Super Saturday

Iain had a great day.  He managed a trip to the rooftop garden on floor 8 with his entourage.  He slept last night.  And best of all his brother came in from California.  To those who may be wondering, Simon our 11 year old has been lovingly welcomed into the bosom of the Prakash family (my brother's family) in Los Gatos and to whom we are very grateful.  Although there were competing interests in Boulder to keep him there from my sister to my parents and friends and the extended High Peaks family, we thought that being able to go to school with his cousin and be near to Olivia who is 10 minutes away in college would be optimal particularly if things became tenuous with Iain (which of course they did but happily not now).  Iain smiled in a completely different way when he was with Simon, it was beautiful.

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.

Rolling in the Ward

Iain went for a ride in his wheels around the CICU, with his entourage of 6 to cheers and a standing ovation from his fan club among his doctors and nurses. Seriously though people were thrilled and Carol helped him stand for two minutes.  The powers that be, Sandeep, his critical care doctor this week has decided that trache trials are to be delayed until he becomes stronger, as he was so depleted.  It makes sense.  He is struggling with anxiety and delirium in the evening but he is in a much better spot than ever before.  Granted tomorrow is the dreaded Thursday. Let us hope that we can break the curse of Calamitous Thursdays.

Son is Rising

This morning Iain got into a chair for 30 minutes.  It took a huge amount of effort to stand up (and four people).  It was a scary endeavour for Iain but he did it.  Everyone was delighted although Iain himself found it very stressful.  You have to take into consideration these muscles have not been used in 4 weeks.  Iain is completely drained physically, no muscle tone and absolutely no fat reserves.  We have watched him waste away even though PT and OT have worked with him when they have been able.  His second trache test (first yesterday), where they take him off the ventilator for a while ,shows that he does not have the muscular strength to breath on his own effectively.  It will come but he needs to gain more muscle.

Sleepy Saturday So Far

Iain woke up this morning and was able to write a question on whether he had been able to sleep.  This may seem odd but I was delighted as it meant he is having higher levels of questioning.  He had understood that it was a worry that he had not been sleeping and that lack of good rest was interfering with his progress (well that and the seizures and lung collapse).  It appears that he had no seizures overnight, although he may be on anti-seizure meds for a while longer just in case.  I am not going to lull myself into a false sense of security but ......


Iain had another bronchoscopy this morning to see if they could see a small leak or pulling apart of the areas where the lungs were attached.  Nothing was observed, perhaps it was too small to be seen by the camera?  The reality is that everyone is baffled as to why it happened.  The chest tubes are in place and doing their job to drain the leak.

The meds seem to be keeping the seizures controlled but he has not really been awake all morning particularly as he had the the bronch and needed more sedation.  Again, so far they cannot figure ouy the cause of the seizures.

He looks peaceful just now (med induced) but he has had an awful few days.  We know that we will be drawing on all of you to help him when he begins rehab.  It will be both physically and emotionally daunting.  Thank you everyone for your kind thoughts.  We read each and every comment and draw on them for support.

Iain hates Thursday and Friday

-Update from John

Iain appears to be following his normal pattern of dislike for Thursday and Friday. He has spontaneously developed pneumothorax (air in the lungs) in both lungs. The doctors are preparing to insert tubes to bleed off the air.

No known cause right now for the pneumothorax. No known cause right now for the seizures. These are believed to be independent.


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.

More Bad News

We are heartbroken for our son that today he started seizing.  He had had his third sleepless night in a row and was still answering questions albeit it weakly.  He probably started around at 10 am and I am sorry to say I think I did not recognize it for what it was.  I thought he was experiencing a more severe version of the delirium.  Around 1 pm he had about 6 seizures in a row and really only stopped after a specific anti-seizure medication.  The doctors are unsure of its cause, many conjectures.  The CAT scan came out negative for anything major but he has just come back from an MRI and we will get the results once neurology read it.  He will also undergo a spinal tap to look for an infection in the brain.

On the upside his lungs look much better from the graft disfunction.

White Nights

As you know Iain has had a particularly rough ride through the transplant journey.  Just as we thought he had burst through to the other side, Iain got hit with another case of ICU delirium (though why we would tempt fate like that, I do not know).  Last week's neuroleptic malignancy syndrome demonstrated that he cannot take the normal drug regime  to alleviate it.  To remind you, one of his symptoms of that syndrome was a fever of 107.42.  The funny thing was when his temperature was climbing (over 105) one of his doctors reassured me that the brain does not begin to "melt" until about 108.  I think I might remind her of that conversation when I see her.

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