21 Days Post Feeding Tube

Today is day 21 post surgery.  The infection has cleared up and we have mastered caring for the tube without the use of any sort of tape.  That is a huge SCORE as he was allergic to everything we tried.  The Interventional Radiologist that did the procedure placed 2 button type things as "anchors" using dissolvable stitches.  They were supposed to fall off within 2 weeks...  but dissolvable stitches don't dissolve on Michael!  Yesterday we called to ask about them as they were still securely in place and the majority of the pain/discomfort Michael was feeling was at the site of the 2 buttons.  The IR doctor told us to get him to the doctor right away to have them removed.  So today we did just that.  Dr. Mohindra was able to clip the stitch underneath and take them off.  He also adjusted Michael's tube a bit so that the disc would sit closer to the skin.  Already Michael is noticing a huge difference in comfort!!  

Michael is up to has max rate/hour for the tube feedings and tolerating that well also.  He's able to be off the tube from about 4pm until about 9pm every day...  which is super nice!  We try to do out of the house things during those hours, but Michael has mastered using his backpack when he needs to go somewhere outside of the off hours.  Last Saturday he even got out without me and went to a softball game with the kids to watch our best friend's daughter and our pastor's daughter.  

As far as nutrition goes - WOW!  I had NO idea how depleted he was in nutrients.  21 days in and he has so much energy and really looks good.  He's able to do things again without getting exhausted and it's great to see him getting out and about.  Our next hope is that the neurologist can get these dagnab headaches under control!!

We feel like we are over the learning curve and surgical hurdle..  and finally in a good rhythm.  We do know he will have to continue to have surgery every 3-6 months because the type of tube he has is the type that has to be replaced that often and can only be done in the hospital.  Prayerfully, the replacement procedures won't be quite as difficult as this first procedure!  But if it is...  we at least know what to expect.  

I sat down this week and started pulling our medical bills that we have paid out of pocket (not what's billed, but what we have actually PAID) so I'd have it ready for tax season.  I was SHOCKED at the amount...  it totals over $18,000 out of pocket for prescriptions, copays, coinsurance, deductibles, and mileage!  We could NOT have gotten through this year without the financial support of so many of you!!!  We sincerely want to thank everyone who has sent us cards, giftcards, checks, and donations through this site!!!!  

We wish a Merry Christmas to all of our friends and family!!

Michael and Michelle

Learning Our New Normal...

Michael's surgery to have his GJ feeding tube placed went well and we are slowly figuring out our new normal.  Figuring out things like taping the tube and timing have been trial and error and there have been a few snafus...  but overall we're getting the hang of it.  We've had friends and family jump in and help with things like IV poles and bed risers, coming to help us get organized, and praying with us...  we are so grateful for each of them!  

As far as needs go, our biggest need - quite honestly - is a financial need.  The hospital Michael had surgery in required prepayment up front or they wouldn't do the surgery, the home health requires our portion to be paid up front each month, there have been way more doctors visits the last few months than normal and we have more coming, normal monthly medical costs of copays, and prescriptions, and I'm certain his 8 day acute neuro hospital stay bill will be coming any minute as well.  My time off of work for each appointment and hospital trip the last month is all unpaid and it's really hitting us in a big way.  Add all this to it being Christmas...  I don't even want to think about that yet!  

We have looked into other state options for him to help with expenses and what Medicare doesn't cover, but he doesn't qualify for anything.  It is hard to even put this out there, but would you please pray about helping financially through YouCaring?  And please pray that things would fall into place so that we can take a deep breath and be able to move on with life without this weighing us down.  

Much love to all and sincere thanks!