came in and said Sunrise was making good progress and also mentioned that he had given everyone a good scare when he first arrived. She said that when he came everyone was very worried about his color and his sodium levels. She said that at some point Sunrise's kidneys miraculously decided to start working at regulating the sodium levels and began to produce a lot more urine. He was looking pink and his eyes were focusing. However, by the afternoon he was looking pale and grey again. Our nurse came in and said that she was very concerned and that the doctor had ordered an abdominal x-ray to check for a necrotizing bowel disorder. Sunrise was wisked down to the x-ray room right away. Thunder had left to go to Cloudburst's dance recital, so I texted him to come back right away. Even though it usually takes an hour or two to find a radiologist to read an x-ray, our x-ray was read immediately. Thankfully it was also negative. They continued to watch him closely. His sodium levels were back to normal so they discontinued his IV fluids. They also stopped the antibiotics because none of the cultures grew anything. He started looking better, and started eating more often. Thunder's parents arrived from California and it was so good to see them. The kids were also very excited to have Nana and Papa in town.

Sunday: Sunrise has continued to gain strength and health. He still looks pale and has been very fussy. He is eating every 2 hours and taking a little bit longer naps. He still wakes up crying after about 40 minutes but can be consoled. The doctor came in and said that he will probably be able to go home in the morning. We are in for one last night of checks every 4 hours, and I am hoping I won't need to pump any more. Sunrise and I have both slept more today. I finally feel like I can think a bit more clearly. I think I was getting a bit delerious from getting sleep an hour at a time. Thunder has also been stretched thin between being here and also giving our other kids at home love and attention. Our friends and neighbors had been so wonderful in helping with the kids, dinners, getting groceries, folding laundry and helping in the house. It will be good to go home in the morning, as long as one last sodium check comes back normal. This morning Tornado threw up at home, so we are hoping it is something he ate, and not more sickness!!

All the kids ended up in bed with Thunder one night. Looking back there have been lots of little blessings:
that Thunder's backpacking trip left late and also that he drove;
that Sunrise takes a pacifier, since it was an incredible source of comfort to him;
that we have such wonderful friends, neighbors and church leadaers that our kids trust and listen to;
that we have family able to come help on a moment's notice;
that our pediatricians listened to just a gut feeling that Sunrise should be transferred up here to PCMC;
as I was thinking about church services this morning, two men knocked on our door to offer us the sacrament;
that I have a sister who is a pediatric nurse, who answered so many questions;
that we have had wonderful nurses and doctors who really know what they're doing and also really respect a mother's intuition (and father's of course);
that so many people are praying and concerned for us- prayers have been offered up in many different temples and churches;
that we have been reminded what special blessings our children are to us... it has been a special time for us to really pay attention and reflect on the joy these little spirits bring to our home.

Hopefully the next post will be from home! Thanks again for your love, support and prayers.