Not So Fast

Ben wrote:

Fin had a great nine days at home. But it became clear on Wednesday night that he just wasn't himself. His heart rate was elevated and his fever spiked. He wasn't smiling. We tried to get him to see his pediatrician, but when his fever went higher, we opted for the emergency department. Sure enough, he was admitted to the Pediatric ICU and put through a battery of tests. He got a fluid bolus and loved that... his fever went away and his temp came down. He looked happy and we thought maybe he was just dehydrated. But it turned out that his IV line for his TPN fluid had an infection. Not surprising. That's one of the reasons they don't like to send patients home with an IV. Anything, even under the most careful watch and ideal conditions, can set off a line infection. So, they treated him with antibiotics and he responded and it looked like smooth sailing.

But this is Fin. Shortly after moving him out of the PICU, he started coughing. I don't want to point fingers, but, let's face it, I don't have enough fingers to point at everyone with a cough, and one would have to be going in my direction, too. So on top of his emergent condition, it now appears he has some kind of virus. Good news is it's not slowing down his progress on his feeds and the doctors are still pushing him toward the door. We should be out of there soon, depending on what shows up in his swabs. It could be a cold, flu, residual RSV, something bacterial, none of the above, or something totally different. We will wait and see, but I'm glad that in the midst of this, his sweet little smile has come back.

And, tests are in. No RSV, no Flu, no viruses. He simply has a cough. They'll give him a couple more days of antibiotics, and then, home!

Home, Sweet, Home

Jess wrote:


Hello everyone! I've been saying it's time to do a Fin update, but I surprisingly haven't had the time to organize my thoughts. ;-)

We arrived back at home late Tuesday afternoon, March 2nd. I don't even mind the old house smell, haha! Rory, our Aussie was very, VERY excited, to say the least. It's amazing how weeks worth of hospital living can make mail and dust pile up! We all did the best we could and look where we are now!

A super nurse came out to the house Tuesday evening with Fin's IV nutrition and meds for the week. She showed me how to use his IV pump, mix the vitamins and set up his IV. Quite a process! We are so thankful it's available for home use considering the alternative! Our home nurse, who's pretty great, will be coming out to the house to do blood draws off Fin's IV line twice weekly, change his central line dressing, as well as any additional assessments as needed. We'll also have speech and physical therapy weekly. I have a journal to record Fin's weight, in's and out's, sats, etc, and then I email his doctor (such a great guy) with this info. That, in addition to the bloodwork will help us make changes as needed every few days. On top of this stuff, I get to do real nurse-y things like flush his IV, care for the ostomy, measure, measure, measure and RECORD. It's a lot, but it does make a person feel pretty important, haha! Otherwise, we're settling in, finding a routine with Fin and the girls and working on staying HEALTHY!!!

We are so appreciative of your prayers, happy thoughts, well wishes and good vibes. Stay tuned for updates!


"What lies before us and what lies behind us are small matters compared to what lies within us. And when we bring what is within us out into the world, miracles happen" Ralph Waldo Emmerson