Growing Frustrations

Ironically enough the overwhelming gratitude we've been happily bathing in is getting some unwanted jolts of frustration.  I have not updated about Julia's medical situation because we have been in a holding pattern of waiting.  A very long and frustrating pattern.

When we met with Dr. Fortunato (GI) in September, he set the deadline of December 3 for when he would make the decision to surgically intervene or not. He gave us a new regimen of daily medications that includes three different laxatives everyday.  Things seemed to go okay for about a month and then we reached the point where even all the meds combined didn't work.  In late October when she ended up in the ER with a severe UTI and partial blockage, the game changed.  When Dr. Hodges (urology) discovered her colon was still impacted, the plan was obviously not working.  As a result of her enlarged, inactive colon her bladder is now being compressed and is under stress.  It has thickened, is over-reactive, and no longer effectively controls urination.  He was adamant that she have surgery asap to put in a cecostomy tube.  She will need long term bladder retraining, biofeedback, and physical therapy to hopefully repair the urinary issues. The problem is none of that can begin until the bowel issues are addressed, hopefully in around a year.  He also reiterated repeatedly that the longer we wait, the more damage we are causing.

Knowledge is power but it is also frustrating.  We know what needs to happen, but we have no control over the hospital's scheduling.  We called Dr. Fortunato to relay what was going on and proceed to the next step.  They told us she needed a colonoscopy to assess the area and determine if they will be doing a cecostomy or a bowel resection.  They referred us to the GI endoscope clinic and told us to wait for a call.  Two weeks went by and no call.  After a long morning of phone hopping I finally got through to them.  It turns out they have no appointments for the rest of the year.  She said she has a huge stack of patients on her desk and they will start calling and setting those up sometime in January, so it would be done in the new year.  I asked if they planned to call and tell us this and she said, no, they don't do that.  I hung up the phone and just cried.  I then called the GI nurse again to reassess.  In my mind I felt like all of this would be handled by the end of the year.  It is obvious this is not the case.  I told her I needed the truth.  I need to know what kind of time frame we are working with to wrap my mind around it all.  My expectations obviously have to change.  I just want to know the plan.  Even if the daily stuff is hard, it's easier to handle when you know the next steps.  The nurse told me we were at the mercy of the endoscope clinic.  Once that procedure is done, Dr. Fortunato should be able to do her surgery within the week. At least now we know where the hold up lies.

The daily part of all of this is not easy.  Subjecting your child to all these laxatives and dealing with the effects of them dictates our every day.  It is so hard to watch her suffer on a regular basis.  Not to mention the expense of $150 every month for laxatives and diapers.  In addition to all the appointments.  And to have to know in the back of my mind that everything I am giving her is damaging and the longer this goes on the more detrimental it is to her organs and the longer we are going to be dealing with and paying for corrective procedures and therapies.  And of course any tests and surgeries done this month would be free, but everything in the new year we pay for because her deductible starts over again- aargh! I feel completely trapped in this process.  And it creates additional health problems...

Dr. Hodges reiterated to us repeatedly, that as long as this situation persists, she will continue to have severe UTIs.  His prediction came true, again, Monday night.  Julia was up all night screaming, unable to pee, and peeing blood. Every time this happens we are faced with the decision of a $250 trip to the ER plus labs and meds or waiting until morning for the $25 trip plus labs and meds.  I hate making medical decisions based on copays, but when you are dealing with a chronic condition it is an unfortunate reality.

We headed in this morning.  Julia could not even pee in a cup because every time she tried she bled. The pain was so severe it left her screaming and shaking.  It is in these moments that I get so angry at cancer.  By definition, cancer invades.  That is so true in every way.  It invades the body, invades your lives, invades your mind, invades your heart- in ways sometimes that you don't even see until it rears its ugly head over and over.  We feel the victory of being through treatment and still NED, but cancer continues to entangle and control our lives in long term side effects.  I hate seeing what it has done to her. The pediatrician determined, obviously, that she had another UTI.  They finally got a sample to send off for culture, but left both her and I soaked in urine.  They started her back on bactrim antibiotics, and gave her some codeine.

This Friday Julia has her follow up with Dr. Fortunato.  I am hopeful that he is going to be understanding and proactive.  If we make a trip in there and pay $25 just to chit-chat, I may have to make a scene.  I am hopeful that the recommendations of her other doctors, the scan evidence of her colon and bladder, the failure of the meds regimen, the repeated UTIs, and the continued pain and suffering will spur some action- preferably in 2010 and not 2011. Our pediatrician has said that if a new plan cannot be made on Friday, they will find a local doctor to do it.

So poor Julia is miserable, in pain, impacted, retaining urine, and an overall a mess.  She something like a whiny attack dog at the moment.  I am sympathetic of her situation, but she is out to destroy the rest of us and trying everyone's limits of patience and grace in this house.

So again we wait, hopefully hinging all our hopes on the next appointment...

And yes, I confess, I am still looking for the ways to be thankful in the situation. This is one of those cases where we are continually getting beat back down.  We are happy to finally have all the needed and skilled doctors on board, we just have to find a way to make all the moving parts work for her now.