Tuesday, May 31, 2011

it's a boy!

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On Mother's Day, we got a call early in the morning that Ryan's mom was sick and his step dad asked if we could take the Kidlet for the day while he straightened everything out. It wasn't a problem, so we hopped out of bed and went and got him and didn't know what to do for the day, so we went to Disneyland. Why not? Ryan's mom was feverish and sick on Saturday night and by 7am on Sunday (Mother's Day) she was completely irrational and confused. She didn't know who anyone was - including herself - and was extremely combative and anxious. As soon as we picked the Kidlet up, an ambulance was called and she was taken to the ER for an evaluation. At first, everyone thought it was an overdose. She has a multitude of health issues, including a lot of pain problems, and we were all concerned that during the night when she wasn't feeling well she accidentally overdosed herself somehow, which would account for the confusion.

Around noon, we got the call (at Disneyland) that it wasn't drugs but was a massive infection. She was isolated and being treated for an unknown cause but her body was already failing. Her vital systems were extremely weak and she had a small heart attack. By the time the diagnosis came in the late afternoon, she was nearly dead. The doctors determined that she'd contracted necrotizing fascitis (flesh eating bacteria) in a small wound near her shoulder/armpit area and they needed to perform immediate surgery. During the surgery, which went on for several hours, she had two more heart attacks and nearly didn't pull through. In the end, the surgery site was unassuming - something like 2" - but the doctors had removed all of the tissues surrounding the infection and hoped for the best. They told us to prepare ourselves for the possibility that she wouldn't survive. The statistics were not in her favor and the her body was still full of toxins.

That evening, we kept the Kidlet with us and took him to Mother's Day dinner with my family, which he really enjoyed. In the past year, he's really interested in "family" and curious about everyone's extended families. He's met my family a few times and decided that he's over the moon about them, so he was extremely agreeable to eating Indian food (which he'd never had before) and tried all of the dishes, even the spicy ones. My parents adore him, too, and my stepdad is overseeing a construction project in the shopping center where the restaurant was, so he took the Kidlet on an impromptu tour of the construction vehicles and let him drive one of the crazy machines. Needless to say, he was thrilled.

We took Kidlet home that night and Ryan's stepdad filled us in on everything that was happening. He had been advised that we should all be hyper-vigilant about fever, fatigue, and infections of any sort. The gestation period for the infection is pretty short and that if we passed the 24 hour mark, we were probably fine, and if we got through 48 hours without any symptoms there was little chance that we'd get sick. There's no way of determining the source of infection (it's a strep infection, so it can live anywhere and be carried by anyone) so we were all a little rattled. Because of the sudden hospitalization, Ryan and I would be called upon to help take the Kidlet to and from school because his stepdad couldn't get out of work. It was no problem, and of course we immediately agreed.

Tuesday morning around 5am, we got a call from Ryan's stepdad asking us to come and get the Kidlet right away. His ankle had started aching during the night and by 5am was swollen to double the size. The infectious disease team said that he needed to be quarantined right away. We once again picked up Kidlet in the wee hours and an ambulance was called. I cancelled my business trip to Minnesota, scheduled for the next day, and took the day off from work to spend with the Kidlet and monitor him closely. I was creeped out about taking anything from the house, so after we had some breakfast I took him to Target to buy him some clothes. It was well worth the money to not have to wonder about if his dirty socks had been exposed to something...

Again, I did what any good aunt would do: I took him to Disneyland. The doctors had given him the "all clear" because he would have started showing signs of infection and although he was allowed to go to school, I wanted to watch him every second. I'm sure that Disneyland was probably not the smartest option, but I figured why not? Both of his parents are in the hospital, suffering a debilitating illness that has an extremely high mortality rate. Why should we sit at home and worry and fret? It was better that we have some distraction. If his parents died that day, would he look back and say "gee, I wish I'd been sitting at home on the couch?" or would he be glad that someone kept his mind busy and full of fun? And it was a good enough distraction that he wasn't at all bothered and didn't protest me taking his temperature every 30 minutes. It might not have been the best decision, but I stand by it.

A few hours later, we got the confirmation that step dad, too, had a necrotizing fascitis infection, but strangely it was a different strain than what Ryan's mom had. He was immediately sent to surgery where they expected that they would need to amputate his leg to stop the spread of infection. During this time, Ryan's mom was in a medically induced coma - I think she was "under" for about 3 full days - so she didn't know what was happening. Ryan and I had to prepare for the worst and started digging up the legal paperwork for Kidlet's custody (it's complicated, but Ryan's sister gave full custody of Kidlet to Ryan's mom when he was an infant and there were no provisions for who would be next in the custody chain -- Ryan's sister and boyfriend have not been involved at all in Kidlet's life and have been M.I.A. for the past year or so, no one knows where to find them. It's been a long-standing understanding that we will eventually inherit the Kidlet. Ryan's mom and stepdad are grandparent age, which means in a few years they'll need more help than we can offer from the side lines. We've kind of thought that within the next year or two, he'll start transitioning to live with us part-time, so it was a bit of a shock to have it happen all at once. I just smiled and told Ryan "it's a boy!") and I started calling my company's "assistance" lines to find help [one of my co-workers had a complicated adoption and she had advised that our company provides free legal assistance and even monetary help with adoptions].

Fortunately, step dad's leg responded well to the surgeries. The infection had gotten into an old high school ankle injury (apparently it likes scar tissue) so they had to remove bits of tendons and muscles and bones and a good deal of skin, but they were able to spare his leg. There was lingering threat of a foot amputation or even a joint-freezing type of operation that would immobilize his foot, fortunately it never had to go that far. All this time, Ryan's mom was just coming out of her "coma" and was extremely disoriented. She couldn't understand what had happened to her and couldn't piece together that her husband was in the hospital, too. Step dad had an extremely positive attitude (the nurses all commented on it) because he was willing to fight for his life. He told the surgeons multiple times just to remove his foot, if they suspected that it would help. He pushed them to be aggressive because he'd rather be missing a limb than dead. Ryan's mom, however, was much more complicated. Because of the injuries - from the infection, the surgeries, the fevers, the heart attacks, the organ failures - she was not "herself." She was suffering from a mild dementia that made her extremely difficult. We decided not to take her cell phone to her (when she was finally allowed to have it) because as it was, she was calling people at all hours of the night to ask for things and get irate. The nurses helped her to call her husband in the other ward (they were each in individual isolation) but she didn't quite comprehend that he wasn't at home. She got extremely belligerent about needing a specific hair clip from home and made such a fuss that Ryan ended up going to her house in the middle of the night to bring it to her. When he was there, she started telling him all kinds of confused-sounding stories about why she was there and how people were just trying to torture her.

All of this and she still wasn't "out of the woods."

For the next few weeks, the Kidlet lived full-time with us. He wasn't old enough to visit in the ICU so he only got to talk to his 'parents' by phone. Miraculously, he was totally ok with it. He was well behaved and calm and very understanding. After about a week of "sleeping over" he decided that he would like to just stay with us forever. We told him, of course, not to say that to anyone else -- especially in their fragile states -- and we knew that as much as he loves us, he was really just enjoying the change of pace. We had a different routine, one which quickly evolved into "wear out the kid's energy!" which he thought was super fun. Every night, we'd go for a long walk around the neighborhood and each day, we'd stop at a different park or playground. We quickly learned some parenting "tricks" to getting your kids ready for bed: make them run off all their energy! We had running contests and climb-the-slide-as-fast-as-you-can-contests (somehow Ryan and I lost every time!). The Kidlet also had recently developed a love for basketball, and he's really good at it! So we'd make him run to the courts and do laps after each missed shot. It was excellent exercise for us all, I think we all slept better!

At the end of the month, the parents were ready to be released from the hospital. There were several delays because of reactions to medications and the fact that they'd need to go home in tandem to take care of one another. Before they came home, we had to get their house in order. There are several cleaning services who specialize in drug-resistant infections and I'd considered hiring one until I saw the price tag. It was around $3,000 and I don't have that kind of cash lying around. Instead, Ryan and I suited up - literally, we wore face masks and gloves and disposable clothes - and cleaned the place as best as we could. We used something like 5 cans of any-surface Lysol to soak all of the cushions and things that couldn't be washed. We scoured counters, toilets, and tubs. We also laundered anything that wasn't in a drawer in extremely hot water and double hot-dried them. It was... excruciating. Cleaning is NOT my thing, for sure, but in a face mask it's hot as hell. We were drenched with sweat (how do surgeons do it?) and completely exhausted.

They finally came home on a Wednesday, which turned out to be one day before Ryan and I were scheduled to leave for Phoenix. We'd considered just taking Kidlet with us, but everyone volunteered to help for the long weekend. My mom said that she'd take him, the parents said that they thought they could manage with some daytime help (since he was in a leg cast and she was only working with one good arm). We felt terrible about leaving, but we were both so mentally exhausted that we let everyone else pitch in and we went to Phoenix for Comicon.

2 comments:

Anonymous said...

He's a blessed little guy to have so many people in his life that love him.

I too feel it was better to keep him mentally and physically busy so he wouldn't worry and time would pass faster.

I think it is great that he enjoys your family and has developed relationships with them so he feels comfortable staying with them too.

Hope they are still on the mend and doing well. Infections are bad enough to overcome, but to have the flesh eating bacteria must be absolutely horrible.

Take care.

Chris Jepsen said...

Wow! That's quite a story! Hope everyone's doing a whole lot better. What a brave kid. And how great that you guys were there for him.

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