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.

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!

 

 

 

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!

Surprise ending to our day..

So today began and ended on completely different notes. Parker woke up this morning very cranky, groggy, and just overall not feeling well. He made that obvious to everyone. He was not drinking, nor was he eating, and the team was starting to get very nervous. They began talking about putting his feeding tube back in this evening if things didn't turn around. I was heartbroken the second she uttered the words, but still able to think clearly enough to advocate for Parker. My logic was that he vomited several times yesterday and woke up with diarrhea this morning, so his tummy had to be torn up. I started asking him if different things hurt, like his nose, throat, head, belly. The answer to everything was "No!", except his belly. That's when he said "Yeah". I asked him all the same questions again, just to make sure it wasn't a fluke, and he answered the same way. So I asked them if we could give him something to settle his stomach and give him a fighting chance to turn things around on his own before we jumped to putting a feeding tube back down his nose. The team agreed and at 11:15 we gave him Zofran. By 12:15 he was eating and drinking, smiling and playing, and being polite to people as they came and went. The nurses and residents were amazed by the quick 180 he did. I'm happy to report that with a lot of work on his part, and our part, he just finished his 1200 ml goal. Thank the lord! They have lowered his IV fluids significantly, are giving him Zofran every 8 hours, and closely monitoring his labs. If this trend continues, we may actually bust out of here in the foreseeable future! Say prayers that he keeps this up and I didn't just jinx us again! 

Just another day in the life...

So another eventful night at CHNOLA. Parker's one and only sippy cup that we have here busted around 10:00 last night. I went to Super Target to look for more, but they didn't have "HIS" cup. I bought three different types and none of them are working. We are lucky to have such great friends, though, because I called my fellow super mom, Erica,  at the butt crack of dawn this morning and she is almost here with three of his cups from home.

Around 2:00 Jason woke me up to say that Parker was really warm. I took his temp and of course it comes back as 101.8. The nurse comes in to double check it, gets the same reading, and then comes back with the Tylenol. After 30 seconds he puked it all back up. Now we have to change him, his bed, and his IV sock. He was not happy about any of it, and we needed to find out if he could get any more Tylenol. Luckily he was able to get a second dosage and the fever broke. 

Then his IV machine went off every 2 minutes ALL night long, but the IV was still flushing so we kept trying. Eventually I turned it off, and the nurses decided to have it replaced. We went down to anesthesia this morning to get a new IV and low and behold it was completely BLOWN. It was completely out and kinked sideways, so an entire night of fluid was wasted. And of course as soon as they took the gas mask off of him, he sat up and started heaving up bile. The anesthesiologist said he could have just been from stress or nerves, but we shall see. The plan is still the same, get him drinking and get him home!

If ANYONE deserves credit where credit is due during all of this, it is my husband. That man leaves here every morning before the sun comes up to go to work, and is back here every afternoon around 6:00-7:00 to spend the night with us. It's not easy, because we are only getting 3-4 hours of sleep a night with everything going on, but he has yet to complain about it once. He has also managed to go home and disinfect the house, toys, and bedding. He is truly our superhero!

The viruses strike again..

I Yesterday morning Parker woke up pretty groggy. I should have known that something was up when he come marching into my room at 7:00 with his IPad in tow, wanting to "snuggle". Usually when he wakes up, his first words are "cereal" or "outside". All he wanted to do was lay around and watch cartoons. By early afternoon he was running a low grade fever, and we were seriously struggling to get him to drink. So when he woke up this morning with 101.8 fever and still wasn't drinking, we decided it was best to bring him in. We didn't want any back and forth between the pediatrician and our nephrologists, we wanted quick answers. When we got here I'm pretty sure almost every test or procedure possible was ordered. Every blood test or culture, viral panel, flu swab, strep test, stool culture, urine panel and culture, chest x-ray, kidney ultrasound, and more was done. His creatinine came back a good bit higher than we would like, which meant that we needed to make sure his kidney was safe. Luckily with IV fluid it came down significantly, and his kidney ultrasound looked perfect, so we have concluded that it was simply due to dehydration. He was given Tylenol in the ER around 4:00 for a fever of 100.7. The fever broke and and didn't return until the following evening. He woke up from his nap really groggy, and his cheeks were flush so I decided to check his temperature. He only felt slightly warm, but low and behold his temperature was 102.8. His viral panel came back positive for two viral respiratory infections: parainfluenza and adenovirus, so we started breathing treatments to break things up a bit. More blood cultures were ordered just as a precaution, and those results won't be back for a few days. As of now, the plan is to get the fevers under control, get the coughing under control, and get him back to drinking his fluid goals so we can go home!
As always thank you for all of the prayers and well wishes.

Parker turns FOUR!

Four short years ago we didn't know what life would bring, but this week we will celebrate a lot of crossed hurdles, life accomplishments, and godly miracles. We are blessed beyond measure, and cannot wait to celebrate many more! We love you to the moon Parker Joseph, and don't you ever forget it.

Parker starts Pre-K!

I'm It's so hard to believe that we have a preschooler. These last few years have flown by. Our son is no longer our "baby", he is now our big boy going to big boy school.

Parker's first family vacation

Another milestone has been met for the Porche family. For the last four years life has been hectic to say the least. Between dialysis and transplant, our family hasn't been able to enjoy a vacation together. Those events not only took time away from us, but they took a lot of our financial resources as well; making luxuries like vacations a far away thought. This year is the first year that we are medically and financially able to take Parker away from reality to enjoy a week of family time, and he loved every minute of it. We are already looking forward to the next trip and making more memories with him. This year we got to enjoy the white sand and turquoise waters of Destin, Florida. And while I was a bit concerned on how his anxieties would handle the sand and ocean, he definitely surprised us. That child loved the water, and asked to go swimming as soon as his eyes opened in the morning. We are so thankful that we are in a place in our lives where we are able to enjoy these experiences!