The opinion from the surgery residents was to leave everything alone for now. They felt that the site did not look infected and the best course would be to let it be and see what happened. This is what we have been doing for the last several months, which has become increasingly frustrating as we know that it is just a matter of time before it becomes infected.
When they touched base with one of the pediatric surgeons, he was concerned that the lump on Sam's chest may be related to the site issue, so he asked us to wait in the ER until he could come into the hospital to take a look at it.
His opinion was that the line needs to come out. There is some concern that there is infection brewing deep in the tunnel of Sam's line that has made its way to an old incision site which is causing the lump and the drainage.
Although we would prefer to not pull the line, what he said made sense and in all reality the constant worry and effort to keep his site clean has been a huge drain. We agreed that it is time to replace it.
Tomorrow morning we will be headed back to Madison to have the line removed and a new one placed. As long as everything goes according to plan we should be back home a few hours after the surgery.
Sam continues to make progress with his speech and motor skill development. We recently has his annual IEP review and for now he will continue to receive speech therapy at school. We are still hopeful that by the end of next school year he will be doing well enough to be able to attend the bilingual immersion program in Kindergarten. Unfortunately, if he is not ready, he will have to attend a separate elementary school from his brother which we really wanted to avoid.
Sam and I traveled to Boston in January. Sam did really well traveling this time. He asked to sit on the plane seat instead of his car seat and it went so well that we will probably check the car seat from now on. He remained in a good mood the entire day which is amazing considering the fact that we left home before 4:00 Am and arrived back just after 10:00 PM.
The actual appointment in Boston was a complete fiasco, and I hadn't posted about it until now as I wanted to take a step back and clam down first. It hasn't happened yet. When you're making a trip like that all in one day things need to work out in a certain way in order for it to work.
For some reason when we arrived we did not have an appointment. I am not really sure what happened there as I got several versions of the story, but our appointment card from our previous trip had that date and time on it. Luckily they were able to see us, but that caused a cascade of other issues.
As we have posted before, these trips have been made more difficult by the fact that the hospital can no longer ship any Omegaven to us. This means that each time we visit we need to carry or ship 12 cases of Omegaven, in glass bottles, back to Wisconsin. For a few visits I was able to ship it back myself using labels from the hospital. That changed in November when I arrived and was told that they could no longer do that and I needed to arrange to get it home. (I got a letter in the mail the day after our visit explaining this). In November they had the 12 cases packed into 2 cartons with packing material all taped up and ready to go for me. I had no way to get it around as I can't carry two 30 pound boxes, Sam, his car seat, a backpack, and a diaper bag. I was pretty frustrated, but managed to make it to the airport somehow and checked everything.
In January I came prepared. I brought along a folding dolly that could carry with me on the plane so I could put the two cartons of Omegaven onto it and roll them to the cab, into the airport, and then to the car when we arrived in Wisconsin.
Because we didn't have an appointment, the Omegaven wasn't boxed and ready to go. It was dropped off in the exam room in several paper bags - which I had no way to carry. I asked if someone could find some boxes so I could pack it up.
When we approached the end of our appointment I asked again about finding some boxes. Amazingly, in a hospital the size of a few city blocks, there were no boxes to be found. I was told that if I wanted to box it up I would need to go buy boxes.
Sam and I packed up and headed out (in the cold) to walk over to the UPS store to buy boxes and then headed back to the hospital. When we got back we picked up our Omegaven and asked for something to pack around it and some packing tape to finish up so we could get back to the airport. The response was "we don't have any". So here I am, standing in the Fegan 3 lobby. I have two big empty boxes, 12 cases of Omegaven, Sam, car seat, back pack, diaper bag, and hand dolly - but no way to pack the Omegaven so I can get it to the airport and back to Wisconsin safely.
I rarely have anything bad to say about Children's Hospital Boston, but about this day I can honestly say that the feeling and attitude that I observed was that nobody gave a shit. As my anger grew I was seriously considering telling them where they could stick their Omegaven and just leave it there.
Luckily there was one person who actually decided to help out and helped me carry everything down to the shipping and receiving department so we could pack everything up. We (barely) made it to the airport on time to catch our flight home.
I can't wait to see what our next visit to Boston brings.