Thursday, May 10, 2012

Quick changes

We have learned over the past 4 years not to be surprised when our plans are changed in a split-second. My OCDness of wanting to know what is happening at what time and where a few weeks in advance has been replaced with the capability to fly by the seat of my pants fairly well.

This past week was like every other week busy. Yesterday was by far our busiest day of the week with plans of me volunteering in Emma's class, Jay wrapping up his trip to South Florida for meetings, and the girls having one last practice and their performance in the mini production for Rejoice. Only, all of these plans were thrown into the air when Nate woke up vomiting.

Within about an hour, I knew that he needed to get to the hospital, so I made several quick phone calls trying to juggle the girls schedules by farming them out to people who could take them to their practice after school, getting a hold of Jay who dropped everything and immediately started making the long drive home, and making sure that some of his doctors knew that the little guy was headed in. We have so many friends here that will help us out in a second, and that is such a blessing. It truly does take a village to raise my children sometimes.

Nate was quite sick when we reached the ER. They quickly got him back and immediately started an IV and dextrose. His labs showed that his body was in stress with several of his metabolites being significantly off. His lactate was high, his AST and ALT (liver labs) were 194 and 278 when they should be under about 40, and he had an incredible amount of ketones in his urine measuring 150, along with several other labs being abnormal. Obviously the little guys body was in quite a bit of stress.

The theory at this point is that he has contracted some virus that caused him to start decompensating quickly and for his liver to freak out a bit. We have seen elevated liver numbers in him several times, but nothing like the labs we saw yesterday. The other strange thing is that his white count was elevated and his absolute neutrophils were significantly elevated as well. This "left shift" is usually seen in bacterial infections, but we couldn't find any source of infection and he has improved with the massive amounts of fluids they are pushing through him, so it seems that he doesn't truly have a bacterial infection. Perhaps it is just his immune system freaking out a bit?? His poor little body always has us scratching our heads over something.

After several hours on 150% maintenance fluids, the little man started to perk up late afternoon. And by this morning, he was back to his funny, cute, and ornery personality. We started g-tube feeds a little bit ago at 10ml/hr and are going to slowly work our way up to a rate that we can go home on. If he continues to do well, hopefully we can go home tomorrow.

I know that I have mentioned several times how much we love our team of doctors and nurses here, but I am still constantly in awe at the care we receive most of the time. Not only have we been under the wonderful care of the general peds team here, but we have also been able to be in close contact with several of our "regular" docs...with a few of them coming in to see how Nate was doing, even though he wasn't on their service. It is amazing to see the care and devotion they have for the little guy and our family, and I am so thankful for them all.

And with this being National Nurses Week, the Natester has really enjoyed catching up with all his peeps here. He is on a different side of the floor than he is usually, but several of these precious souls have come over before work, after work, on their breaks, or on their day off to come and visit with the little fella. And he is soaking up every last hug and kiss from them. I love seeing the relationships he has with his caregivers.

I really missed not being able to see the girls' performance last night. They have been practicing for it all spring and have been so excited about it...but I am so happy that Jay was able to get home in time to go to it. The girls are extremely resilient to the quick changes we have to make periodically and to being bounced around from family to family, but we do try to make things as normal as possible for them when we can.

Thanks for your prayers for Nathan. Yesterday morning was the first time that the little guy has frightened me with how quickly he went downhill. But I am so thankful with how well he has responded to the treatment and hope he will be able to head home in the next day or so.


Kyla on May 11, 2012 at 10:55 AM said...

I'm so glad the fluids turned him around! Hopefully you guys will be home soon!

I have a question for do you know when to take him in? Our policy with K has always been to stay home as long as we can manage (we use her glucose as a marker and if we reach a point where we can't raise it up to where it needs to be, we go in). I'm just curious how other people gauge that.

Amber on May 11, 2012 at 6:50 PM said...

Kyla, good question. Its been trial and error over the past few years of knowing when we can keep him home and when we can't. Nate gets a certain look to him when he needs to go in. He got "the look" quickly this time, and it took me about 20 minutes to pack a few things and call various people for help with the girls. By the time we got the hospital, I could barely keep him awake. He was really, really scared me. So, it just really depends on the kid. If they do okay with illnesses and stressors, you can ride it out at home. But if they have a tendency to decompensate, you learn to see those cues that they need some additional help. Hope this helps.

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