Wednesday, March 06, 2013

Say It Isn't So

Jack had his kidney ultrasound on Tuesday.  You know, the one that was supposed to show that the added meds and extra water are keeping the kidney stone from hell at bay?  Well, maybe not.  When the ultrasound tech said she needed to check with the radiologist to make sure he didn't need additional images and she was gone for well over 20 minutes, I knew something was up.  When she returned and took images from a different angle, I could easily see that something was taking up about 1/2 the space in his kidney.

Jack's urologist called me this afternoon and said he compared the latest ultrasound to the one taken just about this same time last year when the stone was first discovered and they don't look the same.  He's not convinced that what the radiologist is calling a stone is in fact a stone.  They measured it at 4cm already and the urologist said he can't imagine it coming back that fast.  I'd like to believe him.  I want to believe him.  The only way to know for sure is for Jack to have yet another CT scan of his kidney.  I think this will be about the tenth CT scan in a year's time.

Just to be clear, palliative care doesn't mean we won't take action when issues arise for Jack.  It means our primary focus is on Jack's comfort and not the resolution of every issue that arises because of the progression of Jack's disease.  However, doing nothing when it comes to kidney stones is not a comfort measure.  That being said, we know that if, in fact, there is another large kidney stone, we won't agree to having the same procedure done that was done twice last year because it didn't resolve the issue the first time around. But, we'll cross that bridge if we get there.

Jack has had a rough week.  He's still on oxygen and has needed a lot more bagging than he's required the last few months, but not as much as he needed when he was at his worst.  He was miserable at Phoenix Children's yesterday and required bagging pretty much the entire time.  Not fun at all.  We've been giving him morphine almost every day to get him through periods of pain.  It's hard to know the cause of his pain/distress.  The message I got from Jack's nurse earlier this week was "your son's lungs sounds like crap".  He's improved as the week has progressed, but it's possible he has pneumonia. Or is the distress kidney stone or UTI related? (UA results are still pending.)  Or maybe a combination of all of the above?  It's so incredibly frustrating having a non-verbal, medically complex child who is hurting.

Speaking of "bagging" Jack, a commenter on my last post asked what I mean when I say we are bagging Jack.  Note: all my trach parent friends, you can skip this part as none of this is information you don't already know. :)

When we bag Jack, it means we are manually ventilating him with a hand-held ambu bag.  Here is a picture of the ambu-bag/oxygen set up next to Jack's bed.


Bagging someone is similar to giving them mouth-to-mouth resuscitation, except we squeeze a bag to give him air and we are giving him air through his trach and not his mouth. (And, Jack isn't coding at the time we are bagging him. However, if we didn't bag him through his episodes of respiratory distress, he would likely, eventually code.)

Ambu bag connected to Jack's trach


Bagging Jack gives him more forceful and more frequent breaths than he gets via his regular vent settings.  His oxygen sats are usually in the low 80s and lower before we bag him (after having first suctioned him to make sure the desats aren't due to secretions blocking his airway).

When Jack first came home from the hospital after being trached/vented, we had to bag him quite often because we had him off the vent a lot during the day and he would get pockets of collapse in his lungs because his respiratory muscles weren't strong enough for him to adequately ventilate himself off the vent.  When Jack was about three years old, it was clear he wasn't ever going to get off the vent and we stopped trying to wean him.  Once he was on the vent full time, he almost never required bagging. This having to bag Jack all the time is new within this last year.  As you can imagine, it's incredibly stressful having to resuscitate your child on what is becoming a routine basis.  Pretty soon, someone is going to have to resuscitate me because my body can't take much more of this stress!

Anyway, I'm not going to worry too much about the potential kidney stone until I know for sure that's what we are dealing with.  The difference this time around is that in between his episodes of distress, Jack is really pretty happy.  He wasn't that way last year when this whole saga started.  I'm expecting a call from radiology scheduling tomorrow and I'd guess we'll have the CT scan sometime next week.  Stay tuned.

On a completely different note, I just have to say that Eric is such a good sport.  When I drug him out of bed last Saturday morning at 5am to participate in the Ryan House Run, he asked me "Did I agree to this?"  He actually didn't have a choice. I signed him up, told him I needed a partner and he was it! He really did end up enjoying himself, mostly after the race was over.

After the finish of the 5K race




On yet another completely different note, I received paperwork in the mail this week telling me I needed to get Jack registered for his freshman year high school classes.  HIGH SCHOOL?!  It just can't be possible that Jack would be in high school next year.  Jack should be flirting with the girls,  playing sports and text messaging his friends all day long, not struggling to breathe and feel comfortable.  Sometimes the unfairness of it all really makes me angry.  But, I have to let it go because anger just saps my energy and I've got so little energy to spare these days.

Speaking of sapped energy, I must really look like hell because the child cashier at the grocery store gave me the senior discount when I bought groceries tonight.  Seriously kid, I might look tired, but I don't look 55+,  dammit.

Closing on a positive note, Peg arrives tomorrow and we are so looking forward to her visit.  We've not been able to see her much the last few years we've been out to St. Louis because she's been out of town.  Looking forward to our traditionally long talks into the late night hours and the requisite wine tasting that goes along with it.

Onward.



Peg and Jack circa 2000






7 comments:

Susan said...

Damn it Ann! I really was hoping that this was over. I'm so sorry for what Jack is going through, and you as well. It should be easier. XOXO. You'll be in my thoughts.

Anonymous said...

Definitely keeping you and Jack in my prayers! I hope whatever it is is treatable so Jackmis no in pain.
Kristy

ssouth said...

No way do you look 55. You barely look 35, but yay for discounts. I'm sorry to hear about all the trauma. You could hold a symposium on stress, but what you need is to just be without some for a bit. I hope your visit with Peg brings some semblance of relaxation and that Jack settles down.

Anonymous said...

Hugs Ann. Give him a hug for me. Whitney

E Fischer said...

I'm thinking that the ultrasound may be showing fibrosis and calcification of the soft tissue after the invasive treatment he had in hospital.
Obviously the bagging can be necessary if he is in pain. You are all getting a hefty dose of hard times which is terribly sad but nowhere could we see more care and love being brought into this world than in your heart, mind and actions.
There is no room for doubt, no matter how loudly is shouts at you; a big hug for you all.

Ann said...

Your theory as to what they might be seeing on the ultrasound makes a lot of sense Eric. I hope you are right. Thanks for your input.

Christy said...

I'm really sorry he's sick. Crappy sounding lungs are never good. But, I'm glad to hear that overall - stones or whatever is going on included - that's he's been pretty happy. But there's something about that oxygen requirement that always gets to me. Grrrrr!

Haha about Eric's comment about the 5k. As I've said before, it's the feeling after I'm done that makes me run in the first place.

Have a great time with Peg. I hope your next update says that Jack is feeling better. Hugs!
xo