Getting Our Boy Back

According to Matt Nolan has made such an improvement the past 48 hours. He is back to his smiling, giggling self. Matt says it is so refreshing and exciting to see. Nolan is doing so well, that they are talking about discharging us to the Ronald McDonald house within the next week or two. This is SO hard to believe! One - we are going to have our son back, in our care; and Two - we are going to have our son back...IN OUR CARE! I haven't really been hands on with a baby in over 4 months! I am nervous! We have a lot to do before he is officially released, so I am sure we will feel more comfortable when they let us go.

On Friday Nolan has his first biopsy of his new heart to make certain that there's no rejection taking place. It is a same-day surgery procedure and should not cause him too much pain or stress. He will have about 8 to 9 biopsies within the first year. After that he will receive them quarterly, and as the years past, the biopsies will decrease. The results of the biopsy will determine how quickly we will be discharged. The transplant team have been suggesting inpatient rehab for Nolan instead of coming to the Ronald McDonald House. Matt is getting more information about that this week and we'll weigh our options.

Currently Nolan is still receiving his food through an NG tube. They continue to raise his feeds to get his belly used to normal feeds. They plan on starting bolus feeds during the night time, which is where they won't continually feed him, rather they will place a larger amount of food in his belly periodically through the day (like eating a bottle). So far everything has been going well. He had one throw up, but he is also on about 15 to 20 different medications, so who knows if that could be the culprit.

He met with OT and started practicing with food again, which Matt said went OK. Physical therapy went amazing - Matt said he would sit by himself for a few seconds. It's just amazing. Everyone is very happy with his progress, so we couldn't ask for anything more. I am so anxious to get back out there and HOLD MY SON!

I actually had an amazing day. Because of the weather, I got to spend the entire day with my favorite girl, Riley. We had such a fun day. We played inside all morning, I got a lot of stuff done around the house, started getting Nolan's room reorganized and Riley and I played in the snow. It was so nice to just be in our house, doing chores, getting our life back together because I now know we are all going to be together so soon. We got through the worst of it. Now we can see Nolan recover, grow and thrive. We can see Riley and Nolan actually get to be sister and brother. I remember thinking back when this all started, "will I ever be truly happy again?" I can't say that I am completely happy because I am still saddened by everything, and worried about what the future holds; but, it is a new happy. I am happy about the little things in life; I am guessing I appreciate them more. I was trying to get Riley down for a nap today and she leaned over, gave me a kiss and said, "I love you, Mommy." It melted my heart...and I thought how lucky I am to have her and I now feel confident that someday soon I will hear Nolan's little voice tell me the same thing. Two months ago, I would have never been able to imagine that.

I hope everyone had a safe, snowy Wednesday. I am going to have a crazy rest of the week trying to catch up with work and get ready for my upcoming week in Pittsburgh. I can't WAIT to not have to leave my office, or house...not have to pack...unless it's for an amazing vacation!

#nhos
teamnolan.weebly.com
Chili & Chocolate