A Thursday Milestone

I have been amiss at posting updates as Iain's discharge has meant I could start working more rather than just when I was able to draw breath.  I have to thank my ColdQuanta people for being so terribly patient over the last few months and never wanting to stress me.  However, I have to let you know that tomorrow is a big day for us in a strange way.  He will have his three month bronch and biopy and another injection into his vocal cord to see if this time it will help his voice and swallowing.  But more importantly for us Iain is going to have his Broviac central line removed.  To those who have known Iain and those with PH, you know how bittersweet that central line has been.  Iain has had a central line since  Dr. Ivy gave us the news 12 years ago that Iain had super systemic Pulmonary Arterial Hypertension. Iain had to go on the gold standard, Flolan, immediately to be administered via a pump into the Broviac and into his heart.  Flolan had a half life of four minutes and when the pump or line had an issue, life got very interesting quickly.  Without Flolan all his blood vessels would crash.  Things got easier with Remodulin (half life of four hours) and there was always the constant threat of infection.  Iain's line has been remarkably free of infection and the staff here are incredulous that the current line (the previous just got too small as he grew and did have to be repaired a few times) has been in for six years.  It is that six year mark that probably impelled the transplant surgeon, Dr. Eghtasedy to remove it rather than another surgeon.  It will be firmly embedded in his chest and, of course, it is Iain Hess so I am sure they are just not going to leave anything to chance.  So for us a big day, the last vestige of PH to be removed - no more dressing changes (at least for that), no more worries of it being pulled out (reminds me of when Max, our 135 lb Leonberger, stood on the line, Iain was running, the line broke and blood shot everywhere - fun times) and once he gets rid of the G-tube and trach, Iain will be able to go into the sea or pool without a dry-suit. (remember friends those times his drysuit got a leak and we did not know the pump had failed until Iain's eyes rolled back into his head -sorry Dr. Ivy).

Comments

  • lisapendergast

    Hi Hess Fam, I hope all goes smoothly today and there is not too much discomfort. Quite a milestone....I remember those days of the 4 minute half life and dry suits. When the time is right, let's plan that Lake Powell trip. Can't wait to see Iain in the water. :)

  • SherriCowhig

    What an amazing re-cap of so many years. It is so incredible that he no longer needs the central line, and the surprises that have come with it...what a wonderful step in Iain's life!!!! It is good that he has such a calm mom and dad to walk through all of this with him which, I am certain, is why he has handled the last few months with such strength and determination. Here is hoping for an incredibly uneventful day and an incredibly successful injection and that, before too long, there will be much less focus on doctors in Iain's life....and lots of wonderful time playing in the ocean!

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