BMT update #15 Day +21 Out With It Already We got the most EXCELLENT NEWS today!!!!! Lucass liver #s are a lot lot better. They are currently at 2-3X normal liver rates BUT... they were at 16X normal liver #s... so this is fantastic. Then, the docs gave the orders to take him OFF IV FLUIDS!!! In addition to this, his appetite is picking up... He has interesting eating habits at the moment (pickles + ice cream sandwiches + waffles) but well take it. And... One. More. Thing.... We are OUTTA here starting tomorrow!!! YUP!!!! We wont be going home but we will be out of this stinky room. We will be staying at the Renucci House for just about a month to be close for BMT check-ups and then for radiation treatment. We are ecstatic!!! We are going to miss our nurses as they have taken such good care of Lucas and us. They were here for Mike and Lucas from day one through Christmas... They helped us ring in the New Year... Theyve asked about our kids and encouraged us when we were fearful. Theyve cheered with us and supported us and given such excellent & gentle care to Lucas. The BMT team has been outstanding and understanding and giving of their time and resources. We are so thankful... Just so thankful for them all. Be Still My Heart There have been some really touching moments that really cant fully be expressed on FB but Ill give it a go and let your emotion & imagination fill in the blanks. On the night that I was so terribly excited to watch the season premier of Downton Abbey, I set the room for bedtime. I prepped Lucas and told him about sharing the TV and that Id be watching TV late and that he may be a little distracted but that he had to try to go to bed. The room was dark and my sweet little boy was quiet and patient through the whole show... only interrupting once, asking for his iPad half way through the program. Lucass main squeeze nurse, Eric, came in to do a check. Blood pressure. Temp. IV line. Diaper... Diaper... Lucas! We found out that he had pooped his pants. I was really surprised because he had been so good about going on the toilet. I questioned him… When did you do this? Why? What’s up buddy? He quietly turned to me and said, “Well, Mama… I didn’t want you to miss your favorite show…” Ohmyword! This child. He completely melted my heart… I can’t believe he sat there quietly, consciously waiting until the show was over. I responded with a quick diaper change and told him that he was more important than any show in the world… This little boy has a heart of gold. The next day, he was really fussy. Without skipping a beat, during a terrible melt down over something trivial, I stopped what I was doing… walked over to him… Picked him up and just swayed back and forth like I did when he was a baby. We stood there, in broad daylight for a good 20 minutes swaying until he finally told me he wanted to sit in the chair and rock. He proceeded to snuggle into me and nap for 2 hrs. It was a little slice of heaven. Tonight we were snuggling before bedtime… and he was really dragging out the bedtime routine. I crawled in bed with him and we proceeded to have a severe tickle fight. Loud laughter… from both of us, which involved Lucas screaming and screeching with delight. This was the sound that made my heart soar… and although, 2 hrs later, he’s still delaying bedtime, verging on a fit… it was all worth it… all wrapped up in five glorious minutes of total belly laughter… amazing night. Happy day ahead tomorrow!!! We’ll update from OUTSIDE these walls!!! Red
Posted on: Wed, 07 Jan 2015 02:56:02 +0000
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