No more double diapers!

So we met the best doctor in the world today. Honestly, if every doctor would take notes from him, the world would be a better place. When he walked in, he addressed Parker first. He made Parker feel comfortable with him before addressing us. That's really important to us! You're not here to see us, so you don't need to come in and go straight to firm handshakes and cold introductions. He took one look at Parker and said, "he looks good to me, so what are we doing in here?" We were in one of their urodynamic study rooms. So we explained that Parker was post transplant and that his bladder had never been used. His reaction to that was "oh, we don't need video studies! That's overkill. Take that catheter out and let that boy pee! He will do just fine on his own!"

 Can I get an Amen!? He will do ultra sounds and check ups regularly just to make sure that his bladder is stretching appropriately, and that urine isn't backing up into the kidney. But, the Foley catheter is officially out! He also went ahead and scheduled the stent removal. It's a minor, short outpatient surgery. He said it usually takes about 20 minutes, but Parker will be put under. He asked when Parker's last nephrology appointment was scheduled for, so I told him it was November 21st, and he immediately said "Oh well we have to get this stent out before that so we can get you guys home for Thanksgiving!". So stent removal is scheduled for November 18th. We do our first ultrasound Monday to check on his bladder, so say a few prayers! 

He's so big! 

He found the stickers! 

Our first appointment

Today we went in for an appointment and actually came home after. Everything looked great as far as labs. Parker's creatinine, which measures kidney function, is still 0.1, which is the best it can be. Super kidney is kicking butt and taking names! He's now only on 6 medicines, which is a lot less than before. He's still taking all of them by mouth, and he's even trying some new foods. He doesn't take any bites, but he walks around nibbling and slobbering on things. So far he really likes cookies and chips. Go figure, huh? 

He is such a huge ball of energy now. We have a hard time keeping him still for feeds and diaper changes. He is constantly running all over the place. 

As far as city life, it is pretty cold up here. We had to go shopping for some true winter clothes. It doesn't get cold like this back at home often so we didn't have much to bring with us, especially Parker. We get out for a little while every day for fresh air, but try not to keep Parker outside for long periods of time. 

Tomorrow we go to the hospital to see urology, and hopefully they can take this foley catheter out. It's a potential source of infection and a pain in the butt when changing his diaper. They are also going to schedule his stint removal. Right now he has a stint placed in his ureter to keep it from collapsing. Since his "plumbing" had never been used, it was a little shriveled. He should be able to have it out by six weeks post surgery.

Right now our last appointment here in Philadelphia is on November 21st. If all goes as planned, and we don't have any more hiccups- knock on wood- we could be home by December 1st!

Freedom... Again.

Well we are fee from the hospital again. The doctors are all in agreement that Parker most likely picked up a virus before we left the hospital the first time. He is now fever free and acting like himself again. We got a couple days of strong antibiotics to protect him, just incase it was bacterial, but all the tests were negative. Needless to say, we are all enjoying ourselves. Jason and I got our first home cooked meal in over two weeks, and Parker has his freedom to roam and his toys back. We don't go back for clinic until Monday. Tuesday we see urology to have a few tests done and see if we can take this Foley catheter out. Say a prayer that we can, because this is just another source of potential infection, and a pain in our behind during diaper changes. In the meantime, we are going to try and enjoy our weekend! 

Helping mom deflate the air mattress.

Reading my book.

Snuggle in mommy's lap.

He thinks he is so grown. 

The best home cooked meal, ever! What's sad is this was cheaper than a pizza delivered to the hospital! 

Not so smooth sailing..

Last night was wonderful! It was our first night back at the apartment, and we all enjoyed it. Parker slept through the night with no fussing or interruptions. But, a little while after we woke up this morning, Parker felt really warm. Jason and I both probably took his temperature 20 times each, and it was coming in over 101 each time. Finally, we called the nephrology department and let them know what was going on. They wanted us to come in just to get a urine culture, so we did. Next thing you know we are going to the ER to be admitted, getting blood work, and starting IV antibiotics. So far everything looks fine. His urine WBC came back low, so they don't think it is a UTI. His labs look great, and his creatinine is still 0.1. We took a blood culture, which should be back in 24 hours. Just like anything else, though, Parker's fever broke on the way to the hospital, and has not spiked again since we've been here at 11:30 this morning. We are all hoping that this is nothing, but all agree that it's better safe than sorry. With him being less than two weeks post-transplant, his immune system is pretty suppressed, so we would rather rule everything out, and being treating with antibiotics just in case. So we are hanging out at the hospital again for the next couple days.


Apparently someone forgot to tell him that he is sick, though! 

We have escaped!

We were finally discharged from the hospital today. We waited around most of the day, because we had some insurance issues with one of our medicines. The tacrolimus- his most important anti-rejection medicine- costs over $1,000 so the pharmacy had to have all sorts of paperwork from the insurance company to fill it out. Around 5:30, the nurse finally came in with discharge papers. Jason and I had flashbacks of when we brought Parker home from the NICU. We both felt like we had to rush him out of there before they stopped us and made us stay! We got back to the apartment pretty late this afternoon, and have been unpacking and getting medicine and food ready. My big guy, however, has been non stop playing and running around. I swear this kid acts like nothing ever happened. 

Don't blink..

It is pure craziness how much can change in the course of two weeks. Okay, not even two weeks. 

Two weeks ago I was hooking my son up to a dialysis machine before bed. Tonight, I am changing pee pee diapers for the first time. He still has a catheter in place until at least Thursday, but we were able to lose all of the bulky tubes and drain bags that went along with it. Now his catheter drains into a diaper, that is inside of two other diapers, and a maxi pad. What can I say, I am OCD, and had to make sure the catheter stayed away from poop. I am pretty sure it is safe! A little bulky, but safe.

Two weeks ago, had you tried putting a syringe-no if you would have tried putting anything- near Parker's mouth, you would have been met with the godfather of all tantrums! You would have needed an army of people, or shackles and chains to hold him down. Today my son took medicine by mouth 11 times and did his mouth swabs four times. I never could have imagined him doing this! We use these swabs to coat his mouth with antibiotics to prevent thrush.

Two weeks ago my child had a weird anxiety about stuffed animals. I never knew exactly what happened. All of a sudden, one day he was petrified of them. I never questioned it, I just kept them away from him. Tonight, like the last few nights, he is snuggling with his teddy.

Last week, had a nurse come in trying to get vitals, all hell would have broke loose. It would have taken the nurse, Jason, and I, just to get the job done. Tonight, I proudly watched as my son never even blinked an eye. He wasn't even phased by the fact that she walked in, much less that she was touching him. 

 I feel like my "baby" is gone- physically and behaviorally. While I know he had to grow up, and it's in the best way possible, part of me is sad. I handed them my baby, and in return they gave me a healthy little man! How do you ever repay that? 

Mr. and Mrs. Popularity..

Jason and I were pretty popular today. It seemed like a never ending parade of people coming in and out of the room all day long. 

First, we had a representative from Apria Healthcare come by. She is a godsend, and if I didn't tell her that one hundred times, I didn't tell her once. Our home medical supply in New Orleans that was in charge of supplying his feeding essentials, couldn't supply everything that we needed. They couldn't give us the actual feeding tubes, the tape needed to secure it, or the new technology to make sure the tube was fixed in the correct place. We were having to get creative with how we got our feeding tubes. Not to mention, the tubes didn't have measurements on them, so that you could tell how far into his belly you were. Therefore, in order to check the placement of the tube, we were having to use a stethoscope, which is apparently dinosaur technology. Here, their tubes have number markings, and I know that his tube needs to be between 32-33. They also use PH strips to test placement. If the PH of his residual is less than 5, it's in the right place. So I was mentioning to the nurse how impressed I was, and that I only wished we had this technology, and the next day our CHOP case manager called to tell me she was arranging that we switch medical supply companies. Today I got a phone call from Apria, and by 1:00 she was here with everything. She gave us everything we need to go home with for a five day supply, and she will be contacted by the case manager when we discharge. When they contact her, she will ship out a months supply automatically. I literally had to do nothing! It was absolutely amazing! Plus, she brought us a backpack for our feeding pump, which our current provider did not do. I had to purchase one out of pocket for $175. 

After she left, we got to meet with our transplant pharmacist. This is something that our local hospital didn't have. Well at least we never met with one. We originally met with Krisha during evaluations, and she gave us the big picture. Today, she went over our complete med schedule, including dosages and side effects. She set up our account on an app called MyMedSchedule, which will really help. Plus, she gave us a list of do's and don'ts for over the counter medication. 

Next on the agenda was our nutritionist. We went over the feeding plan, which will be SO much easier than before. Pre-transplant we had three different powders that we would mix together with water. It was quite the concoction with 10 scoops of this and 1 cup of that, plus 2 tbs of the other- it was craziness! Now, all we do is mix four "juice boxes" with 280 ml of water, and tada you are done. I love simplicity. The plan is for him to have three big boluses during the day of 240 ml's, and then run continuous feeds over night. It's really not too much different than we were doing before, and whatever it takes to make our super kidney happy is what will happen. 

In between all of that, we had transplant coordinators trying to get insurance and pharmacy paperwork done. There was insurance trying to get information for case management. There were doctors, residents, fellows, nurses, CNA's, and anyone else under the sun coming in and out. 

The good news is that all of this is being done, because Parker will be ready for discharge in the next few days. We are still trying to get his Tac level right. It was still a tad low today in the 6's, and it needs to be between 8-10, so we are going up on his dosage a smidge. His c-diff pain is under control, but his bottom is completely raw. He is still having a lot of dirty diapers in one day, but the good news is that there is a lot less in each diaper. Unfortunately, because of the c-diff, now we are being sent home with a Foley catheter and a drain bag. Before, they were going to let us discharge without the drain bag, and double diaper, but now there is a high risk for infection if we do that. Hopefully, we can remove both the catheter and drain bag by the end of next week! 

Some of the best news is that my big guy is taking ALL of his medicine by mouth, which is a huge deal for him! We are so proud of him! 

Looks like winter is on it's way up here. That means we all need coats and winter clothes. :(