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What’s next on the agenda?

September 29, 2009

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Could the world just stop for a moment so that we can catch our breath around here?  I am staring at my calendar thinking that we are going to need to schedule in some serious fun this month as it is going to be a medically bogged down next few weeks.  I took the weekend, and last Friday, and today off from making any phone calls to schedule appointments for Lucy.  I just needed a break from all of the planning, but now I am feeling like I need to get things done and scheduled so that I can get them off of my mind.  I need to schedule Lucy’s 24 hour EEG.  We see neurology again at the end of October so it would be beneficial to have the results of this study by then.  I also need to call interventional radiology(IR) at CHOP and DuPont and decide who, where, and when are we going to place her GJ tube.  We will hopefully make a decision on this soon.  Drew and I have pretty much decided that the GJ is the way to go with Lucy, but these decisions are never easy.  We have several options we need to make with the GJ tube: do we want her to have a GJ button or a tube, and do we want it done at DuPont or CHOP.  GJ tubes or buttons need to be replaced every four to eight weeks according to our GI who happens to favor the tube over the button, and they have to be replaced in IR under fluoroscopy so that they can thread the tube into the jejunum.  This means that we will have to have regularly scheduled visits to the hospital to have this replaced.

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Sophie’s expression says it all!

Lucy is scheduled to see a new pediatrician next week who we are hoping will be willing to work with our existing pediatrician and co-treat Lucy.  Our current pediatrician does not participate in the PA Medicaid system.  Lucy’s medical assistance requires referrals for just about everything, and since we want to utilized her secondary insurance we need to work with the system.  Our primary insurance is a PPO ,and therefore does not require referrals.  Apparently, it doesn’t matter that we pay extra for a PPO option, Medicaid has strict procedures.  Our should I say hospital billing has strict procedures.  Can you tell that I am exercising tremendous restraint while writing this post.  For those of you with PA Medicaid who use it as your secondary insurance, how do you get around the whole referral thing? Leave a comment at the end of this post if you have any advice or answers.   The process of getting Lucy into this new pediatricians office has not been easy, they would not schedule an appointment until they had received  all of her medical records, I kid you not.  Lucy is not your typical case and we are sick and tired of having to start from the beginning with new doctors.   Also we are very happy with our current pediatrician and have no desire to switch her to a new pediatrician.  Have I mentioned how terrified we are of any sort of nationalized health care.  Don’t be fooled, we already have such a thing and we are jumping through hoops right now to get it to work for our Lucy’s needs.   Hopefully things will work out for Lucy’s best interest.  I am keeping my fingers crossed, saying a few prayers, and even holding my breath that this will work out.

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Just thought I’d throw this picture in for fun!

Also on the agenda this month is metabolism and genetics, cardiology, and nutrition all on different days mind you, and   we have various therapies three times a week.  Oh yeah, don’t forget that we have three other beautiful, just as demanding, but thankfully not so medically needy children to love and take care of as well.  Like I said we are going to need to schedule in some serious fun when all is said and done!  

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Jen said...

hi! my name is Jen and I came here from little Jacks blog.. I lost my daughter in May to Mito.. and as I read through your post, I remember thinking and even saying "there are just not enough hours in the day!" All of the appointments, feedings, therapies are so important, but for me.. I had to remember to set aside time to just be normal for a while.. hold my daughter, play with my son..and I don't regret those times at all.. I wish I would have done it more!
your children are absolutely adorable!