20 Mar Friday, March 20, 2009
Hello, Jeff Schoondyke here and unfortunately our family is now at CHOP in Philadelphia. We had been at Knoxville Children’s for the past day and a half. Kari and I flew to the children’s hospital in Philadelphia this evening and arrived about 1130pm. While in Knoxville, she received superb care from her physicians and nurses. They literally pulled her back from a full blown bout with congestive heart failure. As I am sure some of you have heard, Kari has been admitted to the ICU here at CHOP (Children’s Hospital of Philadelphia) as she has begun to show signs of heart failure. Her valve has simply not grown large enough to allow sufficient flow out of her heart and she is in the beginning stages of what I am afraid will be a rather long process- this will ultimately require another open heart procedure where she is to have a Ross-Konno procedure. This involves removal of her tricuspid valve and placing it in the aortic position while placing an artificial valve in her tricuspid position. She will also require “thinning” of her left ventricular septum as it has become rather thickened due to her undersized valve currently in the aortic position. To make a difficult situation more challenging, she has been found to be quite anemic (cause unknown) and she has developed pulmonary hypertension (elevated lung pressures) from her developing heart failure. At this time, we are forced to investigate the source of the anemia before any surgical procedures can take place. Moreover, she will need a heart catheterization prior to her surgery to accurately define her anatomy and her current lung and heart pressures. As you can tell from this description, these procedures will have Kari undergoing considerable discomfort over the next few weeks/months and I write today asking for your relentless prayer support for Kari, but also asking you all to remember Jennifer, Jeffrey, and Katie as well.
Day #1 of this process has finally arrived- more like a lion than a lamb. Down deep, we all knew this day would come but, for a short time, it was nice to look ahead and think this day would always be “tomorrow”. Well, for Kari, “tomorrow” has finally arrived; it was March 18, 2009.
Day #2 Kari and spent the day in the ICU battling pulmonary edema and a newly found fever of 101. Her respitory rate never fell below 80 but was typically in the range of 90-100 per minute. She was really struggling from about 12 noon to about 6pm when the lasix finally started to relieve some of the fluid overload. She received a pint of blood and her color is much better now although here respitory rate has not changed much. On arrival her hemoglobin was 6.9 and hematocrit 18- for most of you, this very low. Jennifer and the kids went back home to gather some things and they began the drive to CHOP at around 4pm and they should arrive here at about 3am- as I write this it is now 1:30am on 3-20-09. Randall is driving up with us and is taking the pressure off Jennifer to drive as she was up with Kari the night before while in Knoxville. Overall, the kids and Jennifer seem to be doing well- that is of course after the initial shock of this whole
situation begins to wear off. The plans for today include another echo and possible the heart cath. They have started the work up for the cause of the anemia- so far no blood found in gut or stool. This may have been a chronic process, only time will tell.
On arrival, I received my second “blue bracelet”-and was actually recognized by a few people on the floor. Not because of my winning personality mind you, but because of our rather memorable stay with Kari the last time. Nonetheless, these are two distinctions I would rather do without. Jennifer and I knew this day would come- but as I said before, it was always “tomorrow”. Walking back through the hallways- seeing the atrium
and familiar sounds was like we never left. I often catch myself thinking “it will all be over soon”, and Kari will never have to experience this again”- then, I am forced back into reality. The truth is that Kari will have many more of these trips ahead- numerous valve replacements, heart caths, etc. I only hope when that next time does come, it is under a more controlled circumstance than absolute chaos.
Let me say this before I forget- once again everyone has rallied around us to make us feel at home despite our absence. The distance we share is no match for your relentless support and concern for us- we continue to receive many texts, emails, phone calls and well wishes from so many people I am truly amazed. Once again, thank you! Without becoming too tearful or dramatic, I just want all of you to know that hearing from you all is such an uplifting feeling. Even though this situation is extremely concerning for Kari we are doing are best to stay motivated, positive, and faithful to whatever plan God has in store for her. Continuing to remain positive is, at times, difficult. The terror of the situation never leaves us while we are here. You feel guilty for smiling because you know that just a few feet away, Kari is literally fighting for life- her spirit is never more evident when you see her drive to push on; she seems to never tire or never be
discouraged; she never says, “now what can go wrong?”; or enough is enough already….. She just stares at you, and speaks to you with her eyes wide open saying- “I’m trying DAD, just hang in there!” (It’s that same look when your kids are perhaps riding their bike up a big hill and there trying their hardest- grimacing for each and every pedal to meet you at the crest so they won’t let you down- their sheer determination drives them up that hill, nothing more, nothing less).
Then, when she needs a rest, she will place her head on your shoulder, fuss for a minute and rest. I know this sounds crazy, but it’s like she is saying, “okay, you take it from here, just for a minute or two- I know this is hard on you and mom but I haven’t given up and have no plans to do so. Just give me a few minutes and if you can keep it together while I rest, I’ll take back the fight- more ferocious than ever!” (that’s when you’ve both made it to the top of the hill; while you’re enjoying the peace, they pause a few seconds, and take off without you, leaving you behind and forcing you to follow.) Well ironically, Kari is no different- she keeps climbing, reaches the top, rest a minute, and speeds off and forces us to follow. Surprisingly, I always thought I should be doing is for her, but truth be told, Kari is supporting us- her will to live, drive for basic life, and stubbornness to succeeded are gifts from God. All we can hope for is to be an intricate part of the plan. She makes me appreciate my existence and healthy family, for which we all take for granted each and every day. Quite amazing for a 7 month old! My point is this, you all do for us what Kari has been given by God- the will to persist, to drive to continue the race, and the faith to fight through the pain for us not only stems from Kari but from the kind words, thoughts, cards, and prayers we have lucky enough to receive. Ultimately, Kari is the
beneficiary of all this support as it allows us to follow her in the best possible way- with friends! Remember what I said at Kari’s “thank you dinner”- “the next time you think you don’t make a difference, think of this face” Those of you who were there, remember me holding Kari and pointing to her as I said those words. I hope one day there is something I can do for you-all as repayment.
As many of you remember the last time we were in Philly, I reminded you to “hug em if you got em”. Well I hope most of you did- but if you didn’t or it’s been a while, I urge you revisit that part of being a parent. They will not be there forever, and one day, you won’t have the opportunity. No I’m not preaching- I’m just offering you a perspective that thankfully many of you will never have to face. Enough said…..
Finally, (at last you say) as I walked through the hospital for the first time tonight, I was reminded of all these kids- some with years of hospital time, procedures, pain, and suffering. The human spirit is remarkable- the drive for life is within all of us so, if you know someone who has an ill child or family member, I urge you once again to take a minute and remember them in the same spirit you all have remembered Kari because I would be their children are leading them just as Kari is leading us.. As for Kari, there is no doubt that she is in God’s hands- actually she is one of the lucky ones, funny isn’t it?……. I will try to keep regular emails coming. Please feel free to send them to anyone you feel may be interested and ask them to pray for Kari’s recovery-remember, God is moved by people in prayer. Think about it…. Sorry, for throwing in these deep philosophical thoughts- (I know, I know,… now you’re saying to yourself, “Where did THAT come from? I sure didn’t see THAT one coming”). Don’t worry though, that’s the only one I will throw in tonight- it’s now approaching 2am and I am tired.
Over the last few months I have been rather silent about Kari for a reason. I knew this day was coming and did not want Kari to be denied the support she deserved because her father was so fixated on what happened to his family. You know, things like “There’s Kari’s dad, let’s turn around so we don’t have to hear the story…….again!” Get the picture? Well, my silence is broken- if there was ever a time to ask for help, support, and prayers, this is it. One last time, thank you.
speak with you all soon. God Bless
Disclaimer: This composition represents the authors own work and is subject to interpretation. If at any time your emotions were pulled upon, your eyes filled with a salty discharge, or your kids got a hug……. well then, GOOD!