Making the best of the hospital

So many toys!

My morning Mickey Mouse time!

Yucky weather..


Playing airplane with daddy!

Who took my milk?!


Finally asleep. He screamed to eat until he was hoarse!

Shhhh aunt sandy helped me out with that nasty IV! Don't tell the nurse!


I'm bailing out!
I've had a long day..


I missed my chair so much !


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Never goes as expected

Well today was supposed to be Parker's G-tube placement, but as usual nothing goes as expected.

First off, let me say that dropping your child off into a scary operating room with complete strangers, who you are supposed to automatically "trust" with your entire world, is the worst feeling ever. I can't even imagine what I will be like for transplant.

After we left Parker, we went to the waiting room and sat there- not so patiently. Within 20 minutes the surgeon was out and looking for us. I knew something wasn't right. He explained to us that they weren't able to place the peg tube. Apparently, Parker has scar tissue or "something" that is obstructing the area where they need to go through the stomach.

My first thought was, "something"? Apparently, when Parker had his kidneys removed it left a large open area for his organs to shift around, and it could very well be his intestines or another organ.

Second question, "What are the options?".

This feeding tube isn't immediately necessary. It's supplemental, because he needs more calories, so the least invasive the better. That choice would be an NG tube through his nose. As much as I do not like the thought of Parker having a tube sticking out of his nose at all times, this is the easiest for him. The problem with this is that he will pull it out!

Option two is a major surgery. They would have to cut a large hole in his stomach and he would have to be on hemodialysis for 6-8 weeks. All of his doctors- as well as Jason and I- are against this. They are looking for other options as we speak.

So the outcome is that in 2 weeks we will have to choose the NG tube. or whatever else they come up with in the mean time. For now, though, we are heading home!

As always, thank you all for the prayers. Hopefully, this is a sign and Parker will start chugging milk and not need one at all. Well, there is always hopeful thinking, right?


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Surgery #4

Well, we were admitted to Children's Hospital again today. Parker is having his fourth surgery tomorrow. They are putting a feeding tube in his belly that is typically called a g-tube. We always knew that this could happen, and as of lately, Parker's growth was beginning to fall off the charts. Therefore, his team opted to put in a feeding tube to get more calories per day into him. This will also assist us in getting medicines and fluid down without a fight. For those of you who know us, you know that the medicine battle was starting to get out of hand. We have fought against this for so long, but we know now that it truly is necessary and will be a blessing. Chances are that he would have needed one after transplant anyway. What most people do not realize is that Parker will receive an adult kidney; therefore, he will have to consume 2 liters of fluid a day to keep that kidney hydrated. That's not including what he will have to eat and drink for nourishment. It would be extremely difficult, if not impossible, to get him to take all of that by mouth with no arguing. Surgery is scheduled for tomorrow at 1 p.m. Please keep us in your thoughts and prayers as always. Keep Jason and I in your prayers tomorrow morning as well. They are making him NPO early in the morning, which means he cannot have any food. My poor baby will not be happy about this!

9 months old! :)

Wow! It sure has been a long time since I've posted here. I guess the only explanation I have for that is that life has been pretty "normal" up until now. We were doing our best to enjoy it and indulge in every new experience. This entire post will be an update of his progress...  As of March 30, we have a big boy who sits up all by himself!

He has also made his OT very happy by playing with his toes for the first time..or as we call them, his "piggies".

He has two teeth that have been bothering him for months now! These boogers don't want to break the skin for anything!

 His favorite toy (other than my phone) is his jumper..

Parker experienced being in water for the first time.. and HATES it!
He isn't allowed to have typical baths, he only gets sponge baths. Hopefully, this water phase ends after transplant.

As you can see, we have been pretty busy at home, but Parker is being admitted for surgery tomorrow. The time has come that he needs a feeding tube to keep up with his calories. He will also need this after transplant to make sure that his new kidney receives enough fluid. This just means we are one step closer to starting the transplant process. He was 6.8 kg this morning. Once he reaches 8 kg we can start testing potential donors. Hopefully this feeding tube will help us to get there even quicker! Keep us in your thoughts and prayers for the next few days. Surgery is Friday, so I will keep you guys updated! Once again, thank you for all of your support.