Saturday, June 17, 2017

January 16th

I think I'm ready to share.
This was taken 2 days before his hospitalization. He was totally fine in the days before he got so sick.

I know I shared on Facebook our scary week in January when David was super sick. But I haven't written about it yet. It was scary, a lot to process, and honestly I didn't want to jinx things. But the memories are engraved on my heart & soul, so maybe writing them down will ease the constant anxiety I have regarding everything David.

Monday morning. I went to wake David & start meds like I usually do. As soon as I opened the door, I knew there was something wrong. He was stuck, on his stomach, in the corner of the bed. His arm was bent under him at an odd angle. His breathing was heavy and he was drenched in sweat. I assumed he was in pain and immediately got him out of that awkward position. I cleaned him up and changed his clothes. That entire time, he wouldn't wake up. I thought his breathing was evening out, but took a video and sent it to my husband, mom, and my sister to see what their thoughts were. The video didn't show the shallowness of his breaths. Or his limp demeanor. It only showed him sleeping.

After Kyle woke, we watched him a little longer. Kyle knew something wasn't right as well. Our doctor's office had us bring him in immediately. When I picked David up to leave, I knew there was a huge problem when I noticed his complete lack of head control. When we arrived at our doctor's office, they knew his color was awful, breathing was shallow, and his O2 was 75. I was calling Michael at work to have him come straight there. The ambulance was called. Kyle was crying and not wanting to leave with a friend. I am so glad Michael arrived when the ambulance did. Kyle did finally agree to leave, Michael ran home to grab some necessities, and David and I took a quick ride to the ER. Michael was so quick, he got there very shortly after we arrived.

David slept the entire time. When we got to the hospital, they were finally able to get one blood pressure. And it was low. 75/50 low. His heartrate is normally pretty high (as many kids with neuro issues can be). But that morning, it was raging in the 170's. His limbs were absolutely frozen. They couldn't get an IV or draw blood. In his entire life, I have never seen anyone unable to grab a vein on David. His veins are normally phenomenal. Because of the low pressure and general state in whole, his veins just kept rolling on them. After every nurse in the ER tried for an IV and most of the lab techs tried to get blood, they finally got one IV and about 1ml of blood for labs by using hand warmers to warm him up a little.  The lab questioned if they could even get results with that little amount. The ER dr insisted they better try their hardest.

While we waited for lab results, the staff was amazing. They called the pediatric ICU dr down and she was wonderful. But worried. Extremely worried. We had to try to get his blood pressure back up, so they added a med for that. The ER dr noticed his pupils were enormously different in size. He had a head CT, which was normal. Then labs came back and they weren't good. He was septic and in renal failure. They were showing extremely high white counts. Definitely an infection of some sort was present somewhere. They added bolus after bolus of saline to try to kick his kidneys in gear. And when they added the antibiotics, he needed another IV. More than 50 sticks in his hands, arms, feet, and neck-they were still unable to get one in. The ICU dr was gowned up and ready to do a central line, when one nurse saved the day and somehow secured another one in the crook of his elbow.

We spent 11 hours in the emergency room before he was moved to the ICU. The dr told us we couldn't leave (not that we were going to), because out of an entirely full ICU, David was her most critical patient. I can remember her hugging me, and telling me she had lost a child and was trying her hardest to keep me out of her club. We were so scared and trying to fill our families in while trying to stay calm. Michael is much better at it than me.

A little before midnight, his blood pressure really took a turn for the better and the multiple saline boluses had helped his hydration. Getting labs on him that evening went so much better than it had earlier in the day. And the good news was that his kidney numbers (so many different numbers for different things-lots we had never heard of before) had slightly improved.

All the while, David continued to sleep. And sleep. And sleep. If you know David, he is quite known for his lack of sleep in the hospital. No matter how sick he is. He doesn't sleep. It's exhausting and the reason Michael stays with him on overnights most of the time. He handles lack of sleep much better than I do. I just get overly emotional. The next morning, the PICU dr was leaving for the week and was supposed to be off at 7am. She stayed until noon, waiting on the latest labs to come back. And they came back significantly better. That was they only way she was going to feel comfortable leaving him in someone else's hands. (If you know Dr. Bello at Carle, please give her a shout out from us. She was amazing with us and with David.)

The new dr that came on board for the remainder of David's stay was equally as great. He added a third antibiotic to the mix. I noticed his belly was pretty distended and suggested they do a cleanout while we were there. But before we did that, the new ICU dr wanted a CT of his belly. Which showed exactly what I had thought. Lots of stool. David suffers from chronic constipation due to low tone. This was not our first round with a hospital cleanout, nor will it be our last. So we added golytely through his gtube. David slept through ALL of this. He has never had any type of CT without sedation before. I think his weakness made it that much scarier for me.

After a few days, a ton of diapers (those nurses deserve a huge hand for all they deal with), chest xrays every morning, (Did mention that we could never be sure if pneumonia was present? His xray would look different in every single one of them. Thanks to You-Hoover-Fong for the wonky anatomy.) David was able to wake up for about 5 minutes at a time and start to show a little awareness. His labs were SLOWLY showing improvement. His kidney numbers were coming up and down and his septic numbers were coming down. We had the best nurses. Michael and I took turns going home at night with Kyle, who was having a really difficult time handling this.

Unfortunately, his nothing ever grew on his cultures. And David started having an allergic reaction. To what? We have no clue. He was like a weather vein with his rash. It would start on his face and migrate all over his body. He began to look like the Pillsbury Doughboy. So puffy from all the extra saline boluses. The dr took him off the antibiotics because of the rash and the lack of actually knowing if there had been a bacterial infection needing them.

By Thursday, his numbers were looking much better and there was talk of trying to move him up to the peds floor. But there were no rooms available. On Friday, still no rooms and the ICU dr feared if we sent him up there, he would contract one of the nasty viruses that were floating around on that floor. He chose to discharge us straight from the ICU to go home.

We surprised Kyle on the way home after getting a phone call that morning from his teacher telling us he couldn't get Kyle to stop crying that morning. He was very excited to see David in the van.

When we got home, we watched David like a hawk. He missed another full week of school still trying to recover. I don't know what was raging in his body to cause him so much distress, but his body needed sleep. The first week home, he was sleeping a good 18 hours each day. The next week I sent him to school, still sleeping a lot, but hoping he would be able to start functioning a little more with his typical schedule in place. It took probably a full month for him to get back to "normal" and a full 2 months for me to not be as paranoid about every little thing.

No matter how many times I hear that David might depart this world for a heavenly world before me, doesn't mean I will ever be ready to face that heartache. This was the most terrified I had ever been of facing that fear. I am so grateful to our dr, the ER dr, the PICU drs, our families, our friends, and our school districts for all the love, concern, prayers, and offers of help. Special shout out to my sister for keeping my dogs for a week (they can be a handful) and dealing with her own health stuff. We could not get through events like these without some special people in our lives. And we are so lucky to have all of you. But especially lucky to continue to have life with our boy.