Monday, July 27, 2009


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


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


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


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


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.