Thursday, April 17, 2014

And...Back to Pittsburgh

Sadly, yes...Nolan and his daddy are back in Pittsburgh. I was getting ready for work this morning when I got a phone call from our transplant coordinator. I knew it wasn't a great thing that she was calling first thing in the morning. She said that Nolan's liver enzymes through the roof and GI and Infectious Disease wanted him admitted. Not a fun start to a morning...

So immediately I was ready to pack a bag and had intentions for both Matt and I to head to Pittsburgh. But when Matt and I thought rationally about everything our first thought was Riley. She really has been struggling with us leaving her and we have worked hard these back 3 1/2 weeks to get her back on a routine and a normal schedule. Matt has time off work and it made sense for him to take Nolan and for me to stay back with Riley.

Our nurse was at the house when we got the call that Nolan needed to come back to CHP. I am so thankful because she drew up all our meds and packed up his feeds, medicines and all the other miscellaneous items that Nolan uses throughout the day. I took care of packing his clothes, blankets, diapers, etc. Matt took care of Riley. So, it was a good team effort. We got Matt and Nolan on the road by 8:15 am. Matt and I had a moment feeling defeated, but we got over it quick and went back into "GO TIME" mode knowing that whatever needs to be done for our little guy needs to be done.

You are probably thinking...what do high lever enzymes mean and how to you fix it? This could be simply from one of his anti-rejection medications. That was one of the first things they did. They removed his Rapamune medication. They will run a series of tests; ultrasound, blood work, etc. Hopefully from these tests they will figure out what the problem is.

Matt and Nolan got admitted around 12:30 pm. They are back on 8a with all the wonderful nurses that we love. I know they were excited to see Nolan, but of course no one wants him to be there. Matt has let me know that everything is good...Nolan is in good spirits; he has had some throw ups and blow outs. He did get his ultrasound and his liver looks good and seems to be functioning normally. Some blood panels came back favorably, far, so good.

That is where we are at. I am playing everything by ear. With Easter coming up this weekend and the possibility that this could be a short visit, I am going to stick back home with Riley until we get a better answer as to what is going on. We are all OK and in good spirits. We are realistic that Nolan is still fresh from a transplant and this first year will have its rough patches. Matt and I do have moments that we feel life is dealing us a really crappy hand, but when you look at the "big picture" we are truly blessed. We have conquered so much and will overcome this bump as well.

We do appreciate the continued prayers and want you all to know we feel so grateful for having such an amazing support system helping us through these crazy times. More to come tomorrow morning!


Tuesday, April 15, 2014

Busy Days

I am back!

I am not sure where to start? We now officially have a one year old boy. So hard to believe! Sunday we celebrated Nolan's birthday out at our cabin. It was a fun afternoon with our family and a few close family friends. The weather was amazing and I am so thankful we all got to spend the day outside. Being out at the Cabin has me ready for summer! If the mosquitoes aren't totally horrible this season I am betting we spend much of our time on the Loyalsock Creek.

We had a beautiful birthday cake made by one of my friends, Rachael Thomas. Not only was the cake AWESOME looking (Super Man themed...thanks to our friends in Millville, PA and their creativity), it was absolutely delicious. She made us a dozen cake pops (LOVE!), a cake and a smash cake for our little one year old. We let him at it, and he wasn't interested in eating it, but definitely in to smashing it...then putting it on his daddy's face. Pictures to come soon - I got a new camera and I need to figure out how to get my pictures off my camera using our wireless Internet. I hope to have them tomorrow!

The day got ahead of us and we didn't even get to open presents. So, Riley and I took care of that yesterday. We had a little opening party and Nolan got some great gifts. Thank you! It has been a challenge reigning Miss Riley in and sharing. She has been a little off her game...breaking rules, not pottying...THREE YEAR OLDS! They are a challenge! She is harder to deal with than Nolan! BUT, her cuteness always seems to make us forget about it all at the end of the day.

Nolan had a pretty busy day. He is still having some throw ups. We are always in constant contact with our wonderful transplant coordinator, and she keeps the doctors informed on what's going on with Nolan. So, we are just keeping an eye on him. Babies do throw up, he is teething like crazy and his gag reflex seems to be pretty sensitive again. I am looking forward to our therapy sessions starting up again next week! I think once we get these services started back up Nolan is going to progress quickly. This morning we had labs and then I heard from our home nurse that Nolan decided to pull his feeding tube out. She managed to get a new one placed and the rest of the day went pretty well for him.

I did my good deed today and donated blood! I am going to try to do it as much as I can. Thinking about how much blood Nolan received while at CHP, donating blood is such an easy, quick way to give back (if you can stomach it!)

Tomorrow Matt and I are going to go out on our first date in quite a while. My parents are going to keep an eye on the kids for a few hours so we can have some adult time. It is definitely needed and I am looking forward to it!

Life at home is VERY SLOWLY coming together. I have so many things I want to do; I am trying to just do what I can and not stress. It is so hard. I wish I could rest my brain! On that note, I am going to try to turn it off and get some rest. We are getting consistent 3 am wake up calls...let's hope for a FULL night of rest!