Friday, December 26, 2008

Winter Wonderland

I don't think there was a doubt at any point this month about whether or not we would have a white Christmas.

The snows just keeps coming, we broke the record for most snowfall in the month of December a little over a week ago and I think we have gotten at least 5 to 7 inches since then. If it snows again before some of this melts I have no idea where we are going to put the snow that needs to be shoveled off of the driveway. Ryan is about 3 feet tall and the piles are way over his head.

Too snowy and cold for Sam to spend time outside, but Ryan and I spent the day digging tunnels and caves in the front yard.

The tunnel starts at the fron door and goes about 20 feet down the yard and ends in a cave big enough for our entire family to sleep in.

Tuesday, December 23, 2008

Despite everything, a Merry Christmas.

I am not sure where to begin tonight...

The holiday season has been a mix of emotions and challenges for us. Sam continues to do very well, he is learning new things all of the time and is generally happy most of the time. When we look back on photos from just a few months ago it is still hard to imagine that this is the same child. It is hard to remember how yellow he was and how grumpy he was most of the time. We (finally) have been able to get him started on medication for what we have thought was reflux for quite some time. This has had a dramatic improvement in the amount of vomiting fits that we have to go through in a day.

Sam's favorite person, by far, is his brother. A sure way to bring a smile to his face is to sit him down in front of Ryan and let them play. Sam couldn't ask for a better big brother. Ryan is amazing with Sam.

Jason will be returning to Boston with Sam on January 7th for a checkup. Hopefully this horrid winter weather will take a break for that week.

As we approach Christmas, we are so happy to be home with both of our children. There is always the chance that something could go wrong at any time, and we are happy to have made it through this week with no trips to the hospital for any unexpected Sam issues. This is not being pessimistic; it is just a reality in our lives that we don't plan many days in advance for anything.

For those of you who are reading this journal entry just a day before Christmas who were expecting a happy and uplifting journal post this is where you may want to stop reading and come back after the holiday. There has been a lot going on lately, some Sam related and some not, and we have been putting off posting and we try to let things settle down and work themselves out. You have been warned that the rest of this entry is not happy and uplifting.

Up until just a few weeks ago it seemed like we always had "something" going on. When Sam was first sick we had the house to work on. When Sam was diagnosed we had plans to make so we could bring him home. When he came home we were so happy to finally have him here that nothing else mattered. When he started suffering from TPN associated liver disease we fought to get him to Boston to start Omegaven. Then we went through all of the planning to go to Boston. Then we were in Boston. When we came home from Boston we had his benefit to get ready for. All of these distractions were serving a purpose that we never realized.

Over the last few weeks a new reality has begun to set in. This is our life. All day, Everyday. It never stops. 365 days a year. We are angry, sad, depressed, and tired.

We are tired of waking up every day to Sam lying in a puddle of his own stool from his shoulders to his toes. No matter what methods we have tried to contain it, there is just too much of it. This means a long tiresome process to get him and everything else clean and ensure that no bacteria is getting at his line. We are tired of the amount of laundry Sam creates.

We are tired of the constant battles and red tape that it takes to get anything done for Sam. We are tired of having most of our adult conversations with nurses, doctors, pharmacists, insurance companies, and medical billing offices. Our insurance company has now determined that it is not medically necessary for Sam to have home nursing care. This is absolutely ridiculous considering the fact that we know other children with this disease receive upwards of 40 hours a week in dedicated nursing compared to the hour or two that we were receiving before this decision. This means that we will need to haul Sam, and everything that goes with Sam, to the clinic and hospital more frequently. Just what he needs is more visits to a germ filled hospital. We have tried in vein to get a hold of our nurse case manger for 4 days without a return call. We are almost too tired to even fight this battle. We are tired of someone who has no idea what Sam needs deciding what he needs.

We are tired of the sleepless nights. If we are not worrying about Sam, we are worried about finances, or the next thing to go wrong with the house, or the next asinine thing our insurance company will come up with, or about each other’s mental health.

We are tired of trying to act like there is nothing wrong and that everything is OK around Ryan. The last thing we need is for him to feel like we are tired of him and I fear he does feel that sometimes.

We are just tired. We need a break. We cannot remember the last time we went somewhere, together, without at least one of the kids. We are not comfortable leaving Sam with anyone and there are not many people out there who would be comfortable with us leaving Sam with them. He requires a lot of attention and a mistake with him can be disastrous.

We are happy that Sam is here with us, at home. In June we very much doubted that Sam would be here for Christmas, and we thought that if he made it until Christmas it would most likely be his last. We grieved, we accepted, we were prepared. Things have changed so much in the last few months that we forget some days how fragile he really is. We still have Microvillus Inclusion Disease to deal with everyday. At any moment something could go horribly wrong and we are no longer prepared to lose him. It is hard to prepare for such a festive time of year and have that thought in your head that this could be the last Christmas for Sam. We stay positive, and really don't for see any major problems in the near future, but that doubt will never go away, ever. I honestly do not think I will fully enjoy another holiday for the rest of my life.

We feel horrible for having these thoughts, we are very fortunate to have a healthy, happy Sam here with us for this holiday. There are many families who are not as lucky as us.

For those of you who have been following Emerson's story, our hearts are breaking for her family this week. We are scared for them and cannot imagine the pain they are going through. This could have been Sam if we had tried for a transplant, he could be in a hospital right now suffering through complications like Emerson. If you have a moment to leave a message for Emerson, please do so at her website:

In spite of everything, we will still have a very happy Christmas. It will be an emotional one, but we are happy to be home, where we can feel a little magic on Christmas morning when Ryan fills our house with excitement.

Wednesday, December 3, 2008

Long Overdue Update

It has been quite awhile since we updated everyone, but there really has been very little to tell.

Sam is doing very well and slowly gaining weight and growing. He is about 13 1/2 pounds now.

We have been working on sitting and standing. Sam picked up sitting very quickly and is a pro. Standing is going a little more slowly, but we are getting the feeling that we are going to skip over crawling and move right to walking.

Eating for him continues to be a challenge. We keep at it, but mostly he just pushes stuff around in his mouth until it is runny enough to drip out.

Sam gave us a little scare over Thanksgiving, He started vomiting a lot, which continued the next day. Due to some confusion we spent a few hours in the ER, but were sent home after they realized that we were already monitoring for dehydration and giving him extra fluids at home. Things seem to be better now and more back to normal.

Jason & Sam will be headed back to Boston on January 7th for a check up and we can't wait to show off everything Sam has accomplished since his last visit.

Sunday, November 16, 2008

Back Home After A Good Trip To Boston

We arrived home late last night after an almost relaxing trip to Boston.

Our clinic went well, Sam looks good, and all of his labs also look good. They have increased the calories in his nutrition quite a bit and we will hopefully get out of this plateau of no weight gain we have been in for a few weeks and fatten him up a little. We also got the go ahead to increase his off time from 4 hours to 5 hours and are looking forward to gaining the extra hour of freedom unattached from his pump. Hopefully in another month we will be able to go up to 6 hours if he tolerates 5 hours. We also have been given the go ahead to slowly try some different foods. Sam has developed an aversion to oral feedings in the last month and usually gags if you put anything near his mouth. We will be working with a speech therapist soon to try to overcome this and then attempt to try a few things that could be more tasteful than rice cereal. Sam's oral intake will still be very limited and not necessary for nutrition, but we want to try to keep him eating at least small amounts of food each day to keep everything else working correctly. He also has been given the OK to drink small amounts of water which will be a very new experience for him.

We have also almost completely eliminated Sam's double diapering. We are still using the double diaper at night to help reduce the amount of poo we need to clean up, but otherwise he is down to a single diaper throughout the day. We still monitor his daily output vs. input and check the specific gravity of his urine several times per week to ensure he is properly hydrated.

Starting this week we are also trying something new to help prevent infection in Sam's line and will be locking his line with ethanol three times a week instead of heparin. It sounds a little scary to inject ethanol into a baby, but it actually just sits in his line and is drawn back out a few hours later. In the event that we forget to draw it out, Sam would become drunk and sleep for a few hours, but should not have any other serious side effects. The ethanol kills any unwanted bacteria in his line and also helps to break up any plaque in his line.

We have also perfected the use of a new dressing technique for Sam's central line. We have dubbed this as the "Australian Butterfly" as it was shown to us by a doctor from Australia when we were in Boston in September and the end result looks like a butterfly wing. The dressing is much more secure than anything else we have tried and stands up to a lot of tugging without putting pressure on the line itself. For the other parents out there with children with central lines, we will put together instructions and some pictures if you want to try it out. It takes some practice to get right, but the end result it worth it.

On Friday we got a chance to sit down with Dr. Puder to catch up. Dr. Puder is starting a third MID patient on Omegaven soon. We have given him permission to share Sam's story with them and are hoping that they will contact us to share information. We had a long discussion regarding healthcare in general, transplants, etc... It was nice to hear about his opinions and experiences at length. He is also working on writing an article about Microvillus Inclusion Disease and the impact that Omegaven has had on his patients with the disease, as well as another paper on the mystery of Sam's blood work. Sam has had continual problems with his blood work since birth. His red and white cell counts, and hemoglobin, have always been an issue. Since starting Omegaven these have all corrected themselves without the need for further transfusions. No one is certain why this happened to Sam, but he is not the first (Bo had a similar experience). Once again Omegaven is doing things that are too good to be true, and is one of the many reasons that so many doctors will not even consider Omegaven as an option.

All in all it was a very pleasant trip to Boston. The travel home was a little frustrating as Sam has decided it is unnecessary to nap and by the evening he was very crabby. Nothing like making friends on an airplane by having a shrieking baby on your lap. The rough landing in Appleton and the subsequent arm rest flying down to smack him in the head didn't help much either. Sam has his first non needle or scalpel induced bruise. Another milestone met.

Tuesday, November 11, 2008

A Week Of Milestones

We are all packed and ready to go. Heading to Boston first thing tomorrow morning. We are getting very good at packing for Sam and I don't think there was any yelling involved this time around. A first in our house.

Returning to Boston means that we have been home almost two entire months, with only a brief hospitalization for his line infection.

Today Sam is receiving his 100th dose of Omegaven.

Today Sam's total medical bills hit $1,000,000.00. Actually $1,000,022.64, but what's $22.64 in the grand scheme of things?

All in all things have been very quiet. We get a lot of people asking when we are going to post updates. I know everyone is curious and just wants to know how things are going, but believe me we don't want to have to post any updates here. We are trying to post at least once a week, anything more than that means something isn't going right.

Sam is doing well at his developmental goals. His new favorite thing is his exersaucer, which is a nice change from laying on the floor. He is starting to show signs that he is working up to scooting around, this is a good thing, but we are still not prepared for him to be mobile.

The rest of the family is doing well also. Ryan left tonight to go spend a few days with Grandma and Gramps while Mommy, Daddy, and Sam head to Boston.

Time to get some rest, that early morning flight isn't going away...

Wednesday, October 29, 2008

A Quiet Week

Actually, it has been almost two weeks since Sam's benefit, but who's counting days or weeks?

We wanted to thank everyone who made it out to Sam's benefit on the 18th. We all had a great time being able to be out and about, Sam and Ryan both had a terrific time.

Sam is doing well. We have been working with Physical Therapy on trying to get him to keep making progress with his development. This week he has really gotten the hang of rolling over, which can be a little frustrating when we are trying to get him to have some tummy time. All in all, considering his adjusted age and the amount of time he spent in the hospital he is doing very well developmentally.

Sam's weight gain has slowed to a crawl, actually stopped, but we are told that this is normal after such big gains previously and not to be concerned yet.

We are preparing for our clinic visit in Boston on November 13th. It is a little scary to go back. Our biggest fear is that he will get sick or something will go wrong while we are out there and then we will be stuck there until he is discharged. At least we know he will be well taken care of in the event anything does go wrong while in Boston.

The last few weeks have also been a little sad as Ally, one of the stories we have been following, passed away unexpectedly on October 13th. Her funeral was the same day as Sam's Benefit. Ally had many struggles in her life and she was a very strong little girl.

Another little girl, Emerson, has been in very rough shape over the last few weeks. We keep checking her website everyday hoping for good news. If you have a spare moment, please visit her site and leave a guestbook message. Her family is struggling and the guestbook messages mean a great deal, we know from experience.

Sam's good health is starting to scare us. We hope that there is not some "health bank" that we are building up interest in. We are always expecting the dreaded hospital stays and when they don't come we worry that we may be building up for something big...

Sunday, October 19, 2008

A Message To Our Families and Friends

Sam’s Benefit on Saturday was a huge success and so much fun, we will post details and our thoughts on the benefit later this week. For today we just wanted to share with the world a message that we sent to our family and friends:

Dear Family and Friends:

E-mail may not be the most personal way to convey this message, but it was important to us that we get this message to you without delay and we can not always predict from day to day where we will be or what will be going on…

In the past seven months we have experienced something that no parent ever expects to experience. Having a child with serious medical issues is something that happens to someone else, a friend of a friend, someone who knows someone. We have had so many highs and lows since Sam was born that it is hard now to try to go back and even think about the range of emotions we have experienced. Many of our plans for the future have been altered, but we can not say that our lives have changed for the worse.

When Sam was diagnosed with Microvillus Inclusion Disease in May we were given several “facts”. We were told that our only option was to visit transplant centers and to get Sam on a transplant list, If we didn’t do this Sam’s TPN nutrition would continue to destroy his liver and we would need a new liver anyway. Sam’s liver disease was progressing at a rate that would have required a transplant within 6 to 9 months in order for him to survive. We were also told that the likelihood of finding a donor was slim. It is hard to locate a donor of Sam’s size with healthy organs. Then we were given the statistics regarding transplant survival. The mean lifespan after transplant is two years. Two long, agonizing years filled with worry about rejection, long recovery periods, suppressed immune systems, and many unknowns. As we prepared to take Sam home, we were also preparing to watch our son slowly get to a point where his body would no longer be able to sustain him. We lied to our families. We could not bear to tell our parents that their grandson most likely would not survive to the age of one. We had grieved for Sam weeks ago, before he was diagnosed, convinced that he was not ever going to leave the hospital and were just happy to be able to take him home, even if it was for a very challenging and very abbreviated life. At least we finally had an answer about what was wrong with Sam.

With our decision to go to Boston we have also faced many challenges. At every roadblock we just fought harder and the challenges and strain on our family has been worth it. Omegaven has done for Sam what it has done for so many other children and essentially changed the entire outlook for his life. Currently Sam’s prognosis is very good. Barring any unforeseen complications Sam will be able to live a very full, normal life. He will most likely have to carry his TPN pack with him for 18 to 20 hours a day, but he will be otherwise healthy, happy, able to attend school, be able to play with his brother, make friends, graduate from high school, go to college, become rich and famous. Our hope is that someday medical technology will be able to offer him an alternative to carrying his pack. Transplants are becoming more commonplace and in ten or fifteen years the prognosis for these patients could improve dramatically. Just 5 years ago the prognosis post transplant was much worse than it is today. Our goal is to keep Sam healthy long enough for him to be part of a decision someday to continue to live on TPN or try for a transplant when the time is right for him. Whatever his decision may be at that point in his life we will support him even if we are too afraid of losing him to agree with him.

We could not do what we are doing for Sam without the support of our friends and families.

When Sam was born we were in the middle of buying our house. We had so much work to do before we could move in. Some of you spent hours and days in Appleton with us helping to clean, paint, rip out carpet, etc… We never could have had the house ready to move into in time without your help.

When we were ready to move many of your came to Appleton to help us. We were overwhelmed by the number of people that showed up to help and moved everything we own in a matter of just a few hours. It would have taken us days without your help.

Many times over the last seven and a half months we simply could not have Ryan with us. He spent so much time with Grandma and Gramps that we think he started to think he was never coming home. At times Grandma and Gramps could not watch him and there was always someone willing to step up and take him for a few hours. He never could have made it through this experience as well as he did without your help.

Since the day Sam became ill we have received many emails and messages in our guest book. Most days we could not even respond to most of the messages that we received because the volume was simply too high. We have read and saved every one of these. Many times they were the only thing that got us through the day. We have also had a wealth of moral support through phone calls and visitors. We could not have kept our sanity without your help.

Sam’s benefit was amazing and overwhelming. Over $30,000 was raised so that we can continue to provide Omegaven to Sam. This will allow us to pay for all of the expenses that we incurred for his initial trip and there will be money left to use for future trips. So many of you put in hours and hours of work into making the benefit such a success. We had so much fun on Saturday that even if we hadn’t raised a single cent we still would have called the day a success. We could not have saved Sam’s life without your help.

We want to let each and every one of you know that no matter what your role has been in the past months, big or small, that we appreciate every one of you and the effort you have put in to help us out when it was needed. Your acts have been selfless and we will never be able to say Thank You enough. There are no words that can accurately express our gratitude for everything that has been done to help Sam and our family through some very difficult times.

Earlier in this rather long winded message we mentioned that “Many of our plans for the future have been altered, but we can not say that our lives have changed for the worse”. How can we say that our lives have not changed for the worse? Don’t we realize the immense challenges and struggles that we may still face? Did we forget that the amount of care Sam still needs is tremendous? Did we overlook the fact that many things we took for granted before now require detailed preparation - even for something as simple as leaving the house to go grocery shopping?

There are challenges and stresses in our life everyday that most people will never have to deal with. We have come into contact with so many families that have it much worse than we do. Their challenges are greater, or their support structure is not as good, or they are just closed minded and not willing to explore options that don’t come from their physician. Our hearts ache for all of those families, yet we follow their stories because it reminds us everyday that no matter how bad things seem, they could be worse.

We have also experienced the good that Sam has brought into our lives. Our family is stronger. We cherish our time with our children more. We cherish the time we get to spend with our families more. We tend to let little things bother us less than we used too. We have gotten to see family members that we normally only see at holidays, weddings, and funerals for no reason other than to visit. Ryan has gotten to know many of Jason’s cousins children better than he ever would have been able to before and loves to spend time with all of them. We have watched our families and friends come together to do something great. We have gotten closer to those family members as well and without Sam we most likely would have missed that opportunity.

So something good has come out of our struggles. We appreciate what Sam has brought to our lives we appreciate all of you. We are so happy to have all of you in our lives. Don’t let anger or petty squabbles keep you from enjoying your family or end friendships, you never know when you will need that person in your life. Life is far too short to be stay angry. Make an effort to make amends with someone you are angry with and make an effort to spend more time with your family in honor of Sam and the good he has brought to our family.

Thank you again to each and every one of you for everything you have done for us and helping to give Sam a brighter future.

With Love,

Jason & Deb

Sunday, October 12, 2008

Sam Becomes Big News

Sam was featured on the front page of the local newspaper in Fond du Lac, WI this morning. Here is a link to the article:

I think the article is available online for only a few days, but I will get a copy posted onto Sam's site as soon as I get a chance.

Not much else new over the last week. We have developed a plan to get rid of our current double diapering and are testing right now. Hopefully in another week we can cut our diaper usage in half.

Sam is becoming more mobile and scoots himself around to reach toys that he wants. He has also taken a great interest in the line between his port and his TPN bag so we are trying to be very careful to keep it out of his reach.

Deb returned to work this week on a very part time basis. She is hoping to work back up to about 30 hours a week eventually. We are still working through how to make this work but we will manage somehow.

We are also preparing for a visit from Oma and Opa who are traveling to Wisconsin this week to attend Sam's Benefit. Preparations for the benefit are in full swing. Putting this together has been a lot of work for everyone involved and we are looking forward to spending the day celebrating all that Sam has accomplished.

Monday, October 6, 2008

Sam's weekly labs today show that his direct bilirubin has dropped to <0.1 (which means pretty close to zero)! The normal range for this would be 0 to 0.4. When we first arrived in Boston Sam’s direct bilirubin was just below 8. Overall the rest of his labs continue to look good as well, we still want to see his liver enzymes come down a little more.

There is not much else to share as our lives have been simple and excitement free for the last several days. Sam continues to be happy and healthy. We're still tired, Sam still requires a great deal of energy and attention, but it is nice to go to sleep at the end of each day with our whole family sleeping peacefully under one roof.

Thursday, October 2, 2008

A Surreal Experience

Today I took Ryan to the doctor for his 4 year check up and a flu shot. Every time they asked me a question about Ryan I would have to stop and think about my answer because my Sam answers are so hard wired into my brain. It was the strangest feeling to be talking to a doctor and not be having a conversation about Sam.

Sam hit 12 pounds today! He is doing well on the antibiotic and we have not experienced the drastic increase in his output that we were expecting.

We attended the NICU monthly pizza part tonight. It was good to see familiar faces again and it is always nice to see a wide range of kids who were in the NICU for one reason or another doing so well. It will most likely be the last one we will be attending until spring due to RSV season being right around the corner. That is the last thing we need right now.

I know that there are people from all over who read Sam's journal. If anyone out there is in the Shakopee, MN area we encourage you to attend a benefit for the family of Sydney Markie. Sydney was also diagnosed with Microvillus Inclusion Disease and lost her battle on July 22, 2008 after receiving a multi visceral transplant in Miami. More information on the benefit for her family can be found at:

Our friend Carter is still continuing to struggle in Boston. Please continue to keep your thoughts and prayers with Carter and his family:

If you don't see a post here far awhile, don't panic. No news is good news and we are hoping for a few days of no news.

Monday, September 29, 2008

Sam 1, Infection 0

Sam appears to be winning the battle with his line infection and left the Hospital Sunday. Thankfully he has responded well to the antibiotics and we did not have to remove his line. 10 days of antibiotics will hopefully eliminate any remaining bacteria.

We weren't sure what to expect with our most recent hospital visit. This was the first time that Sam was admitted to the pediatric floor of Children's Hospital of Wisconsin - Fox Valley. All in all it went well. Most of the nurses had seen Sam before when he was in the NICU and they were all very impressed with the way he looked. The pediatricians were equally impressed and I think that they are firm believers in the fact that Omegaven works. (We heard the comment "I can't believe this is the same baby" many times). Sam as a patient and us as parents we can be a little overbearing on the hospital staff, but we left there with a good feeling and will not hesitate to return when needed and avoid the long trip to Milwaukee unless absolutely neccessary.

Time to sleep, only 5 hours and 20 minutes until the next dose of antibiotic...

If you haven't had the chance, please watch the "Sam's Journey" video on Sam's homepage. If you are an emotional person, have a kleenex or two ready.

Thursday, September 25, 2008

Our First Line Infection Has Arrived

Sam has had fevers before. It is always a big panic to make sure there is no infection in his line. The fevers always turn out to be nothing and we normally never figure out what was causing the fever.

We didn't get lucky this time. Sam's has developed an infection. Today they are adding a third antibiotic to target the strain that is growing in Sam's blood. Hopefully we can get this to clear up with antibiotics, if not we will need to move him back to Milwaukee to have his line removed and a new line placed. Infections are very scary for Sam, especially when they are in his blood and free to move around his body.

We are so careful with his line, and watch everyone who accesses his port like a hawk. We have only been home from Boston for three days and nobody except us has accessed his port since we left Boston. Now we need to go back at look at our procedures and try to look for gaps where we can be even more careful. We may just start wearing bio-chemical suits around the house...

Wednesday, September 24, 2008

The little things we take for granted

When Ryan had a fever we did what almost all parents do. Gave him some Motrin and hoped the fever did not develop into something nastier, watched to make sure it did not get dangerously high, and if it lasted for more than a day or two call the pediatrician.

Sam developed a fever early this morning. Not a high fever and it was very warm in the house, not a big deal. Later in the morning the fever went over 100. Bad news for Sam, the fever really is a fever. Alarm bells start going off in your head. Did we get jinxed by the all of the doctors and nurses in Boston congratulating us of not yet having a line infection? Does he just a have a cold? Does he have the flu? Is his brother messing with us and wrapping him in a heating pad when we aren't looking?

Since Sam has a central line we can't wait to find out the answer and Sam has to be started on a round of IV antibiotics. Great. More poop that normal, which is already too much. We can hear the skin on his but breaking down. Then the gaggy pukey thing kicks in.

So back into the hospital Sam goes. We got to see a few familiar faces from the NICU today. It is hard to be back at Children’s Hospital of Wisconsin - Fox Valley. So many bad memories of a much tougher time. If only they had made the pediatric floor not so similar to the NICU I might not have had to endure the felling of traveling back in time a few months. It is nice to see all of the people who took such good care of Sam, we just prefer running into them at the grocery store.

On the bright side it was nice to have so many people who had not seen Sam in awhile get to visit with him. They were all amazed at the progress that he has made.

We planned for something like this to the best of our ability. There are certain logistics involved with coordinating Sam's care through three different facilities that were bound to not work perfectly the first time. Hopefully all of the kinks are worked out now. Then there is the non FDA approved Omegaven. Still have a few kinks there to work out, but we made it through and Sam will get his full dose of Omegaven each day until he is discharged. All in all this did not go too bad for a first run with no practice.

Sam will be in the hospital until at least Friday when his blood cultures come back. Hopefully we will find no infection and we can go right back home.

Today we learned that Gavin, who's story we started following recenty, lost his battle with liver disease Monday evening. Gavin was awaiting a liver that never came. We have been lucky so far and have worked our way around needing a transplant for Sam. We might not be so lucky some day. There are far too many people waiting for donor organs that never get them. If you are not an organ donor, please register - there is a link on our homepage, and make sure you let your family know of your wishes. Gavin's story can be found on the Little Wonders page under Gavin S, or at

Monday, September 22, 2008

A Long Journey

At last we can all be home together after the long journey we started 50 days ago.

We arrived back in Wisconsin yesterday, a very uneventful journey home, just as planned. Everyone is amazed at how good Sam looks and how different he acts. It really is a huge change. I have added new pictures and if you visit the Omegaven page there is a good side by side comparison.
We will never be able to say Thank You enough to everyone who made it possible for Sam to receive Omegaven in Boston and saving Sam's life. Sam still has a long, sometimes difficult, road ahead of him. It has been easy to forget the fact that Sam still has a life threatening disease when he looks and acts so healthy.

The night was not as kind to us as a failed pump and troublesome tubing adapter led to very little sleep. These things always seem to happen in the middle of the night.

We were so fortunate to meet two families out in Boston that have really touched our lives.

The Velarde-Chan family met up with us on Friday for dinner and conversation. It was nice to be able to sit down and talk with someone who knows exactly what you are going through. Bo took full advantage of being the "big" kid for once and kept stealing Sam's nook, then the boys had a pooing contest to see who could poo the most during dinner. All in all a very enjoyable evening. We are hoping to meet up with them again in Chicago before we hibernate for the winter.

We enjoyed dinner with Sean and Chelle Cates on Saturday. Their son, Carter, went to Boston for Omegaven in April. Unfortunately due to a complication caused during an endoscopy, Carter was listed for a multi visceral transplant instead. Carter has recently developed some complications and is back in the ICU at Children's. There are a lot of questions and few answers for them right now. I do not remember ever meeting anyone as positive and uplifting as Sean and Chelle. Even during everything they are going through they would never hesitate to do whatever they could for anyone else. Many visitors to our site having been saying prayers for Sam. Sam is having a good spell right now and can spare a few prayers and well wishes. Tonight we are asking everyone to please focus your prayers and thoughts to be with the Cates family instead. Carter's website can be found on our "Little Wonders" page, or directly at . Hopefully Carter will recover soon and will be healthy enough to have a few visitors when we return to Boston in November.

Saturday, September 20, 2008

On Our Way Home

The hard drive on our laptop went out at the end of the week so we have not been able to update or check email. I finally made it to the hotel computer while someone else wasn't using it.

We are spending the day today trying to pack everything back into the suitcases and making sure we have everything that we need in our carry on baggage for Sam. We will be arriving back in Wisconsin Sunday morning.

Sam's bilirubin took another big drop over the last few days and he is now down to 2.2. His liver panel also shows huge improvement this week, all good signs that his liver his healing and that he is ready to go home.

We got to spend some time with Bo's family yesterday, It was nice to finally get to sit down and spend some time with them. We are hoping to make some plans for the future to meet in Chicago.

I see there is a few people waiting to use the computer, so we will update more once we are home and settled.

Wednesday, September 17, 2008

Good News From Boston

We received a surprise on Monday when Dr. Puder added on a bilirubin panel to Sam's labs Monday. We normally don't see Sam's bilirubin until Wednesday.

On Monday Sam's direct bilirubin had dropped to 3.2. That was a drop of an entire point in just five days and a good sign that going home at the end of this week may be possible.

On Tuesday I traveled to Boston to help prepare for the trip home to Wisconsin. I had not seen Sam in three weeks. The change in Sam has been nothing short of remarkable. His color is good, he is full of energy, spends time laughing and smiling, and overall is obviously feeling much better.

Today we had an appointment with Dr. Puder and more good news. Sam is now 23 1/2 inches long, and weighs 11 pounds 1 ounce. To add even more good news, Sam's direct bilirubin dropped another 1/2 point to 2.7 in the last two days. To top that we were given the OK to take Sam home this Sunday. We just need to make it through the next 3 days with no new issues or major changes and we can all go home together.

Now we have begun working through the logistics of taking Sam home again, which is much like the first time we took him home. Arranging to have or pediatrician act as our point person and advocate for Sam in Appleton, making sure that our local hospital is prepared to care for Sam if needed, making sure our local hospital is prepared in some way to deal with Omegaven if needed, making sure that the home care is all set to go again and we will get a delivery of supplies, making some decisions regarding other issues that have come up with Sam's care in Wisconsin, etc...

Today we also had a chance meeting with Bo and his Dad, Jose. Bo is the little boy from Michigan who also has MID. It was nice to meet them and we can't wait to spend a little time with the whole family tomorrow.

Saturday, September 13, 2008

Counting the Days

Sam is still doing well and took in the sights of Boston today. He had a very happy day. That is a few happy days in a row and a good sign that we may be close to going home.

One thing I forgot to mention before is that we have begun feeding Sam again. It has been a few weeks since we ran into a multitude of issues arising from his formula feeding. This week Deb started feeding him rice cereal, which he appears to hate the taste of, but eats it none the less. We are starting slowly so he is eating about 1/2 teaspoon a day right now, but it is nice to be able to have him eat again. I forgot to ask Mom what his weight is, so I will update that tomorrow.

Deb and I are both anxious to get home and have our family together again. I will be heading to Boston on Tuesday so I can attend Sam's appointment on Wednesday. Sam's direct bilirubin was still just above 4 this past week and we were told he would be in Boston until it hit 2. When Deb asked Dr. Puder if we should change our travel arrangements he said no. Hopefully this means he is very confident that the small decrease this past week was at least partially caused by the issues with the antibiotic. Deb pointed out that his green bile filled poo's stopped when he started having issues with the antibiotic and are back in full swing now. Hopefully his body is flushing out toxins in high gear.

I have had quite a few depressing experiences in the past two weeks:

First I noticed a sign in a gas station that listed the year you had to be born in to buy cigarettes. I then deduced that someone born the year I graduated from high school can now legally drive in most states. Has it really been that long?

Since we initially brought Sam home from the hospital we have obviously gone through many changes in our life. The biggest for us was when we were out in public. He tends to attract a lot of attention (or at least he did when he was so jaundiced) from strangers. While these people are well meaning, they almost always said something that was terribly insensitive. We grew accustomed to that, and always tried to blow it off. I was not, however, prepared for what I heard this week. Someone at work was trying to tell another person where to find my desk. I was just around the corner at the time. Person one starts telling person two what row my desk can be found in. Person 2 then said "Oh, is he the one with the sick kid?" I realized at that point that I will most likely be identified by the fact that I am the one with the sick kid for years to come and there is nothing I can do about it.

My four year old told me today that three plus four is seven and proceeded to prove it by taking three blocks and putting them in one pile, four in another pile, and then combining them and counting them. Then he told me that seven minus two is five and took two away and showed me that there were five blocks left. I am not sure when he learned addition and subtraction, but life is going by way too fast.

Friday, September 12, 2008

Five Years Ago

Five years ago today I became the second luckiest person in the world. That was the day I married my wife. (She became the luckiest person in the world because she married me.) This is not quite how we had envisioned our 5th wedding anniversary, We were thinking more along the line of dinner and a quiet evening alone. Definitely not an evening alone. While his may not be what we planned, as nothing is these days, we are still here. We are still together. We still have two beautiful children. Could we ask for more?

This week has been a rough week. Part of being a parent with a "sick kid" has become following the other parents stories who have other "sick kids". You become very attached to the other kids even if you haven't met them. When they are doing well it makes us happy and fills us with hope. When they are not doing well it is as if your own child is having a bad week too. We currently are following about 14 kids - some with MID, some Omegaven kids, some others. It has been hard to celebrate how well Sam is doing this week when I have watched four of our "friends" struggle this week with some serious issues. We are hoping for the best for all of them.

Thursday, September 11, 2008

Back at the Hotel

Sam was discharged today and is back at the hotel with Mom and Oma. He seems to be doing well and his chest seems to have healed.

They have come up with a plan to mix most of Sam's replacement hydration into his TPN which means that he is now down to one pump from 7 AM to 3 PM. Less to carry around is always good. Hopefully this will work out for him and become a more permanent thing. If we can get his stool output to stabilize we will be able to go having all of his hydration mixed into his TPN.

Not much else is new, which is a good thing. We could use a few days of nothing new for awhile. I will be leaving to go back to Boston on Tuesday and we are still hoping for all of us to come home on the 21st.

Wednesday, September 10, 2008

Maybe Tomorrow

Sam is still in the hospital. They switched his Anitbiotic on Tuesday and he seems to be doing better. I guess that is one less on the short list of antibiotics that we can use with Sam. He will hopefully be discharged tomorrow so he can spend some time with Oma before she has to go back to Georgia.

Sam's total bilirubin dropped an entire point this week, but his direct only dropped .3 to 4.3. Dr. Puder is stumped becuase by the way Sam looks he expected him to be lin the low 3's today. Sam's skin has no yellow anymore and his eyes are almost completely white. We will just have to wait and see how things go over the next week. Dr. Puder is still pretty confident that there is a good chance we will get to leave next week so I haven't changed our flight reservations yet. If all goes well we will still be home on the 21st.

Monday, September 8, 2008

Just In time

Just in time for Oma's visit to Boston, Sam will be spending the night in the hospital for observation. So far all of his labs have come back OK. Potassium is a little high, but Mom knew that was coming due to the fact that his stool output has been so high and his replacement fluid has some Potassium added.

Since he was having all sorts of blood drawn anyway, they ran a bilirubin panel today. Unfortunately Sam's decrease has only been .2 over the last six days, unless that drop starts to pick back up we may have to delay the homecoming a bit. That would fit right in line with our luck since the plane tickets were purchased yesterday.

We did get some really good news over the weekend, I can't share it yet and it has nothing to do with Sam, but it was nice to get good news for a change...

In Out In Out In Out In

I realized this morning that I forgot to post over the weekend that Sam was discharged on Friday. He was sent back to hotel with Mom, but was to continue with 6 days of IV antibiotics.

The infection on his skin seems to be much better, which is very good news.

Unfortunatley, due to the anibioctic (or another random reason, but most likely linked to the antibiotic) his stool output has increased to a level never seen before in Sam. He has also been sleeping way too much and has these little shrieking fits about once an hour. Due to this, Sam is on his way back to the ER to be admitted once again. Dr. Puder just doesn't want to take any chances since we are so close to going home.

I will post again later today when I have more information...

Thursday, September 4, 2008

Back In The Hospital

Sam was admitted back into the hospital today, the infection on his chest is back. Not quite as bad as last time, but we can't take any chances. We could have tried to manage this with antibiotics at the hotel, with the weekend coming up that was sure to lead to a 5 hour visit in the ER for Deb over the weekend.

On the brighter side of things, or delayed homecoming has enabled us to have an experience that we may have otherwise missed out on. From time to time we mention Bo on our site. Bo also has Microvillus Inclusion Disease and has been on Omegaven since October of '07. Bo and his parents will be in Boston the 13th to the 21st so we will get a chance to meet with them. We are very excited to meet them and since they have over a year on us with Bo, we are sure to walk away with some good advise and knowledge. As an added bonus, I heard form Bo's mom today that we may also get to meet the Cyr family from Maine. Mallory and Maisy Cyr are sisters who both have Microvillus inclusion disease. Out of all the information we have found, their story gives us possibly the most hope for Sam. You can read about them from the link on the "Little Wonders" page of Sam's site.

Our goal is to leave Boston on September 21st. As long as Sam cooperates and his direct bilirubin continues to drop at a similar rate we should be getting the green light to leave Boston shortly before that and still have time to meet up with our new friends from Michigan and Maine.

Wednesday, September 3, 2008

4.6 And Counting

Sam had another good drop in his direct bilirubin this week from 5.8 to 4.6. Another big number and very good news.

Mom is still pretty sad though, she had her heart set on an even bigger drop and a vision of coming home next week. Looks like she will be stuck in Boston for about two more weeks or so. I am sure that today being Ryan's birthday didn't help her sadness any. We were prepared for the fact that we may be there for 3 to 12 weeks, but sometimes our optimism gets the best of us and we set our hopes a little high. I will just be happy that we will all be together for the upcoming Holiday season. It is right around the corner, there are only like 30 more days until the stores start putting up Christmas decorations at the beginning of October, after all.

Tuesday, September 2, 2008

A Month of Omegaven

Sam has officially been an Omegaven baby for 1 month. All signs are pointing to a homecoming in the near future.

Sam continued to have lots of green poo over the weekend. Sam went from yellow to pink pretty much overnight last Wednesday night, Mom went for a walk on Friday and received zero comments about Sam being yellow. All good signs. We are anxious to see what his bilirubin and liver panel look like this week.

We don't have much else to report. Fortunately there just hasn't been a lot going on with Sam for the last few days for us to report.

We are definitely tired of having our family split up by just a great distance and it is starting to wear on both of us. We just keep telling ourselves that it will just be a short time until we can all be home together again.

Ryan's birthday is tomorrow, the 3rd. We were hoping that Mom would be here for his birthday, but it just didn't work out that way. Ryan knows that his birthday is September 3rd, but with his 4 year old knowledge of the calendar we have decided that it will be September 3rd when Mom comes home no matter when Mom comes home.

I have been slowly updating the rest of Sam's website as time allows and published most of the updates yesterday. The updated "What is Microvillus Inclusion Disease?" Page contains an image of a cell from Sam's intestine and a normal intestinal cell. There are other updates and new pages as well, please take a moment to explore.

Wednesday, August 27, 2008

Green is Good

Sam's tubes went in today without a hitch. He had a little Morphine after the procedure and slept quite a bit.

He is a little cranky right now as they have had to arrange it so that he can not reach his infected skin on his chest. At least now he can't scratch, but he also can not get his hands to his face which does not make him happy.

When we started Omegaven we were told that one of these days Sam's stool would be green. We have been waiting and waiting, today was the day. This means that the Omegaven is working at that Sam's body is getting rid of the excess bile that was in his system due to his decreased liver function.

Sam's weight today broke 10 pounds! He had on his diapers so the 10 pounds 1 ounce is a little inflated, but we will still say he broke ten pounds today.

We have run into a few issues with Sam's benefit that was planned for September 20th. I have removed the poster from the website until a few decisions can be made and we have more definite information.

10 pounds and green poop make for a good day.

Tuesday, August 26, 2008

Sam and His Lady Friends

Apparently Sam missed all of his lady friends at the hospital so we will do the bad news first and the good news second today.

Sam's skin was a little irritated under the dressing for his central line after his last admission to the hospital last week. Deb made a mental note for next time to tell them to use his regular dressing instead of the dressing they had been using at the hospital. All weekend he was trying to scratch at his dressing so we knew it was a little irritated. Overnight he had worked his dressing loose and this morning when they went to change it at the hotel they noticed some green fluid around his line. So Sam was back to the ER with a possible infection at his insertion point. Sam was admitted to the hospital today again for observation and antibiotics.

The good news is that the infection is not in Sam's line or even at his insertion point. The irritation under his dressing combined with the warm weather in Wisconsin over the weekend caused his skin to break down around his insertion point. Part of Sam's dressing is a disc called a BioPatch which helps prevent his insertion point from becoming infected. It is a small antimicrobial foam disk that sits on his skin and contains Chlorhexidine Gluconate which is an antiseptic agent. Sam's has a skin infection under his dressing except where the BioPatch sits, which kept the infection away from his insertion point. Some people (doctors) we have talked to didn't really see the necessity of the BioPatch, but I don't think anyone will be winning that argument with us anytime soon. The infection should be no big deal and they will apply a topical antibiotic and gauze under his dressing until he heals.

The other good news is that Sam's direct bilirubin dropped again and he is now at 5.8. Although Deb was a little disappointed, she is anxious to get home so I can't blame her, that represented an entire point, from 6.8 to 5.8 in just six days and really is a huge change. Sam's hepatic liver panel also has improved dramatically and Dr. Puder noticed today that Sam's hands and feet have gone from yellow to pink! All good signs that Sam's liver is recovering and he will get to come home soon.

Sam is still on for his procedure tomorrow to have tubes inserted into his ears. Farewell to the ear infections, we hope they work as well for him as they did for Ryan.

Sunday, August 24, 2008

A Surprise Visit Home

We post recently about how we were disappointed that Deb and Sam would not be able to make it back to Wisconsin for his Uncle Todd's wedding. That post was purely for Grandma's benefit. We were able to surprise her on Saturday when Jason came walking down the hall with Sam in his arms.

Sam was in good spirits all weekend. I had not seen him for two full weeks and I can definitely see a huge improvement in him. He is still jaundiced, but his color has improved and is much happier. He is also more active and his cheeks have defiantly gotten chubbier. He also discovered that he has a central line and likes to try to get a hold of it and pull on it if he gets the chance while his shirt is off. We could have gone without that discovery for a few more months.

Sam enjoyed the wedding and everyone was happy to see him. It was nice to have our entire family back together even if it was for just a few short days. Having him here definitely made an already joyous occasion even more so. Tomorrow Sam and Deb will be heading back out to Boston and will remain there until we are given the all clear to bring him back for good.

Since our camera made a visit to Wisconsin as well I was able to upload some new pictures. I also added a few short video clips. They are not very exciting, but we did get him to smile once or twice.

Sam will be having tubes put in his ears on Wednesday. Getting all of the fluid behind his ears out will hopefully mean no more ear infections and having to use antibiotics less frequently.

Wednesday, August 20, 2008


Sam was discharged from the hospital late this afternoon and seems to be doing well again. He was sleeping peacefully at 9 tonight and will hopefully be back to his normal schedule soon.

His sudden downward turn is still unexplained. He has had similar episodes before and the current theory is still that his oral feedings have something to do with it. He is back to his soy formula, but only a few milliliters a day instead of the few ounces a day he was tolerating before. His direct bilirubin has dropped back down to 6.8 and we will hopefully keep the downward trend going now. His dose of Omegaven was also increased slightly this week and more adjustments were made to his nutrition and replacement fluids before he left the hospital today. The week has taken a toll on Sam and his weight on Monday had dipped to just below nine pounds.

We will be taking a short vacation from any benefit work and journal entries until early next week. Sam's uncle Todd will be getting married on Saturday so the next few days will be very busy for Jason and Ryan as they are both in the wedding. When we were first planning our trip to Boston we thought that Sam would be back for the wedding, but we were delayed in starting treatment so Deb and Sam will have to miss the wedding.

We have added a copy of Sam's benefit poster to his homepage. We will be adding more details on the website soon. Thank You to everyone who has been involved in the planning and preparation for the benefit, and all of the individuals and businesses that have made contributions. We will be adding a page to our site soon to recognize everyone’s generosity.

For those of you reading this at School Specialty: Please encourage your immediate supervisor to volunteer to sit in the dunk dank at the benefit. How many of you wouldn't enjoy dunking your boss? It will be September and chances are that it will not be warm outside, of course this is Wisconsin - it could be 90 degrees that day, but that will not diminish the enjoyment you will receive.

Monday, August 18, 2008

All better?

Sam is feeling much better today.

Nobody knows why yet. I think he is just giving his Mom a hard time...

The current theory is that his oral feedings are causing him to be extremely uncomfortable. Those were stopped yesterday and he has made a complete 180 degree turnaround since yesterday. He is still in the hospital for observation and will most likely be discharged tomorrow.

Since it is important for him to have at least a little oral intake, if possible, they are going to explore other products for him to try and reduce the amount he is getting to hopefully help his tummy feel better.

Sam has been on Omegaven for two weeks and Mom says his color is much better. She has been taking pictures every day, well almost every day, and I can't wait to post them so we can share his new look with everyone.

Sunday, August 17, 2008

How do babies know?

How do babies know when it is the weekend? Do they have a secret internal clock that kicks in on Friday evenings that tells the "It's the weekend, the doctors’ offices are closed, get sick now"?

Sam was pretty fussy yesterday. Mom was very stressed out and very tired. Overnight his fussiness escalated into being completely inconsolable.

Sam's night ended with a trip to the ER. His blood work doesn't show anything very significant, other than his direct bilirubin has shot back up to 7.2 - looks like our hopes of being home within four weeks may be shot. His stomach was very distended, but no real cause for that has been found yet either.

He really does not have any signs of an infection, but they are not taking any chances and have started him on antibiotics. He may have a virus and may just have to wait it out. His stool output has been up a little over the last few days, but we also made a change to his oral feeds (from formula to straight Pedialyte) due to the stomach discomfort that he was feeling after eating. They do not believe that this change has anything to do with his recent output or behavior and are convinced that this is just a coincidence.

He is being admitted to the Hospital for observation for the next 24-48 hours and they are hoping that everything settles back down on its own. Hopefully this will give Mom some time to recharge her batteries as well.

Wednesday, August 13, 2008

Lab Results

Sam's big round of labs test came back today.

Sam's direct bilirubin was at 7.8 on August 4th when he began his Omegaven treatment. Typically this level gets worse before it gets better and it can be a few weeks before there are noticeable results. We were hoping for a steady number or a small decrease. We need this level to be below 2 before Sam is able to return home.

Sam's direct bilirubin today was at 6.1! This is a huge drop in only 8 days. Dr. Puder is hoping that we can continue these big drops each week - at this rate we may be home at just over three weeks.

Sam's Hematocrit was a little on the low side today. They were getting worried that Sam's marrow had gotten "lazy" because of the multiple transfusions he has needed. After a few more tests though, the rest of his results look good and it appears that his marrow is producing blood cells. They think that this low level is most likely being caused by the amount of blood that has had to be drawn over the last 8 days to try to get his nutrition worked out correctly.

Sam's weight was at 9 pounds 8 ounces today! This is a gain of an ounce a day since we started Omegaven. We were lucky to get a few ounces a week before, and then we always seemed to lose a few here and there.

Sam also has a consultation with the ENT doctor on Thursday. We can't seem to get rid of the fluid behind his ears and he will be having tubes put in before he leaves Boston.

Overall a very hectic day, but for once it was a good hectic day.

Tuesday, August 12, 2008

A Happy Sam

Today, I have been told, was the happiest that Sam has ever been. He apparently spent most of his day today smiling and giggling with Mom and Oma. This is a big change for Sam; hopefully it is a sign of more good days to come. Every day it is hard to believe that it has already been 5 months since Sam was born. At the same time it is hard to believe that Sam was only born 5 months ago.

We don't really have any other news. The team in Boston continues to make small adjustments to his nutrition to get everything just right for him before we leave Boston. Tomorrow will be Sam's first bilirubin panel since he started Omegaven and we are anxiously waiting to see if there has been any change. As I have said before, most babies take a few weeks to start to see results, but the MID kids seems to react faster and we are still holding out hope that Sam will be the fastest ever so we can all get home again.

I have added a new page to the website that explains, in a very basic way, what our normal daily routine is for Sam. I have had a few people ask what we need to go through each day. You can see from that page that it really isn't too bad, but we make it sound easy. Grandma gets a headache every time she is around in the evening when we are prepping everything and getting him reattached for the day.

Friday, August 8, 2008

The ears again

Sam has developed an ear infection again. Since he is many miles away from his regular physicians, this meant a four hour visit to the ER in Boston. It also meant a very sleepless night last night for Mom and Dad, which was unfortunate since Dad had to go home today.

Sam developed a cough a few weeks ago which was getting better. Last night was a non stop cough-a-thon, but a chest x-ray was clear and there are no clear answers as to what is causing the cough.

Sam is still "puke free" since his first dose of Omegaven on Monday. We do not have any lab results to share yet as his first bilirubin panel will be next Wednesday, we are being optimistic and hoping to see that this has at least held steady (a small decrease would be better). We have decided that he is just a tiny bit less yellow today than when we first got to Boston, but our eyes could be playing tricks on us and we really want to come home as quickly as possible.

Wednesday, August 6, 2008

Sam comes home (sort of)

Sam was discharged from the hospital today after officially becoming the 94th baby to receive Omegaven from Children's Hospital Boston, and we are now back at our temporary home at the Holiday Inn.

Sam has now had two full doses of Omegaven. As hard as it will be to believe for many people, we can already see a difference in Sam. His horrible vomiting fits that started a few weeks ago have stopped completely. No puking in two whole days. He also seems to be more comfortable and is sleeping more peacefully than we have seen in quite awhile. We now just wait patiently for the day that his direct bilirubin falls below 2 and we can go home for awhile. We have also been warned to prepare for a large increase in Sam's energy levels over the next few days, this will be a huge change as Sam sleeps a lot right now and has never really had very much energy.

We will never be able to say Thank You enough to Drs. Mark Puder and Kathleen Gura for the work they have done to make Omegaven available to the patients that need it. They, along with the entire staff at Children's Hospital Boston, are some of the most compassionate, and passionate, people in the medical profession that we have met and the level of care that they have provided has been superb. We have been very fortunate to receive excellent care for Sam in Wisconsin from his Pediatrician and at Children's Hospital of Wisconsin, both in the Fox Valley and in Milwaukee, but Boston has brought a wealth of experience regarding 100% TPN dependency (and Omegaven) that I do not believe we could have gotten anywhere else.

We also need to thank everyone that has provided financial support to allow us to seek out this treatment when our insurance would not cover it. We never could have done this for Sam without your help.

When we first heard of Omegaven from our doctors in Milwaukee, we could not fathom having to be in Boston for an extended period of time or having Sam on an "experimental" treatment. We were fortunate enough to be contacted by the parents of two children who were on Omegaven and once we read their blogs we were done researching and moved on to preparation. Thank you to Kinn & Jose (Bo's parents) and Abby & Gib (Eleanor's parents) who made their stories public and available for others to read. Hopefully some parent who's child is suffering from TPN induced liver disease will stumble upon our site, or we will stumble upon them, and we can share this lifesaving information with them as well. There are others out there, of course, but these are the two that we happened upon and ultimately made our decision to come to Boston for us. All of them work very hard to spread the word and we hope to be a small part of that in the future.

We could probably go on for a long time thanking all of the people that have helped us through the last five months, but the list is just too long. We have definitely gained a new respect for the human race as a whole after experiencing firsthand the way people pull together and help one another in a time of need.

We will continue to post any new developments with Sam. It may take us awhile to get new pictures posted but the wait will be worth it when you see a brand new Sam.

Monday, August 4, 2008

An Omegaven-Baby at last!

Sam officially became the 94th or 95th Boston Omegaven Baby at 4:32 PM today (Another baby was starting today and we are not sure yet who started first). We are very optimistic about this treatment and happy to hear today that the other (there have been a few) MID patients that were treated with Omegaven have reacted to the treatment more quickly than others - hopefully we can be home in fewer than 4 weeks.

Sam didn't sleep much last night, he was very restless all night long which made for very long and crabby night. We are back at the hotel now, getting ready for dinner and then sleeping for 12 hours. We miss Sam already, but taking a break from his care and getting some rest will be a huge relief.

Sunday, August 3, 2008

We have arrived

We just wanted to let everyone know that we arrived in Boston late last night. We had a few problems along the way, but we will fill you in later. In a few days I may be able to laugh about the stupid mistake that I made and then I can share it with everyone.

Thank you to Lori and Bill Fogg for making the trip into Boston to pick us up from the airport and find our way to the hotel. It was nice to met both of you and we appretiate all of the extra running around that you did for us. It made for a pleasant end to a crazy day.

We are staying a few miles away from the hospital in Brookline. We went for a walk today and explored the area and we were pleasantly suprised to find everything we needed within a few blocks of the hotel. The rest of today we are relaxing and getting ready for Sam's admission tomorrow

Friday, August 1, 2008

A very long day

I am about to go to bed after being up for most of the last 39 hours.

Let me start by saying that Sam is fine, actually he is better than fine, and that as long as nothing horrible shows up over night we will still be on our way to Boston tomorrow.

Sam's Hemoglobin was so low last night that he probably should not have survived. No idea on the cause of that yet, but they are working on it. Sam has always been slightly anemic but never to this extreme. Once again he has fought a battle that he should not have been able to win and come out on top.

Sam had a transfusion this morning and will have another one later tonight. He will be discharged tomorrow afternoon (Thankfully we booked our outgoing flight from Milwaukee) and we will be heading to Boston. Sam will be admitted to Children's Hospital Boston on Monday at noon.

It was nice to see everyone at Children's in Milwaukee again, but I think that they would all agree they would prefer it under different circumstances.

Just to lighten the mood - Sam's room is just around the corner from where he stayed for a month at Children's the first time we were there. The feeling that we had never left and the lack of sleep caused me to go into the wrong room twice today. Thankfully I was only caught once.

Now we look forward to going through airport security with over 3000ml of fluid, sharp needles, and electronic equipment that can not go through the x ray machine tomorrow. We have prepared the best we can for that, but I am sure it wil still be frustrating.

Thursday, July 31, 2008

An unplanned event

It is 3:00 AM. I have not been to bed yet, so please excuse any typos.

Sam had a fever tonight. A fever can be a sign of an infection in Sam's central line so we had to take him into the ER tonight at 10:30. Good news, no infection.

Unfortunatley Sam's Hemoglobin is dangerously low. Sam left Appleton about 30 minutes ago in an ambulance headed for Children's in Milwaukee - I am headed out the door to join him there now.

I will post another update later today, we are hoping that everything works out and we can still make the trip to Boston on Saturday, but this may delay our trip.

Monday, July 28, 2008

On our way to Boston

It has been awhile since we updated the site with any new information, so we have a lot to update.

Sam's weight is still hovering right over 9 pounds. His liver enzymes and bilirubin continue to be elevated. Sam's has had several crabby days lately and it seems like he is very uncomfortable some days. We also had a little bought with an ear infection, but that has since cleared up. Sam still has quite a bit of fluid in his ears, and we are already working with the ear, nose, and throat specialist to schedule him to have tubes put in his ears when we get back from Boston. Sam's brother had horrible trouble with ear infections, and our choices for antibiotics are somewhat limited after our first try at an oral antibiotic did not go so well, which is prompting us to go the route of tubes a little sooner than normal.

Sam will be checking into Children’s Hospital Boston on 08/04/08. Deb, Jason, and Sam will be leaving for Boston on Saturday. Although this is good news, we have had quite a bit of disappointing news to go right along with it. We have not been able to convince our insurance or Medicaid to cover his treatments in Boston. This leaves the total cost of both his Inpatient and Outpatient treatments solely on us. The estimated cost for his first trip to Boston is approximately $20,000. Since Medicaid will not be covering any part of the treatment, we also lost our medical assistance travel reimbursement which was another setback. We were fortunate; however, to receive a grant from Winnebago County to help with expenses which will cover our airfare and allow us to stay in a hotel until more permanent lodging arrangements can be made. We can receive a 40% discount on Sam's hospital charges if we pay for the services up front, but even $12,000 is a stretch for us right now. No matter what the cost, we still are positive that this treatment will be a huge benefit for Sam and we will continue to do what we can for him.

Several things have been going on or are in the works to help cover the expenses for Boston and we will never be able to express our gratitude enough to the people who have donated time, money, and other items to help cover the expenses for Sam's care.

Fundraisers were planned at Jason's place of employment. Last Friday and ice cream social was held to raise funds. This Wednesday they will be holding a pancake breakfast as well. These activities have all been planned by a group of associates who took it upon themselves to help us out. So far they have had very good success due to the overwhelming support of the employees of School Specialty. Several members of Jason's family are planning a benefit for September 20th and we will post more information on our website as we get closer to that date. We have also gained some assistance from a local marketing firm who are helping us in getting the word out about Sam in our community in hopes for more local support.

Thursday, July 17, 2008

Two steps back

Things have not gone as planned and have taken another frustrating turn. Most of this frustration is simply getting different facts on different days and just when you think everything is going to work out another wrench gets thrown into the works.

The appeal to have Sam's inpatient stay in Boston be covered by insurance was denied again. We were not very concerned about this because we had also been told that Medicaid would pick up any charges that our primary insurance did not cover. Unfortunately they failed to mention that this was only if our insurance covered the stay. Since our insurance will not cover the stay, Medicaid will not cover any charges either. This also means that the funding that we were anticipating for the travel, lodging, and meals also went away.

The inpatient stay in Boston is by itself fairly costly. Then we also need to consider that insurance also has not agreed to pay for Sam's outpatient care in Boston or subsequent follow up visits. This is still being worked on and we are hoping to at least get that portion covered, but it does not look promising.

Due to all of this, we have had to delay the trip to Boston. It is heartbreaking to watch Sam continue to slowly go downhill and know that we were so close to being able to do something for him that would have taken most of his current issues away. We are just hoping now that we can quickly come up with a plan to finance his trip to Boston and get him the help he needs.

We have been provided a wealth of information regarding organizations that may be able to help. Unfortunately we have not had any luck yet and it seems like almost every program or grant has some type of limitation or conditions to it that we, or this treatment, do not meet. We are continuing to work at this and hopefully we will find a match soon. I am also very fortunate to have a very caring group of people at my employer who have planned a fundraising benefit to help with Sam's care. We also recently received a gift from my mother's co-workers to contribute to this fund and we thank them for their generous and unexpected gift.

It is just a matter of time before everything comes together and we can get this done, there is no question in our minds that we will work this out somehow and we will get Sam to Boston soon. It will just take a little longer than we hoped.

Monday, July 14, 2008

One step closer

Things are starting to come together and we are one step closer to getting Sam out to Boston. Medicaid has agreed to cover any medical bills that our primary insurance does not cover while we are in Boston. We are just awaiting final word from our primary insurance on whether or not they are going to accept or deny our appeal to their denial of coverage for the outpatient portion of Sam's treatment.

Other things are planned, but not finalized - we know which airline we will be flying and which flight we will be on, just not what day yet. We know where Deb will stay when she gets there and have started to create lists of things to pack.

Sam's weight was up slightly this week - 8 pounds 7 ounces. Unfortunately his bilirubin levels are up again this week as well and his direct bilirubin was at 3.8 today. We have gotten so used to him being yellow that we forget sometimes - until someone points out that our baby is yellow.

We hope to have a date set to check in at Boston in the next few days and have told them that we can be there as soon as they are ready.

Saturday, July 12, 2008

Good News / Bad News

Since our last update we have received several pieces of news regarding Sam's trip to Boston. Unfortunately we are still waiting for final approval from Boston to schedule a definite admission date.

Our primary insurance has denied our precertification for Sam's inpatient stay in Boston. There was some confusion regarding Sam's secondary insurance (Medicaid) and because of this the hospital did not send a precertification request to them. Medicaid will not pay for this visit if the precertification is not done, so we will need to wait and see what the response is on that before going. Our other option would be to skip the insurance for the inpatient portion, and cover this portion ourselves. We can make that happen if needed, but would prefer it if insurance picked up the tab for it. This means that everything is on hold until we can get these arrangements worked out.

We did get good news from the county this week; they have located some funds from family services to help cover the cost of our travel and lodging for our trip. Between this and the portion that Medical Assistance will be covering virtually the entire trip will be covered.

We are anxious to get things moving. We know that every day that we have to wait is just causing more damage to Sam's liver. We are still hoping to be in Boston by the end of July and will hopefully know more in the upcoming week.

Thursday, July 10, 2008

Four months old!

Sam turned four months old on Monday! There were a lot of days that we never thought we were going to make it to four months.

Not much has changed with Sam. His weight is still hovering between 8 pounds 5 ounces and 8 pounds 9 ounces, depending on which scale we are at that day. His direct bilirubin that we reported as 5.2 was an erroneous lab result. His very next set of labs came back with a 3.2 and we rose to 3.5 this week. Sam's liver enzymes continue to rise as well and we are very anxious to get to Boston and get Sam started on Omegaven.

We had a tentative date to check into Children's Hospital Boston on July 15th, but it looks like that is going to be delayed a little and they are still waiting for final approval from the finance and billing department - which was delayed due to having issues getting Sam's medical records off to Boston. Getting things arranged has taken up a lot of our time and we still have some arrangements to finalize, but we need to get that final date set first.

Sam had had a little bit of a cold - or allergies - over the last week and has now developed an ear infection. He is pretty crabby and sleepy, but he loves to get his antibiotic and acts like it is the best thing he has ever tasted. For him that isn't saying much - but he thinks it is a treat. Ryan had constant ear infections until we had tubes put in his ears, so we just hope that Sam doesn't head down the same path.

Otherwise things at home are still OK. We have our routine down and we manage to get through each day. We seldom find ourselves bored and it just seems like there are not enough hours in the day to do everything we want to do. It seems like no matter how much we sleep, we are still tired. The months of stress have finally started to catch up with us. Everything we go through every day is worth it. There is nothing like the feeling we get every morning when Sam is the happiest and full of smiles. We have learned to appreciate the little things and cherish every moment with both of our children.

Sam and Ryan at their most peaceful

Monday, June 30, 2008

One month down...

We have survived a month at home. Some of the days in that month have been very good days. Some of the days in that month have been not quite as good. The past week has been filled with quite a few of the not so good variety, but we will vent about those shortly.

It is hard to imagine what our lives were like 4 months ago. March 1st really wasn't that long ago, was it? We spent the day with friends and all of the kids at Wild Air and we played almost as much as the kids. Even Deb, at the end of her 8th month of pregnancy, got into the action. Everything was so care free, at least that was what we remember. We were about to close on our house and were busy picking out new carpet, paint colors, new appliances. These seemed like such tremendous, important decisions at the time. We spent time everyday talking to Ryan about being a big brother. These were exciting days, full of dreams and plans for the not so distant future.

When we skip ahead a month and remember what our lives were like 3 months ago, you have to do a double take because you can't believe that this is the same family from just four short weeks ago. It feels like out family is falling apart. Ryan is practically living at his grandparent’s house. We can't sleep, eat, or work. In fact we can barely function. Sam has been in the NICU for three weeks. We are living in a half finished house because nothing in our lives went according to plan in the last month. Our days are spent telling each other that everything is going to be ok. Pretty soon they will figure out what is wrong with Sam and no matter what it is we will deal with it and move on with our lives. Just one more test. They should have an answer in just a few more days.

A few more days turn into weeks and we find ourselves now looking back at what our life was like two months ago. Things should have been better by now, but instead they are worse. No matter how hard they try, they have not been able to get to the bottom of what is wrong with Sam. Sam has moved to a bigger hospital, further away from home. Now our family seems even more broken, Ryan lives at the Ronald McDonald house a few days a week, spends a few days with Grandma and Gramps, and a few days a week at home with Dad. We are no close to an answer about Sam, we watch him with sadness every day. Although we don't vocalize it, we have given up hope and are certain that he is not going to survive long enough for them to ever figure out what is wrong with him. We cannot bring ourselves to unpack anything for his room at home. We both begin to worry about the other mental health. The doctors tell us that they should have a better idea of what is going on and may be close to a diagnosis in a few days. I think that we have heard this one somewhere before.

One month ago we found ourselves in a very scary place. Sam had been diagnosed almost two weeks prior and we were going home. After 3 1/2 years it is hard to remember what is was like to have a baby in the house. We quickly begin to read "What to expect the first year", but quickly realize that it will not be much help to us. We will need to learn as we go, and we have a lot to learn. We don't care though, we are just happy to be going home. We can manage this, it won't be that bad. We get to be a family again.

Like I said earlier, "Some of the days in that month have been very good days. Some of the days in that month have been not quite as good." The past week has been very, very trying.

As we said in our last post, Sam's direct bilirubin took quite a jump in the past week. We knew before the lab results were back that this would be the case, his color has been gradually getting worse. The lack of sleep has begun to catch up with us, we are edgy and cranky at each other, but we get over it quickly. It has helped to have other people to take our frustrations out on in the last several days.

If you have ever had to depend on any government agency for anything, we feel very sorry for you. You wouldn't think that it would be so difficult for someone in Sam's situation to get Medicaid to help with his medical care. Your thinking would be incorrect. When we applied for Medicaid on Sam's behalf we were told that they would let us know as soon as they needed any documentation. They did. We received a letter on June 18th telling us that we had until June 20th to provide documentation of our citizenship and identity, and until June 27th to provide verification of our monthly income. We hand deliver citizenship and identity verification on the 19th. We hand deliver income verification on the 26th. We receive in the mail, on the 26th, a letter dated the 24th saying that our application for Medicare has been denied because of our failure to provide the requested documents. To make a long story short our application was denied because the case worker lost the paperwork on her desk and didn't have time to process any of it when she received it because she is so busy. I am going to try this one at work and see how long I last. This situation has since been resolved only because Deb went down to the local office and pitched a huge angry fit - it is amazing how fast they can locate a missing piece of paper when there is an angry mother and crying baby in your lobby.

Social Security payments are another whole story - at least they haven't lost anything yet, they just move at a pace slower than a turtle - to date (approaching Sam's 4 month birthday) he has received a total of $30 in benefits from the federal government.

In preparation for our journey to Boston, we have had to have medical records from three hospitals and the pediatrician’s office sent to Dr. Puder. This is another one of those things that you wouldn't think would be that difficult, but several phone calls later you would understand that nothing is easy. Three out of four sets of medical records went out on the first request. I would be up all night if I told you about the fourth. Everyone has an excuse for not doing their job. Everyone tells you "I will take care of that right away". Then you find out a few days later that it didn't happen.

We have figured out that the only way to get anything done is to yell and scream. It also helps when you throw in "Your stupidity is causing a delay in getting a life saving treatment for my son" a few times. But it really is a therapeutic way to vent your frustrations out on someone who you don't have to sleep next to every night.
As soon as we get through all of our red tape we will be able to set a date to get out to Boston. If we have any updates later this week, we will be sure to post again and let everyone know.

Friday, June 27, 2008

A special Thank You

A special Thank You to Mickie, Beth, Paula, Katie, Marsha, Norma, and Terry from ATW for sending Ryan and Sam each their own special quilt. They quilts are beautiful and the boys both love them.

Not much has changed in the last few days. Sam has been very grumpy and wants to eat and eat and eat.

We got a little bit of a shock today when we got Sam's labe results back. His direct bilirubin jumped from 2.9 last week to 5.2 this week reafirming that our decision to go to Boston was a good one. We are still awaiting the receipt of all of our medical records in Boston and are still hoping to be out there with in the next few weeks.

Tuesday, June 24, 2008

Red Tape

It has been almost a week since our last post so we just wanted to give everyone a quick review of our last few days. We have heard from several parents of "Omegaven Kids" and, since we have not had a chance to respond to everyone personally, we just wanted to say thank you to those that have taken the time to send us messages to let us know about their experiences in Boston. The opinions of other parents who have been in similar situations and have had to make similar decisions has meant more to us than the opinions of the medical professionals that have been supplying us with medical advice.

We are working through all of the red tape that is needed to get to Boston. So far it has not been too bad, just a lot of information to gather and coordinate. Everything seemed so overwhelming at first, but when you take a step back and let the people that are there to help do their job it is not so bad. We are very lucky in the fact that our health insurance provider uses a third party Coordinated Health Care company which helps greatly when you are trying to get everything together and to the right person at the right time. Sam's trip to Boston will make things a little hectic again for all of us, but hopefully we will see good results in Sam like so many other people have. Jason will be flying out with Deb and Sam for the first few days and then heading back to Wisconsin for work and Ryan duty. Poor Deb will be homesick I am sure. By the time she returns home we will have lived in our house for six months and Deb will be lucky to have been here for 2 months of that time. Eventually we might finish unpacking and actually get some decorating done - by that time it may be Christmas decorating though.

Sam has had several very awake and alert days recently. He loves to smile at his brother. His color has worsened a little over the last few days and we are awaiting his latest round of blood work to see if his bilirubin levels have actually taken a spike in the upward direction. This week will be our first week that we do not have to travel out of town for his weekly doctor visit as we will be visiting our local pediatrician instead.

On Monday Sam weighed 8 pounds 3 ounces! We broke that 8 pound mark for the first time ever, and hopefully we continue to have a modest weight gain.

I have added quite a few pictures to Sam's photo gallery. Just a warning that if you look at the pictures from March 10th they are pretty disturbing. This is the day he was sent home from the birthing center and those pictures were taken just a few hours after we brought him home. It is amazing to see his pictures now and think back to that time when we were not sure if he was even going to survive through each day.

We also added a new guestbook to the journal that is a little more similar to how things were set up on our Caringbridge site. Please take a moment to sign our guestbook when you get a chance.

Thursday, June 19, 2008


Today was overwhelming for us. So much information to process and such tremendous decisions to make for Sam. It is hard enough to make decisions that only impact your own life; but when you have someone else depending on you to wade through the mounds of information, listen to several opinions, and then make a decision that will ultimately affect the quality and length of their life; where do you begin?

Sam needs his TPN (total parenteral nutrition) in order to survive. Without it he would not get the necessary nutrients that his body needs to live and grow. The problem, which is not uncommon for TPN dependent individuals, is that his lifesaving TPN is also damaging his liver. They believe that this may be caused by the Intralipids that are added to his TPN. This is where his fatty acids and a good portion of his calories come from each day. Sam's Direct bilirubin (a product that results from the breakdown of hemoglobin) has been slowly creeping up. On top of this, his liver enzyme reading have been increasing as well. This all means that it appears that Sam has begun to experience some level of damage to his liver, which could be very minor at this point, but it will most likely continue to get worse.

We basically have three options available to us right now:

1) Do nothing. See what happens. Maybe the changes in his levels will stabilize and maybe his liver damage will never become severe. If it does and his liver begins to fail, put him on a transplant list. In defense of the person who presented this option, they were just trying to present all of the options and even they do not think we should go this route.

2) Adjust the makeup of his TPN. They can reduce the amount of intralipids in his TPN and replace the calories he would be missing with extra glucose. This sounds simple. Why don't they just do this with all TPN patients and lessen the risk of liver damage? The problem is that excessive amounts of glucose being pumped directly into a persons blood stream can cause hyperglycemia. Let's fix one problem and create another whole set of problems while we are at it. (No anger there, just pointing out what we thought was an obvious flaw in that plan).

3) Adjust the makeup of his TPN. Reduce the amount of intralipids that he receives and replace the calories with a amino acid derived from fish oil called Omegaven. WHile this method is not FDA approved, it has been widely used in Europe, and there are patients receiving Omegaven in the US. So far there have been no reports of any sever adverse reactions to this treatment and in some cases it has corrected some of the decreased liver function that was caused by the Intralipids.

Can we get Omegaven here? The answer was - shockingly - yes. They can have it here and the protocol set up and get FDA approval to administer it to Sam in Milwaukee in 6 to 8 weeks. This was amazing news, we thought we were going to have to go all the way to Boston. Oh wait, there is a catch. Children's Hospital of Wisconsin will only bring in Omegaven if our health insurance will cover this non FDA approved treatment that is considered investigational. They will not be able to fund this for us because if they did it for him, they would have to do it for everyone, and that would be too expensive. Although disappointing, we can certainly understand this, this treatment is not cheap. You will be shocked, I am sure, to learn that our health insurance company will not, in fact, cover a treatment that is not currently approved by the FDA and is considered investigational.

So it appears that will be be making that trip to Boston after all. Dr. Puder's group at Children's Hospital of Boston has the ability to use this treatment and cover it's cost if that is needed. Unfortunately we were also informed by our insurance company that they also will not cover his hospital stay, doctor visits, lab work, etc... if we choose to go to Boston. Apparently it would be more beneficial for them to pay for the liver transplant in a few years and all of the necessary treatment that would entail - even if that cost would be much greater than what we are asking them to do.

It is time for all of us to get some rest after a busy day. I hope we sleep soundly tonight, knowing that we are making the best choices that we possibly can each and every day for Sam.

Tuesday, June 17, 2008

Journal Updates

We just wanted to let everyone know that we finished moving over all of the information from our Caringbridge site today. This means that if you were subscribed to get journal update notifications from Caringbridge, you will now get them from our website as well. To be removed from that list, you just need to reply to the update notification and you will be removed.

If you are not on the update notification list and want to be, simply use the "contact us" page and write "subscribe to journal" in the message.

We do not have any other news for the day. We will be meeting with Dr. Guhday on Thursday and I am sure we will have several update after that appointment.

Sunday, June 15, 2008

Rain and rain and more rain...

We often forget that there are people from all over the country who keep up with Sam's progress; the first part of this entry is for you. We received an email today from someone asking how we were coping with all of the wicked weather we have had and if we had been affected at all by the flooding here.

We have been pretty lucky here. It has been a rough week with Ryan cooped up in the house a lot, and we did get a lot of rain, and everything is mud. We did not get quite as much rain as areas about 20 miles to our South. In Oshkosh at one point over 75% of the roads in the city were under water. My home town of Fond du Lac, about 45 miles south of us, was hit pretty hard by the floods and there are a lot of areas that were affected by flooding. The pictures of the parking lot where my old high school used to be were just incredible. Both of my parents had to deal with flooding at their workplaces and things were pretty messy for them. My mother’s car fell victim to the flood waters and is still sitting in the parking lot where she works, waiting to be towed, like many other vehicles around the city.

On the Sam front, we are doing about the same. We have a routine down for what Sam needs and when. Today we made a trip to grandma’s house and were actually gone from home for over 8 hours. We were a little nervous about traveling that far with Sam for that length of time, but everything went well. It was a little bit of work to make sure that we had everything that we needed for the entire day, but we managed to get through it without any yelling.

We had mentioned the possibility of traveling to Boston in our last post. On that front we have made some decisions and are beginning to make some plans.

Sam's direct bilirubin level hit 2.9 early last week. While there are many TPN dependent children out there with higher levels than that, this still is not good. This is an early indication that Sam will most likely not be one of those miracle people whose liver will tolerate the lipids contained in his TPN without any issue. Sam is very slowly becoming more and more jaundiced, but the changes are subtle and he doesn't look too bad. We have seen a few pictures of babies who were almost orange. They can reduce the intralipids in his TPN, but then of course his growth will slow down and reducing this too low could actually cause him to be malnourished. Without some way to compensate for this there would be very little hope for Sam.

Omegaven is derived from fish oil and is widely used in Europe in TPN as a replacement for intralipids. It is not yet approved for clinical use in the United States. We are still working on trying to get our doctor here to get approval from the FDA to use Omegaven as then we may be able to at least have our follow up visits occur in Wisconsin sometime in the near future. Sam cannot wait that long for Omegaven, so we need to go right to the source and to the expert regarding this. This will mean that Sam will need to go to Children’s Hospital in Boston for an extended length of time. Starting the Omegaven will mean an initial 48 hour stay at the hospital for him, and then he will need to stay locally until his direct bilirubin falls below 2 and the rest of his lab work looks good. This will most likely mean a stay of 1 to 2 months in the Boston area. Unfortunately it also means returning to Boston every 2 months for follow up visits until we can get someone locally to handle Omegaven.

We are still in the planning stages for this next step and are working on trying to get assistance for the travel expenses that we will need to incur to make this happen. Deb and Sam will be heading to Boston for the duration of his visit, while Jason and Ryan wait at home again for Sam to come home. The good news is that with this complication out of the way, Sam's future looks a little more promising and a tiny bit less complicated if we can remove the risk of liver problems with this treatment.