Wednesday, September 05, 2012

Ten Day Mark

Today is the 10-day mark for this hospital admission and we are assured another 7 days, at least.  What I wouldn't give to sleep in a bed again.  After a week of sleeping on a fold-out chair for 7 nights, when the nurse manager came into Jack's room last Sunday and asked how things were going and if I needed anything, I jumped at the opportunity to request a room that has a bench bed.  They moved Jack that night into a new room.  At least the accommodations have improved this last week.

It is the little things after all.

Morning rounds were much improved on day 2 and 3. That said, I don't feel as welcome to participate with this team as I did with last week's team.  But that's okay. This week should be a low key week as long as Jack stays the status quo.  Speaking of staying the status quo, Jack wasn't on his home vent but two hours and he needed to go back on the hospital vent because his CO2s were too high after he had another episode of pain.

The urologist called me yesterday with the plan which was neph tubes placed in IR on Wednesday and surgery next Monday.  I'm not real happy with the five day lag between tube placement and surgery, but the thinking is that if there are pieces of stone breaking off from the large stone (how that would happen I don't know, it's not as if Jack is engaging in contact sports), then putting in the neph tube will give the stone an exit from the kidney without causing Jack any pain.

Jack had the nephrostomy tubes placed today.  They placed two tubes because there are stones in  different parts of Jack's kidney and the urologist wants two routes to go in and get them out.  I wish I could just say that Jack went to IR, got the neph tubes and I'm 100% comfortable tonight with where we are.  It took two and a half hours to get the tubes in.  That's really much longer than it typically takes for these things.  Jack's anatomy makes the placement much more difficult.  When Jack returned from IR, I saw two really thin tubes extending out of Jack's back and they are both capped off.  One is a long tube that extends past Jack's back so he doesn't lay on the cap and the other one is really short causing Jack to lay on top of it. Several things immediately jump out at me: (1) there is no bag attached to either of the tubes; (2) the neph tubes look nothing like the neph tube he had last time - and came home from the hospital with; and (3) the cap on the tubes has two hard plastic "wings" and Jack is laying on the cap and the wings are digging into his skin.

I raise my concerns with Jack's nurse and the NP.  Jack's nurse wrapped a big wad of gauze around the cap, so I think we are okay with preventing any skin breakdown from that.  The NP told me that the IR doctor said that both tubes are supposed to be capped.  That's not what the urologist told me when he stopped by Jack's room this morning.  I was told that one of the tubes would drain urine. When the resident stopped by Jack's room later, I raised the question with him and he agreed that it was his understanding that the neph tube was supposed to allow urine to drain.  But, he reiterated what the IR doctor said.

Am I missing something here? Why would you even ask the IR doctor - she just placed the tubes at the direction of the urologist. The urologist is the guy in charge of the whole kidney stone thing.  So I called the urologist's office and left a message for him.  He called me back right away (love him!)  We talked and he confirmed that, yes, one of the tubes was supposed to be hooked to a bag to drain urine.  He said he'd call the unit.  Shortly thereafter, everyone was on the same page. However, the challenge became finding the supplies to hook up to the tube.  After a little creative thinking and a little cutting and taping, they came up with  tubing that would hook to the neph tube to drain the urine.  Here's the problem, not one drop of urine has drained from the neph tube and it's been 6 hours since they hooked everything up.  Clearly, something is wrong.

*Sigh*  Can't anything ever go according to "plan"?

Don't answer that.

I realize with each passing day my perspective becomes skewed.  What starts out as a team effort (Rah! Rah!) becomes an "us" against "them" mentality.  I know in my heart that these are good people who all want to help Jack as best they can.  I remember when my mom came out to visit me, oh so many years ago, when Jack was taking up residence in the St. Louis Children's Hospital PICU.  She spent one evening with me in the PICU (I think Jack had been inpatient about 2 months by this point) and she told me I had "ICU-itis" and I needed a break.  Turns out, I just needed a little Xanax. :-)

Well, my friends, that's the update for today.  I'm hoping Jack has a good night and that the urologist can shed some light on the situation tomorrow morning.

Onward.


9 comments:

Cindy said...

Ann know that both of you are in our prayers. As I read your blog it brought back memories of some of Courtney's hospitalizations. It is so frustrating to have a doctor explain the plan only to have your child return from a procedure with a different plan. It just causes more stress and work for moms and we are usually correct with our interpretation of the plan. You keep up being the best mom of Jack. Take care
Cindy

Cecelia Sturgeon said...

Ann, Mom was right and since the next procedure is days away you need to find someone you trust with Jack and have some personal down time. You will come back refreshed and stronger. We are all keeping You, Mark, and Jack in our prayers.

Anonymous said...

Hi Ann,
You don't know me but I "met" you on the trach boards in 2009 and have been following Jack's story ever since. I can totally relate to you and your situation as we are on day 17 in the PICU in Minneapolis! And it looks like we will have another 2 weeks (at minimum, I think). Ugh!! We are dealing with a stubborn v-p shunt infection. And you're right...woe to the person who stays longer than a week in the PICU! As time goes on the care becomes more and more inconsistent. It's as if they aren't giving (or taking) report any more and for some reason each new intensivist that comes on duty seems to undo all the ground we have made with the one going off duty!! Ugh! Anyway, I admire your determination to get the best care for Jack and I love hearing the way you are challenging the medical staff to do the right thing...every time! I am definitely trying to do the same.
Praying for you and for Jack!
Amy K

Sarah said...

Proof once more that parent are their child's best advocates. What would happen if we weren't there to run interference and question everything. Unfortunately I feel accurate communication is a system wide issue...now how do we improve it? You are doing an amazing job, Ann! Jack is so terribly lucky to have you. Hopefully you are past the half way mark for this hospitalization. Continued prayers to make it just a little bit longer. Love you!

CS said...

Oh good lord. How parents don't end up killing doctors, I don't know. The biggest hugs from Alabama. -Caty

The Hogan family said...

Unfortunatly, Ann, it becomes an us versus them sort of scenario becasue YOU are the one that pays attention to the details of what is suppossed to happen and YOU are the one making sure that Jack gets the proper care. While I too beleive that the medical professionals have the best intentions, they will readily accept mistakes as misunderstandings. Really, it is no big deal to them if their mistake leaves Jack inpaient for a few more days or worse. Stay strong...and know that there is NOTHING wrong with you staying on top of Jack's care. You remain his voice and you are doing an amazing job. Don't give up your fighting attitude. Know that we are keeping your whole family in our prayers as we certainly know how draining a stay at the hospital can be on all of you. How is Eric holding up? Hugs to you all.
Stephanie

Christy said...

Ann, I don't even know what to say. I'm just sorry as hell that you and Jack are having to go through this. Again. And it is exhausting having to watch everything to make sure all is okay for him. I hope you get to get out some this weekend. Sending big hugs and big drinks your way...

Love ya,
Christy xo

Eric said...

I must echo the sentiments and points made by the good people above. It is so sad that without your diligence things can and will 'go south'. Xanax? Wish someone had suggested that to me once.
Seems like the lack of urinary output should be the main concern, wishing you and Jack strength.

Susan said...

Uggh. That sounds very frustrating. Don't you wonder why you are the one pointing these things out and making sure everything happens the way it is supposed to? I do! Even this many years into it, I still just shake my head. (((((HUGS))))) I really wish you (as in you and Jack) didn't have to be there so long.