Tuesday, November 12, 2013

The months following Children's

Like I have mentioned before, I have had to reference my caringbridge site for the more detailed information regarding our journey with Mr. Keean.  It's funny when you are in the moment and living something it seems like things drag on.  I remember thinking clearly that there were many things I would never forget........but like everything else.....time heals, we move on and we do forget SOME of it.  Keean had a weight rollercoaster for quite some time after discharge.  He would average about 1/2 an ounce a day and then would get sick and instantly lose 5-6 ounces. We were required to drive to St. Paul to see our GI doc once a week after discharge to do weight checks and to let her see how things were going.
I remember being extremely anxious for the first appointment because I was under the assumption that we would get the test results back for his test at this appointment.  I couldn't wait to get there so we knew what we were dealing with.......but at this appointment we found out that the test they told us took 7-10 days, in fact, took 8 weeks.  HA!  Are ya kidding me???? That's a bit of a difference.  When you go to the doctor and they tell you 7 days, in reality we are all hoping that the test results come back early....so it was a huge let down when we got there and heard 8 weeks.  BUT at least we were that much closer to hearing the results.....
On October 9, 2011, our friends had a benefit for us to help us cover expenses.  Keean's medical stuff was actually covered by his insurance, however, it was a life saver considering I had to quit my $30,000 a year job, travel expenses to and from Minneapolis, my husband's expenses driving back and fourth to get to work, the work he missed while we were there, eating out and so on.  Whenever we would see our big kids we liked to take them out of the hospital to give them some "normal" and that always costs money too.  So, the benefit was a God send.  We are still so very thankful to the friends/family who organized the entire thing, made flyers, got donations, made things, etc.  And so very thankful to the people who came. 
Things were pretty quiet....just dealing with the stress of Keean not consistently gaining weight.  On November 2, 2011, Keean's 5 month birthday, we got to bring him back down to Children's so they could put him under for another biopsy of his intestines and replace his PEG tube with a more permanent option called the Mic-Key.  This would allow us to take Keean off his feeds and not have a tube hanging out of his stomach.  It was a blessing to finally get it put in because if for some reason it would come out it is something my husband or I (or anyone really) can just put back in versus the PEG which would require a trip to ER.  It was also very painful for Keean with the PEG if it was pulled or messed with.  The Mic-key allowed for more "wiggle room". 
They wanted to do another biopsy while he was under to see if his villi looked like they were repairing themselves or changing in any other way.  SO, Happy 5 month birthday, baby boy!!!! Another trip to the operating room.....but thankfully it was a simple procedure and it was a positive change. 
This picture was taken right before surgery to have his Mic-key placed.

 This picture of Keean was taken at home after surgery and you can see what the mic-key looks like.

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