Thursday, November 15, 2012


Will had a decent nights sleep. He had a lot of coughing till about 10:30 p.m. then  I managed to get him to sleep sitting up for a while to help with drainage etc. He woke up coughing during the night a couple of times, but nothing like I thought it was going to be.

This morning he woke up like a new little guy. Smiling, snot was nearly gone. Literally yesterday it was a constant drip. His cough is still here, but it's not like anything it was. I really had no idea what to expect today, and was assuming it wasn't going to be good. I guess when you throw everything except the kitchen sink into the little guy, good things can happen.

Still not in the clear yet, but looking and sounding much better. His energy level is much better. His appetite seems good - he chowed down some pumpkin muffins that a friend dropped off (thank you Christi!) and he helped me make banana bread this morning.

One thing that became crystal clear to me though is this... we need to rethink our pediatrician situation. I mentioned in my previous post that on Tuesday we took him to the pedi. I love the pedi office we go to, everyone is very nice, attempts to be understanding about mito and our doctor is very proactive.

However, they simply don't get how aggressive you have to be with mito. I don't know if I fully understood either until just now. On Tuesday, the temporary pedi that you just get assigned to when you call in sick and the whole place is booked up was nice, pleasant and meant well. She gave me a prescription for antibiotics that I could choose to have filled.

Now granted, it was a full 24 hours later when the immunologist saw him and he had continued to decline and she's a specialist, not a pedi, but she was AGGRESSIVE on treatment. Much more than the pedi. I'm not sure what I'm going to do about it, but I wish there was a pediatrician who worked in the mito clinic. I just realized how much more careful, aggressive and vigilant I should be when it comes to Will being sick. (I often think is that actually possible, but I realized I could be).

I just reread my sentence, there are many people who simply wish they had a mito specialist that practiced in their area, much less some special pediatrician who understands mito. We have a long way to go with mito, but we are so in the right place with Dr. Koenig, Dr. Pacheco and the clinic. For that, I'm very thankful, a girl can dream though right?

One week till turkey day! Looking forward to visiting with family!

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!

Monday, November 12, 2012

Happy Halloween

Eh, I know I'm late, but better late than never. Will decided to be a pirate this year for Halloween.
We started the day off with a Halloween parade at school, special snacks and then trick or treating with my parents, my sisters, bro-in-law, Carson, Cameron, the Gell's and whoever else we happened to meet along the way. My sister took at the trick or treating pictures, so the Halloween parade will have to suffice for this post.

Arrr Matey!

Star wars, Uncle Sam, Pirate, Wonder Woman and Spider Man looking like they are up to no good during the Parade.

One of Will's many girlfriends :-)

Cameron aka Woody from Toy Story was NOT into his costume this year.

Will and his angelic teacher, Ms. Monica

Where is the candy people?
We also celebrated in spirit with Will's new and ONLY girl cousin, Sophia!! The cutest witch I've ever seen.