More updates - John this time

-Update by John

To add a bit to Seema's update, Iain has had a few tough days. Since Monday the pattern has been that the mornings are pretty good and the afternoons less so as he begins to shake and fidget. That is then followed by a night of sleeplessness. Today was day four of no sleep.

He was having a rough morning. The general shaking was starting earlier than the previous days. While I was standing at the base of his bed with the Psychiatry team, he started a (what turned out to be brief) seizure. Seizures are quite unsettling to witness.

As Seema said, the CT scan didn't reveal anything. The MRI has also turned out to be normal. The lumbar puncture (spinal tap) is happening now.

A bit of levity. Over the past few days we've been actively engaging him during the day in order to get him back to a normal wake/sleep cycle. One of the things we've been doing is playing games, Connect Four in particular. Since he can't speak and his hand gestures are limited, I've used the game Connect Four as a proxy for his mental state. Now I know what your saying, go easy on the kid... Nope, I play to win!! Unfortunately for me, despite a transplant, massive blood transfusions, 3+ weeks of narcotics, neuroleptic malignant syndrome, ICU psychosis and (at the time) two days without sleep, I still can't beat him...   :)

John

Comments

  • susan strauss

    Dear Sweet Hess Family, I am so sorry to hear about the struggles that Iain has been dealing with over the past several weeks. You all are in my thoughts and prayers. Your strength through all of this is truly amazing. Iain in one tough kid and in reading your blog, it is not hard to see where he finds that fight. Stay strong and know that I am thinking of you all! Love, Susan and Chris Strauss

  • SherriCowhig

    Thanks for the update and the laugh! It is so hard to be far away in Colorado where there is so little that we can do. Hopefully tonight will be a restful night with plenty of peaceful sleep. I am praying for strength for Iain's body, clarity from all test results and a clear path of treatment but mainly for supernatural strength - physical, emotional and spiritual for each of you.

  • Salvado Family

    You are admirable parents ... and the apple didn't fall far from the tree! And the sense of humor that you manage to maintain is also admirable! But you have to also take care of you, parents, and each of you individually. I hope you cover your basic ... like decent meals and enough sleep - you promise, right?? Big hugs to all :)

  • Chrissie M

    You all are constantly in our thoughts and our hearts. I hope that your whole family can feel how much you are loved by so many people. When the sun rises tomorrow, I hope that all of you will have had much needed rest And sweet dreams.

  • Prices of Penshaw

    Well Iain after reading all the posts your Mum and Dad have posted and all the challenges you have faced, we have come to the conclusion that the only thing take scares you is Kryptonite! The other question is have you got a pair of blue tights? Your Mum & Dad must have a pair. The super strength they are showing is just amazing! Keep fighting mate, everyone over here is pulling for you and do us a flavor. Let your Dad win a game of connect four.

  • susan muir

    So sorry that Iain is going through all this trauma. Glad he's still got his competitive spirit. His strength is admirable as is yours. Hope today give some answers regarding the seizures. Love from all of us.

  • The G Force

    I know it's tempting to question the word "progress" when the day to day, at least as it appears coming from your updates, is such a roller coaster. But continue to Stay strong and stay positive … and focus on all the good wishes, thoughts, prayers and love everyone is sending you here and everywhere. There's a mighty force at work here! xx oo The Griffiths

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