Our vacation turned into worry on Sunday the 29th of April. It was a sunday like any other. We went to church, we came home and ate lunch, and then it was nap time. The boys woke up from their nap and we went to visit my dad and step-mom. We got home a little late so we put Isaiah right to bed. Owen stayed up and played with Grandma while I got his TPN and lipids ready. I hooked him up, said goodnight, and put him to bed. Everything was fine. He was acting normal and had a great day. After putting him to bed, it was time for my relaxation time. An hour after I put him to bed, I hear him screaming so loud. I ran into his room to find Owen standing, gripping the side of his crib with a death grip. I pick him up, he's shaking and stiff. I think, 'oh no, the signs of a fever going up quickly'. I grab the thermometer (yes we have a thermometer right next to his bed - we also have one in the kitchen, in the bathroom, and in our bedroom - temperature is important in Owen's life) - it reads 99.6. I sit down, holding Owen as he cries, shakes, and begs for a blanket. I try not to give him his blanket because I know that will only make the fever go higher. I kiss his forehead - burning. I check his fever again, 101.3. It's going up so quickly. I look at his skin - blotchy and modeled. I think 'yep, line infection.' These symptoms are classic line infection symptoms. I called the GI doc on call. Meanwhile, Heath is already packing for my trip to Oakland. We have this routine down. I freak out, call docs, and take care of Owen. Heath packs and makes sure I have everything I need just in case we will be in the hospital for a long time. We have a bag at the bottom of our closet. A bag I hate but I know it's necessary. The bag is filled with a few shirts I never wear but are comfortable enough to wear in the hospital, underwear, shampoo, conditioner, toothbrush, toothpaste, laundry soap, hair brush, and deodorant. Heath gets that bag out and starts stuffing it with phone cords, a few shirts and pants, pacifiers, a few blankets, and Owen's stuffed animal he calls doggy (even though its a giraffe hehe). I have the GI doc on the phone. She says that Owen is not looking good for a 3hour drive and we should go to our local ER to get him stable before the drive. My heart sinks. I immediately ask exactly what she wants them to do so I have a plan for them when I get there. I know the hospital will not be ready for a little one like Owen. She tells me to have them take blood cultures from the line and peripherally and then give him a dose of antibiotics before transport.
I get to the ER ready with my ER folder. I keep a folder specifically for ER visits. It carries Owen's most recent discharge paperwork (discharge paperwork gives a brief recent history so I don't have to repeat myself), a current medication list, the most recent TPN and lipid recipes, and lists of doctors and their phone numbers. This folder is a lifesaver and prevents me from having to dictate to every triage nurse we meet. We get through triage and into a room. Long story short - I am a nervous wreck at this ER, lab techs can't stick a baby like Owen who has had countless pokes in his lifetime, doctor decides to run tests that GI didn't ask for - an x-ray. side note: Owen has a chronic cough and had been sick just before this for about a month. We still had him on albuterol so the doctor wanted to rule out pneumonia. Of course, we get an x-ray tech that is on his 3rd day of work. He wasn't sure how to even place Owen on the table. I told him our most successful position and he proceeded. After the x-ray and blood work were done, the doctor came into our room. She said Owen had pneumonia. She talked to the GI doctor who agreed that Owen could go home on 'by mouth' antibiotics to clear it up. So, reluctantly, we went home. (Owen's temp went down after they gave his first dose of antibiotic through the IV).
Monday went smoothly. I decided to call Owen's pediatrician to schedule a follow up appointment. They said he was available Tuesday morning and that was perfect for me to just feel ok about the antibiotics working to clear up Owen's pneumonia. We took care of most of our errands on Monday and, at this point, we were still planning on traveling to LA to see Heath's family on Thursday so I spent most of the day packing up medical supplies to make sure we had everything we needed while we were down there. Owen was completely fine all day. We made sure to give him albuterol regularly to help him as much as we could with the pneumonia. At the end of the day Owen was doing great and slept soundly through the night.
Tuesday we got up early and headed to the doctor. We got to the pediatrician's office and we treated it like every other follow-up appointment - expecting to get in and get out pretty quickly. The doctor came in. He says, "So tell me what happened?" I start to tell the story and he stops me when I said, "It was weird because his symptoms were text book line infection for him. I was expecting to be in Oakland right now." He said that I was good at recognizing the signs because it was a blood infection, the cultures had come back positive. My heart sank, and we were off to Oakland. Luckily Heath had the day off so he took Owen and I to Oakland and was able to drive home and keep the car while we were in the hospital. The rest of the story is pretty much the same as every line infection admission. Although, Owen never did get sick like he was on Sunday night, thank God!
I have to admit, this hospital stay was pretty difficult for me mentally, for a few reasons.
1) Owen had another infection. I can't help but beat myself up about it. I always think about all the things I might have done wrong or could have done differently. This is the first infection he has had with this new line (placed in February) and I can't help but look back at what happened with the line before this one. Once he got 1 infection, he continued to get the same type of infection sometimes only 2 weeks apart, until they decided the line was seeded and needed to be removed. I can't help but think its only an amount of time before this one has to be removed as well.
2) All this gets me thinking about Owen's future. How long can he live like this? How long will his body last before it starts to reject everything that is keeping him alive? Will his bowel get worse with time or will it simply grow and heal as he grows and heals? Too much thinking I guess.
3) Owen misses out on 'normal', again. This simply breaks my heart. We had plans to visit with family. Family we mostly only see, maybe once a year. I want Owen to have that 'normal' and he is always being shifted in a different direction. It breaks my heart that hospital life is 'normal' to Owen. Yet, I am glad that he finds comfort and happiness in such a cold and lonely place.
Owen is happy. I watched him throughout this hospitalization and he truly is happy. He finds joy in looking out the window while eating cheerios sitting on the windowsill. He laughs and plays when they finally take him off precautions and he gets to walk down the hall instead of staying in his room all day. He walks those halls like they are home. He struts down the middle waving into each room with a smile. He brings joy to everyone who walks past him. He smiles and says, "hi" as he waves. He evens lets us know when we should be quiet because a patient in that room is "nigh-night" (as he says it).
This little boy brings us back to what is important in life.
JOY
Joy in the little things, and in all things good or bad.
Thank you Owen for changing my whole life :) You bring me JOY
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