Wednesday, December 17, 2014

Dearly Departed Drawings ~ Kole {day 351}

June 30, 2008

"It has been a very long day. It didn't start off so great. After waking up at 5 and getting to the hospital, prepared for surgery by 6, they bumped us (we were supposedly first priority) and then poor Kole, who had been fasting for the surgery, didn't get to have it until 9/9:30! He was begging for juice, and Daddy had to raise some you know what. But I am happy to say, the surgery went really well. His double lumen broviac is officially in place, and working wonderfully. Surgery took about an hour and a half. Kole was already alert and ready to go in the recovery room. We got admitted to floor 7 again, and have been here all day, with the exception of dinner, which was wonderful (thanks Barbara and Phil, and also mom who watched Kole while we enjoyed ourselves). Kole is already finished his chemo for the day, he had two bags (each separate chemo, both he has never had before) and dripped for over 2 hours. He has had a lot of extra fluids due to the fact that the one chemo causes some bladder problems. He has been having a lot of gas issues and distention in his bowels, so they gave him a little laxative, and I'm not sure it made it any better, actually, now he is having really bad cramps. But now he is sleeping peacefully and looks absolutely beautiful. The piggy in him helped him gain a pound over the weekend and he looks slightly more plump today. Thanks to Dot's giant milkshake, I too, feel more plump :) Tomorrow is another big day, with more chemo. We thank the Lord every day, we say, for the most wonderful day of our lives, every day we get to spend with Kolebear. Thank you all for your unfaltering prayer and commitment to us, it enables us to commit to our dear little baby boy that much more. God bless every one and every prayer, for I know heaven hears them, for I witness the everyday miracle."

July 1, 2008

"I updated pretty late last night so not much has changed. When we arrived here this morning, baby boy bear was still sleeping peacefully. Then the nurse came in to do vitals, and it was all over....Mom! Mom! Mom! and crying. He is doing great this morning, now that he's awake and realizing he is back here, in the hospital, once again. He chugged an entire Pediasure for breakfast, then decided to eat his Rice Krispies dipped in ketchup?? Hmmmm, whatever you want, Kolebear! After breakfast he colored his new dinosaur coloring book and played with some Lightning McQueen stickers. Aunt Lee went down to the gift shop at 9 and bought a GIANT Elmo mylar does he love beating people with balloons! We rented the movie Cars again, and he is watching that right now. Today they will change the dressing on the broviac, it still looks pretty bloodied from yesterday, but they wanted to leave it on for 24 hours. It will get changed once a week from here on out, we will have to do this at home. Also, they said when we give him a bath, we will have to put press-n-seal over it and tape it down...who know there was yet another use for press-n-seal? They are pushing his chemo forward 4 hours today, to 12:30, instead of 4:30. As long as he continues to tolerate the chemo, they will bump it forward 4 hours everyday. They do this so that we may be able to leave by Friday instead of Saturday. Although if he has any negative responses to the chemo (bad side effects), they won't push it forward anymore and will just give it at the same time everyday, in which case we will be here until Saturday. I honestly don't care when we leave, just hope that dear Kolebear feels as comfortable as possible. We will be "stuck" in the room most of the week, since these treatments do take awhile to go through his system. Anyone wanting to visit, it should be fine this week, we don't expect his immunity to really fall until we get home. Just make sure you aren't sick in any way. We turned in our keys yesterday for the old apartment, oh, how it feels good to just be rid of that place and those people we rented from. The new apartment is "together" for the most part, although things could be tweeked, I am sure. I am such a control freak when it comes to my "stuff" and the way things are organized and set-up, so it will be interesting to see myself trying to find all my belongings when I get home. It may not be pretty :) My husband said he tried to set things up at the new place to mirror the old place as much as possible, because that's all Kole knows, especially his bedroom. We want to try to limit him going through any more shock/confusion. Well, folks, I gotta get back to see my little lovey. Looking forward to all who would like to visit, and thanking again, deeply, for all the thoughts and prayers."

July 2, 2008

"I must admit I haven't felt much like updating because the events of the day have drained me. I am managing to muster up some energy, now, so here goes. The morning was pretty good, Kole ate a decent breakfast and had a lot of energy, because he slept so well. He did, eventually, vomit-up the breakfast, but we are getting used to this and just excited that he actually still has an appetite. Ironically, they gave him his anti-nausea after the vomit incident...I thought, that's a little late. We had several visitors today, and I am so thankful that we did, because I never could have made it through the events of the afternoon without them. They hung his chemo and fluids just before lunch, just the same as the Monday and Tuesday regimen. Everything was fine at this point, and he finished the chemo no problem. I decided since he had been held most of the day, to try to let him walk for a bit, so I grabbed him under his armpits and placed his feet on the floor. His legs buckled out from underneath him and his head wobbled backwards, and he began crying. I picked him back up and comforted him and sat back down in the chair. I gave him his sippy cup for a quick drink, but he couldn't hold it. I realized he had no control over his neck, hands, or legs. I freaked out and frantically pushed the nurse button. I was told on Monday when he started this round of chemo that it may cause seizures and confusion in certain rare cases. Well, I realize now my son must be the rarest of the rare, so I didn't waste any time getting help. The nurse team was in instantly and I told them he was shaky and didn't have energy and couldn't control his extremities. They got a certain "look" on their faces and quickly checked his pupils with a flashlight, they were fine, and called the doctors in. From here it was people rushing in and out. They commended me for my quick thinking and judgement

(mommy's know when something isn't right!)

They wanted to rule out several factors first so they drew a lot of blood, and everything came back normal (CBC and electrolytes). They also wanted to be sure there was nothing wrong in Kole's head, so they sent us immediately down to CT in a wheelchair, and the CT came back normal. So they diagnosed the problem as an adverse reaction to the ifosfamide (chemo), the "rare" possibility. They said he has neurotoxicity, the build-up of the ifosfamide since Monday has affected his central nervous system. There is something that they can give him called methalyne blue (may be misspelled), which is like an antidote for the neurotoxicity, but it may take up to 24 to 48 hours for him to see any relief. They did assure me that the severity of his particular case is low, and that this neurotoxicity is totally reversible and there will be no permanent damage. But I am still pretty nerve wracked. The chemo for tomorrow and Friday has at this time been cancelled. They aren't sure, yet, what the next plan of attack will be. He may or may not be getting ifosfamide again, it depends on how he responds to the meth-blue. So, at this time the next chemo strategy is up in the air. We just have to wait for this to pass, which is the hard part. It's like I am holding a 26 pound newborn. He is showing a bit of improvement already this evening. He managed to feed himself some mac n cheese without dropping much. On top of today's events, my husband almost had a stomach episode this morning, and I am sure glad he wasn't around all day (he was sleeping) to have to go through this, because I truly think it would have been full blown. I am totally exhausted, and I will try my best to keep the carepage updated and let everyone know what the next strategy is as I find out. Thank you all for your prayers and love and encouragement, I never would have had the strength to pull through today without a hand from God (and Alysse, Lee, Kait, and Sarah). God bless."

Started work on the wicker basket, this year has been full of drawing challenges.  Lots of textures and repeating patterns.  Didn't get much time to draw today.  Things should start calming down some and I can get back to regular drawing days again! 

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