It has been a month since we updated already, I am still not sure where the time goes.
Since our last update we have continued to be busy. Sam has been battling a site infection for the last few weeks, after two separate courses of antibiotics the infection was gone and we were waiting for the site to heal.
Sam and I are in Boston today for a check up and to pick up more Omegaven. We still have not worked out a way to bring Omegaven to Madison for Sam, but I have something in the works that would help tremendously with the trips to Boston. By far the biggest expense for these trips is the airfare. I may have found an oranization today that is willing to fund the airfare portion of out trips, and I will post more details as soon as I find them out.
Our schedule for this week was hectic. Sam and I were set to head to Boston Wednesday morning on the 6 AM flight, meet up with Bradley's family, have a clinic appointment, catch the 6 AM flight back to Wisconsin on Friday, head to Fond du Lac WI for my brother's wedding rehersal and then be at the wedding on Saturday.
Tuesday morning Sam woke up with a fever of 101.5. Normally this wouldn't be a big deal but, becuase Sam has a permanent central line, this can be an indication of infection so we headed into the ER. Of course when we got to the ER we were in for a treat.
There is an ER doctor that I have had issues with in the past. To be blunt he is one of the biggest jerks I have ever encountered in the medical profession and we have met a lot of doctors. If you are not a trauma and you are not bleeding out on the floor then you are wasting his time. The first thing that he said to me was "Explain to me why you are here instead of at the clinic, it is just a fever". Things went down hill form there. The main reason that we were at the ER is that we can get immediate results on labwork, and it is extremely difficult to get a peripheral blood draw off of Sam. The other reason is that depending on what the preliminary lab results say, there is a very good chance that we will be admitted to the hospital. An infection of this type can be VERY serious and can quickly go from being nothing to being deadly in a short amount of time.
I explained to this doctor what we needed, read the list of clutures and lab work that I needed. He said that he would need to consult with someone who knew more about Sam. I explained that our pediatrician was off for the day, but there were others at that office that had enough knowledge of Sam to help, I also gave him the information for Boston and let him know that everyone on the Peds floor at the hospital (which is three floors above the ER) knows Sam well and could also help. With all of this information in hand he left the room, letting me know that it would probably be awile becuase he was very busy. Let me add here that at this time there was nobody in the waiting room at the ER and we were, in fact, also the onlypatients in the ER.
FOUR HOURS pass and we still hadn't even had cultures drawn. The doctor stops in to let me know that he is still waiting to hear back from the pediaticians office.
I called Deb and asked to to call the peds office to find out what was going on. I am sure you will be shocked to find out that he never called them. Nor did he call anyone else that I had asked. Deb ended up calling the Peds floor at the hospital and one of the pediatric specialists came down to help us out. We got cultures drawn and disussed what our plan would be while we waited for the culture results. Since Sam was acting like nothing was wrong and he wasn't showing any symtopms of being septic, we decided that it would be pointless to admit him to the hospital when they wouldn't do anything for him that we couldn't do at home. We went home with two IV antibiotics. Sam ws still looking OK on Wednesday morning so we headed for the airport.
Upon landing in Boston I received the results of Sam's cultures, both the culture off of his line and the peripheral culture were growing profuse amounts of gram positive rods. Looks like staph, I am still waiting on exact identification.
This meant that we needed an additional culture on Wednesday, so I met up with Bradley's family and we headed to the hospital. Boston was a little hesitant to let Sam come back to the hotel with me and they would not normally treat a blood infection outpatient. We worked it out and I agreed that if there was any change we would come back to the hospital right away.
Today we had our clininc appointment. Unfortunately the cultures from yesterday grew out again, which means that we will need to have blood cultures done again tomorrow in Wisconsin. Protocol is that if there are three positive cultures while on antibiotics, the central line will need to be pulled so we can clear the infection from Sam's system and replace the line. This would mean that if Friday's cultures are still positive they would want Sam admitted in Madison on Saturday. Great. I asked if he looks OK and we aren't having any other issues if it would be safe to wait until Sunday. Right now the answer to that question is "We'll cross that bridge when we come to it". Sam's White Blood Cell count was EXTREMELY HIGH on Tuesday (which is an indication of infection), it was much better on Wednesday. This could mean that we are keeping the infection under control but not getting rid of it. Hoepfully we can get a clear culture today or tomorrow.
The only other changes from our clinic vist today are increasing his iron dosage and frequency. We reduced the dose and frequency in May and Sam has become slightly more anemic since then. The other "shocking" news is that we are actually REDUCING Sam's calories in his TPN as he gained too much weight in the last two months (I can hear my mother already as she always thinks he isn't getting enough calories).
With all of this going on we still had time to meet with Bradley's family all day yesterday. I have spoken on the phone to them many times over the last few months and it was nice to meet them in person. The weather wasn't the best in Boston on Wednesday so we spent some time hanging around at the hotel. I had hoped that Sam and Jackson (Bradley's brother) would hit it off, but no luck there. Sam just wasn't in the mood to deal with other kids. We completed the day by having dinner with another "Omegaven Mom" when Genevieve's mom, Tiffany, took a break from the hospital to joined us. It was nice to meet her and give her a little break.
This morning we had breakfast with Bradley's family and Blaise's family before we headed to our clinic appointment. All in all it was a busy two days. Tomorrow motning we will head to the airport at 4 AM to head back to Wisconsin.
To top off the week, we received several inches of rain at home yesterday. Severe storms knocked out power during the night which caused our sump pump to not run and we now have wet carpet in the basement family room that we just finished this spring. Deb is doing her best to get everything dried out and hopefully we can salvage everything.
I will update as we get more information about Sam's infection, but I will leave you with a picture of what Sam is supposed to wear on Saturday. Here's hoping that he isn't wearing an ill fitting hospital gown instead.