Crisis Mode

Whoooo…. What a day.  Yesterday, Dr. Piatt decided to close off Jack’s drain to see if Jack could regulate his own intercranial pressure.  Throughout the night the ICP alarms rang almost constantly, so the nurses repeatedly let off fluid.  By the morning Jack’s heart rate had dipped, a sign of reemerging hydrocephalus.  Dr. Piatt informed us that the drain would be reopened, and Jack would be scheduled to receive a shunt on Monday.  This was the first bad news of the day, but not the last.

Next, one of Jack’s legs grew icy cold, though the rest of his body was warm.  Fearing another blood clot, an ultrasound of the limb was ordered.  While it didn’t show a clot, it did show some reduced flow in the leg. Doctors are monitoring this new development.

As you all know, the drain in Jack’s head remains the scariest thing in Jack’s PICU room for John and me.  Remember when you were little, and you found something in your darkened room to be afraid of?  Maybe it was the way a sweatshirt lay draped on a closet doorknob which suddenly appeared sinister, or the recurring thought that there was a terrible creature outside the window, peering in.  Your response is to lie still –as still as possible– eyes fixed on the perceived threat.  John and I have sat in Jack’s room regarding the drain with that same kind of fear-and-adrenaline fueled intensity these past few weeks.  Therefore, I suppose that it’s not surprising that we  have been the first ones to discover every problem with the drain thus far.  We discovered the first site leak, and another minor leak early this morning.  We discovered the dehydration that resulted in the sunken fontanelle.  And today was no different, just scarier.

We had just finished talking to Keili, a wonderful resident in the PICU who has been helping to coordinate Jack’s care since day one.  John walked over to Jack and said, “Oh my God, look at his head!” The fontanelle was seriously sunken yet again.  I ran over and felt all around his head on the bed sheets.  They were soaked.  The drain had dumped (we later learned) 60-70ml of CSF in less than 45 minutes.  It usually takes Jack about seven hours to lose that amount.

Doctors pushed fluids into him to replace what was lost.  Jack remained responsive, but his heart rate dipped yet again.  Through all of this, doctors assured us that he was stable enough to undergo his scheduled surgeries.  I’m afraid it was not a strong time for me.  I really started feeling like I was in a war zone.  So much seems to keep coming at us, and the security we had thought we had earned, six days post-op, is illusory.

Thankfully, both surgeries went fine.  Jack is now the proud owner of a secure airway thanks to his trach and a small “button” type GI tube, which will have its inaugural meal tomorrow (if all goes well).  There had been tubes down both his nostrils and a large tube in his mouth, as well as swaths of tape all over the place, but now he is free of all of that.  Just having the chance to see his face again makes everything seem better, somehow.  It feels like the day is ending just a little bit brighter than it started; whether that is an illusion or not, no one can say.


14 thoughts on “Crisis Mode

  1. Elizabeth Zalonski

    Dear Meg,
    Today I am playing catch up on my computer, took a few days off. You & your family must be so proud of what Jack has accomplished just in these few weeks after his surgery, it’s amazing. I found myself smiling & shedding tears of joy when I watched the video of him reaching up to the mobile, he did such a great job, what’s next? I think he is going to surprise all of us with his tenacity and perseverance, he is an inspiration to all of us.NEVER LOOK BACK, ALWAYS LOOK UP.

  2. Karan Carreras

    Dear John and Meg,

    I got to know your son’s Jack and his brother Erich thru emails and a Christmas photo from grandmother Debbie, who I have been friends with for more than 20 years. After the holidays for the first time, I took all the holiday photos I received and hung them on a bulletin board in my office to brighten it up since I have no windows. Over the past two months I have be asked about the photos. I have to say, your boys are asked about the most. I think because they smiled so sweetly in the picture and it didn’t hurt that they are so darn cute!

    I have just read your blog about Jack’s journey so far. My heart hurts for Jack and all he is going through along with you his family. It doesn’t matter how old parents are, when your children hurt you hurt. I somewhat know what your both are feeling and dealing with. My youngest daughter Rachel was diagnosis with late stage cancer in Sept 2012 she was 28 at the time and in two weeks will turn 30 thanks be to God. In her journey Rachel has gone thru more than any one person could or should over the past two years. Some days are harder than others as you probably have already realized.

    I didn’t tell you about my daughter to make you feel sad for her, you have enough on your plates. I wanted to encourage you to be Jack’s biggest advocate for the best health care providers. He deserves only the very best so he can grow to be all that God has indented for him to be. There have been times thus far in Rachel’s journey that Rachel or her family requested that a doctor and/or nurses not to treat or care for her anymore. Do not ever hesitate to remove anyone from Jack’s team, if they are not meeting your standards. Daily, weekend or otherwise. I know that may sound harsh but sometime parents have to fuss to get the best care for their children. Everyone including a doctor or nurse will have a bad day but it should not be at the expense of Jack.

    I can also tell you first hand prayers are answered. Sometimes slower than we like but they are answered. God will send the right care team and answers Jack’s way to aid in his recovery so you all have a long life together.

    Lastly, take care of each other, John and Meg, and don’t forget yourselves individually so you can be strong for Jack.

    I will continue to follow Jack’s journey and continually pray for restored health.

    Karan Carreras-Florence/Greenville SC

  3. Bill DuPlessis

    Dear Meg and John. John, I don’t think we have met, and Meg, I don’t know if you even remember me. My name is Bill, and Meg I am about your Dad’s oldest friend. He gave us a call and let us know what has been going on. We have been reading your blogs almost on a daily basis ever since. We have (and still) worry about the setbacks, and rejoice with every advance. My wife Kareena and I keep Jack, along with all of your family, foremost in our thoughts all the time. My wife is a woman of faith and always has been, but I have not had that faith as part of my adult life…. and yet over the recent stretch of time I have found myself, on many occasions, attempting to formulate something that could be considered a prayer. I don’t know if I’m doing it correctly, nor can I have any way of knowing that my message is getting through to the right place, but I’m trying. We will continue to follow all the latest developments every day, and please know that we think of Jack and all of you every day.

  4. Kathy

    Dear Meg and John,
    We hope that each day finds Jack better and stronger than the day before. Each hurdle has been handled with skill and success! I just hope and pray that there are fewer, smaller challenges along the road ahead. Thinking of you all and sending positive light your way.
    Kathy & Bryan

  5. I’m so glad that Jack’s face is free of devices and stands ready to receive sweet mommy kisses!

    Sending positive thoughts your way,

  6. Megan Oakleaf

    I’m so glad Jack made it through his surgeries and you can see his little face unobstructed again! I hope last night wasn’t as scary and stressful as yesterday. Jack’s a lucky boy to have such vigilant parents who are on top of every change, big or small. We’re thinking about you all and hoping for fewer and fewer stress-filled moments.

  7. Carlene

    Hello, my thoughts and prayers are with you and Baby Jack. He is in my mind constantly! Love to all, Carlene

  8. Carol B

    Jack must be so proud of his strong, dedicated, loving parents and family! The roller coaster ride goes on but one day you will ALL bounce back. From afar, we are following it all and with you in
    our hearts. Stay strong!

  9. Beth (William's wife)

    I was looking for some words of encouragement to send your way and found this quote from Dr. Seuss
    “But I’ve bought a big bat.
    I’m all ready, you see.
    Now my troubles are going
    To have troubles with me!”

    You are the best doctors Jack has as you know him better than anyone – important to remember when you are surrounded by “the experts”. Praying you have strength to continue your vigilance and hope you get some emotional encouragement and rest very soon!

  10. John Green

    I can’t comprehend what you’re going through. I pray for all of you.
    The candles continue to shine bright here with hope and compassion. Jack must be one hell of a fighter, as are you.
    Thank you for all the updates.

  11. Our bodies are in Wallingford but our hearts are in Wilmington with Bounce Back Jack. Keep fighting Meg. You and John are mighty warriors for your baby boy. Love Bobbie and Jeff

  12. Jill

    Dear Meg, Wow, you and John were put through the ringer today, weren’t you! Put it all behind you now, and gaze on our precious Jack’s beautiful little face without all of that medical “stuff” that is thankfully now gone! I pray that tomorrow will be a better day for all!
    Love and Blessings, Aunt Jill

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