Saturday, August 27, 2016

Parker's 5th Birthday Party

Five years ago our lives were turned upside down. Every day since then has been nothing short of a roller coaster ride. Our boy definitely keeps us on our toes, and keeps things interesting. We are the luckiest parents in the world, and wouldn't change one thing about it. Here's to five years of miracles!


























Friday, May 20, 2016

Parker's last day of Pre-K

Well, we survived our first year of school. While it came with lots of obstacles, germs, and hospital stays, he still advanced leaps and bounds. His speech has improved dramatically, as well as his socialization with other kids his age. One year down 13 more to go! 


First day vs. Last day







Monday, February 29, 2016

The month of Pneumonia

I swear it feels like we live at CHNOLA these days. We are on our 6th hospital admission since September, so I'm pretty sure they should just reserve a room with Parker's name on it. I mean, we were literally just here two weeks ago. The nurse sort of chuckled when she came in to greet us and said "Parker, Parker... Did you miss me? Didn't I just see you a few weeks ago?" Then she looked at me and said, "Mom I think we have the file under control, I won't make you go through that again. Nothing has changed, has it?" Nope. Nothing has changed in 14 days.. promise!

The day after Mardi Gras we came in to Children's with a nasty cold-like illness. I thought he just missed his buddy Cooper, who was here with RSV, and wanted to come hang out with him. They did bloodwork, viral panels, and chest x-rays. Low and behold Parker's x-ray showed bacterial pneumonia. We spent several days here getting IV antibiotics and fluid before being released with a 10 day prescription of oral antibiotics. Only a few days after his oral antibiotics finished, he started with the same symptoms again, hence the reason we are back. Sure enough, the x-ray showed that the bacterial pneumonia had not shrunk in size, and he needed another dose of antibiotics.

I told Parker that if he wanted to play hooky from school that bad, he could have just told me and we would have stayed home. He didn't have to land us back here. As you can imagine, this cold/flu season has taken a toll on all of us. His anxiety is through the roof, and is showing signs of PTSD due to all of the medical complications he's had. Mom and dad are exhausted both mentally and physically. Every day/night that we spend in the hospital is emotionally taxing. No parent should ever have to hold down or force their child through so many procedures. We just need a break. Please take this into consideration when you go out in public while sick. The simplest of sniffles and sneezes affects our son much differently than it does the general population. He deserves a break and so do we, so please keep your germs to yourself!










Tuesday, December 29, 2015

The dreaded "R" word.

The one word that any post-transplant family dreads hearing is "rejection". Basically that means that your body is fighting off this perfectly healthy kidney, because it doesn't think it belongs to you. It's a fear that we live with every day, and the kicker is that there aren't any symptoms to it. So if you don't stay up to date on your labs, you may not find out in time. Parker's creatinine, which measures kidney function usually stays around 0.5-0.6. When we did labs this month, however, his creatinine was 0.9. The doctors were concerned, so they told us to load up on fluids and re-check labs on Monday. We did everything we could to get him to drink as much as possible, but it still wasn't enough. When the repeat labs came back, his creatinine was still elevated.

The transplant team called us in, and told us to pack for a long stay "just incase". It's the most frightening thing I've ever heard. The plan was to hook him up to IV fluids overnight and see if there was a change by morning. If his creatinine hadn't come down significantly, the operating room was already booked and waiting for a kidney biopsy to rule out rejection.

Luckily for us, Parker responded well to IV fluid, and his creatinine came back down to baseline. Last time he was inpatient, we didn't check labs before leaving, and we think he may not have gotten enough fluid during his stay. After 48 hours of IV fluid, we get to go home and thank our lucky stars that we are so blessed with such a healthy kidney! If I never hear that "R" word again, I'll be a happy woman.

Wednesday, November 25, 2015

Go Big, or go home!

Well in typical Parker fashion, he started our Thanksgiving holidays feeling pretty yucky. It's actually an ongoing joke with our transplant team now, that somehow we get to spend every holiday with them. Maybe they'll start reserving us the "suite" since they know we'll be coming.

On Monday, we brought Parker in to our local pediatrician in an attempt to "nip this cold in the bud". We weren't able to get an appointment until late that afternoon, so we ended up being there pretty late. The doctor came in and immediately said that Parker's cough sounded like an "RSV" cough. He did a complete check-up on Parker, but never mentioned swabbing him. Before he walked out of the room, I said that I wanted Parker swabbed for RSV and flu, so he complied. They swabbed Parker and sent us on our way saying they'd call with the results. It was after 5:00 so we had to rush to Thibodaux in order to get there in time for outpatient labs and chest x-ray. I hadn't even made it out of Gray yet and the nurse was calling to confirm that he indeed did test positive for RSV. Being that the chest x-ray and labs were done after 6:00 we weren't expecting to get those results until the following morning.

Overnight, Parker's temperature spiked up to 103 degrees, so I had already started packing our bags to head in to Children's. At this point I knew it was inevitable. While I was packing, the pediatrician called to let us know that the chest x-ray showed viral pneumonia, and his labs were a little elevated indicated dehydration. We headed straight for the ER at Children's, and his team ordered a direct admit so we wouldn't have to sit and wait in the ER. There was no doubt on whether we were staying, so they had a room waiting for us when we got there. Parker, however, had other plans. When we triaged at the front desk, his temp was up to 104, his oxygen level was low, and he showed major signs of dehydration, so we were considered "too sick" for direct admit. We got more labs and viral panels done, while also getting some much needed IV hydration. Ironically enough, Parker hasn't skipped a beat. The child is hyper as ever, so you'd never even know he's sick.

Once we got to the room, our transplant team came up to tell us that Parker is an over achiever. Not only did he have RSV and viral pneumonia, but he also tested positive for rhinovirus/enterovirus. Go big, or go home, right?

After two nights in the hospital, Parker decided that it was time to go home. He's been fever free for 24 hours, he's drinking well, and his oxygen levels have come up to 98. They didn't re-check his creatinine levels, which makes me really nervous, but the doc is convinced he's had enough fluid. Like I said earlier, the child is as hyper as could be, so it's hard to tell he's really sick. We will keep up the breathing treatments, continue to monitor his breathing to make sure that he doesn't start struggling again, and keep pushing more water to drink. Everything is viral so it has to run its course, and that might take a bit. Thank you for all of the prayers. Say a few more that he keeps doing well, and Happy Thanksgiving tomorrow!

 

 

 


Saturday, October 31, 2015

Halloween 2015

Presenting the one and only Mr. Lightning McQueen! So happy that we were able to enjoy Halloween at home with lots of friends and family. Parker had the luxury of being wheeled around the neighborhood in his fancy wagon, while mom and dad walked him. He had a blast!