Monumental moments..

Last night, which was Halloween, was a monumental moment in our house. For the first time ever, Parker got a real bath. I mean the type of bath where he was submerged in water, splashing, and playing with toys. He has never had this before. While he was on dialysis, he wasn't allowed to sit in water, because of the dialysis catheter. It was a source of infection, and we couldn't risk that. The doctors only allowed us to "sponge bathe" him. Basically, we layed him on a towel and washed him with a soapy towel and then used a clean wet towel to "rinse" him off. 

He was hesitant when we first put him in the water. Of course he was, he had never sat in water! He was clinging to me tight, but I held his hand, splashed the water myself, and gave him some toys. Instantly he was okay. He played in the water so long that we had to drain it and run more warm water. He loved it so much that he screamed when it was time to get out. 

This afternoon he was some kind of cranky. I was trying to finish up some work on the computer, and Jason was cooking. Finally, I set my computer aside and went to play with him. He got up off the floor, and started walking. The whole time he had his arm stretched out and he was making his "ehh" sound, which is what he does when he wants something. When he turned around, I told him I didn't know what he wanted. The only thing I could see in that direction was Jason's shoes, and I couldn't see where he wanted those. He grabbed my hand and we walked. He went straight to the bathroom door and started beating on it, saying "ehh". I opened the door for him, and asked what he wanted in there, all the while thinking he must of hid a toy in there and I closed the door on it. Nope, he walked right up to the bathtub, leaned over, and pretended to splash. He looked up at me laughing. He was absolutely, 100% trying to tell us he wanted a bath. So as we speak, he is splashing in the tub, and we have already changed the water once. I think he will be a water baby like mommy and daddy! 

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?