June 11, 2008 11:14PM
"Kole was struggling this evening. He never quite came out of that "anesthesia" hangover. His heart was racy and the oncologist here said he just needed a break since his heart and lungs have been on overdrive. They finally officially moved him to the PICU. He has been incubated and is on a breathing machine temporarily to reduce his struggle. He also has a chest tube in to drain the left lung. Right lung looks great. They are starting steroids to see if there is any affect on the tumor, to possibly shrink it. If the tumor is a lymphoma then it should start to shrink. If not, the steroids will just help the swelling/breathing. They ran an arterial line to check blood pressure and so that they can keep taking blood to test. He is on albuteral for breathing and alopurinal for reducing uric acid. They have him totally sedated and vitals look good."
June 12, 2008
"This morning we were told that overnight some fluid had accumulated in the right lung, the better of the two, which did not make us happy. However, it is now gone, so the left side, again, is the main concern. Today they had to do a small blood transfusion due to low red blood cell count/hemoglobin. They took him off the ventilator and he was doing fine breathing on his own. They lowered his sedation level from 4 to 3, which pretty much just means he is a bit more aware. However, we are not sure if this is a good thing, because when he is with-it enough to know we're here, tears stream down his cheeks and he tries to move toward us but can't. The oncologist said our biopsy results are not in yet, however, should be by tomorrow. Kole is his main priority, as he said this case is pretty much unlike one he has ever seen. Right now they are pretty certain it is cancer. What type is still up in the air, yesterday he was leaning toward lymphoma which is why he began the steroids, but today he seems to be leaning more toward sarcoma, which is a tumor of the soft tissue/bone family. They have Kole sedated right now and are at this very moment extracting bone marrow and also small pieces of actual bone to test to see if this has spread to other areas of his body. We pray not. The tumor alone is enough to have to deal with. In either case, we are garnering a plan of attack and they just want to know all they can so they keep doing tests while he is asleep. The more we know, the better the fight. Regardless of what this tumor is, it is too big to be taken out right now. They will have to shrink it first, and the word radiation was finally mentioned last evening by the PICU doctor.
Kole had another blood transfusion this afternoon and responded really well. The bone marrow aspiration/bone sample went very well too. They are keeping him as comfortable as they can.
Anyone who knows Kole well knows how strong and persistent he is
and the nursing staff here is getting a taste, too. The anesthesia they administer to him is to keep him out for about an hour, but the little tiger keeps rousing after about half an hour, so they finally had to give him something a little stronger so he doesn't want to pull all his portals out. This did drop his blood pressure a little low, they were worried for a few minutes, but it came back up and is now normal. He also ran a fever earlier but responded well to the Tylenol. At this time they are putting in a feeding tube which will be fed into his intestines, prohibiting any regurgitation. He hasn't eaten since Tuesday morning so we were both really adamant about wanting him to have some nourishment. Before he was sedated, he kept asking for juice and chips. They are going to come and get us when they are finished putting the line in.
Tonight we gently bathed Kole and got him lotioned-up. He smells yummy and the nurses are all admiring him, especially his long lashes. He also got his teeth brushed. They brought an xray machine in earlier this evening which showed the feeding tube in place properly as well as the chest tube which drains the left lung. His vitals are all wonderful. They took him off the ventilator again and he did well, even better than this morning, so we are thinking the antibiotic/lung drain combo is working well. He is being fed right now. They removed the dressings from his bone marrow aspiration and it looks good. We were in there earlier giving Kole some exercise and just moving him around a bit. I am getting really good at manipulating all those tubes and lines. It has been a very long day, but we are happy we had several visitors! Thank you for your generosity of the gifts you've brought to us, it means the world to us and we love you all. We just got done reading Kole his night-night book, Snuggle Bunnies, and are about to head down the road to the motel."
Today I worked more on the crib spindles, I'm convinced they hate me. Shaded a bit more on Koles face and a few wisps of hair. I am saving the real work on his face after the grid comes off and I can work upside down. The main goal is to get lines on the paper and remove the grid. The grid is only to ensure proper proportions - so much easier to work in small squares than in one huge open sheet of paper. Grids are also awesome to intentionally skew and distort images for fun, I drew the little boy off a U2 album cover in high school. I will need to dig it out and snap a picture for the blog,
What this beautiful family had to go through truly captivates me. The fact that his mother diligently journaled every day, many times several times a day. I won't be sharing the most intimate details but I want to show you how brave and strong Kole is at two years old. I don't know about you but I've never had a bone marrow aspiration and I'm 34 years old. I imagine some of my blog readers may have faced hospital time with their children. Love to you all.
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