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.
Monday, September 20, 2010
Thursday, July 15, 2010
Infection
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.
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.
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