April 2015 - December 2015
Landrie recovered well from surgery. She started to army crawl at the end of April
just before turning 9 months old. She
continued to have a chronic cough and congestion but her breathing sounded
good. This time period is full of a lot
of doctor appts and tests to figure out some weird non-breathing related issues.
May – She met with ENT for her follow-up after
surgery/scopes. He recommended another
swallow study and evaluation with feeding team to make sure she wasn’t aspirating….she
sounds more congested after drinking bottles which can be a sign. Her swallow study showed penetration, which
means the liquids go into the top of airway but doesn’t go down. She did this more and more as she drank. They didn’t think they saw it aspirate but wasn’t
100% sure. They were concerned about it
and said she was definitely at risk to aspirate so they recommended we continue
her on nectar thick thickener. She also hadn’t
gained any weight since the surgery.
Every time I would increase her food intake she would vomit. And was struggling to eat finger foods. She went from the 21st percentile
before her surgery to the 5th percentile 3 months after
surgery. The feeding team suggested an
appointment with GI doc for reflux and to check for Gastroparesis (slow
emptying stomach). They also recommended
having her evaluated by Early Intervention.
June – We made an appt with her cardiothoracic surgeon for
an echocardiogram. Her hands and feet
had been swelling and turning colors (red splotchy or blue/purple) since her
surgery….didnt happen all the time, but would randomly happen. Docs
were concerned something could have gotten crimped in her chest when they moved
things around. They echo looked good but
she drank a bottle while they did the echo to keep her still and it showed her
heart rate getting elevated while drinking again. The CT surgeon was not sure what was going on
with the swelling and discoloration, but was concerned. He referred us to a diagnostic doctor. She also had an evaluation with Early
Intervention…they said that she was behind in her feeding skills. Her lip, mouth and tongue muscles were very
weak causing her to not chew and move food around properly causing her to cough
and gag to the point of vomiting. So
they recommended occupational therapy (OT).
She had an appt with ENT at the end of the month to discuss swallow
study, feeding team and OT findings. I
also mentioned that she was still having pauses in her breathing when she
sleeps and was that normal for her age. She
wasn’t having a ton of them but enough that I was concerned by it. Its very scary when her Snuza monitor goes
off in the middle of the night and she is not breathing when I check on
her. He did a laryngoscopy in the office
to check on her tonsils, adenoids and larynx to see if there was anything that
could be causing sleep apnea. He said
all looked good. e recommended a sleep
study.
July – The GI doctor did believe she had Gastroparesis so
she was put on Erythromycin which is an
antibiotic. So that sounds weird, but it
is prescribed at a low dose and it helps by increasing the contracting of the
stomach muscles which move the food. Doc
kept her reflux meds the same. Landrie
also started her OT…it was very interesting watching how they get a little one
so young to exercise their mouth muscles.
We met with the Diagnostic Group Doctor to discuss the hand/feet
swelling and discoloration issues. He
said there could be something going on with her autonomic nervous system which
could explain the hand/feet thing along with a few other things like the
Gastroparesis, heart rate and temp control issues. He asked me to keep a detailed log of
anything I notice and we would follow up in a few months. If symptoms worsen, than they will do an MRI
which they would have to put her under for. One
week before Landrie’s 1st birthday, she had a sleep study done. That was interesting! All sorts of wires were hooked up to
her. She wasn’t thrilled by this but did
surprisingly well. She went to sleep
pretty quickly and slept well. I,
however, did not sleep. We had to wait a
couple weeks to have an appt with ENT to discuss the results. Landrie turned 1 year old on July 30th!
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| Sleep study set up....someone not happy |
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| Lots and lots of wires.... |
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| How can you sleep like this?!?! |
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| Happy 1st Birthday!!! |
August – I was quite
annoyed by at her ENT appt. She was
scheduled with her regular ENT but some other doc that we have never met came
in. He said that she did have some apnea
moments during her study but it was within normal limits. He also said her adenoids were a bit swelled…not
enough to do surgery yet but probably would need them out in a year or 2. He would not give me details about the sleep
study which really annoyed me, so later, I requested her records. The report said her lowest O2 level was
91%....So that’s not too bad. She had 5
central apneas, 1 obstructive apnea and 4 obstructive hypopneas (shallow
breathing) with a total apnea-hypopnea index (AHI) of 1.3 per hour. Normal is considered 0-4 so that is pretty
good but still makes me nervous when I see a pause or her monitor goes
off. At the end of August, Landrie
started walking!
October – Had
several follow up appts this month. The
Diagnostic Doctor wanted us to continue to monitor the autonomic nervous system
issues since they hadn’t gotten worse.
But something odd I did notice during the summer was that every time
Landrie was in a pool(fresh water or chlorinated), she would develop a fever
shortly afterwards that would last for 1-3 days. Doc thinks it could be related to the
autonomic stuff. Her GI doctor
recommended trying to wean her off one of her reflux meds(zantac). Over the last few months, the vomiting had
gotten much better and she finally started to gain some weight. Still slow, but gaining. She was also eating finger foods much better after
a few months of OT. They helped us find
a sippy cup that works for her and finally got her weaned off the bottle. She really struggled with the cups. They recommended a strawed cup so she would
keep her head down since she has the tendency to really arch her head back to
drink her bottles because it opens her airway up(she does this sleeping too).
But because it opens airway up…it increases risk of aspiration. So they said a strawed cup will force her to
keep her head down and lower aspiration risk.
But finding the right cup was tough…she couldn’t get anything out of the
ones with a valve or had to pinch with lips because she didn’t have the
mouth/lip strength and then she would get too much out of regular straws and would
choke. Plus some cups just didn’t work
well with the thickened liquids. OT had
us try the Rubbermaid juice boxes…They are great…No valve or pinching needed
but the straw hole is a bit smaller so not a big amount of liquid comes out but
its big enough for the thickened liquids.
.The feeding team recommended we continue thickening liquids due to risk
of aspiration. They wanted us to give
Simply Thick a try since she was over 1 year old. We liked it much better than thickening with
rice cereal. They wanted to see her
again in the spring to evaluate going off thickener.
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| The strawed cup that Landrie could use |
November – Through the
Early Intervention program, Landrie start speech therapy. She was a little behind in her speech. It was not too bad but due to the issues with
her airway and mouth muscle tone…both could cause speech delays….her docs
recommended we start therapy a little early.
We had a nice Thanksgiving. Black
Friday was the anniversary of when Landrie stopped breathing. That day will always haunt me now.
December – Had a
break from appts this month and enjoyed the holidays!
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