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!




Friday, October 2, 2015

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! 






Thursday, October 1, 2015

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!








Monday, September 28, 2015

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.








Wednesday, August 26, 2015

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.
















Tuesday, August 18, 2015

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.









Tuesday, July 14, 2015

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!