2-19-2014 Sarah's 8th infusion

When we were in the doctor's office last week, they decided to up the dose of her infusion.  In talking to the pharmacist at the home health company, he said that we should go to 3 sites instead of 2 because of the increase in fluid.  Because of the issue we were having with the tubing before, I asked that they make sure that the tubing they sent for 3 sites was more like the second set of 2 site tubing than the first kind (clear as mud?).  Anyway, the next shipment got here, and the tubing was by a different manufacturer, but still seemed like it was more like the tubing we were having trouble with.

Wednesday, we were ready to do Sarah's next infusion at the new dose.  Here are pictures of the new dose and the new needle set. 

 

 

 

 

So I got Sarah set up with the 3 sites to do the infusion across the bottom of her abdomen. 

 

 



 

 

The medicine started leaking out of the two sites on the sides.  I shut the pump off, and taped it all down well using medical tape (we already use tegaderm to hold it in place), assuming that the needles popped out of those sites.   I turned the pump back on and it was still leaking the medicine. 

 

I asked Sarah what she wanted me to do.  She said she wanted me to use the tubing with two sites that we know works even though it would be a lot of fluid in those two sites.  And she did not want those two sites in the same place where I put the other 3 needles.  Part of the problem with that is she seems to tolerate the infusions better when they are placed lower on her abdomen, and with adding even more fluid, I was concerned.

 

 

 

We decided to do her patch time at the same time because we didn't have time for this infusion to take over 3 hours, and then do 2 hours of patching, and then do 30 minutes of visual therapy.  She is allowed to play on her tablet as part of her patch time, and she is enough out of it during her therapy that is all she opted to do.

 

 

 

This was her stomach immediately following her infusion.

This was an hour later, so as you can see, the swelling is going down at a pretty good rate.

And this was 2 hours after her infusion was finished.

She was pretty sore the next day, and opted not to do gym or recess.  She is still a little sore today, but did play at recess and hasn't taken any Motrin or Tylenol.  She still wants to just use the two sites.  I need to call and talk to the pharmacist and find out if it is really an issue to use only two sites or if he can send me different tubing.  The needles on this tubing (even though they are the same size as they are on the 3-site tubing) just seem different.  They "pop" into her skin better.  Or maybe she just doesn't have enough fat to accommodate 3 sites?  I don't really know.  Anyway, it is a conversation we will have next week with the pharmacist or the doctor.

Visual therapy is going well.  We can definitely tell her "bad eye" is getting stronger.  It is hard work for her though.  She sees the eye doctor for a progress evaluation on Monday, March 17.

2-11-14 Updates on visual therapy, labwork, and medicine

So Sarah has still been fighting a sinus infection after going off her clindamycian the beginning of last week.  I took her to the doctor today because I knew she needed to go on a 30 day course of antibiotics like Anna is currently doing to get it all out of her system.  Her lungs are clear, but she is definitely fighting a sinus infection.  She gets them chronically and are difficult to get rid of.  She has been on 4 rounds on antibiotics since November, and each time, as soon as she goes off them, the infection is right back.  This should really help though.  Her lungs sound clear, but her spirometry numbers her way down.  Last time when she was healthy, they were around 110.  Today they were around 70.

They also did get Sarah's labwork back that we had done last week.  We had it done right before we did her last infusion, so she was in a "trough" instead of a "peak", so we were especially  pleased with the results!

- Her CBC is all totally normal.

- Her T cells and B cells were both slightly elevated, which indicates she is fighting off an infection

- Her IgG is actually HIGH.  Now the immunoglobulin therapy can skew that, but since it was the end of the cycle and right before her next infusion, it is also her own body keeping it up too.  Also, her IgG was in the normal range before, but the doctor said that just because it is good "quantity" doesn't mean it is good "quality".  But, before it was in the 800-range and now it is over 1300!

- Her IgM and IgA are also both higher than they were before.

- AND, when we first drew her blood back when she was 2, and she hadn't had any extra pneumovax shots, 13 of her 14 strep pneumo titers were sub-level.  As she has gotten 4 extra pneumovax shots, many of those had come up, and I think only 5 or 6 were sub-level last time we checked.  With this bloodwork, only 4 are sub-level, and the others are a lot higher than they were!

SO, we know the IG Therapy is working.  We just have to find the right dose.  So, we are upping her dose from 8 grams to 10 grams every other week.  It does mean we have to add a third infusion site (so instead of 2 needles, we will be doing 3), but I am confident that between the big antibiotic push and the new dose, she we can get her to where she isn't getting sick as often.  Her illness are less severe, and she looks better and feels better overall, but they aren't less frequent yet.


Sarah also had her 2nd visual therapy (VT) appointment today.  The therapist checked on the stuff she was working on at home this week and was pleased with her progress.  This week she is focusing more on focusing.  So, she will have to look up at a letter chart 8-10 feet away and say and copy each letter in upper case and lower case.  And she will have to follow along paragraphs with "random" letters.  She underlines, and each time she comes to the next letter in the alphabet, she has to circle that letter.  If she misses even one (meaning she isn't really following along and focusing on each letter), she will not get to Z in the paragraph.  She also has to use "flippers" (one side is a +1.00 and one is a -1.00) to read letters and numbers.   This works her hard.  She will go back next week to see how she did with this week's activities.

2-5-14 7th Infusion and other updates

On Monday, I had to take Sarah to get her labs drawn to see if and how the infusions are affecting her (hopefully for the better).  We should have the results back next week, and I am so curious to see what they show.

Tuesday, Sarah had her first visual therapy (VT) appointment. Her appointments are 330-430 on Tuesdays.  In watching her therapy, it was very apparent that she needs to do this.  Fortunately, we are blessed that one of Zach's teammates will take him to soccer on Tuesdays so we can keep her appointments.  And since she has early release about twice a month, I should only have to pull her out of school early about twice a month.  Then she also has 30 minutes of homework a night to help her progress.  It doesn't sound like much, but it is actually difficult and tiring for her.  Here is one of her activities from yesterday.

Yesterday was Sarah's 7th infusion.  Because the last two were messed up, I talked to the home health company and explained that I thought the tubing was having issues.  We use different tubing every infusion, but this batch seemed like it was a lot thinner than the other ones.  The pharmacist did some research and sent me new tubing from a different manufacturer.  This tubing seems to be a lot thicker, and we were back down to a 2 hour infusion time again.  And it went in equally in both sites.  I am very happy because I was getting frustrated with the other, as was Sarah.  Sarah is so brave, and really doesn't get nervous about having to do this any more. Giving her the Benadryl and motrin really helps her not have a reaction to it.

This picture is the infusion sites immediately following.  She did get up and move around, and even sat at the table to eat dinner while she was having it done.

These next two pictures are only about an hour later.

 

 

The swelling is really good, and she is just slightly sore.  But she still has been horsing around with her brothers and sister today, so she is feeling good. 

Sarah just finished her round of clindamycian, but she is starting with a runny nose again.  She also had a bit of a temperature (around 100) on Tuesday night and Wednesday, but it seems to be gone today.  They have had 3 snow days this week, so Sarah has had some time to recover and will go back to school tomorrow.  Her next infusion will probably be on Wednesday, February 19th.

Sarah is getting frustrated with all of the stuff she has going on right now, and I know she would appreciate your prayers.  She says "Why does everything happen to me?  And why do I need so many therapies?  Speech therapy, immunoglobulin therapy, and vision therapy."  That is a lot for a 7 year old, I think.  But she is so good about all of it, and overall has a good attitude.  She is looking forward to starting soccer again next month too!