Wednesday, November 14, 2012

Surprise: IVG Starts and He's Sick

Well, the SubQ IVG started today and Will is sick so great timing.

On Monday,  we finally got a call from the immunlogist's office (Dr. Pacheco) to schedule the start of IVG with a start date of Nov. 20; then that didn't work out with the IVG provider; then the date moved to Dec. 4. Fine, a long time away, but fine. I pushed back a little bit, but that appears to be the date. Will started a runny nose, congestion and cough during the weekend. It's just kind of progressed fairly rapidly by the end of Monday.

On Tuesday his congestion and cough were bad enough to keep him home and head to the pediatricians office. He was all clear - no wheezing, ear infection or chest congestions! (IVG) About 3:30 p.m. I get a call again from Dr. Pacheco's office asking if we can come in the next morning to start IVG, we agreed to 8:30 a.m. Talk about random - to go from Nov 20 to Dec 4 to Nov 14.

So, on Wednsday morning, Neil and I get down to the med center after a few unpleasant Will time-outs. He seriously woke up on the wrong side of the bed. About 9:15 a.m. we are notified that the IVG company is "on their way" - from where I'm not sure. She arrives and we get back to a room about 9:45 a.m. (Just to clarify, yes, that 1 hour and 15 minutes AFTER we were told to arrive).

I'll explain the IVG process below, in a minute.

Since we were at the immunologist's office, Dr. Pacheco did an examinamtion of Will and ordered an antibiotic and steriod to help with the cough. We also did his flu shot at the same time. So, I'm not sure what Will did not get today... IVG infusion, antibiotics, steriods, flu shot and all his usual meds. I'm sure his little body is saying HUH?? He's laying in bed coughing as I write this so I'm sure it's going to be a long night. We'll just have to wait it out till it clears, at least we have medicine and Nose Frida on our side.

The IVG process.... you can read more about SubQ IVG on a previous post. Essentially, it's a couple of tubing, the medicine, a needle and a pump. The nurse was great and walked us through the assembly. First you numb the area and wait 30 minutes for it to take affect; then you hook up all the tubes, get your materials and meds ready; then you take a butterfly needle and "like you're throwing a dart" pinch up a chuck of fat on his upper thigh and insert the needle. Tape it down, turn on the pump and wait for the meds to drip in.

Any when I say wait, I mean wait... it takes an hour and 30 minutes for everything to drip into his system. Neil stayed for the fun part then had to get to some meetings; I was so thankful he was able to change his schedule so last minute so we don't screw it up on next weeks infusion.  My partner in crime is pretty awesome. If all else fails, there is a large manual we were sent home with, complete with pictures and an oncall nurse.

After the drip finished, Dr. Pacheco came in to exam him. See assessment above. We did the flu shot and off we went.

So yes, we arrived at 8:30 a.m. and did not leave the med center till 12:30 p.m. How very festive. We did leave with about six stickers (one for both cousins), three bandaids, a bag full of IVG supplies and a VERY pooped Will (and mom).

It's crazy though on the IVG, you are pushing 10 ml of liquid into the fatty part of your thigh, right under the skin. The liquid slowly distributes through the body over the course of 24 - 48 hours. So, it looked like he was growing a golf ball under his skin. It has since gone down significantly and this is a normal side affect. There are other less pleasant ones that I won't bother to describe, but suffice to say we have two EPIpens in the house now in case things go really bad. Which they shouldn't, but just in case.

So, moving forward we are to do these infusions weekly, every seven days is the goal, but you have some flexibility. In regards to him being sick, we're going to keep him home from school at least tomorrow and likely Friday as well to get him back on track. Plus, we want to keep a close eye on him after the infusion. Since it takes 24 - 48 hours to absorb, any effects will take just a long to see.

I actually think I might be going insane though. The ipad with the movie to keep Will occupied died midway through the infusion;, listening to the non-stop coughing; we caught literally every single red light home today; I shamelessly drove thru Whataburger for lunch and they didn't include Will's chicken nuggets.

Tomorrow is going to be a better day. Today was a good day in the grand scheme of things, we started the IVG which we hope will ultimately keep him here longer.

There are so many things afoot this week in our life and this has been a surprising turn. I guess that's good so I didn't have to dwell on the whole "grab a chunk of fat and throw a needle in your kid" thing.

Will spent the afternoon on the couch watching his favorite purple dinosaur. I spent the afternoon doing Nose Frida, boogie wipes, refilling the humidifier, filling and administering meds and in general loving my little guy.

I had great intentions of cooking dinner. HA!


  1. you are a rockstar and whataburger is AMAZING. Enjoy it - you deserve it!

  2. Sorry to hear that Will is sick with the crud, but happy to hear these meds are available for him to start sooner than later! Get him well so you can all enjoy a Happy Thanksgiving!

    Judy Hayes

  3. Wow... just another day in your completely extra-ordinary life. Big hug, Lori.

    Anytime my life threatens to push me over the edge, I always got to Whataburger and order a chocolate malt and a side of onion rings! Good call on that one!

    All my best to you guys. Hope Will feels better soon. xo

  4. Overwhelmed just reading this. This seems like such a huge job to do at home. I hate that just when the weather cools down and the heat is no longer an issue for Will, cold and flu season descends. What a bad joke. I hope this IVG thing helps knock out this new congestion thing. Glad to hear no ear infections, etc. As always, you seem to find the silver lining. You are AH-MAZ-ING, Lori. In case you need a good laugh, I have two random links to share. The hater's guide to the Williams Sonoma catalog: And news anchor fail 2012: The second one had me gasping for breath. Sometimes one just needs a good laugh, no? Also, they really forgot Will's nuggets? Seriously?! This just pushed me over the edge. What a day! Hope you got a good night's sleep and tomorrow is better. Ay yi yi. Biggest hugs to you, mama!

  5. I we miss you Willy Wonka Get Well Soon!!! I need my Big Hugs!!

    Ms. Monica