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 Children̢۪s 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.