Sunday, September 09, 2012

Rough Weekend

This is our third Sunday in this place and I wish I could say Jack is much improved.  He's had a crappy weekend. It seemed like we had the pain mostly under control during the week, but it's come back with a vengeance this weekend. The pain has been relentless.  Jack's urologist said that placement of the neph tubes likely stirred everything up in the kidney.  He is now on Lortab and morphine as needed.  He's needed both pretty much round the clock, topped off with some Ativan on occasion.  Jack was requiring quit a bit of bagging last night and the same intensivist who was on when Jack was admitted was on again.  Two weeks in, he was surprised to hear that Jack is dealing with the same issue (respiratory distress due to pain) that he presented with.

To follow-up on the neph tube situation, Jack's urologist came by the next day (Thurs) to check the tube and to try and draw urine out of it and he couldn't get any.  He said it could be clogged with blood.  They put Jack back on the IR schedule to have a nephrostogram, where they inject dye into the tube to see where it goes.  When we got down to IR, the IR Fellow asked me if I knew what they were going to be doing (because I had to sign a consent for both the procedure and anesthesia). I told him we were there to try and find out why the tube is not allowing urine to drain.  He then told me that, no, that was not the reason, but rather because when they placed the neph tubes the day before, they didn't get the placement exactly where they wanted, so they were going to go back in and try and get better placement.

Needless to say, a few questions popped into my head. Prior to discovering that the neph tube didn't drain, there was no intention (that I was aware of) to return to IR to try and get better placement. So, but for the lack of draining neph tube, Jack was, apparently, going to go into surgery with less than ideal placement of the neph tubes and I wasn't even made aware of this?  My issue is not that they were not able to get "perfect" placement of the neph tubes - I get that you do what you can do with  the patient you are presented with and that, when it comes to Jack, things are more challenging at times.  My issue is that I was not told that the neph tube placement was less than ideal, so much so that they wanted a second try.  I think that is information I should know.  I was told - again, that the neph tubes were not intended to be drainage tubes, that they were solely access tubes and were supposed to remain capped. Again, that is inconsistent with what my urologist thought/told me.

I talked with the IR Fellow at length after the second procedure was over.  I asked him to please give it all to me, that I could keep up with him.  He finally got it out that the reason there is no drainage tube is because they tried, but were unable to get one in.  You know, a lot of confusion and questioning on my part could have been avoided if I had been given this piece of information from the very beginning.  I was told that the reason placement is so difficult in Jack's kidney is because the majority of kidney stones cause blockage and, therefore, the kidney is full of urine - which gives them a space to work in (like a blown up balloon).  In Jack's case, there is no blockage, and, therefore, they are trying to get placement of the neph tubes near the stone in a "shriveled up" (his words) space.  There is very little room to work and, again his words "you can only puncture the kidney so many times" when trying to get the best possible placement of the tube.

Okay - waaaayyyy more than you wanted to know about placement of Jack's neph tubes.

Jack has spent most of this weekend "snowed" because of all the pain meds he's been given to keep him comfortable.  So far, he's been doing well from a respiratory stand point - he's on the hospital vent, but still on his home vent settings. However, I do worry about his lungs eventually taking a hit from all the sedation and inactivity (relatively speaking, since Jack isn't otherwise out running marathons in his spare time).  Thankfully, one of the RTs suggested an IPV machine for Jack, which he has been using twice a day for over a week now.  I think it's been the key to keeping Jack's lungs healthy so far.

Surgery is scheduled for tomorrow (Monday) at noon and it's expected to last about 3 hours.  The urologist stopped by this morning and I pretty much begged him to please get all the stone out this time because Jack can't take much more of this.  He, of course, said he hoped to.  I asked if he was going to have to go back for a second look a couple days later, and, at this point, he doesn't know.  It will depend on how much he gets out tomorrow.

Jack has had to endure so much pain the last few months, the kid desperately needs a break.  I can't help but think of the words to the song from his birthday video last year.  It sums up exactly how I'm feeling right now.





____________________________________

On the home front, things are out of control.  The schedule we have been keeping is that I am at the hospital during the day and all night. Mark gets Eric off to school in the morning and then goes to work.  He also gets Eric to swimming in the evening (and makes sure (??) homework is done and Eric is fed) and then he comes by the hospital in the evening for a few hours so I can go home to shower and get a change of clothes.  A couple of days over the last few weeks, I've gone into the office and Mark has taken off work.  My house is an absolute disaster, but I just have to ignore it for now because I don't have the time or energy to put it in order.  The scary part is that we are supposed to leave for St. Louis is just a little over two weeks and I haven't even begun to get ready for that trip.

_____________________________________

That's the update from here.  For those who aren't on Facebook, here are a few pictures from this week:

Jack and his girlfriends and his brother



Jack's friend playing her violin for him


giving Jack a try




Also, for those not on Facebook, this video was shared on my wall -- have your kleenex ready:




Thanks my friends. 

___________________________________

Amy, I remember you from the trach board.  I'm sorry you are living in hospital hell too.  Hang in there! xoxo



8 comments:

kathie said...

all i can say is that i am so sad for you, your family, and jack especially....all the good energy i can conjure is being sent to you....

kathie

Eric said...

Jack's fight is mostly internal but we can see the struggle through your external endeavors. I am certainly thinking about your son and am glad to see that you have so much fortitude. Wishing you strength and concentration.
Eric

Cindy said...

Will be thinking of you all this morning. Hope all goes smoothly for a change! You all deserve a break!

Clara said...

Will be praying for you this morning, It breaks my heart to hear that Jack is in pain, I really wished I lived closer to help you !

CS said...

Thinking about you this morning. I really hope the urologist can get it all and this is it on the surgeries for this issue. Hugs and chocolate-Caty

Dana said...

So sorry Ann. I hope the surgery helps. The poor kid needs to be pain free for a while.

We will add you all to our prayers.

Keep us posted.

Susan said...

Ann I just don't know what to say. I am sorry Jack is STILL in so much pain. That there isn't more the doctors can do more quickly. That they are screwing up communication wise left and right and that it's causing you stress because God knows you don't need any more of that. I'm reading your post late, so perhaps the surgery is already done. I am so hoping that they get it all and life can return somewhat to normal for your whole family. (((((HUGS))))) Much love my dear friend. It amazes me how well you can hold things together.

Sarah said...

I can't believe you leave for St Louis so soon. You are doing an amazing job holding it all together. Wish I could help with Eric and the house. Continued love and prayers.