12-24-13 Sarah's 4th infusion

Sarah had her 4th infusion yesterday on Christmas Eve. She still has a runny nose and a bit of a cough, but overall seems to be doing better on the antibiotic. She was worried about this infusion because she was still bruised and sore from her last one. I decided it change the location a bit and moved it down on her abdomen to see if it would help. The second infusion went so well that I was looking for that result again.

Moving it seemed to do the trick!  She hasn't complained at all about being sore, and the swelling from the infusion was already down significantly last night. She went to our Christmas Eve service and was even playing with her brothers last night and today.

Her next infusion will probably be Wednesday, January 8. I am waiting to hear back this week about upping Sarah's dosage and adding a third infusion site.

I will add pictures from this infusion tomorrow.  

Still sick and eye issues

Sarah has still not gotten over her crud.  After running a fever off an on, and coughing a ton, along with a runny nose, I took her back to the doctor Friday.  (She gets frequent sinus infections and left untreated, they drain into her lungs and then turn into pneumonia.  Her lungs were getting to the point that they would sound "junky" and she would be wheezing, but if she coughed, she could clear them.  Often within a few days, it will turn into pneumonia.)

The good news is that her numbers from her spirometry test were the best they have ever been!  So her maintenance inhaler for her asthma is working really well.  But, her lungs did sound icky until she coughed, her nose is full of "gunk", and you can tell just by looking in her eyes that she feels crummy.  The doctor put her on an antibiotic for another sinus infection.  She just doesn't get over stuff on her own.  Ever.

This doesn't have anything to do with Sarah's immune deficiency, but Sarah had an eye appointment this morning.  It turns out that one of her eyes is way worse than the other.  She needs to see a pediatric optometrist to find out if he wants to do visual therapy on her or just put her in glasses.  We will call Monday to make an appointment.

Sarah's next infusion will be Tuesday, December 24.  When I took Sarah in on Friday, the doctor and I talked about upping her dose on the subQ IG, and also maybe adding a 3rd infusion site instead of the 2 she has now.  We also talked about moving her to weekly, but still upping her dose too.  She was going to talk to the nurse and the pharmacist and see what the plan is.  We should know more next week.

12-10-2013 Sarah's Third Infusion

Sarah hasn't been feeling too great lately.  She has had a fever off and on, and her nose has been running and she has been coughing.  In speaking with the doctor today, we decided to hold off on antibiotics and see if she can fight this off on her own.  We may still end up on antibiotics later this week.

Today, we did Sarah's 3rd infusion.  It is the first one that I have done by myself without any help at all.  It went fine, and the emla cream really helps the needles not hurt going in.

There are a lot of pieces to doing this infusion.

This is the medicine itself.  It is made from human plasma, and has the antibodies to fight infections.

First, you hook the syringe

 

up to the spike

 

 

Then you push the spike into the first container of medicine.  You pull back on the syringe until you get all of it in the syringe.  Then you repeat with the 2nd vial.

Then you hook the flow control tubing (I believe this is the tubing that tells the pump how fast to infuse the medicine) up to the syringe.

Then you hook the infusion tubing up to the other tubing.

 

 

After that, you prime the tubing by slowly pushing down on the syringe and watching the medicine go through the tubing until it reaches just above the needle.  Then I insert the needles into her skin and hold in place with Tegaderm.  Then I put the syringe in the pump and turn it on. The infusion takes about an hour and a half.  Then we remove the needles, cover the infusion sites with gauze for leaking, and we are done.

 

I am hoping she will feel as good after this one as she did after the last!