Wednesday, January 15, 2014

Infusion Fail

  In December the day after treatment Squeaker was grumpy, groggy and had terrible stomach pains. We called the Immunologist's office and let them know. These were not good symptoms for Squeaker to be having. It meant she was having a delayed reaction to the infusion. The nurse talked to the doctor and decided to change the infusion protocol and see how Squeaker did.
    A week and a half later Squeaker was on steroids and antibiotics for a cold, sinus thing. It wasn't fun but it was nice to have the extra protection while we traveled to see family for Christmas. Squeaker did great with all the travel, and managed to not pick any other bugs up.
   January 7th we had our second infusion, using the new protocol. It went really well, not nearly as rough on Squeaker. A little longer but she was happy the whole day, except for the part where they had to stick her twice. But otherwise infusion was just fine.
   January 8th turned out to be awful. The grumpy and groggy came back, which on it's own is pretty normal, but then it hit. The vomiting, just as Squeaker was passing out to sleep. Up came everything she ate that day. And I mean EVERYTHING!! Undigested chunks of mac&cheese, fries, chicken, bread, mucus, orange juice, just *shiver* everything. I have no idea where she stored that much inside her little body. But by seeing that things were undigested meant that Squeakers stomach was paralyzed. Paralyzed stomach is one of the worst things we have to deal with. It can last anywhere from 12 hrs to 7 days was our longest. When it happens you have to watch everything she eats. Foods have to be simple and easy to digest. Lots and lots of fluids and you have to be careful how much she eats, even if she is starving. The only way to know that it has passed is to feed Squeaker something heavy and pray it doesn't come back up. Squeaker never threw up again but the pre-vomit cough was still heard for three days after.
   Of course I called the nurse about this. She talked to the doctor and instantly it was decided that we were no longer going to be infusion therapy. We will be trying SubQ next month. SubQ is short for Subcutaneous Therapy. It is where instead of using and IV to administer the medicine it will be injected just under the skin so slowly dissolve and be absorbed into the system. 

Upsides To Sub Q
Doses are smaller. There are less reactions to SubQ especially in patients like Squeaker that doesn't tolerate the IVIG well.
More balance protection. The ups and downs of SubQ are almost nonexistent.
It's done at home. No more traveling to Birmingham at 6am.

Downsides to SubQ
It's done at home. A nurse will come out to teach us how to give Squeaker her shots. Oh fun! NOT!
More balance protection. It's more balance because it's more often, we are going from monthly to a weekly treatment. Blech.
Doses are smaller. Well maybe this isn't really a bad thing. It just makes me feel like if I screw up I've really screwed it up.

Boy the things parents do for their children.

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