Dearly Departed Drawings ~ Kole {day 346}

June 25, 2008

"This morning has been trying. We arrived later than we wanted to and found Kole alone with a cold plate of breakfast. I want to ask the staff at some point today if they can feed him when we aren't here first thing? They seem to keep pushing the fact that he isn't eating. I am frustrated. We saw blood on the floor and realized that the IV failed overnight and they had to start yet another one. This poor child is being poked all the time. They are going to mention to the doctor possibly moving up the surgery to put in the broviac before Monday, or chances are he will need a new one every day. His veins are just collapsing. The nurse we have today couldn't get one in. We are getting ready to give Kole a bath. We removed his neck dressing and the central line boo boos seem to be healing okay. Today we are going to try to feed him as much as possible and work out his legs. Keep him moving in general. Tomorrow, my husband is going home to start the move. He has several things to arrange, if you are interested in helping please call him. I also have to leave the hospital for the first time in 15 days, I have a doctors appointment myself that I can't cancel again. We are looking for someone who Kole is familiar with to come up for the day and spend time with him while we are gone and help take care of him. Anyone interested in helping us, please call Karl or me. We talked to the Ronald McDonald house volunteers and they said that we don't have to leave even though our 14 days is up tomorrow. They understand our situation and said they have had people stay much longer than we have. So at least we have that comfort in knowing we still have a place to stay. Karl is thinking about going back to work after the fourth of July weekend. We think we will be okay financially until then, but realize the donations we have brought in won't last forever. So that kind of depresses me, it takes two to keep this machine running smoothly up here, and anyone who is interested in helping me out once he goes back to work please please let me know. We would be eternally grateful. I should get a chance to update again later today, until then, God bless and thank you so much for keeping us all in your thoughts and prayers, today looks like a day we will really need them

The day didn't remain as grim as the start. Kole was a bit fussier today and seemed so tired in spite of his ANC count coming back up (hooray it's at 548 instead of 0!). The blood cultures still show no signs of any infection. We are so happy and blessed with these little victories. And he walked and walked today as well, maybe the physical exertion is wearing him out since he hasn't walked in two weeks. The doctor came to speak with us about the IV dilemma. I feel so blessed to have her as our doctor, she always seems to read my mind. She said if the IV he has in now would fail, like all the others have the last two days, then she isn't going to give him another. She said we will just let it ride and go without IV medication. She would rather he not be continued to be "stuck" day in and day out. So she got the ball rolling on the surgery, instead, to get the broviac line in early (yay! just what I was thinking). Kole is scheduled for surgery tomorrow. However, tonight, now he is running a fever (setback!). She said she is wary about him having the surgery now, but the surgeons will make the final call in the morning. We will have to wait and see how the fever fares. From hour to hour, the situation here changes. So now I really don't know when the surgery will be. Tomorrow, Friday, or Monday, we are playing it by ear now. In the meantime, Kole ate well and drank well today and has been more comfortable since they started him on morphine (very low doses as needed). A sad moment for today, Kole's hair is starting to really shed and I have a feeling over the next few days it is going to be coming out a great deal. I was prepared for this but seeing it happen is still really upsetting for me, not just because of my job, but because I have always thought (as mom's do) that his is just so beautiful. I have been blessed today by wonderful, caring friends who have showered us with food, clothes, and games for Kole. We also received several monetary donations and gas vouchers which we feel are a gift from God, we are moving now and the security deposit and first month's rent, of course, is a big chunk. But we are doing so well, praise the Lord. Thank you to all of you for your help, and offers of help. We sincerely could not do it if it weren't for you. Kole's immune system is on it's way back up and visitations aren't as stiff now, so I will keep in touch via email with those of you intending on visiting. Please be aware that because of the uncertainty of the surgery, some visits may have to wait. We love you all and God bless you and thanks a million."


Jun 26, 2008

"We had a very exciting day today. Mommy and Daddy had to leave the hospital for a bit this morning, mommy had a doctor appointment and daddy had to start the move. When we returned to the hospital, we learned that Kole had a fantastic morning. He was running about in the hallways and asking to go outside. The music therapist was in and she played some guitar, but Kole wasn't interested...until she starting singing about trains...then he was totally excited and chattering and pointing to the train he has there in his room. He wasn't eating a whole lot or drinking either, and we are praying that his appetite during the day returns. When mommy arrived back at the hospital, Kole took a three hour nap, indicative of his busy busy day. The doctor came in and said that surgery is definitely Monday. She actually wants to send us home over the weekend, but we plan on explaining the move-situation to her in the morning, and we think we will just be staying here at the hospital for the weekend yet. Or if we do have to leave the hospital, then we will try just to stay at RMH until Monday so we don't have to make the commute just for 2 days at home before we return here for another week Monday. The big news of the day was that Kole went outside for the first time in 16 days!

He was so happy, riding in his wagon and feeling the grass between his toes. 

While we were outside, I got the bright idea that this might be a good time to shave Kole's head as his hair was just coming out everywhere...and we did. Kole looks so good with his new haircut! Upon returning to the room, Mr. Kolebear ate a BIG dinner (yay!) and relaxed with all his "aunties". He played with his cars and his panda bear. He is no longer on any morphine and doing quite well without it. The xray that he had today showed not much has changed with his lungs, except that there are some places within the left lung that are flattened out due to laying around the last two weeks. The resident said this will probably go away now that he is more active, we just need to keep doing our "chest exercises" with his little suction massager. He does have a bit of a throaty cough, which worries me, and he still has a lowgrade fever. As long as it's gone by Monday, we'll be okay for the surgery. They took Kole off of one of his antibiotics, so now he just gets the cefepime. He is still getting IV fluids overnight tonight, miraculously, the IV they put in yesterday is still kickin'. We got a new nurse tonight and like her a lot. It is time to retire back to the RMH, Kole is sleeping peacefully. God bless and good night...tomorrow Kole is getting dedicated to Jesus. Amen.

P.S. Thank God for all of you helping us raise money. There are many many people working hard on sandwich sales, pizza sales, news ads, fundraisers, and much more. Words escape us to show our gratitude. We only hope that we will one day be able to return all the favors. God bless you all."



Today was more background, adding detail to the quilt behind the crib and a few corrections to Koles cheeks.  Kole is such a beautiful boy, big, bright eyes and the highlights in his hair are stunning!  I really love drawing children, I can hear their giggles and laughter in my house.  I've been told they are all here and around me.  I don't always hear them as clearly as my Nan or Houd when they visit, but there are plenty of occasions I've "heard" my kids, checked on them and discovered they are still sleeping.  We have lots of "voices" and "footsteps" in our home.  Are you surprised? 

Some of these blog posts will get long as I try to squeeze the daily updates on Kole into the drawing. I feel everything is important and essential to fully appreciate the weight of the situation.  Things we sometimes take for granted, things that are null and void when there is a serious illness or disease.  I will open your eyes.  Kole will open your eyes.