CT Scan Update

The urologist called me today regarding the CT scan.  Where do I begin?

First we talked about the appointment with the nephrologist yesterday and I shared with him that I didn't think the guy was a good match for me or Jack and told him why.  I asked whether it was possible to switch doctors within the group and told him who our pulmonologist recommended.  He said that it is not a problem at all, that it happens and that it's okay to say that it's not a good fit.  The guy our pulmonologist recommended is also the same guy the urologist has spoken with in the past regarding Jack.

We then talked about the kidney stone, which has gotten larger since the CT in June. It is now 1.7 x 1.6 cm in size.  He discussed all the options for treating the stone, but based on its size, he suggests the same procedure he had last time, the percutaneous nephrolithotomy (another 5-day minimum hospital stay).   I told him we were going to St. Louis in October, so if we are going to have this done, it needs to be done soon or we'd have to wait until we got back from St. Louis because we don't want to travel with Jack right after surgery. (I didn't share that I might just wait until after we see the St. Louis urologist to make a decision.)

Finally, he said that the CT showed that Jack is still impacted with stool!  He said he measured the amount of stool and there is 6-7cm of stool in the colon.  It's near the rectum and it's pushing on his bladder  - which explains why Jack doesn't tolerate his wheelchair. When he sits, he hurts and it's reflected in his sats (low) and his heart rate (high). We knew back in July after the inpatient "go-lightly" treatment that the stool was not out - regardless of what the KUB supposedly showed.  It was obvious to us that the issue was not resolved, but x-rays don't lie, right? (wrong!)

After we talked through all the above issues, the urologist said (1) he would call the other nephrologist and see if he will see Jack asap; (2) he would call one of the general surgeons regarding the bowel issue because at this point, he said, it's more than likely a surgical issue, not a GI issue; and (3) he would check his schedule and see if he can get Jack's surgery scheduled within the next three weeks.

I am now sick to my stomach.  My heart just aches for Jack and all that he has to put up with because he can't tell us how much he hurts.

A half hour after the urologist first called me, he called again to let me know he talked with the other nephrologist and, unfortunately, the guy is having surgery of his own tomorrow and will be out for two months. But, he did recommend a couple of other doctors in the group who would be aggressive in dealing with Jack's issues. The urologist said he will call tomorrow and see if he could get us in to see one of them.  He also said that he got ahold of one of the general surgeons who was able to pull up Jack's CT. The surgeon told him that it's bad, but not the worst he's seen.  He suggested a couple of things from doing mineral oil enemas to having GI do a colonoscopy.  I told the urologist that at this point I am not wasting time dealing with enemas. This needs to get resolved now and that I want the colonoscopy done asap.  The challenge is getting GI to see Jack.  Based on my previous experience with them, they don't really give a rip if you have an emergent issue, they will not fit you in their schedule.  The urologist did say he would give them a call, but he doesn't know if it will help.

My plan is to call the GI first thing in the morning and ask them to let the GI doc who saw Jack in July know what is going on and ask him to please review the CT.  Let him know that this needs to be dealt with now and that, based on the recommendation from the surgeon, I would like a colonoscopy to be scheduled asap.  I will let them know that I need to know what the GI says by noon because if he refuses to help us then I'll have to go with Plan B.  Plan B is to take Jack to the ER and get him admitted for a colonoscopy via the ER.  I'm fully prepared to leave work tomorrow afternoon and head to the ER because I absolutely refuse to allow Jack to suffer with this any longer.  I fully expect for GI to not help us on an outpatient basis, but one can always hope for the unexpected.

Kuddos to our urologist who has gone above and beyond by calling the nephrologist and the general surgeon to try and get Jack some help.  He's a great guy who really does care - which makes me feel a little guilty about considering having all this dealt with in St. Louis.  But, I suspect if we end up going that route he would understand.

I just want to get the GI issue dealt with first and then make a decision regarding the kidney stone.  You know, most people hear Jack has a kidney stone and they think no big deal. But, this is a big deal.  It's not the kind of stone that will pass. It requires a fairly major surgery to get it out and for a kid as compromised as Jack - surgery is a big deal on so many levels (not the least of which is the avoidance of breaking his bones in the process).

In any event, I think I've rambled on enough.  The news from the urologist has me overwhelmed, mostly because I'm already overwhelmed with work deadlines and with every day life.  I think I may need more than a few drinks to get me through the next few weeks (months) - a lot of chocolate is also in order.

Wish me luck tomorrow - it should prove to be a challenging day to get people to think outside the box to get Jack the help he needs.  I'll have my "Kindness" Touchstone held firmly in my grip to remind me to be firm, but kind.

Stay tuned...