June 27, 2008
"We are waiting to hear the status as far as our discharge goes. We may or may not be getting discharged for the weekend. The doctors are taking a really long time on their rounds this morning and haven't come in yet to tell us what is going on. Kole just got another echocardiogram and everything looks really good with his heart. If they would discharge us, we will still be coming back here Monday for another week anyways, because inpatient chemo starts Monday again, and Monday is also Kole's surgery. I will let you all know what's happening as soon as I find out, which is hopefully soon!"
June 28, 2008
"Apologies for taking so long to update recently...things have been hectic as I have been corralling a 19 month old once again! God is Great! We "patiently" waited yesterday to find out if we were getting discharged. Daddy wasn't feeling well and spent most of his day snuggling with Kolebear and resting while mommy tied up loose ends, like finding out where the outpatient clinic is (for future reference) and finding the pharmacy in case I needed to go down there to pick up meds before we were told we could go. I also made several phone calls to support groups (thanks Brie!). Your research into possible outlets of help for us was amazing. They gave us the results of the lastest xray before we were discharged...Kole's left lung has hypoinflated a bit (flattened in some spots), but they said that it should work itself out now that he's moving around. And the heart looks great. So after giving him a prescription for antibiotic to take over the weekend, they discharged us! Unfortunately we couldn't go home, as the move is happening as we speak. Thanks a million to the dozen or so people who showed up to help out and thanks, Larry, for use of the truck. We are officially out of the old place and getting situated in the new one (thanks, Diana, for the toothbrush floor scrubbing!). Daddy was unable to spend Kole's first night out of the hospital with us, but mommy got plenty of snuggle time. As I watched my son sleep next to me for the first time in weeks, I must admit I had a moment of grief over the situation, and I cried for him, and for my dad. I needed to get it out though, and then I crashed, and we slept for 14 hours straight! (Indicative of the many consecutive nights of interrupted sleep.) Kole is eating like a little piggy today, and we're fattening him up over the weekend! He likes it here at the Ronald McDonald House, which is where we are spending the weekend. We are expecting my husbands sister and brother from California tomorrow, who haven't seen Kole in ages. Kole's surgery to place the broviac is scheduled for 7am Monday morning, assuming he stays fever-free. I did have to call the hospital last night (uncannily 3 hours after discharge, thought to myself, was this a mistake?) but the fever of 100.4 did eventually go away and today he feels great. After Monday's surgery, we will be getting admitted again for chemo round 2. We expect to stay the whole week, at least. Things here are about as normal as they can be considering. Kole is playing and romping like I got my "old boy back". It's been crazy trying to clean up/disinfect the room here, do laundry, cook and eat, while caring for him in this big scary place. But I am getting it done. Thanks be to God for all the little miracles, everyday. Thanks, Jen, who made it out here from Philly yesterday to spend time with us our last day in the hospital and brought Kole amazing gifts of love. We are looking forward to more visitors as we come into the hospital next week. We postponed Kole's baptism/dedication for the time being, I will figure out which weeknight is going to work out for us and let everyone know. In the meantime, I want to thank everyone doing fundraising, we wouldn't be as comfortable as we are without you, and in return, couldn't keep Kole as comfortable as he is without you. God bless you, I wish there was some miraculous way I could explain the thanks I feel. Well I must be going, Kole wants to play and I have laundry to finish. I will keep updating and again, let me know if you want to visit this week, I will try to orchestrate everyone in! God bless beautiful Kole and this beautiful day."
June 29, 2008
"Things are pretty terrific today. Kole slept really well last night, and had a big nap today, ate really well today, and also is drinking lots of fluids. I keep saying we are trying to "pork" him up a bit before chemo this week. He really hates his antibiotic that they sent home for him to take. It is refreshing to see him hate something so much though, even the angry side of him makes me smile. Today was "airport day". My husband picked up his brother, Scott this morning. Then this afternoon we all went to Harrisburg Int Airport and picked up Lee and she is staying here with us at Ronald McDonald House! We love having her here with us, and Kole loves playing with her. Today has been pretty laid back, just a lot of love and play before next week begins...I am kind of dreading it. I feel like I am on a roller coaster. Kole played outside today on the Ronald McDonald play structure outside, and loved it. He went down the slide (big smiles!). I want to spread the word to everyone about the fundraiser that my awesome coworkers are doing, up at Outlooks for Hair in Etters - they are doing a sandwich sale until July 15. Also my sister, Kim and her friends are also orchestrating some fundraisers, get in touch with her at Beshore and Koller if you are interested in helping! I want to thank everyone who made our move such a success, I wasn't there to help, so I appreciate everyone's enthusiasm and drive to get it done. Thanks, Phil, for your help recruiting and executing. And to everyone who lent vehicles, and their time, especially the Kline family and all our dear family and friends, not to mention the awesome William Seiler. Well I must get back to Kole while I still have a few waking hours with him. He is running a low grade fever this evening (sigh), let's pray it doesn't get worse and we can still have surgery in the morning. Visitors, just touch base with me before you come up!! Love, kisses, and reciprocating the prayers that are coming from sea to shining sea."
Falling behind a bit trying to get ready for Christmas, finish out custom orders and my husband has been on an eight day, 12 hour, third shift schedule since last week (its like single parenting - I don't know how you ladies do it). I met with our friend Karen this weekend, her husband Joel was killed in a car wreck just after Mothers Day this year. He is my husbands dear friend from childhood and leaves behind a wife and 4 year old daughter. It is nothing less than devastating and yes, I will be drawing Joel. It was nice to catch up with her a bit Saturday, then Sunday I fell asleep on the couch from exhaustion. Today I worked mostly on Koles hair and shirt with a few minor adjustments to shading on his face. I've been meaning to tell you, I discovered a friends blog Still Life with Circles the other day and learned all about her little Lucia. I was instantly captivated by her writing and Lucia. You might also remember me receiving a tarot card pull from my friend at The Moon + Stone Healing during Neils portrait on day 252. I also ran into her at the Mum Expo I attended where I had an aura photo done. But the first time I laid eyes on her was at the book signing during Violets portrait on day 136. I am not taking any of this lightly, there is a reason I keep bumping into her....Lucia. Maybe she will let me draw her too.
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