Calamitous Thursday - Largely Averted

Well, he probably had about four mildish seizures today.  We think it may be directly related to his lack of sleep over the last 2-3 nights.  I am staying here tonight to see if we can break the trend of anxiety and lull him to sleep.  I think he worries that he will knock his trach tube off, which does happen.  Since he cannot speak he cannot tell the people who respond to the alarm that he has knocked off the trache.  His nurse always responds but I do understand that feeling of helplessness.  On another note, he told his psych doctors that he was scared of his boat sinking.  I let them know that indeed he had once been on his Uncle Don's boat in Florida as it let in copious amounts of water and it had been in danger of sinking.  The doctors told him "well that could have been very scary."  I had to tell them that he had not been worried about himself, his father or his uncle for that matter, it was the boat that he had been worried about.

Still no real answer on the pneumothorax although at one point a fellow mentioned a word which I then stupidly googled iin relation to lung transplant.  Pretty dire and since it was Thursday I had a little panic and texted the big gun, Dr. Eghtasady. Fortunately the attending allayed my fears to say that they still really did not know what was causing it. Dr. Eghtesady texted me saying he believes it is a bleb - yes a real medical term, something like a blister or bubble on a cell.


  • susan muir

    Sorry about the continuing seizures. I hope you both have a restful sleep tonight.

  • Aunt and Uncle

    Iain, my friends now ask about you on Thursdays. Through all of this, I am delighted to see how smart and properly engaged you are. This is a HUGE step up from a couple weeks ago. Is this a slow process? Painfully come from a family of immediate achievers. With that said, you ARE making huge gains in the last 2 weeks. Much love to you.

  • jtani10

    Yay! I hope today goes better also!! I remember not being able to sleep also. They kept asking me why but I really didn't know the answer. The only thing I could think of was that in the back of my mind I was afraid I'd stop breathing if I went to sleep. I somehow got over it but I don't know how. Have they tried to keep him awake more during the day and wearing him out (I know it doesn't take much)? I hope Iain had a better night's sleep knowing you were there to protect him! It sounds like he's having more good days than bad and I'm excited to hear that! Keep going! Jody

  • Seema

    Jody, Thank you for your helpful comment regarding breathing. We are indeed trying to keep Iain on a strict night and day routine. Today so far is a better day. Seema

  • lisapendergast

    Hello Iain, You should have seen how happy Colin was to hear from you. :) We are wishing you a restful night and hope tomorrow is even better. Love, Lisa

  • LisaD

    HI Iain! Do you remember when your dad worked at a company called 10-4 Systems? We were part of the original 7 to launch the company, and I must say there he was an amazing professional mentor to me. Do you remember his business trips to India? I was able to join him for 2 of them and will never forget these unique cultural and culinary experiences. Of course he spoke of you and your siblings often, so I do feel that I know you a little. Your dad and I lost touch for a bit and only recently did I learn of this big adventure you are on. It may sound a little strange, but I am thinking of you, your amazing parents, your whole family and sending buckets of love, light, and healing energy. I'm so happy that you have such a gifted crew to look after you. I wish for you greatly deserved rest and a peaceful day tomorrow and the next day, and every day. - Lisa

  • Aunt and Uncle

    Iain, Auntie Sonia's VW buy back will occur April 15th, Uncle Kurt's at the end of March. Which means that we both have approximately one month to save up for a Lamborghini (I don't think what VW will give me for my Jetta will quite help). This also gives you significant milestones to reach to ensure I am picking the right car for me. Also, Uncle Kurt is looking at used cars and seems to be dithering more than me. Which means - you need to be at the point where you can help us not dither. You can get there - i need you to just troll the internet for what I want.....

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