Another two months have flown by. So much has changed that I am not even sure where to begin tonight. I have actually started a journal post several times over the last few weeks, but I never seemed to be in the mood to finish the post. Tonight I promised myself that I would get a post published.
So, we kinda left everyone hanging with the last post. Sam and I made it back to Wisconsin and we finally got a negative culture and the all clear to head to the wedding instead of the hospital. The wedding was a blast, Sam had such a good time dancing and chasing all of the other kids around at the reception.
I was hoping that the line infection would be a blessing in disguise. We had been battling a recurring site infection at Sam's broviac site on and off for several months. With the line infection we were on a nice long course of antibiotics and his site started to look healthiest I had seen it in awhile. Unfortunately as soon as we stopped antibiotics the site started to look messy again and within a short time the infection was back. We decided that it was time to consider removing the line and having it replaced.
We met with Sam's new surgeon from Madison for the first time to have him assess Sam's site and get his opinion. Dr. Lundwent to school in Boston, and did his residency and fellowship at Children's in Boston. This was the guy that our team in Boston wanted us to use as Sam's local surgeon, so we had high hopes when we walked into this appointment that we were going to end up with a good addition to Sam's medical team. We weren't disappointed.
If you have ever read our entries about, or heard us talk about, Dr. Puder you will know that we hold him in very high regard. Dr. Lund has come in a very close second place.
Dr. Lund agreed that it was time to pull the line, and recommended replacing Sam's Broviac with a port. The Broviac is a tunneled central line that enters Sam's chest and then is tunneled under the skin to a vein in his neck. This leaves a long tube hanging out of Sam's chest that we hook up his TPN (nutrition) , hydration, and IV medications to. The problem we were having is the the site where the tube entered Sam's chest kept getting infected. The port is similar, but instead of of a tube hanging out of Sam's chest there is a small titanium disk implanted under Sam's skin. This disk has a silicone top on it. To use it a small needle is inserted through Sam's skin and into the port. This means no tube and no large wound on his chest.
After weighing the decision for several days, we made the decision to give the port a try. Once of the benefits that we would gain is that we can de-access (take the needle and IV tubing completely out) any time we need to. This allows us to give Sam a full bath without having to worry about contaminating his site. He can also swim in the pool unprotected when he is de-accessed and we can allow him to skim in lakes and rivers which he has never done before.
Sam's surgery on August 30th went very well. Dr. Lund was able to re-use the existing vein opening so we did not loose any access sites for Sam, and the new port worked great - but don't get too excited yet.
The needle in Sam's port can stay in for up to 7 days. To allow Sam to heal from the surgery and for the swelling to go down, they wanted us to leave the original needle in for 5 to 7 days and then change it out weekly or more often at home once we were comfortable with the procedure. Our nurse came out to the house and changed out the needle with no issues the first week. The plan was for me to start learning the next week.
When our nurse came out the following week, Deb decided at the last minute that she wanted to learn how to place the needle. We went through the cleaning process and Deb inserted the needle. The placement looked good, but she could not get any blood to draw into the line. The nurse had her pull the needle out and try again. Still no luck. The nurse took over and tried several more times (keep in mind that each attempt means sticking the needle back through the skin into the port). She was stumped as each time she was certain that the needle was in the port. After several calls to two hospitals, she tried one more time. Placement was good again. This time she attempted to flush the port before trying to get blood return which was suggested by the pediactic nurses at the hospital that we had talked to. Everything worked beautifully this time.
Unfortunately, this meant that the skin on the top of Sam's port was pretty torn up an irritated. If you've been reading our website for awhile I am sure you can guess what I am going to say next. Sam has developed and infection on the skin over his port. We have been treating with antibiotics and changing the needle out every 3 to 4 days, hopefully we will start to see improvement this week.
Otherwise Sam has continued to thrive. He continues to show interest in trying food and has shown steady gains in his speech development and use of sign language. He very quickly developed an interest in books (although he main interst at first was destroying them) and we now have to read several every night before bed.
With all of this going on we neglected to update the website for almost two months. There were several things that happened all one after another that made me question whether or not we were going to continue to share Sam's story so publicly. I think the Sam update was enough for tonight, but I will update again soon and explain what else has been going on in our lives and what the rest of the family has been up to.