We Should Have Known Better

Here we are admitted back into the Heart Center.  We came in at 7.15 am expected to be released today. Initially, the broviac removal was a little more problematic than normal but that was why the head honcho of Cardiothoracic surgery planned on doing the procedure.  The broviac was well and truly stuck but eventually with persuasion it was removed.  So far so good, then the bronch and biopsy was done.  A lot of secretions were observed all over the lungs but they did seem too problematic.  Following came the injections into the vocal cords and a smaller trach - no problem.  He was back in recovery at 1.30 pm - wow great.  But his O2 was dropping - not so great.  X-Ray and lo and behold bilateral pneumothoraces.  This is a known complications of bronch and since it was Iain and a Thursday we should have all known better.

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.

However can we thank you?

Seema and John were clearly overwhelmed today when I sent them photos of all the volunteers who worked tirelessly in their yard.  This amazing group of volunteers offered their time to weed, prune, power wash, mulch, build a new gate (!) and endless other jobs to make their yard look like new.

While Seema's sister Sonia, Seema's parents and I cleaned a little inside we were simply amazed how many kind people of all ages gave up their Sunday to perform "Operation Hess yard clean-up".  Special thanks to Lisa Pendergast, who headed up this effort along with her husband Karl.

On a personal note it brought tears to my eyes to see how much you all care about the Hess family and are eager to committ your time and energies to ease some of the stress which this family have to endure.  I thank you all from the bottom of my heart.

April is National Donate Life Month video from St. Louis Children's Hospital

Please watch this video, keep watching from 1.28 to see one of the stars.  You do not need facebook to watch it (I do not subscribe).  I think you will like it.

Again it is fitting to thank the family of Iain's donor and to thank everyone who makes sure that they are a registered organ donor.  Iain would not be here without those lungs (or donated blood).  After reading the pathology report on Iain's removed lungs we have realized how dreadfully damaged they were.  Iain has a lot of challenges still and will continue to have them but he has a new chance of life and we can see the difference already.



Escape Plan! How about Escape Party?

Pictures say a thousand words:NursesMore important people

Springtime in St. Louis - Update by John

It has been over a week since the last update. Alot has happened since that last update.

Seema took a well deserved break and is with our son Simon who is currently in California. I'm holding down the fort here in St. Louis while she is away.

Iain had some visitors earlier in the week. Dee, Don and Donna (my Aunt, Uncle and cousin) came to visit. Iain enjoyed hours of reflexology and family time.

From Everest to Ben Nevis

"What is she on about it?" you may ask.  Well if you consider his actual transplant ordeal as Everest and the graft disfunction and neuroleptic malignancy syndrome and other issues as K2 and the like, then Wednesday's news may be compared to Ben Nevis (tallest mountain of the British Isles - for non Brits).  Last Friday (not Thursday) we learnt that his left vocal cord was paralyzed.  He had been referred to ENT to put a camera down his throat as he still was not eating and barely able to talk over the Passy-Muir valve which was meant to help him speak with the trach in place.  This news was naturally somewhat upsetting to Iain.  Nevertheless, he took it in his stride.

Iain's Opening Day

Iain was off the floor in the teen lounge today especially opened for him.  He batted and pitched and a good time was had by all.  No beer though or hot dogs.  Unfortunately, he is still not eating and nothing is appealing to him even the thought of his favourite foods such as ribs and for which St. Louis is famous. So the NG tube remains as does the trach.  However, Iain has had his first 31 hours completely off the ventilator (he has only been on the ventilator at night for the last ten days)  This is marvelous and he also did 8 minutes on the treadmill yesterday.  We are finally seeing the improvement over his pre-transplant state.  He is walking much faster and for longer than he could before. We see the condo at the end of the tunnel.  I do not want to jinx it by giving a tentative date; it will not be next week or but .......

Science versus Superstition

Hah!  The plan early this week for the removal of the chest tube was to clamp the chest tube today (Thursday) and remove it on Friday.  The chest tube has been on water seal all week and the pneumothoraces seemed to have behaved.  However, yesterday I just happened to run into the surgical team and they said in fact protocol was to clamp then remove the chest tube six hours later.  I asked.  "Are you sure you really want to do that, after all it is Iain?" Oh they laughed 'ha, ha, ha" (knowing Iain has been extraordinarily complicated) but said "yes, it is protocol."  Then I said "But tomorrow is Thursday". Silence and some mystified looks but one of the CT nurses said "Oh no, you are right".  As the surgical fellow queried the comment, the nurse explained how many of his most challenging episodes have happened on a Thursday. Then the Big Cheese Surgeon, Dr.

This Thursday will be good

Iain is having his 2 month bronch to test for rejection as protocol.  He came off ICU service yesterday which is great.  On Monday he got a new trach which should help with the "speaking" valve, although it has not been tested yet.  Before he had complained that it was suffocating him and everyone reassured him that no he was not and really it was all in his head.  Finally one of the respiratory techs noticed the amount of pressure building up when she changed him from the ventilator to the trach collar.  So indeed he probably did feel like he was suffocating (though not actually).  Very big oops.

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