Big Week! Lots of firsts…The portrait is of my brave girl put back together:
(first stitches that didn’t result from a surgery)
It was also the first day of second grade!
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Category Archives: health
Affairs of the heart
Christmas seems like a good time to think about our hearts. This fall we learned a lot more about hearts than I ever hoped to learn. It all started with the girl waking up to her heart feeling rushed. One thing…
led to another…
and to another..
…and we eventually learned that other than beating fast at times (tachycardia) there is nothing to worry about.
At the same time we were learning about her heartbeat, the girl was opening her heart to Jesus!
Let the words of my mouth and the meditation of my heart be acceptable in Your sight, O Lord, my Rock and my Redeemer. Psalm 19:14
This Christmas, we are thankful that the girl’s heart is good! It’s better than good!!
For where your treasure is, there will your heart be also. Matthew 6:21
Nurse Amos
He will not leave her side.
Cuddles with Nonnie
We are home! I’ll bet you thought that the post title was referring to the girl!
The girl is getting plenty of Nonnie cuddles, but she’s having to share with the grand puppy.
It’s working! We are starting to see more smiles.
Still Singing
The girl’s surgery was a success! They removed both tonsils and adenoids. She’s such a trooper! We told her about the surgery this morning, and she took the news well. She just asked for a new toy car in exchange for any “pokeys”…which to the girl means needles or enemas. We agreed to her terms!
The surgery went without a hitch, and she has been in a pretty good mood considering.
I did get the stink eye a few times
She’s been hanging out with Nonnie and Poppie – we are so glad they are here. Especially since Poppie brought the chocolate pudding and Nonnie sings with the girl. They make songs out of anything they hear…beeping monitors and all.
Now everyone is gone. We read 4 chapters of Stuart Little and she finally fell asleep
Good Night! Sleep Tight, Brave Girl!
Hoofbeats
I’ve heard that doctors are told that when they hear hoofbeats that they should look for horses instead of zebras. Look for the common, not the rare.
When a kid with a history of tethered cord starts falling and having trouble with weakness and incontinence, the obvious concern is that the cord is re-tethered. Re-tethering is pretty rare (~ 2% according to Ogiwara et al.), but we still couldn’t think horses when this rare possibility was stampeding towards us. We have just spent about a month testing everything that could be tested on the girl. Now we know that we are dealing with horses! We finally have some tentative answers, and there are no zebras involved…
The tentative answer is unexpected. The MRI of the spine showed some large adenoids (that had grown back after they were removed 2.5 years ago), large tonsils, and large lymph nodes. We visited the ENT yesterday and he said that the girls tonsils were almost as big as they get. He was concerned that she has sleep problems that could be on the verge of sleep apnea. She has lots of symptoms of sleep disordered breathing:
The most obvious is snoring…she sounds a lot like this:
The girl has never been one to sleep well, and we kept putting off the sleep studies that have been suggested over and over. She just has so many doctor visits, we didn’t want to subject her to any more. We never imagined that the problems sleeping could be serious…I mean, I’m seriously tired all the time, but for the girl, we didn’t realize it was that big of a problem.
It turns out that sleep apnea is a pretty serious problem. About 2% of the child population has sleep disordered breathing (American Academy of Otolaryngology), and this can lead to problems with behavior and learning, enuresis (bedwetting), slow growth, obesity, and cardiovascular issues (American Academy of Otolaryngology). Removing the tonsils and adenoids is the most common and effective treatment for sleep disordered breathing and obstructed sleep apnea.
We are optimistic that the tonsillectomy will help her sleep, and once she is actually resting she will be stronger and improve in all of the ways that she did immediately after the first surgery.
Sources:
American Academy of Otolaryngology. 2011. Fact Sheet: Pediatric sleep disordered breathing / obstructive sleep apnea. http://www.entnet.org/HealthInformation/Could-Child-Have-Sleep-Apnea.cfm. accessed 16 November 2012.
Ogiwara, H., A. Lyszczarz, T. Alden, R. Bowman, D. McCLone, and T. Tomita. 2011. Retethering of transected fatty filum terminales. Journal of Neurosurgery Pediatrics, 7:42-46.
Tired
We have had a very busy week. This picture sums up how we all feel. We still do not have answers about the symptoms , but some blood work ruled out some scary possibilities! There are more appointments next week, and hopefully we will get some better ideas about what’s going on. For now we are going to get a little rest!
Some answers, more questions
The girl saw the neurosurgeon today. We had lots of questions when we arrived, and we left with more questions. Of course we were a bit concerned that the cord re-tethered. We did learn that the cord is fine! No indication whatsoever that the cord is the problem.
There were no explanations for the falls and incontinence. Because the girl is weaker on one side, the doctor ordered a brain MRI. We will do that next week. It’s without sedation…should be easy. So, this is step one in the plan.
Step two is to follow up with the urologist and stay on new medicine for the bladder.
Step three was unexpected.
The very thorough radiologist looked at everything and noted in the report that the girl has “enlarged lymph nodes particularly in the suprahyoid internal jugular chain….bilateral tonsillar enlargement and partially visualized adenoid hypertrophy.”
I looked up “hypertrophy” and it means enlarged. Hmmm…the girl had her adenoids removed 2 years ago. I guess they grew back?
So, step three is that the neurosurgeon will send the MRI to an ENT at Children’s so we can get an opinion about infection or other things that could cause the swelling. Infection can make a girl fatigue and fall…but probably doesn’t explain the incontinence.
That’s the plan! At least we have one!
Now we wait
The MRI was this morning. There are some perks. Child life brought an iPad with much better games than mommy has:
The girl did great with the sedation and the test took about an hour. She was really “wobbledy” and “didn’t feel good” when she woke, but she managed to eat crackers!
She ate her special cookie on the way home proclaiming “it’s a bad ghost so I have to eat it!”
Now we are home and the girl is trying to convince mommy that she won’t fall if I let her play. After a sandwich enjoyed by the girl and the BAD puppy, she is now sleeping off the sedation.
The mom is wearing some special socks that remind her of friends and prayers and God’s faithfulness.
We will talk with the neurosurgeon next week. Until then we will run like a rocket and have as much fun as we can!
Update
We have spent the fall visiting every doctor that the girl sees at Children’s. She has these little issues that keep creeping up. First we had some changes in the way that she runs. We had muscle testing at Children’s (and of course her PT has been watching) and until recently she seemed strong, just uncoordinated. She started falling and having some accidents again in early September. We had the routine muscle testing (again she tested strong) and bladder testing (CMG). The CMG wasn’t normal, but it wasn’t anything like pre-surgery and it wasn’t terribly alarming. The urologist put the girl on a medicine that would control bladder spasms, and suggested a different laxative to see if we could get past the accidents. The Dr. was concerned about the accidents and walking issues, and encouraged us to call the neurosurgeon. The neurosurgeon ordered an MRI and a follow up sooner than the previously scheduled December MRI. So, the girl will have an MRI on Tuesday and we will learn the results the following Monday. I’m hoping that this is just a “better safe than sorry” MRI, but the “strength” of the girl’s legs is changing (as of this week). I’m glad we can get this checked next week, but we’re all still a bit grumpy about more doctor visits!
