Thursday, December 4, 2014

Dearly Departed Drawings ~ Kole {day 338}

June 19, 2008

This morning we had an unexpected setback. The doctors wanted to get Kole's double-lumen (port) in this morning, we signed-off on all the consents last night for him to have the surgery this morning. At the last minute, they decided not to do the surgery. There is too much risk for infection at this time. I am actually thankful for this, because we didn't feel he was ready for another surgery quite yet, not to mention the nervous anticipation I've been feeling in regards to taking him home so soon. They did another blood culture today, which came back negative for bacteria, so it looks like the antibiotics are working. We will be here for yet another week, though. The doctors are keeping him on the antibiotics which are fed through the central line in his neck, and they won't send him home with this type of central line. So, it looks like they are postponing the surgery until just before his next chemo. We will be here for a week, they will remove the central line, be home for two or three days, then back up here for another week of surgery and chemo. The good news is that Kole is still doing really well otherwise. Some milestones today...he had several smiles and even a giggle or two when I gave him belly raspberries. He ate a decent breakfast, lunch, and dinner. He is keeping everything down. His echo cardiogram showed that there isn't as much pressure on his heart, and the extra fluid he has surrounding his heart has gone from moderate to small. They stopped his breathing treatments, they want to see how well he does without them. We got a wagon from Child Life and Kole went for a wagon ride for an hour, he loved it. I kept circling the hallways, because my mom saw the Jon and Kate plus 8 family (from the tv show!) and crew when she was getting off the elevator this afternoon, I was hoping I would catch a glimpse, but didn't. So much for rubbernecking. Today I got Kole down off the bed and held his hands while he took several steps toward me, he was shaky but did great. We are planning on possibly watching a movie and giving Kole some exercise this evening.  

We had a few impromptu visitations today, thank you for all your prayers and concerns and love. It is so nice to see familiar, caring faces, I don't think you even realize....

 Right now Kole is finishing up a good meal and the nurse is wanting to do a vitals check. I plan on giving Kole his favorite dessert, icepops, after he is finished eating (chicken fingers, corn soup, mashed potatoes, and Pediasure). Thanks be to God for all Kole's small accomplishments today, what a beautiful day. Thank you all for your love and support and prayers and inspirations, thank you to all our friends and family and even to those of you who we've never even met and are pouring in constant love and prayer. I can't get over all the compassion we've been shown, thank you from the depths of our hearts.

Today was more shading on Koles face and hair.  And of course more work on the spindles.  The holiday dash is on to finish customer orders, secret santa and secret sister gifts, Christmas cards, cookie baking and two bedsheet quilts for my kids.  Grace chose my old Strawberry Shortcake bed sheet for hers and Maggie chose a Pocahontas bedsheet for hers.  (I save and/or collect character flat bed sheets to make quilts)  The apple did NOT fall far from the tree and I am so proud of their choices!!  (other choices were Peter Rabbit and Care Bears)

If you missed the Thanksgiving photos of Kole and treasured memories of Kole here is the link to yesterdays post.

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