Saturday, March 20, 2010

Busy week, Big changes.

Sam and I had a very busy week in Boston.  We have started to move forward with some major changes to Sam's medical care and have begun to come up with options to explore for other parts of his care.

We started out early Wednesday morning with a venous ultrasound of Sam's jugular and subclavian veins.  This was done to determine the amount of vein narrowing that Sam has due to the multiple times that we have had to replace his central line.  The last replacement that we did in September was a difficult placement and the surgical report from that placement made us very nervous about running out of access points in Sam's upper body.  There are only so many veins in the body that can support a central venous line. Our other options would be to have a CVL placed in his femoral artery, but we are trying to avoid a placement there as it would mean having an exit site below his waist.  Having a line below the waist for Sam would mean having a line covered in stool at least once a day.  That would lead to even more infection risk.  If we do loose access sites, there is the possibility that the situation could change as Sam gets older and grows, some previously narrowed or damaged sites may become accessible again.

The ultrasound itself was a complete nightmare.  We started at 8:50 in the morning and the procedure should have lasted 20 minutes.  We ended up being a half an hour late for a 10:00 appointment with Dr. Puder.  I explained to the ultrasound tech that if I tried to restrain Sam, he would resist and get angry so it was best to try to work with him lying on the table without holding him down.  That went fine for 5 minutes until she needed him to turn his head away from her.  He got mad and that was pretty much the end of him cooperating.  After listening to him scream for 20 minutes I suggested that we have him sit in his car seat/stroller, but she didn't think that would work.  At 9:55 she decided that it was time to have a different tech come in to try to finish the procedure which gave me a chance to try to calm Sam down.  I strapped him into his car seat and rocked him almost to sleep.

The second tech came in and asked if we could try just leaving him in his seat to finish the ultrasound. I told her that I thought that was a great idea.  Too bad nobody thought of that earlier.  Within 10 minutes the ultrasound was complete and we made a mad dash for Dr. Puder's office.

When we made it to Dr. Puder's office we went over the results of the ultrasound.  The results were not anywhere near as bad as he, or I, expected them to be.  There is some slight narrowing in the right subclavian, but the left looks normal.  Both jugular veins look good as well.  The current line was already in the left subclavian so I was still holding out hope that we wouldn't have to pull the line and risk damaging the vein.  I knew before asking though that Dr. Puder was going to want to replace it.  It appeared that Sam may have been starting a new infection at the exit site as there was a small amount of drainage.  This on top of the fact that the site looked terrible, was not healing, and had a mess of granulation that kept getting irritated, meant that it was time for a replacement.

With that agreed upon we moved onto a discussion regarding the direction that we are heading with Sam's medical care.  I am pretty sure he wasn't shocked as he knew we were frustrated with Children's in Milwaukee over not allowing us to use Omegaven while inpatient and the fact that there are certain doctors there who should be more involved in Sam's case that seem to just not care anymore since we made the decision to go to Boston.  (More about the planned changes in a little bit).  We also discussed Sam's future in the Omegaven study.  We simply can not afford to continue to travel to Boston every eight weeks.  There is enough money in Sam's benefit account to make a few more trips, but we having been doing this for almost two years already and it is just becoming too much.  No matter what happens we hope to continue to travel to Boston at least one or twice a year at a minimum.  We would like to keep Dr. Puder and his team involved in Sam's care for as long as we can.  Since our insurance will not cover Omegaven we are really in a tough situation as there are not any facilities locally that have the funding to provide the drug for us at no charge.  We left things as they are for now as a final decision on what we are going to do with Omegaven will depend on a huge number of factors.

We headed over to surgery to check Sam in and get him ready for surgery.  While Sam was in surgery I got to spend a little bit of time with Carter Cates and his parents Sean and Chelle. I was nice to spend time with them as we really enjoy their company and we always seem to miss each other in Boston.  The last time Sam and Carter were both in Boston at the same time we weren't able to meet Carter.

Surgery went well.  Dr. Puder was able to re-wire Sam's Central line using the existing vein site which meant that we did not cause any further damage to Sam's veins and did not cause anymore access issues for the future.  A re-wire is done by making an incision in the existing central line close to Sam's neck.  A wire is then inserted through the incision into the existing line to the tip. When the old central line is pulled out the new one is then slipped over the wire and the new line is tunneled under the skin to a new exit site.  Sam's new site is lower on his chest which will hopefully allow us to protect it better.  It will be harder for him to get his had into the top of his shirt and reach the dressing now.  We are also protecting the dressing and line using a Summer's Life Guard under his shirt and an ace bandage wrapped around him on top of his shirt while he sleeps.  The new site looks great so far and is already healing well.

Sam was pretty angry in recovery and we have to give him some additional morphine to help calm him down.  This put him back to sleep and he was out cold for over an hour.  When I finally got him to wake up he was in a much better mood and we headed out of the hospital and back to the hotel.

On Thursday we had our CAIR appointment.  I was nervous going into this appointment because I wasn't sure how the team was going to react to the changes that we want to make to Sam's care.  Our only experience with this type of change was in Milwaukee when we told them we were going to Boston for Omegaven.  It was not really a pleasant experience.

In comparison, the discussions with the CAIR team went very very well.  Now that we have spoken to them we can share  what we are planning.

We are currently working on building a new local team of doctors for Sam at American Family Children's Hospital in Madison.  We will be selecting each member of our new team and we will be very up front with them as to what we are looking for.  This team will gradually replace the CAIR team in Boston as Sam's primary care team over the next 4 to 6 months and the Boston team will be our secondary team.  Once this transition is complete we will still continue to see the CAIR team in Boston, but much less frequently that we currently see them.  At first we will still see them three times a year, but we will probably go down to once or twice a year  when Sam turns three.  We are asking our team in Madison to be collaborative with Boston.  Both teams will be kept in the loop as to what is going on at all times and we are not going to tolerate any of the political garbage that we experienced in Milwaukee.  This change is important for several reasons, but the main reason is that in a crisis situation we need a team here is Wisconsin that is comfortable and familiar with Sam.  It is also important to make this change so that in the event that we can not continue to travel to Boston, due to the cost, we already have a team here is can take over his care completely.

This has been a difficult decision to make.  Boston, for the most part, has done a very good job of managing Sam's care from halfway across the country.  They have listened to our input and have helped us to keep Sam healthy and growing for the last 19 months.  They have resources that Madison does not have and this is why we will continue to keep our team there active in Sam's care for as long as possible.  There may come a day when a situation arises with Sam that can not be handled in Madison and we always will know where to go if that happens.

The main thing that we have to work through is what to do about Omegaven.  Omegaven has saved Sam's life and we are not ready to stop providing it for Sam.  Working with the team in Boston we have come up with a few solutions on what we can do:

>Nothing.  We continue to participate in the Boston clinical trial.  This would mean finding a way to fund returning to Boston every eight weeks until the drug receives FDA approval and can be prescribed locally and paid for by our insurance.

>Stop giving Sam Omegaven and go back to using Intralipid.  Other children who were suffering from TPN associated liver disease, went on Omegaven, got healthy, and then had to stop Omegaven for whatever reason, have done well going back on the standard Intralipid formula.  It is possible that this could be the case for Sam.  In the event that we start to see damage to Sam's liver we could go back to using Omegaven.

>Stop giving Sam Omegaven and attempt to supplement him with Enteral fish oil orally.  There is a great possibility that this wouldn't work, but it is worth discussing or possibly testing.  For this to work we would have to get Sam to take fish oil orally, on a regular basis (which doesn't sound like fun), and his gut has to absorb it.  We have no idea if his gut will absorb any or a portion of fish oil given orally so we would need to perform a test by giving him the fish oil orally for awhile and then run labs to see how much he is absorbing.  If he absorbs it at all I do not think it will be a high amount so this could mean giving him massive amounts of fish oil orally every single day and dealing with whatever this might do to his already stinky stool.

>Get Omegaven locally.  Well, we have already tried this and haven't had much luck.  Since our primary insurance will not cover Omegaven and we have not found a hospital locally that has funding to cover the cost of the drug it just wasn't an option.  So what if there were a third option?  What if Fresenius Kabi, the company that produces Omegaven, was nice enough to provide Omegaven to a local facility at no charge so that they could provide it to Sam?  Well, that is exactly what we are waiting to find out.  It will take some coordination between Madison and Boston, and there is no guarantee that Fresenius will agree to it, but we have a guardian angel in Boston who is working on it for us.

It was a busy three days in Boston.  It is going to be a busy couple of months getting everything set up and coordinated with a new team of doctors in Madison.  After all of our discussions with everyone in Boston though, I am convinced that the decisions we are making now and the steps we are taking are what is best for Sam and his health.

I was actually sad to leave Boston after this visit.  I got to spend a fair amount of time with Sean Cates while we were there.  It was nice to give him a break from being at the hospital and I enjoyed getting to know him and Chelle a little bit better.  We talked for hours (over several beers) about Sam and Carter and Hospitals and Doctors.  It sucks that I am in a situation to have those kinds of conversations and that they are in a situation to have those types of conversations, but I am glad there are people like the Cates family out there to have those conversations with.

Unfortunately we ended the Boston trip on a bad note.  I caught a bug from somewhere in Boston and it hit me while Sam and I were waiting to get on our flight home.  By the time the first flight took off I was miserable.  Landing was horrendous as I could not get the pressure in my ears to equalize.  This caused excruciating paid while landing.  I ended up with two perforated ear drums and a double ear infection.

I haven't updated pictures in awhile and I will try to get that done this week.  I need to get the pictures from Sam's birthday uploaded and Sean Cates took a bunch of excellent pictures of Sam in the garden at Children's Hospital Boston which I will post as soon as I get a chance,

Tuesday, March 16, 2010

While in Boston...

Well, time keeps slipping away from me and I never got back to the site to finish the post for Sam's birthday.  I just want to thank everyone who made it out to our house for Sam's party.  We collected a few boxes full of items for the patients and families at Children's Hospital of Wisconsin - Fox Valley, and we were able to raise a fair amount of money to help out another family of a child who is a patient in Boston.  It was a very successful day all around and we can't wait to do it again next year.

Although Sam's infection cleared up with the last round of antibiotics, the site really hadn't healed at all yet.  I planned ahead and had Dr. Puder put Sam on the surgery schedule for Wednesday since we were going to be in Boston anyway.  Tomorrow is turning out to be a very busy day.

Tomorrow morning Sam is having an ultrasound done to look at his veins.  This is being done because  his last line placement was very difficult and took several times longer than a line placement should take. This study will help us narrow down where Sam still has veins that can be used for central access and which ones are not available.  We may gain back some of the unavailable sites as he (and his veins) grow, but we need to be able to keeps these lines and sites healthy for more than a few months.

Tonight when I changed Sam's dressing, I noticed that Sam's site has some discharge again and it looks like there may be another infection brewing.  Tomorrow at 1:30 (so like 4:30 hospital time) Sam will have a new line placed.  Hopefully everything will go well and Sam and I will both be back at the hotel tomorrow night.

I will post again tomorrow one we are out of recovery.

Monday, March 8, 2010

Line fixed and back home

Sam and I arrived back home from Milwaukee early this morning.  A quick splice and some glue and we are good to go again.  Hopefully we can have an uneventful week this week as I need to catch up on some sleep before we head back to Boston on Tuesday.

Sam's party went great and it was a very fun day for Sam.  We managed to somehow only take about 5 pictures from the entire day, so if you were here and took any pictures, please email them to me.  I will post a bunch on the site as soon as I can get the memory card out of my mom's camera.

As soon as I can get a little sleep I may come back to finish the post that I originally intended to post yesterday.

Sunday, March 7, 2010

Happy Birthday Sam!

I had a different post in mind for today, but unfortunately Sam and I are headed to Milwaukee to spend the remainder of his birthday in the ER.  Sam's central line sprung a leak and there is nobody qualified in Appleton to do the repair except for me and I am not comfortable doing it at home.

While we are there, I am going to have central access and surgery take a look at his site and although it doesn't really look infected anymore it is still an ugly mess.  I am not going through a line repair tonight just to turn around and head back down there on Monday or Tuesday.

Friday, March 5, 2010

Love, Hope, and Stuff...

For the next 24 hours we are going to try to put aside all of our worries about what the near future hold for Sam and his ever complicated system of doctors, clinics, and hospitals.

At of 11 PM tonight, Sam's party is a GO.  His site doesn't look great, but I have seen it look worse.  The infection is better and I have no doubt we will make it through tomorrow with no issues.

To top that, I think our house is cleaner than I have ever seen it in two years.

Wednesday, March 3, 2010


Sam and I arrived home late this afternoon.  The last three days have been mentally and physically draining and I am glad that they are over.  I do not, however, think that we are out of the woods yet.

My frustration with the hospital grew continually with each moment that I spent there and it was probably a good thing that we got out of there today as I don't think I could have taken anymore.  I had hoped that I could meet with GI, surgery, and the central line tem before I left so that we could try to put our heads together to help come up with a plan for future stays to help get Omegaven for Sam while he is inpatient in Milwaukee.  That never happened.  I wanted to meet with the central line team to try to brainstorm ideas on ways to keep Sam away from his line.  That never happened either. 

So we are home with antibiotics and will we continue them for 5 more days.  Sam's site is better than it was, but it is not great.  I would say that we have about a 25% chance of making this line last past our Boston trip in two weeks and a 50% chance that we will end up back in Milwaukee next week.

To add to our frustration, we were only home an hour and Sam had already destroyed another dressing.  

 Tonight when I checked on him 45 minutes after he went to bed he had already worked his way out of the wrap that we put around him to protect his line and dressing from his hands. 

It does look like we will at least be home for the weekend so we are moving ahead with plans for Sam's birthday party.   I may sleep through it though.

Tuesday, March 2, 2010


We are still inpatient and I have grown extremely impatient.

There are certainties that we will have to deal with during every admission whether it is in Milwaukee or Boston.  Some good and some bad. 

These are teaching hospitals which means a lot of students.  Typically these people have no bedside manner and very little experience.  Combine that with their superiority complex and "I know everything" attitude typically leads to confrontation.  With that being said, I somehow managed during this stay to meet not one, but two, residents that I didn't want to hurt.  It was refreshing to talk to a GI and surgical resident who actually wanted to hear about Sam's history, wanted to hear my input, and actually showed in interest in Sam instead of trying to shove their almighty and all knowing wisdom down my throat.

Unfortunately other things have not gone as well.  The hospitals investigational review board has denied our request to continue Sam's "investigational" therpary (a.k.a. Omegaven, the one thing that made Sam healthy and doesn't damage his liver).  I won't go into a lot of detail on this, but pretty much the entire day Monday was spent trying to work out a solution.  It just isn't going to happen.  More about this later.

The plan since yesterday was to continue IV antibiotics and give Sam's site a chance to heal.  We want to do everything we can to try to save his line as there are only so many places that a line of this type can be inserted and we don't want to use them all up.  This plan means leaving the hospital on Wednesday and going home to continue antibiotics.  The plan is a good one and I was hopeful that we could at least extend the life of this line.  It does appear that the infection got to the cuff on Sam's line.  It is extrememly hard to completely get rid of the bacteria from the cuff so there is a good possibility that even if we can get the infection under control and if we can get the site to heal, the infection could come back at any time.  We have seen this before, sometimes as soon as we stop the antibiotics the infection comes back.

I was hopeful that things would go as planned and that we would be heading home on Wednesday.  Tonight we changed Sam's dressing and I am not quite as hopeful after getting an up close look at the site.  In my opinion his site looks worse today than it did yesterday.  I will still give the antibiotics a chance to work, but I am nervous about leaving the hospital with his site in this shape.  Part of the problem lies in the fact that once we are discharged, we are two hours away.  The other part of the problem is that is is really not healthy for Sam to be in the ER for another 7 to 8 hours if we need to be readmitted.  Our other option would be to try to wait this out and have the line changed in Boston as we are scheduled to head there in two weeks for clinic.  At least then we can avoid the ER.  Neither option is very appealing.

Sam is bored and ready to get out of here.  We are ready to celebrate the fact that we have beaten the odds and we want Sam home this weekend to celebrate with us.  I do not like to have to make these decisions that can have such a huge impact on Sam's health and I am not looking forward to rounds tomorrow when I have to voice my concerns.

There is also the fact that as it stands right now we will not be able to supply Omegaven to Sam while we are inpatient here.  Whether we extend this stay or some back next week this problem is not going to go away.

We have been considering making some major changes to Sam's care team for some time now. At this point I am not really sure what that means.  Something has to change.  We are stuck in a situation where our belief is that in order to maintain Sam's health in the best way possible we need to continue to participate in the Omegaven study.  Unfortunately that means traveling to Boston every eight weeks.  I am not entirely certain how much longer we can do that. 

Each trip out there just got more expensive as Sam tunred two and is now required to have his own seat on the plane.  Each trip, with travel, lodging, meals, cab fares, and whatever else comes up costs between $1500 and$2000.  On top of that, we have to add the expense of lost wages for both Deb and I as we take a varying amount of unpaid time off of work to manage all of this.  It also means that the team that we rely on for the majority of Sam's care is over 1000 miles away from us. Due to ego's and hospital politics this also creates additional problems when we need to seek care closer to home.

We know that something has to change, but we are just not certain what that is yet, our current hospital stay has really driven home the fact that our current situation is not ideal and is not best for Sam's health.  Our optimal situation would allow us to pick out the best parts of each team and move them all into our basement.  Since that isn't going to happen we need to look at what is best for Sam and try to make it work.  That will most likely mean eliminating some parts of our team and including new parts.  It may mean completely moving all of Sam's care to a new hospital. 

Hopefully during rounds in the moring we can finalize a plan for our current infection treatment and decide how to proceed for the next few days/weeks.  Deb and I are also going to decide tomorrow whether we think we are going to be home on Saturday and move ahead with party plans or cancel everything and try to plan for later.

Monday, March 1, 2010


We are inpatient at Children's Hospital of Wisconsin.  Sam site is indeed infected once again. We started antibiotics this morning and I am still holding on to a sliver of hope this morning that we can save his line. 

Sam and I spent almost 7 hours in the ER last night and finally got up to our room around 2:30 this morning.  We both managed to get almost three full hours of sleep in before shift change and rounds.

Today we are just hanging out waiting to talk with everyone and coming up with a plan for the next few days.

I will update more later today once I get my computer (which I somehow left by the back door at home).  It is hard to get out of the room to use the computer in the lounge so I will most likely not update during the day today.