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 everyone̢۪s 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 doctors̢۪ 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.