Sunday, April 24, 2011

Overdue update

At the risk of sounding redundant, I'm not sure where to start this post and apologize for not doing so earlier.  (Oh, that was redundant?  Well....oops.)  I really should try to even post small updates on a more regular basis because waiting just makes the task that much more daunting.  Complaining about and apologizing for it doesn't make it go any easier, so here we go...

  • The Port:  This was arguably our biggest issue of the week.  (As a refresher, this is an embedded IV in Keegan's chest that is accessed via a large needle and used to administer TPN, IV infusions, draw labs, etc.)  Tuesday we ended up spending a good portion of the day downtown consulting the transplant team, hematology/oncology, surgery, and the patient education nurses on the GI inpatient floor.  In the end, the overall consensus was to give it more time.  The dye study can be difficult on the kidneys, and Keegan's team reasonably had reservations about taking that step.  Still, every day brought more blood and discharge/TPN into the needle pad and dressing.  I think we had to reaccess him about 4 times throughout the week, with Gray and other friends or family members holding him still while I had the horrid job of actually putting the needle in.  By Friday when we went to GI clinic for his weekly labs and still saw blood in the dressing, it was decided (of course at 3pm on a Friday) that the dye study was, in fact, needed to rule out some damage to the actual port, rather than the tissue/muscle around the port.  If there was damage to the port, the only way to fix it would be surgery.  So, here we are at the end of the day and week, waiting on yet another test to tell us if Keegan would be headed into surgery and another inpatient stay.  Thankfully, the dye study showed the port itself was working well.  We reaccessed him one more time that night, and (knock on wood PLEASE as you read this) all seems to be going better over the weekend.  We haven't had to change the dressing or needle, and we are hoping it was just time that was needed.

  • GI: No change really.  He is still 100% TPN (IV nutrition) dependent, receiving only minimal tube feeds per day to prevent atropy of his stomach.  The barium used in the small bowel follow-through from earlier in the week causes most people to be contstipated for a few days.  Not Keegan.  This week has been bad for him, but the volume of output seemed to slow down a bit the last few days.  He seemed to be in some pain this morning, and Gray and I think there was defnitely some blood in his diaper.  We are hoping it is irritation related and not a bigger problem.  We should find out later this week because ...

  • Scopes: Keegan will be admitted on Wednesday morning for an upper endoscopy and colonoscopy on Thursday afternoon.  This will allow his doctors to get some pictures and biopsies of his stomach, colon, and parts of his intestines.  We anticipate the biopsies will also be evaluated using an electron microscope to get an even clearer picture of what is really going on in the cells of his intestinal lining.  Frankly, that's a lot of fancy speak for a last ditch effort that we don't expect will provide much insight.  Even at his worst, we rarely learned anything from these scopes.  But we have to rule everything out at this point.  Since Keegan's procedures aren't scheduled until the end of the day on Thursday, it is likely that he won't be discharged until Friday. 

  • The Point: At the suggestion of our doctors here and in Boston, we are "crossing the Ts and dotting the Is" by repeating the standard GI testing that hasn't been done since the spring of 2009.  We want to make sure that when we travel with Keegan for a second opinion and/or treatment, we go with current test results in hand.  Once we have all the results (by end of next week maybe?), we will consult with our doctors and decide what the next step will be.  We will end up either in Boston or Cincinnati.  What we are unsure of at this point is if we are going for treatment or just a better way of managing his current issues.  We are fully aware that, in all likelihood, we still won't end this with a true diagnosis, but we can't give up just yet.
So, I think that's a good summary of what's going on and coming up.  Therapy and pre-op tomorrow and Tuesday; inpatient rest of the week.  We are praying for more answers but at least no more questions as we round this up.  We had a nice Easter here with family, and I will try to get pictures of that up tomorrow. 

Once again, we can't say enough how much we covet your prayers for our Bug.  He is a fighter and stronger than I could ever long to be.  He showed that time and time again this week.  We are continually blessed by his spirit and by your support for us during these difficult times.  For now, we rejoice in the Resurrection of our Lord and in the promise that He brings.  This suffering is not in vain, and He will make it, as all things in Him, glorified in His time.  Happy Easter to each of you.

We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope...
 You see, at just the right time, when we were still powerless, Christ died for the ungodly...
God demonstrates his own love for us in this:
While we were still sinners, Christ died for us.
Romans 5:3-4, 6, 8

1 comment:

Stacie said...

Hey Maddie! Good to chate with you at therapy this morning. Even if it was all about doctor referrals!!! Continuing to pray for your sweet Bug this week. Thanks for the update.

Much love,
Stacie Smith