My Heart Hurts, But People Still Amaze Me

Monday morning rolled around this week, and it started with plans to get the remainder of the Christmas shopping done with Mom.  Unfortunately, Ben’s pain increased greatly on Sunday night, and hadn’t let up at all by Monday morning.  In addition to that his feet looked like they were turning purple and his breathing had become laboured over the last few days.  Those things led me to contact the Home Care nurse (Surrey) and the Pain and Symptom Management nurse (Vancouver).  Both advised that Ben should be taken to Emergency, as they were a bit concerned about the possibility of another blood clot.

So shopping day ended before it began, and off we went to Surrey Memorial.  Unfortunately, for some unknown reason Monday afternoon seemed to be the busiest day of the year for emergencies in Surrey.  Talk about a packed ER.  And the administrative staff was less then congenial, which made me less then happy.

In any case, Ben got in and got hooked up to the usual equipment and I was rather dismayed to see his oxygen saturation levels at about 88.  And that was with extra oxygen.  (I have learned far more about health care then I ever wanted to since this whole thing began, and I know that oxygen saturation levels of 88 is very bad.  Expecially when you are being given extra oxygen.)

We remained there for hours while Ben suffered in pain until the ER doctor finally checked him out and sent him for another CT scan to look for blood clots.  Long story short, there were no visible blood clots but it turns out that Ben was storing about a litre of fluid between his chest wall and his right lung.  The assumption was that the fluid was the reason for Ben’s breathing difficulties and there was the possibility of Ben having a respiratory infection as well, so they started him on antibiotics.

Ben was understandably extremely upset to be told by the doctor that he could not go home.  According to the doctor, Ben would be back within 12 hours if he was sent home.  And so Ben stayed.  Reluctantly.

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He puts on a great face as usual

Ben did not get much sleep on Monday night, and by Tuesday the only thing that had changed was that his oxygen saturation levels seemed better.  Unfortunately, we also discovered that the hospital food had not improved at all since his last stay.  What did cheer him up a bit was when I brought Jaime to the hospital for a quick visit because she was leaving for Vancouver Island on Wednesday and won’t be back until this Sunday.

Zak and Grampa also made it by for a visit, but I wasn’t there when they were at the hospital so there are no pictures.  Why wasn’t I there, you ask? Well, because I was busy at the airport picking up this surprise visitor who flew in to bring a little cheer to our lives …

Beth – showing Ben the Love

Beth spent many hours at the hospital with Ben and I on and Tuesday and Wednesday.  Thank you, Beth.

On Wednesday morning Beth and I went to a follow up appointment (for me, not Ben) that was booked with a specialist (Dr. F) and couldn’t be changed.

(The background story here is that a few months ago Dr. B had referred me to Dr. F to deal with one of my crazy hypochondriac-type issues.  The two of them happen to be personal friends, and Dr. B mentioned to me at the time that Dr. F is an avid guitar buff.  So on the occasion of my first appointment with him a month ago, I had told him the story about how Ben and I had met Doyle Bramhall II on our anniversary in September.  Turns out he is a huge fan of Doyle.  And incase you have forgotten, here is a reminder of who Doyle Bramhall II is …. )

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So, when I was finished my follow up appointment with Dr. F on Wednesday, he asked me how Ben was doing and he asked whether or not Ben had been able to play any guitar lately.  He then went on to tell me that he owns the same kind of guitar played by Doyle Bramhall II.  And then, this kind man (who has never even met Ben) told me very sincerely that he would be happy to bring that guitar over to our home to let Ben play it.  Can you believe that he is willing to do that for a total stranger?!  Just one more example of how truly kind people can be.  Ben is a complete stranger to Dr. F and yet he is still willing to do this in order to bring Ben some joy.

I was so moved, and I am going to take him up on that offer in the near future.  People continue to amaze me.

On Wednesday Ben remained in hospital awaiting a procedure that was supposed to be done at 11:45 am to remove the fluid in his chest.  In the end it was cancelled because the ER doctor wanted it done by a respirologist.  And so Ben waited.  And waited.  And waited.

Around 5pm the respirologist (Dr. L) arrived.  He said that Ben had been on his list of “to do’s” all day but he had been working in the ICU.  The poor guy was in a hurry to get out of the hospital to get to his 7 year old son’s Christmas pageant, but after talking to us he very selflessly decided to stay and do the procedure on Ben so that Ben could go home.  Again … so amazing.

The situation was rather comical, because Ben’s current nurse de jour was a rather annoying young lady who talked far more then she listened, and she was quite distressed to discover that Dr. L planned on draining the fluid right then and there in the ER.  Furthermore, the nurses talked about how Ben would have to remain in hospital overnight and Dr. L quite calmly muttered to me under his breath “Ben will go home tonight.” Haha.  The nurse really didn’t know what to make of it.

Before Dr. L did the procedure, he showed me the CT of Ben’s chest and told me that even though there was a litre of fluid in there, it was not likely the cause of Ben’s breathing problems.  Nor was the metastasis in the lungs.  He really didn’t know what the causing the problem, but in any case he got to work, and this is what he drained from Ben’s chest:

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Actually, there was even more then that but he had already sucked a bunch out of there to send off to the lab before this picture was taken.

Shortly afterwards Ben was released from hospital (Dr L was late to his son’s pageant), much to the nurse’s chagrin.  And apparently she was so distressed about his release that she forgot to remove Ben’s IV.  So when we arrived home, this is what happened:

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Ben had to remove his own IV

Sigh.  Nothing is ever easy.  Anyway, Ben has a follow up appointment next week for a chest xray and another visit with Dr L.

On Thursday we got into the Christmas spirit a wee bit and managed to get some more decorating done.  Ben played the part of Santa while Beth and I worked. Beth played the Elf.  Lol.

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That brings us to Friday.  The day we went to see Dr. H about doing a cordotomy on Ben to ease his pain.  By the time we arrived to that appointment on Friday, Ben had been suffering with substantial and sometimes extreme pain all week.  It hurts my heart to watch, and much of what Dr. H had to say also very much hurt to hear.  But at the end of the day he believes that Ben is a candidate for the cordotomy, and Ben has consented to having it done.  There are all sorts of logistics to work out including how to get it done in a timely fashion, but the hope is to get Ben in there by next week.

The other thing that happened on Friday was the arrival of a gift from Ben’s troop mates, that came in the form of a photo book they put together.  The book has old photos of each member of the troop along with current family photos.  Ben was visibly moved to receive it and look at it, and so for those of you from Troop 12 who are reading this blog, “thank you for bringing some joy to Ben on an otherwise very difficult day.”

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Spread the Love. xo

 

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