Saturday, September 10, 2011

NICU reunion

Today was our first trip to the annual Cardinal Glennon NICU reunion. It was great, and it was especially nice seeing familiar faces without any procedures, pain or illness this time!!
Saying hi to our favorite neonatalogist :) Dr. Anderson... She has helped us out so many times! She also reminds us of our favorite nurse in the world...Aunt Candy :D (Mason did not really want to smile for this one...he has mixed emotions about all medical personnel in general ... can't imagine why ;)


Visiting with some of his sweet nurse friends too
Lots of fun things for the kiddos to do. Micah  liked the bubbles, face painting, balloon clown and music tent best
Despite forecast of rain, it was beautiful, hot and bright! So oops on forgetting the sunglasses...


Earlier this month we stopped in at the hospital to see Debbie, another favorite nurse, Lisa, and some others who took care of Mason during his stay. 

 Thank you to all the ones who have loved on Mason and helped him during some of his darkest days from August to November 2010! 
We appreciate you SO much!!

Here is the pic we left with the NICU staff to hang up in the unit to celebrate how far he's come -

Wednesday, September 07, 2011

It was the Best of Times, It was the Worst of Times...

Where do I even begin for this month? I'll start with the best stuff first...

MASON IS ONE!!!!!!!!!!!! 

 Of course, he had a Mickey Mouse party (who else?!) ..
 It's a pity he didn't get any presents.

Or that nobody had any fun at his party.


 He wasn't too convinced about the whole cake idea.


He got a rocking horse for tummy time (and his own lazy boy) for his birthday. He LOVES the fuzzy buzzy whinnying horse, especially it's flappy tail!
Naturally, he had his first pony ride...
 
He's had improvements in exploring objects with his hands this month...dry macaroni, wet rags, toys - all things he's been unwilling to touch much in the past!
And he's grown very tall this month. He was 31 1/4 at his well-baby checkup! As you can see, the walker came and went in about a week because he just is way too tall. But you can tell by the expression on his face how much he enjoys having a little control :D We can't wait to get him into something more his size that he can get around in....
 He has had so much progress in so little time!

The hard part has been that this month has been one of the hardest yet on him physically.

So many things happened at the end of July/beginning of August that sent things downhill....

1. he had an extra Prevnar shot to boost his immune response to strep/pneumoccocal (his leg where he got has been red and bumpy like this since he got it, over a month ago...). He has not had his 12-mo shots until we get some feedback on what is/isn't safe for him. He also got put on an antibiotic, Cefdinir, to be on "forever." Or until his immune function improves.
2. He had an MRI and the intubation caused stridor. The rest of that week he seemed unwell. He had a possible UTI but the docs are pretty sure the sample was just contaminated, so we didn't treat it.

3. As he got over the stridor, both boys got sick with a bad cold. Maybe 5th Disease due to the rash shown here. But maybe not. The rash might be something like hives from an allergy (no welts though) or a flushing disorder of some sort (he gets it worst when he's active/upset). Regardless, Mason ended up in an ambulance with respiratory distress the likes of which I haven't seen in him ever. He had secretions coming out everywhere. And blood. Nuff said. Scared is not even the word for how I was feeling that morning :( He was in the hospital Aug 5-7 trying to dry him out and get his oxygen saturations where they needed to be.
notice the bright "slapped cheek" look that was suspicious for 5th disease, along with the flat rash on limbs...


4. During all this he started having episodes of "spacing out". We called them "staring episodes" or "the frownies," because he frowns like this when he does them and clenches his fists/feet...
This is what happens during an episode (just very repetitious mouth motions):
video

 We were nervous these "frownies" were seizure related, and/or that he had an undiagnosed infection. We told neurology that we weren't sure what he was doing, but he was doing it a LOT. They ordered an EEG. And bumped up his Keppra in case he needed an adjustment for weight (hadn't had one in over 6 months, and he's grown quite a bit).

4. The day after the Keppra bump, he had a new kind of seizure. He lost all muscle tone and turned gray for 10 seconds or so. Very scary. He also had 2-3 of his classic seizures over the next week or two - the ones he hadn't had since April. His rash continued. The worst was the screaming that started. And didn't stop, for long stretches on end. He had an episode of screaming during the EEG. And throughout the next week, to the point of severe exhaustion for all. He had "the frownies" in the EEg too. It was an ordeal, to put it mildly.
The picture says it all ... I think we all looked about this way :(

We ended up back in the ER. He was not himself and he was screaming WAY too much. And having seizures. This only added to his misery but the docs assured us all his labs were "great" (the ones they were able to get back that night, including xray, ultrasound, CBC and urinalysis).
Two days later the ER called to say he had a UTI and we needed to put him on 3 mLs of nitrosomethingerother antiobiotic every 6 hours for 10 days (that's 12 mLs a DAY). Then urology and pediatrics called to tell us NOT to give him meds, because it was again, a "contaminated" sample most likely and not to listen to ER doc. Sigh.  And drs wonder why we have a hard time trusting them sometimes?

The EEG showed he was having seizure activity. No surprise there, we had seen it. BUT the good news and the surprise, was that "the frownies" were NOT seizure related! Brian and I asked to go back to his original dose of Keppra because the fact was that he had not had any NEW seizures until we'd agreed to the Keppra increase for the frownies (which weren't seizures!). And all the screaming had started after we increased it as well, not before. Just google "Kepprage." Both his pediatrician and ER docs agreed this medication is the #1 best guess as to his trouble :( They want us to "get all the junk out of his system and let's see what he can do!"

All this to say, as soon as his surgery is over in October, we want to go WAY DOWN on Keppra (and maybe off it altogether!!) He is on a very high dose (has been since he came home from NICU) and we cannot help but wonder how much of Mason's "syndrome" is actually being caused by this crazy med :( On its list of side effects are WEAKNESS (he has "severe hypotonia"), INCOORDINATION (hmm, like with swallowing/eating?? he ate his entire bottle right before he went on Keppra, after they forgot phenobarbital), irritability, immune deficiency ....ARRRRRRRRRRRGGG!! Are we detecting a theme here?? Needless to say I am heartsick about what this med may have done to him all this time (the simple fact is we have only seen Mason without seizure meds in his system for like 2 DAYS of his life. There's no proof he would even have seizures except under extreme stress off the meds. (And as I have mentioned, I have had a seizure too under severe stress but don't let ANYONE put me on seizure meds ever please, now that I see what they are capable of!!) Please, please please pray for us in the "going off" process starting next month, as withdrawing itself can cause more seizures, and his neurology may be very reluctant to help us :( But we truly want to see if he improves off this (and all) seizure medication.

Just since we have gone back to the old dose, his seizures have gone away (rash is still there) and I found him the other day having SCOOTED on his tummy completely off his blanket!!

Thank You Lord for revealing to us such a potentially HUGE piece of info and help us to be able to get our little guy back to himself very soon!! He has come so far... WHAT A YEAR!! :D

"The living, the living—they praise you, as I am doing today; parents tell their children about your faithfulness." Isaiah 38:19

Mason's Mix


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