Friday, December 25, 2009

Merry Christmas

It was pointed out to me today that we have not updated Sam's journal in over a month.  I am not sure where the last month went, but I do vaguely recall this blur of business occurring recently.

Sam is doing well.  He is still developing on track and is happy most of the time.  We are working on talking, and aren't making much progress, but it will come eventually.

If you have seen the pictures we posted in November, Sam has been enjoying joining us at the dinner table each night.  He still will not swallow food, but he is showing interest in tasting new things and drinking.  Big steps for him.  He also enjoys chewing on his father, mother, and brother.

It is amazing to watch Sam and Ryan play together. Anything that Ryan has, Sam wants, and you can tell by the way Sam watches him that he is trying to mimic everything Ryan does.

Sam has also developed a talent for temper tantrums.  He is very stubborn and likes to get his own way.  This, of course, has nothing to do with the fact that we spoil him rotten most days.

 It is amazing to think back to just 19 months ago when we were preparing to take Sam home for the first time.  We were told he would most likely not make it to age two, and we honestly thought he was  not going to be around for his first Christmas let alone his second.  The holiday season has kind of flown right past this year.  We are very fortunate to have Sam at home this year, healthy, doing normal little boy things, beating up his brother.  Sam showed very little interest in presents this year, but I think he had a good time today all in all.  We spent a little time chatting with Santa the other day, Sam wasn't into that much either, but no screaming or crying.  He just didn't care.

About eight hours from now we will be attempting a first for Sam.  We are traveling, by car, many miles.  It will be the first time that we have EVER been more than a few hours from one of the three hospitals that treat Sam.  It will be the first time that we will be more that a phone call away for medical supplies.  I am terrified.  After carefully going over everything we need to manage Sam's care for eight days away from home, rechecking the boxes of supplies three times, and trying to fit all of this stuff into the van, we are as ready as we can be.  This isn't like going to Boston or Chicago.   We will be in Georgia, where I am willing to bet not one doctor we would encounter (if needed) will have ever heard of Microvillus Inclusion Disease or Omegaven.  Our plan includes a smooth car trip, smooth visit to Oma and Opa, a smooth trip to Michigan to see Bo, Jose, and Kinn and then a smooth trip home.

Once home we will be busily planning for our next big event.  Save the date for Saturday, March 6th 2010.  Sam is turing TWO and we will be celebrating with another big party this year.

Amazing how your vision life and living can change so much in just two short years.

Wednesday, November 18, 2009

Long Overdue Update

We have managed to stay infection free for two months. Hopefully our bad spell from the summer is really over and we won't have to worry about replacing his line for years to come.

Sam continues to be healthy and happy. He is growing up way too fast. He has been quite the bundle of energy lately and is in a new phase where he can't sit still. Ever. Not even for one minute. He is continuing to hit developmental milestones and has been steadily gaining weight.

Sam and Deb traveled to Boston last week for a check up and everything looks good. His anemia has improved and all of his lab work looked great.  The first uneventful trip to Boston in six months.

Sam's wavy/curly hair finally got to me enough this week that we finally cut all of the crazy baby hair off. He has had a few trims over the last year, but this time we went a little shorter. You can check out Sam's new haircut on our new photo page. I have been busy uploading about 3300 pictures from the last 6 years and have expanded the photo page on Sam's site to include almost all of our family pictures since Deb and I were married. Enjoy!

Tuesday, November 10, 2009

Celebrating Gavin's Life

Many of you that follow Sam have also been following Gavin Owens and will know that Gavin received his wings Sunday evening.  Gavin's parents said it best and I am going to post their last journal entry below:

"Is it really possible to be healed without actually receiving what most would consider a physical healing?  I think so.  Yesterday at 10:42pm Adam and I witnessed first hand the total healing of our little boy.  While snuggled up with Mommie and Daddy Gavin slowed his breathing and his little heart stopped beating -- his body found complete and total healing.

Gavin's death was one filled with so much sorrow and hurt yet so much peace and joy flowed freely in that room.  Our little boy is healed.  Our hearts are hurting so bad and will forever miss our little fighter yet the sense of peace that flows is so beautiful and indescribable.

You have no need to fight anymore my sweet little boy"

We found Gavin's website shorty before Sam was diagnosed with Microvillus Inclusion Disease and we have been following him ever since.  We have found strength in Adam and Karen, more strength than I ever would have imagined to be humanly possible.  No matter how sick Gavin was, he lived life.  His parents packed up Gavin and all of his equipment and gave him a chance to experience so much in his short three years. They are inspiration to parents with medically fragile children everywhere.

One of the things that always amazed me about Gavin was his incredible smile.  It was always a joy to check Gavin's website and see a new picture of that bright, smiling face looking back at me.  His face and his story are not one that I will ever forget.

Friday, November 6, 2009

A Sad Day

Our friend Gavin is in his final hours.  His amazing parents have worked very hard the last three years to give him as many experiences as they possibly could and they are now preparing to say goodbye.

Please take a moment today to leave a message for him and his family at his website www.gavinowens.com .

Saturday, October 24, 2009

Gavin Owens

We are asking everyone to keep Gavin and his family in their thoughts and prayers this weekend.  Gavin's parents have had to make some very tough decisions this week regarding Gavin and no parent should ever have to go through having to make these decisions for their child.  Please visit Gavin and his family at the link below and, if you have a moment, leave them a message to let them know you are thinking of them.

www.gavinowens.com

 

Sam appears to be getting over his pneumonia and we have all been feeling much better the last few days.  Still some lingering coughs and runny noses, but we will take those over the miserable flu that we dealt with.  I promise, new pictures are coming soon.

Monday, October 19, 2009

H1N1 Nightmare

This all started 10 days ago when Ryan came down with a fever about an hour after the last of our guests left.  Like dominoes, almost everyone that was at our house that day has fallen ill.  Because H1N1 testing is so expensive, everyone except Ryan is a "suspected" case, but Ryan got tested because of Sam, even though it was really too late to do anything about it by that point.  Ryan was positive for the H1N1 flu virus, so there is little doubt that the rest of the "suspected" cases are really not all that suspicious.

Fast forward 10 days.  Sam never really got that sick.  Deb and I have been toying with illness off and on, everything seemed to be going in the right direction.  There has been a lot of talk about the H1N1 virus and how it is so dangerous because it appears to be having a huge impact on peoples lungs and there have been a high number of cases of "post H1N1 pneumonia" in children.  It seems to be particularily dangerous as it is hard to fight off.

As of tonight, Sam and one of the other children that was at our house 10 days ago have come down with pneumonia.  Another is is the ER as I am writing this.  We caught Sam's really early but we wil need to watch him carefully to make sure that things don't change for the worse.  From what we are hearing, when it changes for the worst it changes fast.  For someone like Sam who has already been through so much this is just not what he needs right now.

Sam is sleeping peacefully now, pumped full of IV antibiotics, hopefully the morning will bring lungs that sound the same or better - not worse.  Tomorrow I will update again, and include the story of the worst ER visit imaginable.  Stay Tuned.

Friday, October 16, 2009

Lack of Updates

We intended to get a post done shortly after Ryan's party, but we have had a few things go on that have just sucked up our time.

First the company that hosts our website upgraded the software we use for our journal and guestbook.  That inadvertently caused several hours of work to get the past entries back.  They have been restored, but I still need to go through the old journal entries and upload all of the pictures again.

On top of that we have been dealing with illness after illness in our house since Ryan's party.  We started with colds, but last Saturday Ryan developed a fever, sore throat, cough, etc...   Fortunately we no longer have to worry about having Sam and Ryan vaccinated for the H1N1 flu virus because we have been dealing with the real virus all week.  Ryan was affected the worst.  He seems to be doing better.  Sam and Jason have had mild symptoms that have come and gone and come and gone throughout the week.  We are keeping a close eye on Sam to make sure he does not develop pneumonia.

Once we are all feeling better and we get the pictures loaded back to the journal we will get some new pictures and updates about Sam and what he has been up to.  For now this short update is all we can provide as my nice warm bed is calling me, where I plan to be for at least the next 10 hours.

Tuesday, September 29, 2009

What a week...

Since our last post things have been... crazy.

The skin on Sam's chest began to break down shortly after his surgery to place his new central line in Boston. It became so irritated that Sam did everything he could to scratch at it and we did everything we could to keep him away from it.

Sam won most of those battles and we lost several dressings. There is nothing more terrifying than going to get Sam out of bed and realizing that most of what was a sterile dressing is now laying in the crib. We have changed some of the products that we use for dressing his insertion site and made progress in healing the last few days. Now if we can just stay infection free we should be all set for a few years.

On top of all of the dressing issues, I was sick all of last week (PS getting tested for the flu is NOT pleasant). Lot's of crud going around. I think after the party this weekend we will be going into winter mode. We are headed to the Building For Kids to celebrate Ryan's 5th Birthday a little late on Saturday. The last time Sam was there was right before we went to Boston for the first time. He slept in his stroller almost the entire day. I have a feeling we are in for a long day of trying to keep up with him this time. Have we mentioned that he is running now???

We will get some pictures, maybe video from the party posted as soon as we can.

Sunday, September 20, 2009

Home

Sam and I arrived home Friday afternoon. The return trip was fairly uneventful.

Other than the issues that we continue to have with Sam's central line, he is doing very well. We managed to move into the 10th percentile for weight this trip, we were not even on the chart four months ago. The only area that Sam is still really behind in is speech. We are not concerned about this right now as we are still trying to get over him walking and running.

I don't want to say too much about the central line, but so far it looks good. It is very concerning to all involved that the old line site had never healed since it's insertion in July, but I don't want to think about that now.

Since the weather is getting colder and flu season is upon us we will be a lot less busy and we will be spending much more time at home. We will try to be better about updating more often and getting some pictures out here every week.

Thursday, September 17, 2009

(Almost) Homeward Bound

We managed to make it into surgery this afternoon at 3:00. We didn't make it back to our room unitl 8:00. Too late in the day for discharge tonight, so we are planning an early morning escape and then dashing to the airport for our 11:20 flight.

Our surgery was much longer than it should have been. Sam has developed some narrowing in his veins (scar tissue) from the previous lines that he has had and they had a very difficult placing the new line.

On the bright side, we hated the placement of the line that was just removed and the new one is in a much better place. We also went up a size and does not have the skinny, easily broken part (TPN parents will understand). The new line was also placed deeper to allow for Sam to grow for a few years without the need for another new line as long as we can stay infection free.

Once we are home I will update with new pictures and more seatil about the last month.

In Boston

I had planned to do a rather long update with a lot of pictures form the last month while I was in Boston. We have been very busy and Sam got to go to "The Little Farmer", Bay Beach Amusement Park, and we actually managed to make it camping for a weekend.

Unfortunately, the connection speed at the hospital is way too slow for me to upload pictures. Yes, you heard that right, we are in the hospital. Sam was admitted yesterday afternoon to Children's Hospital Boston.

His central line site has never really healed since it's insertion in July. It has been infection free, but yesterday started to become inflamed and there was some discharge. We decided that while we were here we would have this taken care of. We are an add on for today’s surgery schedule. It is almost 12:30 and we have not been called yet. Things are not looking good for our 11:00 flight back to Wisconsin tomorrow.

Wednesday, August 19, 2009

Still Home

We are still at home, waiting for Sam's site to heal. The late night /early morning antibiotic infusions are making for a long week, as are the daily dressing changes needed to monitor and keep Sam's site clean. Yesterday we saw a little improvement in the redness around the site. Today the site looked about the same as yesterday, but I accidentally created a new problem.

When Sam was younger we used to clean the area around his site with chlorhexidine. While Sam was in Boston initially he developed a sensitivity to the chlorhexidine and we stopped using it and switched to using Povidone-iodine. Becuase we have been battling so many site infections we started scrubbing Sam's line with chlorhexidine as the reports say that it is more effective on plastic than Povidone-iodine.

Yesterday while doing his dressing change I thought we would try chlorhexidine again. Bad move. We are down dealing with blisters all over the area around Sam's site. Another thing to keep clean and to watch.

Other than that Sam is still doing well and we are still hopeful that we are going to beat this infection and save his central line.

I also wanted to share an article from the from the London Free Press in Canada about Hunter. I mentioned Hunter a few months ago as his family contacted us when he was diagnosed with Microvillus Inclusion Disease. A link to the article is below:

http://www.lfpress.ca/newsstand/News/Local/2009/08/14/10457921-sun.html

That's all for tonight. We will keep watching Sam's site and will post again if there are any changes over the next few days. I guess this officially puts an end to our planned camping trip this weekend. I am starting to think that Sam may never get to go camping with us...

Monday, August 17, 2009

Home Again

We have been successfully discharged from the hospital and are back home. Sam looked very relieved to see his own bed tonight.

The strain of staph that Sam has this time is not the same as the last two infections which is very good news. This, with the addition of E-Coli growing on the site, indicates that the infection most likely came from the day that sam ripped off his dressing and pulled his line. With three site infections in the last three months we are adding another step to Sam's dressing change routine to hopefully help eliminate any bugs from sticking to his line.

We will be watching his site for any signs of changes over the next few days, with any luck the antibiotics will do their thing and we can get rid of the infection and save the line. If the infection moves up his tunnel or doesn't clear up in the next few days then we will be readmitted to Milwaukee to have the line pulled.

Sunday, August 16, 2009

Sunday Update

Bad News - The culture from Sam's insertion site has grown out both Staph and E-Coli.

Good News - No growth in his blood cultures.

The Plan - As long as the Staph does not turn out to be a resistant strain, we are going to attempt to save his line and treat through with antibiotics. The infection has not moved up the tunnel of his line yet so we are hoping that we caught this ealry enough. If the infection moves or the staph is resistant to antibiotics we will move Sam to Milwaukee and oull the line.

Saturday, August 15, 2009

You have got to be kidding...

I felt this way several times this week.

On Wednesday I walked into work after being outside for 10 minutes. I was greeted by the receptionist who told me that Deb was trying to get a hold of me and that I needed to call home right away.

Sam decided to remove his dressing and tried to tug out his central line after his nap. A quick trip to the ER confirmed that his line placement was still OK.

Thursday arrived along with a nasty head cold for Sam and for Myself. I started to feel better by Friday and Sam appeared to be feeling better as well. Then he woke up this morning screaming and tugging at his ear.So we rushed into this clinic to have his ears checked. No ear infection - most likely the fact that his molars are coming in that is causing the screaming.

Unfortunately as I was getting Sam undressed at the clinic I noticed that there was discharge around his central line site - AGAIN - so we are now inpatient - AGAIN- so we can start IV antibiotics -AGAIN- and hopefully be able to save this line. If we have to pull this line it will be the third in less than 3 months. I am so frustrated with the whole situation as there really isn't much more we can do to try to prevent these infections, but we can't continue to have new lines put in every few weeks.

I will update more as soon as we have any new information. It is way past time for Sam's nap and he really needs to sleep.

Sunday, August 2, 2009

The Difference A Year Can Make

A year ago today we landed in Boston for the first time. What a crazy whirlwind of a day that was. Looking back it is hard to believe that at that time that Sam would be such a happy healthy boy.

And even though we commented yesterday about it being a nightmare that Sam is walking, we are thrilled at the same time. This is a huge milestone for him and he gets so excited when he walks. Just another thing that he can finally do that he sees his big brother do. Today, however, he was a little frustrated when he couldn't figure out how to climb the wrong way up the slide like Ryan did.

So, what else have we been up to while we aren't at a docotors visit, or in the hospital, or flying to Boston??? We have commented a few times about working on the house. Last March, right before Sam was born a month early, we found this abandoned, forclosed eyesore that we couldn't resist. At that time we had no idea, of course, what the next year was to bring or we may not have taken on this challenge. The last couple months have been spent renovating the outside of the house and putting in lanscaping. Yet another example of the difference a year can make.

Saturday, August 1, 2009

Is This Nightmare Over?

It just might be. After spending 19 out of the last 43 days inpatient on three different occasions, in three different hospitals, we are ready for another long break from seeing the inside of a hospital room.

On June 18th, when we were first admitted in Milwaukee for a site infection, we had made it 263 days without an inpatient stay. Sam still had his original line that was place in May of 2008 and lasted 399 days. To be honest we were very lucky to have gone that long without an inpatient stay.

When we were discharged from Milwaukee we had voiced a concern that we didn't think that his course of antibiotics was long enough and we were nervous that we had not waited long enough before placing his new line. Everything seemed fine until the day after our clinic visit in Boston when Sam developed a fever of 103.2. Sam was admitted to start antibiotics and have blood cultures done.

Sam's cultures came back positive for the same strain of staph that was growing in his site just a few weeks earlier when we had his line pulled and replaced in a new site. Two days later I did a dressing change and could see that his site was infected as well. After talking with Dr. Puder we were in agreement that we really needed to pull this brand new line as we wanted to prevent a recurring issue with staph sticking to the cuff around his line. His line was pulled and then Dr. Puder left for vacation. As we have always received excellent care in Boston we were not concerned. Unfortunately this is when our inpatient stay in Boston turned into an absolute nightmare.

Sam's line was pulled on Monday morning. Sam spent the next 6 days without TPN. Because the concentration of Sam's TPN requires it to be delivered via a central line and he was living with peripheral IV access only that meant no nutrition for that entire time. In contrast, Milwaukee ran a "light" version of Sam's TPN while we were inpatient to keep him nourished. Deb had questioned this several times several times throughout the week but was blown off and never got any real answers. On top of that he became dehydrated as they were not putting anywhere near enough fluid into him. They realized this on Wednesday night. This delayed our new line placement to Friday afternoon instead of Thursday morning. Deb asked several times a day, every day, if the plan was to still discharge Sam on Saturday morning and every time the answer was yet, even at 8:30 PM Friday night when she left the hospital to head back to the hotel for the night.

On Saturday morning Deb arrived at the hospital. Sam's nurse came in and said to Deb "So you’re going home today!". So far so good. Then the resident came in and started talking to Deb about how critical Sam's labs were and how it would take a few more days for things to balance out before Sam could be discharged. What? Up to this point nobody had ever mentioned "critical" labs and not one person mentioned staying inpatient longer than Saturday.

The resident then started asking Deb "Who told you that you would be able to leave today?". "Everyone" was Deb's answer. The resident couldn't believe that anyone told Deb that they would be leaving and was obnoxious towards her. Deb demanded to talk to Dr. Puder. She told them that if he agreed that they needed to stay, they would. Since Dr. Puder was on vacation Deb was told that it may be tough for them to reach him. For anyone reading this who knows Dr. Puder, you will know firsthand that he is quite possibly the most accessible doctor in the world so this did not sit well with Deb.

An hour later Deb was told that they had been trying to reach Dr. Puder but were not able to. At this point it was already 10:30 and she needed to leave the hospital by 11:00 to make her flight. She told the nurse (as the resident refused to come into Sam's room or speak to Deb anymore) that unless she heard from Dr. Puder by 11:00, she was leaving against orders and would have him admitted in Appleton if needed. Amazingly enough they then managed to reach him and he gave the go ahead for us to head back to Appleton. When Sam got back here he looked terrible. We started his TPN right away and went up to a 20 hour cycle (we were down to 14 hours a day). We hoped this would help him return to normal. We were also running extra fluids throughout the day to try to get his hydration level back up.

Sunday morning I talked to Dr. Puder and found out that the resident had lied to Deb and in fact never attempted to get hold of him until Deb threatened to leave at 10:30.

By Monday Sam was looking worse rather than better despite our best efforts to keep him hydrated. By Tuesday he was sleeping most of the day and was very crabby when he was awake so we headed to the hospital for yet another admission.

Basically Sam was so malnourished and dehydrated that his body just could not stabilize itself. He had lost almost 7% of his body weight. His blood sugar and electrolytes were all over the place and it took a week of extra fluid and careful monitoring to get him back to his normal self. We are back down to having a 16 hour TPN cycle and we have increased his daily fluid intake greatly. He has gained back the weight he had lost plus some and is now over 20 pounds for the first time ever.

So now we are ready for this nightmare to be over and for our next nightmare to begin. Sam has started to walk...

Monday, July 27, 2009

Home

Sam was discharged on Sunday and we are all back home. Sam is doing well and we are almost back to normal. I will post more details about what has transpired over the last few weeks later this week.

Wednesday, July 22, 2009

Still No Answers

Sam is still looking pretty ragged, but no definate answers as of yet. All of his labs continue to look good. They have made some adjustments to his TPN to help balance out anything that was not up to par and he continues to receive additional fluid.

Ryan and I are headed to the campground as we need to try to keep our promises to Ryan. Deb and Sam may join us for a day over the weekend if he is discharged and looking better.

I don't think Deb will remember how to post on here, so please don't panic if there are no updates until Sunday.

Tuesday, July 21, 2009

Readmitted

Sam still has not receovered from our inpatient stay in Boston last week. He is still struggling to stay hydrated and in general is not feeling or looking well. We had labs pulled this morning and the labs do not look too bad, but they are not matching up with what we are seeing. His mouth and lips are very dry and he is very pale. I don't remember seeing his energy levels this low since we started Omegaven almost a year ago. Due to this he was admitted tonight to Children's Hosital of Wisconsin in Appleton.

They are hoping that a few more rounds of additional fluid, on top of the extra fluid we have been giving him at home, will perk him back up and this will turn out to be nothing. They will be running additional labs in the morning and if anything shows up we will post more information.

Unfortunately this had put an end to yet another family vacation. Ryan and I may still head up to the campground at somepoint this week but camping is definately not in Sam's immediate future.

Sunday, July 19, 2009

Home

Sam is home.

This past week has been an adventure. Not in a good way. This was quite possibly the most screwed up hospital stay we have ever had anywhere, right up until the moment Deb walked out the door with Sam. In fact it continued into this morning when I went to Walgreens to pick up a prescrition for Sam and was questioned for 15 minutes as to where I got this fraudulent prescription that nobody in Boston knew anything about.

I am still far too angry to actually post about the events of the past week ina rational manner, so I will delay all of the details until I have gathered my thoughts and calmed down a bit.

Friday, July 17, 2009

Our Boston "Vacation"

Sam was finally able to have a new central line placed this evening. The surgery went well and he is doing fine. The plan is to discharge him from the hospital Saturday morning and head straight for the airport and for Deb and Sam to get out of Boston before anything else can go wrong.

We originally had planned on spending time seeing the sights during this trip to Boston. Although things did not work out as planned, we did alternate days at the hospital. The parent who was not at the hospital still got to go out for the day with Ryan and go on a few adventures. Unfortunately, our camera was in Sam's diaper bag at the hospital and we kept forgetting to grab it until the last day. Deb and Ryan went to the New England Aquarium on Friday and spent some time at the Boston Common. On Saturday I took Ryan back to the common (we were supposed to go to the Children’s Museum but we had an attitude problem that morning). We spent almost the entire day there playing and walking, we couldn’t' have asked for a more perfect day.

Deb and Ryan chilled at the hotel and spent some time at a playground near the hotel on Sunday as Ryan was starting to get worn out from all of the walking.

On Monday Ryan and I headed to Boston Harbor. We spent some time walking around the harbor and looked at the boats. It was another beautiful day so Ryan got to play in the fountain. He begged all morning to go on a boat ride. In my mind I was picturing a nice relaxing cruise around the harbor. Ryan, of course, picked CODZILLA. A speedboat thrill ride. He was by far the youngest on the boat and before we left the dock I took a look around and wondered if other people on the boat we looking at us and thinking that I was crazy to have this little kid on this boat. It actually turned out to be a lot of fun, Ryan wanted to do it twice, but at $25 a piece that was not in my plan for the day.

Ryan's favorite part of the whole trip though was riding the subway. I guess at $1.70 I could have save a lot of money if we had just stayed on the train all day long.

With any luck the next time we post Sam will be home with another brand new, fully intact, infection free line.

Next week we are headed for another adventure. Our family has always camped in the summer. Last year I took Ryan and Deb stayed home with Sam. He was far too sick to camp last year at this time. This year we are attempting something that will probably make Sam's doctors (and several TPN kid's parents) cringe if the ever find out. The entire family will be tent camping for 4 night with no electricity and no running water. This is how we always camp, just never with a TPN dependent baby before. If we survive this, we can survive anything.

Thursday, July 16, 2009

Will this week ever end?

Last night everything looked good for surgery this morning to place a new central line. The plan was to discharge Sam Friday and have Deb and Sam fly home Saturday. Feeling confident that everything would go as planned I booked a ticket for their return flight and went to bed.

My night did not go well as Ryan was up all night coughing and generally miserable. By this morning it was obvious that something more than a cold was going on. It turns out that Ryan has croup and an ear infection. As much as I love spending time with Ryan, I really was not planning on taking yet another day off of work today.

During all of this they pulled labs on Sam in preparation for surgery and found that he is dehydrated. No surgery this morning. Later labs showed improvement but not enough to get him on the surgery schedule this afternoon. Hopefully they will be able to get him in overnight or early tomorrow morning which will be our last chance to still get a discharge late in the day on Friday.

Tuesday, July 14, 2009

Home

Well, at least for Ryan and I. Deb and Sam are still in Boston for the time being, but they are hoping to be home at some point in the next week. We flew home this morning and found that all of our pets survived the week. This includes the neighborhood rabbits who apparently ate well while we were gone.

Sam's central line was removed Monday morning. We are tentatively scheduled to have a new line placed on Thursday, but we are pushing the hospital to be over cautious as we want to make sure that his body is completely clear of this infection. We do not want to do this again in another few weeks. He is doing well otherwise, but very bored being stuck at the hospital.

We will try to update as things progress this week.

Sunday, July 12, 2009

Good News / Bad News

The good news is that the weather has been beautiful in Boston and Ryan got to do some sight seeing. He was most excited about riding the train. We probably could have just done that all day and he would have been happy.

That's it for the good news.

The bad news is that Sam's infection spread to his insertion site. Due to this the decision was made to remove his line. The infection is the exact same strain of staph that he just got over from his last site infection and they are worried that even if we get the infection to clear the line, it will most likely hang out in his site and cause more problems in the near future. As I write this we are waiting for a slot to open up in the OR schedule so he can go have his central line removed. We will then need to have two cultures come back negative for 48 hours before a new line can be placed.

In other words, Sam will probably be inpatient until Thursday - but I think every time I update the site we add another day so really we have no idea when he will be leaving. Jason and Ryan will be headed back to Wisconsin on Tuesday and Deb will stay out in Boston until Sam is discharged.

Rearranging our return flights was a total nightmare and I won't even go into that other than to say we will never fly United ever again. I would gladly pay twice as much to fly another airline rather than ever book another flight on United. We normally fly Midwest, and at least they were nice enough to give me a little bit of a discount to book new flights back to Wisconsin when I explained the situation to them.

Saturday, July 11, 2009

Positive

We received word this morning that the blood cultures from yesterday are positive for infection and we are awaiting word on the identification of what exactly is growing in his blood. Sam's fever still has not broken, which is unusual for him. He is in a pretty good mood this morning.

We were informed this morning that Sam will not be discharged until Tuesday or Wednesday at the earliest. We will need to wait for 2 cultures to come back negative after 48 hours and we all know that today's culture is still going to be positive as Sam's fever is still raging. Here's hoping that this fever breaks and the antibiotics start doing there thing so he can get out of the hospital on Tuesday.

Unfortunately we were scheduled to fly out of Boston on Monday. We will have to make some decisions tomorrow and determine exactly who will fly home when and try to work with the airline to get this worked out.

Friday, July 10, 2009

Guess where we are???

Well, I completely forgot to post when we were discharged from Milwaukee. Everything went well and we have a quiet few weeks at home.

This week was our clinic visit in Boston so the whole family packed up and flew out so we could spend some time as a family in Boston. Sam's clinic visit went well yesterday and everything looks good. Ryan is so excited to be staying in a Hotel and is even more excited at all of the plans that we have - (Well we HAD)…

Unfortunately, Sam had other plans on how we would be spending our free time. We are currently sitting in the ER in Children's Hospital Boston and will be admitted to the hospital for a minimum of 48 hours as Sam woke up with a 103.2 fever this morning. Looks like the culprit is either another site infection or a line infection, but we will know more once cultures are back.

Monday, June 22, 2009

In With The New

Sam's new line is in an the surgery went well. We are out of recovery and awaiting the final word on when we get get out of here.

In Surgery

Just a quick update, Sam is in surgery now to have his new line placed. The procedure should be about 45 minutes and then I can start trying to talk them into letting us out of here today. If not today, tomorrow for sure. I hope.

Sunday, June 21, 2009

Father's Day At The Inn

We are still impatient in Milwaukee, Sam's line placement surgery is scheduled for tomorrow. We are still hoping for a Monday discharge, but Tuesday is looking more likely. Sam is doing very well and his old site is looking better every day. We will be continuing IV antibiotics at home just to make sure we get rid of this infection. The infection on Sam's chest and around his tunneled line was identified as Staph. Cultures from his blood still have no growth so it still looks as though we avoided an infection in his bloodstream. He is obviously feeling great and although we try to keep him busy throughout the day he is still sick of being here. Having one arm disabled (to help secure a temporary IV in his hand until we have his new line placed) limits what he can do as crawling and walking are both out. Our attempt at letting him walk without one had for support ended with a nice bruise on his forehead.


From time to time we are contacted by parents of other children who are sick through our website. Some of them found our site by chance and want to know more about how to get Omegaven. Over the last year I have fielded quite a few of these emails and explain what we have gone through to get Omegaven. In every case so far, none of these parents has made it out to Boston or been able to get Omegaven at home. Most of the time I do not hear from these parents for a long time and then I get an email explaining that their child has passed away or their health is failing and death seems imminent. Another parent had opted for a transplant and their child passed away due to complications of the transplant. Getting these messages has been very hard to handle, so much so that I have often thought about not responding to the inquiries any more. But there is always the thought in the back of my mind that one of these times it may make the difference between life and death for someone, so I continue to respond and offer any help that I can.

Three weeks ago we receive an email from a woman who's son was being treated at Children's Hopsital of Wisconsin - Milwaukee. Her son is seven months old and was showing all the symptoms of having Microvillus Inclusion Disease. A biopsy showed that her son has plenty of villi, they are just shorter than normal. At the point that she contacted us she was extremely frustrated. Her son had started showing signs of TPN Associated Liver Disease a few months ago. She heard many of the same things we did when we were in Milwaukee about a transplant, short life span, etc... She was told that her son would need a liver transplant with a few months.

Someone at the hospital who was familiar with Sam told her that she should visit our website. I am happy to report that her son started receiving Omegaven at Children's Hospital Boston at the end of this past week. Being able to help this one child get to where there was hope and help has made all of those heartbreaking moments almost worthwhile. Just knowing that Sam's site possibly helped to save the life of one other child and helped to spread the word about Omegaven means that others out there will find our site, or others like it, and find hope when they are being handed a lot of gloom and doom.

Friday, June 19, 2009

Friday Update

We had a better night last night as both Sam and I managed to get some sleep. We had a little interruption from 1 AM to 2 AM as it was hard to sleep through the PA announcements every ten minutes announcing "ATTENTION PERSONEL, CODE BLACK, TORNANDO WARNING UNTIL 2:00 AM". What a storm that was. All while being on the 11th floor of a building completely covered in glass.

Sam is in a better mood and obviously feeling better although he is getting very bored. Still no sign of infection in his blood, so we are moving ahead with the plan to insert a new central line. As our luck would have it, we are headed into the weekend. They still may be able to have surgery place a new line on Sunday if there are not many emergencies. More likely the new line will be placed on Monday with a discharge on Monday afternoon or evening or Tuesday morning. Unfortunately this means spending the next three days with Sam feeling very well, but not able to do much.

Thursday, June 18, 2009

The Plan

So far all of Sam's blood cultures have come back negative. No sign of infection in his blood stream is great news. The site where his central line was is still infected and hopefully antibiotics will help clear this up quickly.

As long as all of the cultures continue to come back negative through Saturday the plan is to have a new central line inserted on Sunday. If tere is any sign of infection in his blood this will have to be put off as any infection that is present would attach itself to his new line.

Sam has finally fallen managed to fall asleep. He is very frustrated with not having the use of either of his arms as he has an IV in one arm and the other is wrapped to prevent him from pulling out the IV. He also does not enjoy hospital gowns and has managed to work his way out of it a few times.

Out With The Old

Sam's surgery went well and his central line has been removed. Not much to update yet as I am waiting to hear from GI as to our plan for the next few days. Sounds like we are going to be here through the weekend. Yay.

Admitted

Just a quick note to let everyone know that we were admitted to Children's Hospital in Milwaukee early this morning after spending the night in the ER.

Sam developed an infection in the tissue around his central line. He was just taken back to surgery to have his line removed. We will be here for at least a few days as they would like to get negative cultures before placing a new central line.

I will update more once I have a chance to eat and maybe get a few minutes of sleep. Sam's fear of doctors/nurses/strangers has been a little difficult to work with overnight and this morning, hopefully he will sleep for awhile after the surgery.

Thursday, June 4, 2009

Overdue Update


Almost 15 months old already?

We have been busy, busy, busy. The outside of the house is almost done, we have started the landscaping and have a big mess in the yard. The house has been sucking up our free time lately.



No change in Sam. We had his motility test done which was a complete waste of time. The test is done if you vomit. What was the point of that?

His vomiting continues to be an issue, but has been a little better lately. They are planning on doing an MRI at the end of the month to try to rule out any neurological reasons for the vomiting. We aren't going to wait for that and are starting Sam on the combination of medications that Bo is receiving to see if it helps. If it does we will cancel the MRI as it is really hard on him to have to be put out for another useless test.

We have moved Sam's TPN cycle down to 14 hours which gives him 10 hours a day TPN free. He will now be getting hydration while he is napping. This leaved him connection free for most of his awake time every day.

We spent the past weekend in Chicago with Bo's family. (For those of you who do not know, Bo also has Microvillus Inclusion Disease) It was nice to get away from normal life for a few days and spend a day with another family who has had such similar experiences as we have. They are such a huge help to us and it was good to see them, hopefully we will be able to see them more often in the future.


Jose, Bo, Kinn, Ryan, Deb, and Sam hanging out at the Museum of Science and Industry. Having all boys makes choosing exhibits so much easier. Trains, Trains, Trains...


Kinn, Bo, Deb, and Sam. Not bad for two boys who weren't supposed to live... Amazing what a little love and a lot of Omegaven can do.


Sam didn't really show much interest in Bo, except to use his butt as a pillow.

Monday, May 18, 2009

Back From Boston, More Questions, Few Answers.

Sam and I returned from Boston on Friday, but it has been too hectic for me to sit down at the computer to get a journal entry done until now.

The flights were not as bad as I had imagined they might be. Sam was actually very well behaved and sat well on the plane when he wasn't sleeping. While Sam behaved, it is still not fun to travel with a child who can't seem to stop puking or pooping long enough to make 5 changes of clothes last for a 4 hour trip.

I got to meet with Dr. Puder's team on Wednesday and we discussed Sam and his recent test results along with the recommendations from Milwaukee. Everything seemed to make sense until they saw his vomit. Their opinion is that this is definitely not all coming from his stomach, and they feel that there is intestinal contents backing up into his stomach. This could be the result of a motility issue in his intestines. The other consideration right now is the possibility of bacterial overgrowth in his bowels.

Milwaukee was working under the assumption that the reason for the vomiting was due to the contents of his stomach not draining properly into his intestines. They recommended making the pylorus larger so that things could drain faster. The problem now is that making that opening larger will actually make the vomiting worse if there is indeed fluid backing up from the intestines.

Basically, back to square one.

We have started up an acid inhibitor again which will help protect him from developing ulcers, but it really is not helping with the vomiting. On Friday Sam will travel to Milwaukee again to have a gastric emptying test to determine how long his stomach contents take to drain and then monitor the flow through his intestines. One the results of this test are back, Milwaukee and Boston will put their heads together to try to come up with a plan of what to do next. (I am not holding my breath on that one, trying to coordinate anything between the two teams has been a nightmare in the past.)

On the up side, all of Sam's labs were the best they have ever been, including his liver enzymes. He has been off Protonix for a few weeks and we have reduced the amount of iron he is receiving so we really aren't sure what caused the huge elevation the last few months, but as of right now we are just going to go with it and see what happens. I have also made everyone promise that we are not ever going to make two big changes in medications within the same month ever again so we can avoid these situation where we can't easily determine a cause for lab value changes.

Sam now gets to be IV free for 9 hours a day and we are working to eliminate the extra hydration he receives at night so we will be down to two IV pumps at night. Within a few weeks we will be up to 10 hours a day of free time and then manage hydration with boluses during nap times for the summer or when he is especially active.

Sam continues to hover right around the 5th percentile for weight for age and length for age measurements, but we have jumped up to the 50th percentile on the weight for length chart. He also is continuing to make gains developmentally and is getting closer each month to actually hitting developmental goals at the "proper" age. Not bad considering that there have been times when we were running 4 or more months behind in most areas. Now if we could just get him to eat. And stop vomiting. And to stop ripping off his central line dressing.

Tuesday, May 12, 2009

Off To Boston

Sam and I are off to Boston very early in the morning, but I wanted to do a quick post to let everyone know how our tests went this week.

The main thing we learned from the tests is that Sam does not have Acid Reflux. We were starting to assume this because he has been off of all reflux medication for well over a week and there has been no major change in his vomiting.

The second thing we learned is that Sam's stomach is abnormally small. Again, not shocking since he hasn't had anything in his stomach for the better part of 10 months. This could be part of the cause of his vomiting. Even though his body is producing a normal amount of gastric juices, there just isn't any room for it, and up it comes.

Right in line with the small stomach, his pylorus (the opening from his stomach to his intestines) is very, very small. This could also be the cause of his vomiting because his stomach contents are not able to drain properly.

Once piece of really good news is the there was not an ulcer to be found anywhere in his digestive system. This means that the ulcer he had in his esophagus a year ago has healed and that his vomiting as not caused any new ulcers.

We were presented with a few options from Milwaukee on what they can do to help with this, we will see what Boston has to say and then post more about our options while we try to make a decision.

Tomorrow is going to be a challenge as Sam does not like to be held - he wants to be down on the floor and able to move around. I have a sneaking suspicion that tomorrow is not going to be an enjoyable plane ride.

Wednesday, May 6, 2009

Busy Days

First off we wanted to welcome the newest member of our family, Everett. Everett was born last Friday morning and Ryan was so excited to have a new cousin. Sam, however, could care less...

Other than new members being added to our family, we are headed into a crazy week. Tomorrow (Thursday) Sam will be headed to Milwaukee for his upper GI study. Friday Oma will be arriving for a visit all the way from Georgia. Monday we will head back to Milwaukee for Sam's endoscopy. Wednesday Jason and Sam fly to Boston.

Mixed among all of that we had plumbers at the house today and I can't wait to brush my teeth tonight in a bathroom sink that actually drains after I wash dishes in a sink that actually drains, while doing laundry without the washer backing up all over the floor. While Sam and Jason are in Boston work will begin on our new windows, doors, and siding. Right about the time that is finished we will be headed to Chicago to spend a day with Bo, Jose, and Kinn which will be a nice little break before we start working on finally getting some landscaping done around the house.

Breaking our hearts this week is the fact that Sam is leaving the cuddle stage. He is getting very independent and wants to be down where he can move around, stand, and walk.

I miss my baby already and we are just not prepared for him to be a toddler yet. We missed so much in this first year with Sam being so sick and hospitalized so much. Sam is quickly learning what "no" means although most of the time he just grins at you and keeps doing what he was doing.

Sam's vomiting has still been an issue this week, although not as bad as we feared being off of the reflux meds. Hopefully we can make some progress this week in that respect with the tests in Milwaukee and our trip to Boston.

We will probably not get final results from the upper GI study until Monday, but we will post again as soon as we hear anything.

Tuesday, April 28, 2009

An Enthralling and Informative Visit To Milwaukee

Okay, that is an outright untruth. The latest in a frustrating run of non answers.

The CAIR team in Boston was not willing to change Sam's reflux medication as they wanted him to be seen by someone to ensure there is not more going on than just reflux. Not sure why this came up now since we have been dealing with the vomitting issues since December.

We finally got an appointment with our "local" GI today. After arranging to drop Ryan off at Grandma's and rearranging work schedules for the week we make the two hour drive to Milwaukee, which I just did on Friday.

We left there today more frustrated then when we arrived, no ideas, no answers, nothing. We will be making two more trips to Milwaukee before I leave for Boston on May 13th. They will be performing a Barium Upper GI study one day and then a few days later he will be having a Endoscopy. THese two tests will allow them to take a better look at what is going on in his digestive system. We also need to stop giving him his current reflux medicine so that these tests can be done without any chemical interference. We are in for a long few weeks. If the test show anything is not working correctly it could mean surgery. If the tests show nothing abnormal then we are back to square one, but then they will at least let us try the combination of meds we want.

Through all of this there really has been no change in Sam so we are not overly concerned. He is still gaining weight and growing, getting closer to walking on his own everyday, and generally happy and content most of the time.

Sam's weight has gone up to about 18.5lbs and we have been able to successfully move his "unhooked" time (off of all pumps) to 8 hours a day.

Besides the medical stuff we have been busy, busy, busy. Sam has a new cousin due to arrive any day and his uncle Joe got enganged this past week.

Amanda - there is still time to change your mind, although Ryan is very excited to have you as an aunt.

Tanya - Now that the baby is almost here your stuck with us one way or another for the rest of your life.

I will try to get some new phots and videos uploaded this week and we will update as soon as we get results back from our upcoming tests.

Friday, April 24, 2009

To the ER

I just wanted to let everyone know that we are headed to the ER in Milwaukee. The lumen (end) of Sam's Broviac (Central line that supplies all of his hydration and nutrition) broke off tonight. I will update agtain once we are settled in.

***3:52 A.M. Update***

We are back home! A little cut here, a little splice there, some glue, and a very grumpy Sam made for an interesting evening. The line is repaired and Sam is finally sleeping. Time for Dad to do the same.

Tuesday, April 21, 2009

Grab A Comfortable Chair

This is bound to be a long post. It has actually been coming for awhile, but I needed time to get my thoughts together and have time to sit down and type this all out.

I will start first with an update on Sam. Not much has changed, no decision on what to do about the elevated liver enzymes. We will be finding out if the Protonix was the cause because it has stopped helping Sam's reflux. Over the weekend things progressed quickly from his occasional spit ups to all out, obviously painful, vomiting fits. It is so horrible to watch him go through these that it almost being tears to my eyes each time. By the end of the week we will be switching reflux medications, again, and are actually hoping to use a combination of IV Zantac and Oral Prevacid. We still have to get a doctor to agree to this, but one of them will eventually - we are persistent. This combo is apparently not a standard practice and I could hear the eyebrows raising in Boston today (You know how those crazy parents who think they know everything are). Then we played our Bo card and they seemed to warm to the idea a little. (This is the combination of meds that Bo is currently receiving for his reflux and helped to return some sanity to his parents). We'll see what happens once they get a chance to discuss it tomorrow.

Onto the long part. My rambling thought that have been brewing for awhile. About a year ago we posted the entry below:

"I knew we were headed for bad news when I saw him this morning. His color was terrible, he was very pale, and I could just see that he was not feeling well. His blood gases this morning came back good though and we were hoping that his color just had something to do with the fever he ran yesterday. They also began to have problems maintaining his body temperature today and his temperature kept dropping below normal. Then they did his afternoon blood work.

It turns out that Sam is once again very ill. There was only 12 hours between these two sets of blood work and his blood PH had dropped to 7.20. To give an idea of how drastic this is, a normal blood PH would be 7.41. The last time that they made Sam sick for testing we waited days for his blood PH to drop to 7.28 so they could draw blood while he was in this acidotic state. For him to drop this quickly was devastating for us. To top all of this off his urine output has dropped to almost nothing.

This evening Sam looked possibly the worst we have seen him since the first day that he was admitted to the hospital 40 days ago. Because of the low urine output, they have had to stop administering the antibiotic he was on. Due to his blood PH they have stopped providing the intravenous lipid he was getting as well as removing the simple fat that he was receiving in his diet. Hopefully with these steps Sam will begin to return to normal again on his own. If he doesn’t they will help him along so that he can be “healthy” again and they can determine what our next steps will be."


This was just before we made the decision to move Sam to Milwaukee and a few weeks before his diagnoses. This was one of the episodes that made us think that Sam was never going to make it. If you look back at pictures from that time there is no way you would think that Sam would be the apparently healthy little boy that has been keeping us so busy these days. What a difference a year has made.

In the past year we have been exposed to a completely different world that has always been out there, but we were never a part of it. It didn't exist to us. Just like it truly doesn't exist for a good majority of the people reading this, and I hope it never does. This year of living with a medically fragile child has exposed us to some callous and insensitive people, and it has also exposed us to many more selfless, caring, generous people.

How many times, before Sam, did I ever follow a sick child’s journey? Never. Sam has brought a special connection to the other families out there that are in similar situations that I could not imagine living without. We can vent with each other and compare notes on subjects that most other people just can't understand. We owe a lot to the technology that has allowed us to meet each other over great distances to help each other out. These people can truly understand the complexity of Sam's disease and care like nobody else can.

People who have never been through a situation like this have difficulty understanding Sam's disease, what it takes to care for him, what it is really like. Everyone can imagine what it would be like, but I can guarantee that your imagination is only about 25% correct. I find myself getting angry when people ask me questions that I think are stupid, but they are not stupid questions, they are just trying to understand. I just have to remember to put myself in their shoes and pretend I haven't lived the last year with Sam. Here are a few frequently asked questions:

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"Is Sam's disease cured now that you went to Boston?"

No. Microvillus Inclusion Disease is currently not curable. Sam's disease prevents his intestines from absorbing nutrients, so he is dependent on IV nutrition (called TPN) to survive. He is attached to IV pumps for 17 hours a day that provide all of his nutrients and fluid requirements.

"Then what did you go to Boston for?"

We go to Boston to receive Omegaven. The fat content in standard TPN in the US causes liver damage in over 80% of infants that are TPN dependant long term. Sam started showing signs of liver damage very early on. Going to Boston is saving Sam's liver, it is not curing his disease.

"Will Sam disease go away as he grows older?"

After our experiences this year I will never again say that anything is impossible. However, no, Sam will most likely be living with this disease his entire life.

"Why can't Sam just get a transplant?"

Well, he could. We have made the decision to avoid a transplant unless it becomes necessary to save Sam's life. Transplant technology has come a long way, and it continues to improve every year. Currently Sam's prognosis without a transplant is better than if he were to receive a transplant. This would not be the case without Omegaven. Our hope is that transplant technology will continue to improve and Sam will be able to make a decision regarding living life with the backpack or trying for a life without it. This is a personal choice that we have made for Sam. Other families have made the choice to transplant and we respect their decision and understand the difficult position that they are in. Transplants can be lifesavers, but they are also life changing. In our opinion Sam's chances to live a life as close to normal were better with TPN and the risks and limitations that come with it.

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For those of you who didn't know the answers to those questions, I hope that they help your understanding of some of the choices we've made this year. Next week I am planning "A Week In The Life Of Sam" post to try to give everyone a better idea of what things are like (The good and the bad) managing Sam‘s care.

We also wanted to give a special thank you to Jose and Kinn (Bo too), for helping save our sanity by going through most things about 9 months before we do so they can work out all of the kinks for us. They have become an invaluable part of our life and we can't wait to see them again in May.

Friday, April 17, 2009

Too Many Cooks In The Kitchen...

If you read our post yesterday, you might as well forget that you read it. We are having an experience that we are actually surprised has not happened before . Our rather large team of doctors in thre cities and two states do not all agree.

We have 1 vote for the Iron beign the reason for elevated liver enzymes. We have 2 votes for the Protonix being the cause. We have 1 vote for neither being the cause. Everyone else is scratching their heads.

The team in Boston will revisit the issue next week during their rounds and we hope to have a plan of action then. For now we just sit back and wait. This is an experience that we are used to, wait and wait and wait some more.

Thursday, April 16, 2009

Theories vs. Answers

We really don't have any answers yet, and did not expect too this soon, but we have a theory or two.

In February Sam started receiving Iron Dextran Infusions once a week to help with his severe Anemia. In March Sam started a different medication for his reflux.

Since that time his Anemia has improved as has his reflux. Unfortunately we can not rule out either one of these as the cause for the huge spike in his liver enzyme levels.

The plan is to stop the Iron Dextran infusions for the next month. If he shows improvement in his next round of labs then we will know the culprit was the Iron. If he shows no improvement or is worse then we will stop the Protonix and wait another month. So in a nutshell we could be waiting at least a month or two before we have an answer. If there is no improvement in two months then we are back to square one and will start with other theories which we discuss in more detail with the team in Boston during our visit on May 14th.

Wednesday, April 15, 2009

Crazy Labs, Second Transplants, A New MID Baby

Things have been rather quiet since our central line incident. Wouldn't you know that we were headed for another round of concern.

Sam's monthly labs showed some unexpected results today. In order to explain I will have to get a little technical, so I hope I do an alright job of explaining. Each month Sam has many lab tests run that measure many things in his little body. All of his labs have been looking better each month. One thing that we watch closely is his hepatic (liver) panel. As you will remember Sam's liver was showing signs of damage that was being caused by the intralipid (Omega-6 fats) that he received as part of his nutrition. This was why we made the decision to go to Boston. We replaced the Intralipis with Omegaven (Omega-3 fats) and is what has enabled us to avoid the need for a liver transplant. Two things that we watch are:

Aspartate Aminotransferase (AST): AST is normally found in red blood cells, liver, heart, muscle tissue, pancreas, and kidneys. Low levels of AST are normally found in the blood. When body tissue or an organ such as the heart or liver is diseased or damaged, additional AST is released into the bloodstream. The amount of AST in the blood is directly related to the extent of the tissue damage.

Alanine Aminotransferase (ALT): ALT is found mainly in the liver, but also in smaller amounts in the kidneys, heart, muscles, and pancreas. ALT is measured to see if the liver is damaged or diseased. Low levels of ALT are normally found in the blood. But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage.

When we arrived in Boston:
Sam's AST was at 98 (Normal is 10-65).
Sam's ALT was at 132 (Normal is 3-54).

When we left Boston in September:
Sam's AST was at 136.
Sam's ALT was at 132.

These numbers have slowly shifted up and down over the last few months. This isn't that abnormal, and it can take a while for these numbers to return to almost normal. For Sam the high side of normal would be perfect.

Until recently Sam's AST was averaging around 70-80. His ALT was usually right around 150. Although still elevated these were "comfortable" levels.

Today Sam's AST was at 117 and his ALT was at 370. Comparing to last months results (which they were hoping were a fluke because the number were increasing) these numbers have been steadily, and dramatically, increasing since January.

So what does this all mean? We don't know yet. Boston is looking into whether other changes in his medication and nutrition could be causing this. This would be an easy fix. Our other options, which we will not go into yet, are not such an easy fix. Sam is really teaching us to be prepared for anything I guess.

Other than that, Sam continues to look and act fine. We does not like to be confined and easily walks around the living room, or any other room for that matter, using walls, furniture, or people for support. I do not see full out walking being very far into our future. That sounds exciting, but there is that matter of his IV that is running. He is down to being connected 17 hours a day, from 8 PM to 1 PM, and we received the OK from Boston to go down to 16 hours a day - but then we got his lab results. I think we will hold off on making any more changes.

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Awhile ago we posted about Emerson White. She was the little girl that had received a transplant and rejected, then Colorado tried to cut her Medicaid. As I write this tonight she will be on her way into the operating room to receive her second transplant. Her blog entry form earlier today is below:

Days on transplant waiting list: 14

WE GOT “THE CALL”!!

The surgeon accepted an organ offer for Emerson this morning!! She’s admitted & going through the pre-op process. The team is out procuring the organs as I write - liver, bowel, pancreas, and kidneys! Surgery is estimated to begin between 10 & 12 tonight. All expect her to come out sometime tomorrow late morning.

I have a good feeling about this! It’s Daddy’s birthday today – a great day for a transplant!!!

Check back often for updates through the night. (I won’t send e-mail notification with each one.)

Many prayers & heartfelt appreciation for the donor family on this very difficult day. Thank you for giving the gift of life. Thank you for giving my baby a chance…

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In other news we were contacted this week by a family in Canada who's 4 week old son, Hunter, was just diagnosed with Microvillus Inclusion Disease. Hopefully we can share part of what we have been through the last year with them and our experiences can give them hope for their son. Since Hunter is in Canada they were able to start Omegaven right away which will hopefully help his liver stay healthy. I can barely remember the range of emotions we went through a year ago and relived them a little when we read their story.

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That's it for tonight, we will post again as we come up with some answers to our latest adventure.

Wednesday, April 1, 2009

What is better than two trips to the hospital in one day?

Leaving without being admitted.

We lucked out and the line placement is still good. The cuff that holds his line in is displaced and he will probably be a little sore for a few days. His site was always in such perfect shape and now he has a bulge there, but that is better than a line replacement. We will have to keep an eye out for any changes over the next few days, but it looks like we lucked out and are going to have to miss being admitted to Milwaukee.

Would it be considered abuse to force your child to sleep in a straight jacket?

What is better than a trip to the hospital?

How about two trips to the hospital.

Sam decided he didn't like his central line today and tried to remove it. Sounds worse than it is. Looks like the line is fine. Mom was pretty panicky as she thought the cuff (that hold his line in) was above the skin. Looks like it is just a sleeve that is above the cuff that is exposed. First chest xray looked OK, but Milwaukee (and Mom and Dad) aren't 100% convinced so we are headed back to the hospital for a second check with a more detailed picture.

We will post more details as soon as we can.

Friday, March 27, 2009

We Are...

...back to normal.

No answers, no reasons, just back to happy go lucky Sam. Could have been a stomach bug, could have been anything really. We are very glad that whatever it was appears to be over. We have not seen the inside of a hospital room in exactly 6 months today! We never thought we would ever go this long without an admission, so we are going to shoot for another 6 and try to make it a full year.

Thursday, March 26, 2009

Confusion

All of Sam's labs are back and ALL of them look better than I have seen them in months. Preliminary results on his culture were negative, but we expected that as there really was no other sign of an infection.

Sam has now been sleeping for almost 3 hours without waking and it has been almost 6 hours since the last shrieking fit. Maybe things are returning to normal?

Tomorrow we will be getting an opinion from Boston as they did not get a chance to review the labs today. They may still want to look further into this which would mean taking a look at his digestive system via a scope and we are really hoping to avoid that.

Hopefully we are headed for a peaceful night, Sam was so exhausted that he didn't even wake up when I changed him into his pajamas and hooked up his IV tonight. Mom and Dad need sleep, Dad needs to be able to function at work tomorrow and Mom will have another busy day of trying to coordinate care from three hospitals in two states.

A Very Rough Night

Sam had a very rough night. While there has been no more visual signs of blood in his vomit, he is experiencing some kind of discomfort that comes and goes.

Last night Sam was awake every two hours, voicing his displeasure with ear splitting screams. These were accompanied with more vomiting fits. This is extremely unusual for Sam as he normally sleeps soundly for 10 to 12 hours at night. As soon as this passed he was happy and went right back to sleep. More of the same this morning. Ear splitting screams to giggles in less than 30 seconds.

Still waiting on more lab results. We also had a blood culture drawn yesterday just to be sure something wasn't lurking without a fever, that result will not be back until late today. Hopefully this will go away or progress to something that we can fix easily and soon. We had hoped that sleepless nights were a thing of the past.

We will post again as soon as we hear anything new...

A Bad Night

Sam had a very rough night. While there has been no more visual signs of blood in his vomit, he is experiencing some kind of discomfort that comes and goes.

Last night Sam was awake every two hours, voicing his displeasure with ear splitting screams. These were accompanied with more vomiting fits. This is extremely unusual for Sam as he normally sleeps soundly for 10 to 12 hours at night. As soon as this passed he was happy and went right back to sleep. More of the same this morning. Ear splitting screams to giggles in less than 30 seconds.

Still waiting on more lab results. We also had a blood culture drawn yesterday just to be sure something wasn't lurking without a fever, that result will not be back until late today. Hopefully this will go away or progress to something that we can fix easily and soon. We had hoped that sleepless nights were a thing of the past.

We will post again as soon as we hear anything new...

Wednesday, March 25, 2009

One Of Those Days...

Something told me this morning when I woke up way too early and still managed to almost be late for work it was going to be one of those days.

We frequently deal with Sam's vomiting issues, several times a day, several times a night. We have been working to control his stomach acid in hopes to reduce these and we have seen some improvement lately. Then today Sam's vomit took on an odd shade of reddish brown.

After rushing home from work to take Sam into the doctor, having his vomit test positive for blood, rushing to the hospital to have labs done, we don't really have any clear cut answers. So far his labs look good. His Iron Dextran infusions seem to be helping his anemia as his Hemoglobin, Hematocrit and Platelets are closer to normal than we have seen in a long time. This is also good news because it indicates that he has not been loosing a lot of blood into his digestive system.

It could just me a minor irritation in his digestive system that was bleeding, it could be other things. Once all of the labs are back we will discuss whether to continue to monitor for changes, schedule a visit to Milwaukee for more testing, or make an unplanned trip to Boston.

Tonight everything seems fine again and we are hoping that this is just a little blip that will remain unexplained. If we find out differently we will be sure to update as soon as we can.

Monday, March 23, 2009

Crawling, Teeth, and Growing...

In the two weeks before Sam's recent trip to Boston he gained two pounds and by the feel and look of him, we may have gained another pound this week. Sam was up to 17 lbs 1 oz at our nurse visit last week. We started Sam on Iron Dextran infusions a few weeks ago and so far his Hemoglobin has held steady and actually improved just a little bit. We are also trying a new medication to help with his acid reflux which, today, seems to be helping.

We have also gained two more teeth which Sam spends his days grinding. I have decided that grinding teeth is the worst noise in the world.

Sam has also decided that he is done with the pacifier. It started during the day, and now he won't take it at night or at nap time either. This is fine with us as we were envisioning a very horrible transition when we moved away from it.

Sam is very mobile now and goes wherever he wants, or at least he tries. We definitely can not turn our backs for a second or he is at the end of his line.

That is all of the Sam news, not much else going on right now. We are getting ready for a busy summer of remodeling the outside of the house and front yard and have a lot of work ahead of us for the summer, hopefully the weather cooperates.

We also wanted to let everyone know that we added a little girl named Faith to our Little Wonders section today. Faith is on her way to Boston Tuesday morning where she will hopefully become another Omegaven miracle. Her family has gone through a lot in her short life and we are very happy that they are on their way to visit Dr. Puder and the team in Boston.

Wednesday, March 11, 2009

One Year Ago Today...

Today has been trying. Besides another trip to Boston, today marked the day when Sam was admitted to the NICU. It is so hard to think back to that day, think back to what Sam looked like that morning. We cried for hours, and it was one of the days that we thought for sure that Sam was not going to make it through the night.

Today also marks the day when we met some very special people. It is good to think back and remember meeting Katalin Szaniszlo, MD (Dr. Kate), Paul R Myers, MD (Dr. Paul), and Abraham J Liebeskind, MD (Dr. Abe). They, along with the rest of the team at the NICU (ALL of the nurses, the social worker, and child life specialist) went through so much with us a year ago. THANK YOU to all of you for everything that you did for Sam and our family. You are a spectacular group of people and we have not forgotten, nor will we ever forget, any of you.

RSV season is almost over and we are looking forward to being able to attend a NICU reunion pizza party again soon.

Jason & Deb

PS Deb and Sam made it to Boston safely and I have a report that Sam got tired of his usual scooting today and decided it was time to all out crawl!!

Monday, March 9, 2009

Not A Fan Of Cake

We just wanted to do a quick post and thank everyone for that was able to make it to our home over the weekend to share Sam's big day. Sam had such a good time.

He is, however, not a fan of cake.

Not really a fan of anything that you try to put in his mouth these days. I am pretty sure he thought we were all crazy and seemed confused when everyone started singing.

Deb and Sam are headed to Boston on Wednesday for a check up. Hopefully we can avoid any stowstorms again this time...

Friday, March 6, 2009

The Boy Who Lived...

We have made it to a day that we were told many times might not be possible. 10 months ago we were certain we would never see Sam's Birthday.

So much has happened over the last year, so many highs, so many lows. It has been a journey that has changed our lives forever. We could not have done it without the help of all you.

We have a big day planned for today, we will get pictures and video posted as soon as we can.

Please check back after 2:00 PM today as I will be uploading a special video on our home page.

HAPPY BIRTHDAY SAM!!!!

Wednesday, February 25, 2009

Prayer Request for Gavin Owens

We have been following Gavin's story since shortly after Sam was diagnosed with Microvillus Inclusion Disease.

Gavin's family has had to make some very difficult decisions regarding his care recently and this morning things are not going well.

Please keep Gavin and his family in your thoughts and prayers today. If you can spare a moment, please leave them a message at:

http://gavinowens.blogspot.com/

Tuesday, February 10, 2009

A Celebration In The Making

We have posted details for Sam's Birthday party on the website. We will be hosting an open house from 1 PM to 5 PM on March 7th.

Nothing else new, Sam continues to be as healthy as he can be. We are struggling to put on weight this month, hopefully we will be able to get his calories increased next week.

We will update more soon, new pictures galore are coming. We hope to see may of you on the 7th!

Tuesday, January 20, 2009

All Teeth And Nothing To Do With Them

Although we have posted a few journal entries lately, we haven't done a Sam update in a little while...

We are up to two teeth. I remember when Ryan was teething and what a nightmare it was. Sam is apparently not bothered by teething. He goes to bed at night with one tooth and wakes up the next day with two. No crying, no fussing. We are attributing this to his incredible tolerance for pain which has seemed to developed with his multiple pricks and pokes throughout his life.

Our calorie increase has helped us gain some weight and we are now just less than 15 pounds.

He is his normal happy self most days and his favorite thing is still his big brother. We have not made any progress with crawling, but Sam is starting to get around. It is a little scary when you turn your back for a minute and he has rolled halfway across the room and is at the end of his line.

Things are also not progressing with eating. Sam will take food in his mouth and his oral aversion is better, he just won't swallow food. He is happy as can be with a Ritz cracker. He breaks off pieces into his mouth, pushes them around, and spits them out.

Thanks to a few people we are getting a little relief. We are going to work hard over the next few months to get Grandma and Gramps comfortable with Sam's care so that they can watch him when they are up to it. We also have started the process to (hopefully) get approved through Medicaid for some private duty nursing. For now we have received a generous gift from the members of Artistic Threadworks which will help us cover some private duty nursing each month and we have found a nurse to help us out for a few hours each week who we are more than comfortable with. (THANK YOU SHERRI) Sheri took care of Sam in the NICU and spent quite a few hours with him when he was first admitted. She is also helping us get all of the paperwork in order to apply for private duty nursing through the state - any help with red tape is always appreciated.

That is really all of the news we have for this week. Thank You to everyone who sent letters and emails on Emerson White's behalf, her story has been picked up by several media outlets and the state is now working with her family to help them come up with a solution.
Although we have posted a few journal entries lately, we haven't done a Sam update in a little while...

We are up to two teeth. I remember when Ryan was teething and what a nightmare it was. Sam is apparently not bothered by teething. He goes to bed at night with one tooth and wakes up the next day with two. No crying, no fussing. We are attributing this to his incredible tolerance for pain which has seemed to developed with his multiple pricks and pokes throughout his life.

Our calorie increase has helped us gain some weight and we are now just less than 15 pounds.

He is his normal happy self most days and his favorite thing is still his big brother. We have not made any progress with crawling, but Sam is starting to get around. It is a little scary when you turn your back for a minute and he has rolled halfway across the room and is at the end of his line.

Things are also not progressing with eating. Sam will take food in his mouth and his oral aversion is better, he just won't swallow food. He is happy as can be with a Ritz cracker. He breaks off pieces into his mouth, pushes them around, and spits them out.

Thanks to a few people we are getting a little relief. We are going to work hard over the next few months to get Grandma and Gramps comfortable with Sam's care so that they can watch him when they are up to it. We also have started the process to (hopefully) get approved through Medicaid for some private duty nursing. For now we have received a generous gift from the members of Artistic Threadworks which will help us cover some private duty nursing each month and we have found a nurse to help us out for a few hours each week who we are more than comfortable with. (THANK YOU SHERRI) Sheri took care of Sam in the NICU and spent quite a few hours with him when he was first admitted. She is also helping us get all of the paperwork in order to apply for private duty nursing through the state - any help with red tape is always appreciated.

That is really all of the news we have for this week. Thank You to everyone who sent letters and emails on Emerson White's behalf, her story has been picked up by several media outlets and the state is now working with her family to help them come up with a solution.

Tuesday, January 13, 2009

Omegaven In The News

We just wanted to share with everyone an article from the front page of the Boston Globe about Ellie Brogan and her Omegaven journey. Ellie's website was one of the first that we found after Sam was diagnosed with Microvillus Inclusion Disease and reading her parents journal entries were what convinced us that going to Boston was what we needed to do.

Thank you to Abby and Gib Brogan for getting Ellie's story out there for other parents to find and helping to continue to spread the word about the miracle we, and many others, have experienced with Omegaven.

Read the article here:

http://www.boston.com/news/local/massachusetts/articles/2009/01/09/old_fashioned_lifeline/

Friday, January 9, 2009

Back Just In Time

Sam and I made it back to Wisconsin today, just ahead of another snowstorm in Boston.

We had a very good clinic visit in Boston this week. Everyone is impressed with the progress Sam is making. His weight gain has slowed to almost nothing, which is of a small concern, but they will be boosting his calories to try to get him to start gaining again. Due to a mix up at the clinic, we don't have lab results for Sam; we will have to have labs drawn here next week to see how they look.

This coming week we will get to increase Sam's unhooked time from 5 hours to 6 hours. They want to keep pushing Sam's unattached time up an hour each visit and surprised me by telling me that they believe that we can probably get Sam up to 12 hours off eventually. I will believe that when I see it, that just seems like an awful long time to have no fluid or nutrition going in.

We have been experimenting with Sam's reflux medication over the last few weeks and it is going so well that they will be adding it right into his TPN bag for us so we won't have an extra medication to give him every 12 hours.

We had a very nice trip home today, Sam and I got bumped to first class and Sam took full advantage of the extra room by sleeping for the entire flight from Boston to Milwaukee.

Tomorrow we will be traveling down to celebrate Christmas with my mother's family. No time to catch up on rest, but that is in the works and we have received some help with getting some respite care into our home (hopefully soon) to give us a little break. Maybe we can finally find time to finish moving in and get the house clean...

Saturday, January 3, 2009

Happy New Year!

What a busy few weeks we have had!

We managed to spend Christmas day at home with no major incidents and no time in the hospital. Sam really didn't know what to make of the presents, but he enjoyed the wrapping paper. I think we would have saved a lot of money if we just would have given Sam paper for Christmas, it was his favorite thing. Ryan's favorite things seem to be Sam's toys, but only when Sam is playing with them first.

We spent a relaxing day at home for Christmas; we didn't even take the time or energy to shovel the driveway. Jason paid dearly for it the next day though when we got 4 or 5 more inches of snow on top of the 3 or 4 inches that were already in the driveway. But Santa left many presents and it was so warm in front of the fire.

We spent the Saturday after Christmas at Grandma and Gramps house. Saturday morning gave us a little scare when Sam's TPN became disconnected from his line. Deb went to set him down on the floor and noticed blood seeping through his clothes. Since we had just finished cleaning him up from his nightly poop-o-rama we were very worried about a line infection. Sam was very warm that afternoon and we were preparing to take him in to the hospital when we got back to Appleton. By the time we got home, no fever and everything was back to normal. It looks like no dirty bugs got in the line.

Another relaxing day, although loud (which is typical for Jason's family gatherings). We may have to post the video of Tanya, almost halfway through her pregnancy, hula hooping on Wii Fit. It is really hysterical to watch each other hula hoop with no hula hoop.

It was nice for all of us to get to spend the entire day together, and Sam had his first tooth break through his gums that day!

Today Sam is ten months old! At times it feels like the last 10 months flew by - other times it feels like Sam has been around for 10 years. When we look back on the last 10 months it is so amazing to see him so healthy, learning, smiling, laughing, and starting to move (we are not prepared yet for Sam to be mobile so he can feel free to take his time on this).

We were also happy to learn this week that we have gotten our home nursing care back. This is at least enough so that we can have our nurse come in every week and do a quick check up on Sam, help with dressing changes, get his weight, and we can do our monthly labs at home instead of having to haul him, and everything that goes with him, into the hospital. We are still in need of a break and are working on trying to get some respite care here once a week.

2009 is staring out with many positives and we hope we can continue to keep Sam healthy while keeping our sanity this year. Jason heads to Boston on Wednesday with Sam; hopefully we can keep the snow storms between here and Boston to a minimum next week.