Sunday, July 19, 2015

"Family" Reunion

Recently our family traveled together to spend a few days in Gloucester, MA ahead of a regularly scheduled appointment in Boston.  We shared a house with four other families made up of some of the most amazing people in the world.

When you look at this group of people, they don't have much in common.  They all have different political views, differing religious beliefs, come from different professions, and have varying heritages. None of them live in the same state as one another, in fact, they don't even all live in the same region of the country.

A stranger walking into our group would have thought we were having  a family reunion or were friends who had known each other since childhood.
All of these families are living with Microvillus Inclusion Disease.

I don't mean that someone in each of these families has a horrible, incurable, life threatening, disease though.  I mean that these families live life to the fullest every single way they can.  They have bucked the conventional thinking that MID is a death sentence or something that you "suffer" from.
We spent that weekend living.  Having fun.  Laughing at each other and ourselves. We may also have consumed copious amounts of food and alcohol - but what happens in Gloucester, stays in Gloucester.

Sometimes the conversations turned serious.  We talked about challenges, disappointments, and frustrations we have experienced.  But these were sidenotes and not what anyone will remember about that weekend.

Many of us have children who we were told would never live to the age of 2, and that we were fooling ourselves by thinking there was an alternative to having a transplant with poor long-tern survival rates.  We were told that you can not have quality of life and live long term on TPN.

We have learned through experience and from each other that this is not the case.  We are not fighting a disease, but fighting to make sure that our children see past  it and know it doesn't control their lives.
We want to thank them all for sharing their lives with us and being the awesome people they are. They truly know how to Dream Big, Live Life!




Tuesday, August 26, 2014

Long Time, No Post.

It's been awhile since we posted here.  If you don't follow us on facebook, you can view our recent posts to Sam's facebook on the right side of this page.

We have been busy, busy, busy and are getting ready to head back to school next week.

Sam and I just got back from Boston today and we head to Georgia the day after tomorrow to day spend a few days with Oma.  Last week Sam's Opa passed away and we will be celebrating his life this coming Saturday.

http://www.legacy.com/obituaries/augustachronicle/obituary.aspx?pid=172250049

Thanks for checking in on us!  Hopefully once things settle down I can sit down and do a bigger update on everything that is going on with Sam.
 

Wait, how do I get this all home?

I have had a few people ask how we manage to transport our Omegaven home to Wisconsin from Boston.  It can be challenging because it is rather important to get it all back home in one piece.

For some perspective, this is a box of Omegaven.  It contains (10) 100ml bottles of white liquid gold. Did I mention the bottles are glass?  Because they are.  And they break.  When they break they are useless and they don't smell all that great.  Each box weighs about 5 pounds.

If you are starting out using Omegaven with an infant, you will probably be using one of these bottles each day.  That means carrying back home with you about 60 bottles, or 6 boxes.

In Boston they will dispense your Omegaven from the pharmacy.  You will get it in these nice sturdy paper bags, normally double bagged with three boxes in each bag.  So each bag is going to weigh about 15 pounds.  Unfortunately carrying one of these paper bags with 15 pounds in it for more than about 10 minutes will mean that you will lose all circulation in your fingers. 

With this amount of Omegaven you can easily carry it onto a plane and put it under the seat in front of you or in the overhead bin.  Unless your fingers have fallen off by the time you manage to carry these all the way through the airport to your gate.


If this works for you, great! You need read no further. I do have to warn you though, now that your child is using Omegaven the likelihood of them growing and gaining weight is pretty high.  Hopefully your child is using Omegaven short term to give their gut time to adapt and grow and you will be lucky enough to be able to stop using Omegaven before those boxes start multiplying like rabbits.

If you are in for the long haul like us, at some point your child will weigh over 10 kilograms and need a second bottle each day.


Then eventually this will happen and you will be sitting on the curb in front of the hospital with no fingers crying in agony.


Shipping all of this is an option, but you still need to get it all out of the hospital and down the street to the UPS store. With no fingers.  Even when you only have 12 boxes the shipping charge to get it back home is going to be horrendous.  And there is no guarantee that the UPS driver isn't going to play kick ball with your cartons and leave a giant pile of wet cardboard on your front porch that smells like rotting dead fish.  Believe me, it isn't pleasant.

Lucky for you though, you are reading this blog post and we can show you the easiest way we have found to get all of this home.

First, invest in a sturdy folding hand cart.  These can be found at many home improvement stores, I think I recently saw a similar one in Walmart.

 These are lightweight and easy to carry.  They fit under the seat on some planes, but have to go in the overhead on others. Unfolded they are a full size hand cart.  It is also handy to bring along a few bungee cords.

To stay under the checked bag weigh limit you will need 1 container for every 6 boxes of Omegaven you are transporting.  I do not recommend using cardboard boxes as the baggage handlers sometimes have kick ball tournaments with the UPS drivers.  The only thing worse than the front porch scenario from above is when that stinky wet box is on the baggage carousel and you have to haul it back to your car. We found these coolers at a local store for much cheaper than from Coleman directly.  They are the perfect size and relatively inexpensive.  They are also a lot harder to crush than a cardboard box.


We check these on the way to Boston, basically empty except for a bunch of bubble wrap.  When we pick up our Omegaven from the pharmacy we transfer it to these coolers right away to make getting it around the hospital a lot simpler.

Stick three boxes on the bottom of the cooler.

Pack all around all four sides with bubble wrap.


Add a second layer of boxes on top of the first row and pack bubble wrap all around them as well.  You can use the now empty paper bags as extra packing material. 

Put a layer of bubble wrap or paper bags over the top. Place the lid on the cooler and secure the whole thing closed with a heavy duty luggage strap.


You can then stack the coolers on your cart, add a bungee cord if you have one to secure it and wheel to wherever you need to go next.  We check these as baggage and have not had a broken bottle yet this way.  I also still have all 10 of my fingers after 6 years and 36 trips to Boston.

Friday, February 14, 2014

A long week

It's been a long week, we ended up being inpatient a week early due to a bloodstream infection. Sam came home Monday and we headed back into the hospital yesterday.

Sam's gallbladder removal went fine and we have a brand new central line. Sam has been in some pain off and on since surgery, but he is doing OK.  I will post a longer update once we get home.

Tuesday, February 4, 2014

Upcoming Surgery

Sam will be headed into the hospital next Thursday, the 13th, to have his gallbladder removed and have his central line rewired to a new exit site. If all goes well, we should e home late Friday. If you would like to send a "get well" card, they can be addressed to:

Sam O'Connor
PO Box 7407
Appleton, WI 54912-7407

Sam loves to open mail!!