Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, November 23, 2011

Two Month Check Up

Meagan had her two month check up today.  Everything seemed to check out well as far as the normal stuff.  Her weight was 9lbs 1ounce - a little skewed because her head circumference has also gone up 2cm in the last week due to her shunt flow change, but, nonetheless, a lot better than her 7lbs a month ago! I can tell she's "chunking out" in her clothes too.
She is a tall girl - just like her oldest sister, and her 4th sister.  She is 22 1/2 inches tall - in the 60% for her age.  Must have another one that takes after her daddy!  Her head, of course, is off the charts.  At least we go beyond the 100th% in something! LOL .  It looks good though - how it should look with her new shunt setting, and so far, her soft spot and sutures still feel great too.  I'm glad Dr. Reisner turned down her flow.. the Pediatrician said she can really see a difference in the sutures and hopefully it'll stop them from fusing early. 

She checked her vision and other developmental milestones.  She said the good thing is she is pretty sure Meagan can see - she does look to light in a dark room and she will look around the exam room... but, she can also see that when Meagan tries to focus, her eyes wander and/or cross still.  She said this really 'shouldn't' be happening anymore.. but because Meagan is a bit delayed, to give it some time.  If in a month we still see eyes crossing/wandering when she's trying to focus on faces or objects, we'll call the vision doctor back and go from there.  That's fine with me - I was just happy to hear that Meagan is probably seeing things :)

As for other developmental things, she said to be patient and we'll see how it unfolds.  She put her on par with about a 3 week old baby  ... so to look out for things that would come next like more focusing, more interest in her own hands, smiling when provoked or awake, etc.  She said we'll re-evaluate all these milestones at her 4 month check up and in the meantime, to mark when she does do some of these things, and continue to follow these developments with her OT and PT at home. 

We discussed Meagan's spasms/movements again.  I brought in the videos and the Pediatrician was able to see them. She agreed something was off and we needed to definitely watch them.  She went over Meagan's EEG report with me and said that the Neuros had been specifically concerned about Infantile Spasms... which to our relief was not the case.  Her EEG came up 'normal' during the activity the Neuro had originally thought looked like IS.  We continued to talk about Meagan's history, and one thing that came up as a little 'red flag' was the use of metaclopromide when Meagan was in the NICU.  Essentially, it's "baby Reglan," and it's used for digestive issues.  Now Meagan needed help in digesting her food in the NICU .... after every feed, they would pull her residuals and it would be almost the entire feed.  Food was not going from her stomach into her intestines, so she did require some sort of motility drug to move the milk through her system.  HOWEVER, we were never told about the risks of the motility drug they chose to use.

After research and looking back through Meagan's medical papers, we now know she was put on the motility drug, that according to every medical site we've read and others we've talked to, should only be used as a LAST resort for digestive issues. And she was on it, in quite a good dose, for almost 4 weeks. The cautionary phrases about the drug are because it does have a risk of nervous system damage - which can cause unusual involuntary movements and/or spasms.  It's only skimming the surface to say that Brian and I are extremely angry over this.  If this drug was what they HAD to use for Meagan, where were the doctors, CNPs and nurses - ONE of them - making us aware of the risks of the medication? We were at Megan's bedside for 8 hours a day, almost everyday for 4 weeks.  There were plenty of opportunities for them to make us aware of what they were giving her, and the risks it carried.   Most doctors give heavy warnings with this drug - and we were told nothing.  Also, most of the time, parents have to sign a release for this drug to even be used on their child.. AFTER knowing all the risks it may come with. Yet were we ever told any of this? No.
As the mom, I am livid over the lack of communication from the NICU doctors to us regarding medicines administered to Meagan.  And this is the second time (that we know of) because we also were not told when Meagan was put on two heavy anti-seizure drugs for her being fussy. Yep, just fussy. The worst part is when she was on those drugs, we even called in to check on her and NO one told me she was crying/fussy.. and NO one mentioned they were going to put her on two extremely heavy drugs.  And they even wanted to send her home on those drugs until I said No.  So now the fact that we didn't even know the heavy risks of this motility agent.. with it having such possibility for adverse side effects.. really gets my goat.  I am by no means anti-medication or anti- doctor... matter of fact, I'm very much the opposite.  But, there HAS to be a balance of knowledge between the parents and the doctors.  Hands down, we should have been told of the risks associated with this motility agent.  It would have at least given Brian and I the opportunity to say "Ok, it's worth it because her digestion is really that bad..."   or ... "You know what, considering the risks, can we try another motility agent first with less adverse side effects?"  It would have at least given us a say, and we wouldn't be having these "would have, should have, could have" moments now.
Of course, it's not a guarantee that this drug is what caused Meagan's spasms - but - it is a decent possibility and we need to look into it.  Luckily, our Pediatrician is very good and is going to do some research - and we are also going to try and figure out why we were not kept informed by the doctors at Children's of such risks.  Meagan has enough to deal with from her Hydro - it would have been nice, and at the very least, respectful, of the staff to let us know of any serious risks to medication she was given ... especially without our knowledge.  We will keep watching her spasms... her doctor said to keep taking videos.  She said if they ever increase in intensity or frequency to please call the Neuro asap so we can keep investigating what may be going on with our sweet girl. I'm sure this is the first of many frustrations to come in situations where "x fixed this.. but now could have caused that" .... and we will take it all in stride.  But in the future, I hope doctors are more up front with me about Meagan's medications and what risks they pose.  It is my duty as her mother to help her in the best way possible, and this means mitigating any possibility of further damage by medications.. but I cannot do my job, if the doctors don't do theirs by keeping communication lines open.

Checking out some college basketball (it was the Duke game so I don't think she was very happy.. GO XAVIER!) ;)

Hmmm.. I look pretty darn tired here! Getting some snuggles from my oldest and Meagan.

Meagan rocking out her Fuzzibunz cloth diaper at her 2 month check up.

Her favorite (and only) place she will sleep for a little bit- on her tummy on my chest.

1 comment:

  1. I'm with you, Molly. I can't imagine the doctors administering drugs with side effects that would have an impact on your lives later. Personally I think Meagan looks wonderful. She is such a little fighter!
    Happy Thanksgiving to the Gareau family.
    Hugs, Karen