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


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 todayĆ¢€™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.