Friday, April 22, 2011

(the dreaded) Sleep Study

I know I've been promising a post about the sleep study, but wanted to wait until we had results back and knew what our next step was before posting.  So, here goes...

Ella's "start time" was 7pm, so we arrived promptly and checked in, only to be told our sleep study technician was at the Westerville location and to please wait in the waiting area until his return.  Germy waiting rooms are my favorite, especially at a Children's hospital.  Fortunately, we brought the stroller, so we just kept Ella strapped in until he arrived.

The torturous process of gluing 15 probes to her scalp began about 7:30pm, and took nearly an hour.  This involved initially drawing lines on her head with a wax pencil into the different quadrants that the probes were to then be attached, to act as a map once the application process started.  The multi-step process for each probe involved: cleaning the scalp area with alcohol, applying a gel-like glue, setting the probe and applying pressure to get it to stick, covering the probe with a small piece of gauze drenched in yet another glue, and finally drying both adhesives with a small hair dryer of sorts.  Sounds fun, right?  And this was just what was attached to her scalp; she also had two electrodes on her chest, two electrodes on her legs, a snore pad sensor under her nose, a cannula in her nose, a CO2 detection tube in her mouth, and the familiar O2 sensor (ie "glow toe") attached to her toe.  Oh, and I forgot the respiration bands around her chest and abdomen (purple belt-like things in some of the photos) and last but not least, the arm restraints to keep her from detaching any of the above.  Needless to say, it took both Grahm and I, as well as the technician at times, to keep her restrained in order to get all of this on properly.  It was extremely difficult to keep restraining her when she was screaming and crying so much, but I just kept telling myself nothing they are doing is actually causing her pain and if we don't get all this crap on correctly, we'll be here doing this again - which is of course not what I wanted. 

Ella just after getting all hooked up.  Homemade arm restraints that they called "welcome bands", as she was quick to tear out one of the probes just after we got everything on and in an effort to keep her from doing it again...

Close up of all the probes, tubes, attachments, etc.  Ella had cried so much and so hard, her eyes were swelled :(   I know she's giving us that look like she'll never forgive us, but she's so quick to forgive! (hence the next picture)

Fake smiles by mom and Ella...

They tape all the wires together in the back so she's less likely to get tangled in them during the night.  How thoughtful of them!

Dad and Ella in the morning, after what I'm sure was a very restful night for both!

Calming her down really just took some TLC from mom and dad, a good squeeze on Mr. Rabbit, and a nice bottle of milk.  Ella was asleep by about 9:15pm, and was so exhausted she slept the whole night through.  Grahm spent the night, and I went back in the morning to retrieve them.  We were told by the technician that it was a "successful" study, in that they got all the info they needed and the study would not have to be repeated.

Ella's study came back with an index of 4, and anything greater than 2 is considered abnormal.  The index is calculated by the length of time slept and number of "episodes".  She was diagnosed (by the sleep study doctor) as having mild obstructive sleep apnea.  Ella's pulminologist from when she was in the hospital (who originally ordered the test as part of our bargain to get discharged) told me they would at this point defer to her ENT, but that likely she would need to have her tonsils and adenoids removed.  Hmm.  I thought we had ruled out obstructive apnea when she was in the hospital by doing the scope and xray?  After meeting with Ella's ENT, he explained that the scope and xray would only detect obvious obstructions (like a growth or abnormally large tonsils), but that you can still have obstructive apnea once you fall asleep and the soft tissue in your neck area relaxes and gives in to gravity, and your respiration's become shallower (normal during sleep).  He said that her study was very mildly abnormal, and would have been considered normal 5 years ago, but that standards have changed, etc.  He wants to only remove her adenoids, as that is a much less involved surgery for someone her age.  Apparently, a tonsillectomy at this age usually results in a re-admittance for dehydration, as their little throats get so sore they won't drink or eat and they subsequently get dehydrated.  Adenoid removal only should be out-patient, and we should hopefully be home by the afternoon, same day.  Surgery is scheduled for June 16th.  We figured since she was going to be under anesthesia, we would go ahead and have the tear duct procedure done too, why not?  So, the coordination of two surgeons and a busy operating room resulted in us waiting until mid June, but it will be here before we know it!  After a quick search on Wikipedia, I learned that adenoids aid our immune systems, but only until age 3, after which our immune systems have a more efficient ways of fighting off viruses and bacteria.

So, the results of the study are not exactly as I had hoped (of course I wanted them to be normal and for this ordeal to be over), but at least it is not central sleep apnea that would likely require O2 every night for sleep.  We gladly called to have the O2 saturation monitor (that's been residing in her bedroom since her discharge in January) removed for good.  No more glow toe!

A side note, the picture at the top of this blog is a year old this week!  I guess maybe I should work on something a little more recent...or maybe my photographer husband should!

Tuesday, April 19, 2011

Columbus Parent Magazine

I know we mentioned to several about the interview we did with Anietra Hamper for the April issue of Columbus Parent magazine, so I wanted to give the link to the article for all of you to read now that it is out in print and online:

Sleep study post soon to follow...

Sunday, April 10, 2011

Simple Pleasures

Well, where has another month gone?!  It's my favorite time of year, and like always, it's going by so fast.  We've been keeping busy with our many appointments, and life in general.  We have had the sleep study, glad to say that is over and done with; but I'm going to wait and post more detail and pictures once we have results back (should be this coming week).  So, I just wanted to get a few recent pics up for all of you to enjoy!

A bit on milestones.  I think, for the most part, the average person thinks of milestones for children to mean things like crawling, pulling to stand, standing, walking, etc.  Don't get me wrong, those are certainly milestones, but there are many, many more small ones in between that don't get celebrated or recognized...unless you have a child that struggles to achieve them.  In the world of physical therapy for a child with low muscle tone, there are so many steps in between all of those milestones I listed above.   Ella had missed physical therapy for a month, so when her PT saw her again after a month, she was so impressed at what she was doing.  She still army crawls like a pro, I swear faster than we walk, sometimes.  She's very curious, wants to know what's going on, and certainly doesn't want to miss anything.  She is getting really good at "pulling up", and this is a great strengthening exercise for her.  I don't mean that she is pulling to stand, but the little step before that, in which little ones pull their upper bodies up and over things, like pillows and even someones legs (like mom and dad's).  For Ella, it's ALL about motivation.  If you put the right motivator (ie: food or favorite toy or something she's not supposed to have, like the TV remote) on the other side of your legs, she'll generally pull herself over you to get to it.  That leads me to post these next few pictures.  I think to the average parent, once your kiddo is tearing apart your kitchen cupboards, your thinking of child proofing and doing what you can to keep them out of there - because all they are doing is making another mess for you to clean up.  Well, I'm ecstatic to say, "Ella is in the tupperware cabinet!", and I'll clean up her mess a thousand times, I don't care.  To us, it's just such an accomplishment, a "milestone", if you will.  Firstly, to have the gross motor ability to get there, then sit up, then open the cabinet and take out all it's contents; and secondly, to cognitively have the interest and curiosity.  So, even though I don't own a single piece of tupperware (doesn't everyone still call it tupperware, even though it's not?!), I'm more than happy to keep this cabinet well stocked, without a safety lock, for her to rip apart as many times a day as she pleases.  Not to worry, we will be adding safety locks to the other cabinets that we don't want her to get in to; but thankfully we have an old clintonville home with sticky cabinets that are really hard to get open!

The red bowls seem to be a favorite!

Ella has taken to sitting at the front door, watching the world go by.  Grahm says she's longing for her own you think that's Ella's wish or daddys?!

We got out and enjoyed one of those nice weekend days we had a few weeks back.  Ella has been going to Highbanks since she was in utero, but we've never tried her in one of the baby swings.  Quite honestly, I had always been afraid she wouldn't have the upper body strength to keep herself upright with the momentum, but she's gotten pretty strong in the last few months; and she did just fine.  She absolutely loved it, laughing out loud and telling us "more" with just the octave of her laugh!

That is all for now, more posts to come soon, promise!