Thursday, December 3, 2009
Day + 246: Line Free and the Launch of Max's Meals!
Today is day +246 and we have spent the day celebrating Max's successful line removal surgery yesterday. His central line is gone and we are all breathing a sigh of relief! For 9 1/2 months, we cleaned and flushed with heparin those two lines everyday, along with changing the dressing and caps once each week. For Max, it is an enormous liberation - no longer does he have two thick IV lines hanging out of his chest with all kinds of dressing protecting them and holding them to his body. As of tomorrow, he can shower and bathe like a normal person again, letting water drip down his whole body! For 9 1/2 months we have done modified bathing. Max would wear his shirt and stand in the tub or sit on the side while Matt or I washed him down with a washcloth, being careful not to get his central line or dressing wet at all. I can't wait to see him standing in a shower tomorrow with the water just running down his little body...and I'm sure he can't wait to feel that sensation again. Oh the little things we take so for granted! For me, the loss of the central line is a great relief too. I have been the primary caretaker of the line, cleaning and flushing it daily and changing the dressing and caps weekly. It was something we totally adjusted to and got used to doing but, it is not something that any of us will miss, by any means! For all of us, knowing that a potential source of infection is now removed from our Max is a great relief.
Overall the surgery went very smoothly for them to remove the line yesterday. As the doctor that did it and many of the nurses and anesthesiologists said to us multiple times yesterday, "this is a piece of cake compared with what Max has already been through." Thankfully, those words were true. Max did well with the anesthesia and is recovering very well with really just minimal soreness today. He's definitely a bit more tired than usual but, by tomorrow, I think he'll be ready for some basketball games in the basement with Alex again and some normal running around here at home.
The day was somewhat surprisingly exhausting and filled with some mixed emotions for Matt and I. Being in the Same Day Surgery area where Max had his central line put in and Ellee went through her bone marrow harvest was tougher than I thought it would be for us. It brought back a lot of memories and made us both realize again just how long and tough this journey has been. On top of that, it is never, ever easy to watch your child go under anesthesia! We have been there with Max four times this year now and with Ellee once and I cannot help but cry every single time it happens! It is terrifying. If you have never had to experience it, consider yourself very lucky! I would be thrilled if we never have to go through it again...ever! I think the most terrifying thing for me is that you are handing complete control over to these doctors and nurses, most of whom you hardly know, if at all. To add to that, not only are you not there to watch over your precious child but, your child is not even able to fend for themselves as they are completely asleep and unaware of what is happening to them. Talk about having to have trust!!! As always, Matt and I trusted not only the wonderful doctors and nurses at Children's yesterday but, we have also learned more and more through this journey to trust that God is watching over our kids and ourselves and is with them, especially in these moments of great need.
We are grateful once again to have yesterday behind us and to have Max line free and doing so well. We heard multiple times from the surgical team yesterday what a sweet and handsome boy he is. They were all complementing him on his hair and his beautiful eyes and we were commenting on how amazing his transformation through this process has been. He was quite the man in charge yesterday too. He actually told them how he wanted to be put to sleep for the surgery and where he wanted his IV placed. Thanks to the great folks at Children's, they took note of how much he has been through and obliged him with all his requests. That definitely made things go smoother, to say the least. There were several comments yesterday also about how wise beyond his years Max is as a result of his ordeal.
Besides the excitement of yesterday, things have been pretty quiet around here lately. We had a wonderful Thanksgiving weekend and really enjoyed the time we got to spend with our families. We now have the house all decorated for Christmas and the kids are enjoying all the trees and lights. On Monday evening, we all crammed in the minivan (including Spud) picked up my mom and dad and went for a drive for about an hour and a half to look at the lights. The boys couldn't wait to see them and I was excited for Ellee's reaction since this is really her first year to truly understand things. We had a ball riding around and checking out many "decked out" houses, as the boys called them while we ate ice cream and sang Christmas carols. We are definitely finding ways to enjoy the holidays this year, despite our continued protective isolation requirements for Max.
As we progress step by step and day by day through this journey, the light at the end of the tunnel is beginning to shine brighter and brighter. We are starting to see the future with Max as a survivor of this disease and it is becoming clearer and clearer that he will be able to return to the life he knew before, essentially. Sometimes I am struck as I watch Max, Alex and Ellee play together at what a miracle has unfolded before our eyes. I am just amazed that the birth of one little person, Ellee, is now sustaining two precious lives in this world. Her little marrow is working away in Max and giving him his life back.
As I have shared with all of you many times, we feel incredibly blessed with how well Max has done through this BMT journey. As a result of what he has been through, we have really had our eyes opened to the incredible suffering and challenge that so many families face. I am very anxious to be able to do something to alleviate some of this hardship but have been trying not to take too much on too soon so that I can focus on getting our family through this tough time. However, I am very, very happy to announce that today, I opened an account to begin one facet of "paying it forward". I am starting a little non-profit fund called "Max's Meals" to provide catered, home cooked meals to the parents and families in the bone marrow transplant and hematology/oncology units at Cincinnati Children's! One of the great needs that we saw while we were inpatient in the BMT unit is that many of the families are not from Cincinnati so, getting a home cooked meal is just about impossible. They end up eating hospital cafeteria food or restaurant take-outs for months at a time. At a time when they need comfort and healing care as much as possible, it is almost impossible for them to get it. Through "Max's Meals", we are hoping to provide healthy, home cooked food to the inpatient families in these two units as often as we can. We would have liked to cook our own meals and take them down there but, hospital policy requires that the meals be from a professionally, licensed caterer or restaurant and I'm not quite ready to take that on yet! So, I am ready to take donations to support this cause and am hoping to raise enough money here quickly to provide a holiday meal to both units this month! If you are interested in supporting "Max's Meals' you can write a check to Maxs Meals (the apostrophe wouldn't work on the account name for some reason) and mail it to me or you can give a donation at any Fifth Third Bank here in Cincinnati to the Maxs Meals fund. I know that the families will so appreciate this support and care! If you have any questions about this, please feel free to email me (firstname.lastname@example.org) or call me (513-474-7181).
I told you about a couple of our friends last week that have been going through tough times and wanted to let you know that Ethan and Preston are hanging in there. Ethan is still in ICU but is showing some improvement and making some positive progress. Preston will be having his surgery tomorrow to correct the issue with his liver. Please continue to keep both of these families in your prayers and I promise to keep you updated on their progress.
As we look back over the last 11 months, we realize what an amazing journey this has been and we are so grateful for Max's continued progress. We are spending more and more time looking forward to what life has to offer Max as a survivor of Aplastic Anemia. We are hopeful that after this "viral season" is over, with continued good progress from Max, we will be able to rejoin the "real world". We have missed out on a lot of fun this past 11 months and plan to spend a lot of time catching up as soon as we are able! Get ready for one big party and lots of blog posts about all the great times we are having! We will never forget all the love and support that all of you have shown us and continue to show us over these tough months. We are forever grateful for all of you!
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)