One Month

Today marks one month since we have arrived to Children's Hospital at Pittsburgh. I am still in shock of everything we are going through.

I guess I first need to say Nolan is stable and doing OK. His 6 am CT scan showed no signs of continued bleeding, therefore they started him up again on a low amount of heparin. He really needs these anticoagulation medicines in order for the pump of the VAD to stay clean of any deposits or clots. So, they had to weigh the options...what is more risky? It is inevitable that a VAD with no anticoagulation meds will produce build up that can form and clot. This is super risky for him because he could have an even more severe stroke. The doctors have experienced similar situations in the past and feel that with the bleed not changing we should be OK. They will monitor him closely by doing routine CT scans and keeping an eye on how he physically looks.

So, what has the stroke done to Nolan? He is still favoring his left side, not really looking to the right. He may have some peripheral vision issues in his right eye, but nothing they don't believe could be fixed through rehabilitation. I think tomorrow we will get PT and OT back, along with speech therapy. Today was a "relax and see what happens," kind of day. We do think that he is following to the right better. We are thankful that all of this was caught early and some intervention was done, successfully.

Matt was here until this morning. He is now back at home with Riley and will return to work tomorrow. I worked remotely throughout the day and tended to Nolan when needed. I got to hold him. Just brings me back to the days rocking him in his nursery. I long for those days...and I miss my rocking chair! :) Overall, he has had good day.

I had a good day, also. I got to meet a fantastic mom who has gone through and experienced what we are going through a year ago. Her son received the gift of life on December 20, 2012 - and his name is Nolan. They spent many months in the same exact room as we are in. It was so great to talk with Laura and meet her beautiful son. It gives me hope. And like she said, everything is going to be OK. She brought Nolan some gifts, leg warmers (which Matt probably will not like). They actually help because we have noticed that he is getting scratches on his legs from the VAD. Not only that, they keep his legs warm and look cute. :) So, thank you so much, Laura, for coming to see me and I look forward to seeing you again soon! You can check out her story by going to https://www.facebook.com/WeHeartNolan.

LAST BUT NOT LEAST, my girl, Alisa, came and saw Nolan and I tonight. If the week goes well, I am looking forward to a dinner out with her. Thanks for coming to see us, Aunt Alisa!

Well, the last day has been rough. Kind of brings us back to those scary times in the beginning, however, we knew that this wasn't going to be an easy road. We probably have other hurdles to jump even before we get to the heart transplant, but I have full confidence in the wonderful team here that they will do all they can to help our little guy. We just have to be patient, say lots of prayers and know that he is in good hands.

ONE MORE DAY CLOSER!

#nhos