3-5-14 Sarah's 9th Infusion

Sarah has still not gotten over whatever she has been fighting for months.  In talking to the doctor last week, we opted to stop the antibiotics (since it wasn't helping anyway), start some prednisone, up the use of the nasal spray, give more albuterol, and see how she did.  I have been feeling frustrated because she still runs an occasional low grade temp, and is still sick A LOT.  However, I was thinking about it, and I don't think she has really missed school since we started the infusions.  Before, she was missing a lot of school, and it was usually 3+ days at a time, and running fevers of 103 or more for many many days at a time.  She is definitely showing improvement.  I also spoke with the doctor yesterday, and we started the prednisone back up and check in again tomorrow.  We have an absolutely amazing doctor's office who are always willing to answer questions and are so supportive and helpful to us.  I am so grateful for Denice (the nurse practitioner we usually see) and Dr Kanarek, and the team they work with at the office.

Before this infusion, I called and talked to the home health company about the issues we were having with her last infusion.  I told them about the tubing that had worked well for us, and that I wanted something by that manufacturer.  The nurse I was speaking to looked it up, and that manufacturer did not make 3 site tubing in the exact size needles we were using.  Our old needles were 27 gauge (which is how big around they are ~ the larger the number, the smaller the circumference) and 6mm long.  Our options with that manufacturer and 3 sites were 27 gauge needles that were 9mm long (so same size around but 3mm longer) or 24 gauge needles that were 6mm long (so bigger around, but same length).  He sent me two sets of each so I could decide what I wanted to do. 

Initially, I my thought was that the needles maybe needed to go in deeper to stay in her better.  But, yesterday I had a moment of panic and asked some of my nursing friends what they would suggest.  It was 50/50, but part of the thought process was that if she didn't have much fat anyway, the longer needles may get into the muscle.  And, that since we upped her dose, maybe the problem was that the medicine was thicker and leaking out of it because of that rather than the needles not being in her.  I didn't necessarily think this was the case since we went to the 2 site set, which was the exact same size needles and it worked just fine when we were having problems last time.  But, I decided to try the 24 gauge (bigger around), 6mm (same length) needle set. 

I LOVE the tubing made by this particular manufacturer!  I hear an audible "pop" when I put the needles in her skin, and I just know they are in right.  I also moved them closer to the center of her abdomen and made less space between each site.  Initially I had been told we needed at least an inch between sites.  I was told recently that half an inch is totally fine.  And this infusion went well!

This is Sarah watching Frozen while getting her infusion

 

 

This infusion took exactly 2 hours, which was great.  Because of the time it takes for the medicine and numbing cream to kick in, we didn't start the infusion until 5pm.  We had an Ash Wednesday service to attend at 7.  We opted to take Sarah (infusion and all), which she was not happy about.  She thought people would laugh at her or ask her about it.  No one did, and she was finished right when church was starting, so I just took her out, took out the tubing, and we went back in.

This was immediately after her infusion.  Remember she is now getting 10g of medicine in 50ml of fluid.  That is a lot of liquid for a little girl.

 

 

 

This was about an hour and a half after the infusion was finished

 



And this was this morning, or about 12.5 hours after the infusion was finished.

She says she isn't too sore this morning, which is good.  Her next infusion will be Wednesday, March 19.