Thursday, September 29, 2011

Boston

Sam and I flew out to Boston today for a regularly scheduled appointment. We arrived in Boston at 11 this morning and got back home about 10 PM tonight. What a day.

The news from Boston was all good today. Sam's weight gain goal is 1 gram per day. He gained exactly 1 gram per day since our last visit to Boston in July. His labs look terrific. The last set of labs from August were all within normal range, the comment was made today that if they didn't know his history they would never guess that he has Microvillus Inclusion Disease. All of the issues we were having with liver enzymes and anemia has normalized. All in all Sam is doing well and is very healthy. His liver ultrasound from July looked good, no question regarding whether he will need to be listed for a liver transplant or not.

We discussed Sam's frequent vomiting today as well. These episodes are still occurring periodically and there really has never been a cause that could be found. After everyone got a whiff of his breath today, we are all in agreement that we are possibly dealing with bacterial overgrowth in his gut. We will be starting an antibiotic, Cipro, for 7 days to see if the symptoms improve and go from there.

We continue to keep an eye on his central line. The granulation has gotten a little larger and continues to have a pussy discharge. The site and tunnel still are not showing any sign of infection.

Boston is now managing 7 MID patients. I was told today that Sam is, by far, the healthiest of the 7.

We also discussed the possibility of moving our Omegaven study from Boston to Madison. I won't get my hopes up yet, but there are a few ideas on the table on how to make this happen so that we can travel to Boston less frequently.

Also on the Omegaven front, it sounds like things are moving closer to FDA approval. We've heard this before, so I will believe it when I see it.

This past week marked three years since the first time time that Sam came home from Boston. It marked the end of a two month stay there. For three years we have been traveling to Boston every other month. Sam has made the journey from Wisconsin to Boston 20 times.

We are grateful for everything that the team in Boston has done and continues to do for Sam, but the frequent trips have taken a toll on us. I have a lot less hair and what is left is quickly turning to all gray. Financially the trips have also taken a toll, and we have had a lot of help over the last three years to pay for those frequent visits. We can never say thank you enough to everyone that has helped in big and small ways.

Don't forget to check out www.sellingforsam.com. The proceeds from the sales on that site help to cover expenses for travel and medical care for Sam. My wife has been hard at work to continue to add new items to the store and it sounds like several people are planning to donate items for the store in the near future.


Tuesday, September 20, 2011

Pink Fluffy Unicorns

For those of you who visit Deb or Jason on Facebook, you may have already seen this, but we wanted to share it with everyone else.  It's only Tuesday, but it has been a rough week already. Our world was very suddenly thrown into a whole mess of uncertainty.  Times like this call for more Sam videos.

video

Thursday, September 15, 2011

Selling For Sam

Raising Sam has been an incredible journey for us over the last three and a half years.  We have been so lucky to have an extremely supportive family and network of friends that have done so much to help out.  From organizing fundraising to financial support, we couldn't have done it without their help.

For those of you who haven't been following Sam for very long, our main struggle recently has been paying for Sam to travel from Wisconsin to Boston.  We must do this every eight weeks in order for Sam to continue to be able to be part of the Omegaven study in Boston.  (You can check out the Omegaven page on our site for more Omegaven information or see the Sam's Journey video).  Sam's benefit three years ago covered those expenses and any medical bills not paid by insurance up until last October.  Since that time we have been struggling to continue to pay for these trips.

Our latest fundraising effort, Selling For Sam, is now up and running.  You can visit our store by clicking the link on the right side of the page.  As time goes on we hope to greatly expand the selection of items available in the store. Remember to check back often as we hope to add new items frequently and many of them are likely to be one of a kind.

This is where we need your help.  Do you knit, crochet, draw, sew, sculpt, or have any type of crafty bone in your body?  If you do and you have an item or two that you can spare, consider donating it to Selling For Sam.  We have put information on how to donate items on the "How to Help" section of the site.  No matter how big or small your item may be, every little bit helps. 

Thank you to everyone for continuing to follow Sam's story and doing what you can to help him out.  We never could have accomplished everything that we have without your help.

Tuesday, September 13, 2011

Wait and see.

Our visit to Madison went fairly well,  other than the fact that the clinic was backed up over an hour and a half by the time we got there.  Sam paitently waited for his name to be called while playing nicely with the other kids that were waiting.

We were sent home to wait and see what happens.  Sam has developed granulation tissue at the exit site of his central line.  It is showing signs of a minor infection, but it has not traveled up the tunnel of his line at all, so we will continue to treat with an antibiotic cream and just keep an eye on it.  If the granulation continues to grow (to about three times the size it is now) then we will attempt to cauterize it with silver nirate.  The granulation is open, draining, and sensitive - so it is causing a little bit of discomfort for Sam.

On a brighter note, I had a much better impression of Sam's "replacement" surgeon than I did during our last meeting and am hopeful that we will be able to work together well.

I am still not ready to see summer go, so I will leave you tonight with a picture of Sam enjoying one of our many hours spent in the pool this summer.

End of a good run.

This morning Sam and I are headed to Madison to visit with a surgeon to assess Sam's central line site. Not the way I really wanted to spend the day, but, it is what it is.


From the time that Sam was about a year old until last November we were dealing with chronic infections at Sam's central line exit site. This is the spot on his chest where his tunneled line exits his body. This line goes directly into a large vein near his heart and is how all of his nutrition and hydration are delivered to him.



That period of time was extremely frustrating for us. This is Sam's life line and there are only so many places that one can be placed. It is possible to use them up - and Sam is not four years old yet - so any replacement is a serious deal.



For the last several weeks Sam's site has been irritated and draining a little. We have been treating with antibiotic cream and it was looking better. This week, however, it has become painful and looks to be infected.



Adding to the stress of that, our surgeon in Madison (who trained in Boston) moved out of state. I am sure that the replacement surgeons we have been offered are more than competent, but having someone here that knew our doctors in Boston personally was an added bonus that we will greatly miss.



I am hoping that we can come up with a plan today that will not involve replacing this line, but we have been through this before with Sam and know all to well that he tends to not recover from these types of infections and it is just a matter of time before the line will need to be replaced.

Thursday, September 8, 2011

Where has the time gone?

We have had a very busy and healthy summer. Just one short admission in early summer and we have been busy ever since.
The summer was full of fun, with trips to the waterpark, amusement park, and day trips to the campground.
In between all of that the neighborhood kids spent a lot of time at our house over the summer playing in the yard or the pool. Sam loved spending time with all of the kids.
He made some great friends and really got to socialize more than he probably ever has before.
Unfortunately, the summer had to come to an end. (Who am I kidding, we were all ready for school to start). Sam was excited to get back to school as you can see from his smile as we waited for the bus yesterday.
When the bus arrived I didn't even get so much as a goodbye and he was up the steps on his way to school. The past three and a half years have just gone by way too fast.

Tuesday, September 6, 2011

A Fresh Start

A new website is something that I have been contemplating for awhile now.  It has been a little work, and things aren't quite perfect yet, but here it is. There are a lot of new features that we weren't able to do before.  Part of our lack of posting has been the blossoming of social networking.  We frequently post updates on Sam on Facebook, but often forget to do so here.

With the new site and the addition of "Sammy's Page" on Facebook, we should now be able to do both.  In fact, you will notice that on the left side of the page you can see the feed from Sam's page on Facebook.

Something else new that has been in the works is a new fundraiser for Sam as we are still traveling to Boston every 8 weeks.  The "Selling for Sam" store link will take you to a newly created Etsy store that will soon be full of handmade items for sale to help cover Sam's travel and medical expenses.  Over the next few days I hope to get all of the items for sale (pictures on the Facebook page) moved into the store.  I will also be providing information in the next few days for how you can donate items to sell.

If you were receiving email updates from Sam's old site and would like to continue to receive them, you will need to sign up again on the right side of the page.

That's all for tonight.  I am hoping to do our first official "Sam post" tomorrow on his first day of school.