Adenoidectomy and Triple Scope with lung wash

March 3, 2016 – March 6, 2016

On March 3, 2016, Landrie had her adenoids removed, a triple scope and lung wash done.  A triple scope is when they do a endoscopy(esophagus) and a flexible and rigid bronchoscopy(airway).  A lung wash(Bronchoalveolar lavage) is when they suction fluid out of the lungs.  They will test it to check for bacteria, fungus, virus, cell counts and aspiration.  During the scopes, they could see the compression area and seemed to be the same as after her Aortopexy at about 30% compression.  They did not see any collapse of the trachea or bronchials which was surprising based on her symptoms.  The adenoid removal went fine.  ENT told me her tonsils were swelled too but they left them because they do not like taking them out this young and didn’t think they were causing any issues.  They like to wait until child is 3 or 4 years old.  She developed a bad petechiae rash during the surgery.  It was all over her face, neck, shoulders, upper back and chest.  No one could explain why but they did not seem to be too concerned. 

Wating for surgery to start

Petechiae Rash

After surgery cuddles

 

Sleeping with Lu the Lamb

She was admitted overnight for observation.  She was a little sleepy and grumpy after anesthesia wore off but not too bad.  We did laps around our floor of the hospital.  She liked riding on the ride on toys they had.  Mommy definitely got her exercise.  While sleeping, her oxygen levels were dropping below 90, so they hooked up a blow-by to give her a little oxygen and it helped.  In the evening, I noticed her heart rate started to get elevated.  The doctors were not very concerned by this since she has had some episodes of tachycardia in the past that resolve on their own especially after her Aortopexy.  I was not happy about this happening again especially not having a reason why.  She started to cough more and more as the evening went.  She had some episodes of coughing that sounded like she was going to throw up but nothing came out.  Her heart rate continued to climb.  She developed a fever later that night which caused her heart rate to climb even more.  Her heart rate was staying above 200 at this point and getting up to 240’s.  She vomited a couple times in the middle of the night too.  It was a really rough night. 

In the morning (March 4^th), the day nurse called the doctors to let them know what had happened overnight.  The nurse was the same one we had the day before so she was quite worried to see Landrie’s drastic deterioration overnight.  She could not believe it was the same child.  She was referred to the diagnostic group to take over her care.  The doctor was concerned about aspiration pneumonia.  So he ordered a chest xray but had her start IV antibiotics even before she got the xray.  They did a viral panel also which came positive for 2 viruses.  So they were leaning towards she had a virus but still kept her on the IV antibiotics just in case there was some pneumonia going on after her scopes.  The doctor was also concerned about the petechiae rash and asked a lot of questions about bleeding issues that run in my family.  Said that the rash could indicate a bleeding issue even though her tests prior to surgery showed no bleeding issues.  It was a scary day.  Landrie’s fever was quite high and was only coming down a little with ibuprofen and Tylenol.  Her heart rate would come down a little while the fever was down, but both only stayed down for about an hour than would spike back up.  Landrie was pretty unresponsive and lethargic.  She didn’t even want me to hold her.  Overnight, her fever finally broke and her heart rate came down.  

On march 5^th, her fever and heart rate stayed down which made me feel a lot better.  But she was still very lethargic and unresponsive.  She slept most of the day and would not drink or eat.  I was missing my feisty girl.  Her oxygen levels started to dip under 90 while she was sleeping.  So they put a nasal cannula on her to give her oxygen.  This helped bring her oxygen levels up.  Daddy and brother came to visit and she woke up a little for that.  Later that day, they took the oxygen off and she was able to maintain her oxygen levels.  She was all yucky so I washed her up.  She looked a lot better.  The doctor came in and told me that her lung wash had showed 2 bacterias were in her lungs.  

Not feeling good

My poor girl

She slept good overnight and woke up much more energetic and saw a bit of feistiness again.  So good to see my girl back.  The doctors decided to discharge her.  He also told me that another bacteria showed up in her lung wash.  So the girl had 2 viruses and 3 bacterias in her little body.  Now wonder she was so sick.  The bacterias that were present were Streptococcus pneumoniae, Staphylococcus aureus and Haemophilus influenzae.  She was sent home with a course of antibiotics….Augmentin.  We were very happy to be home.

Smiling again....

Start to a new year....

January 2016 – March 2016

January was a busy month of appts.  We started to notice a weird honking noise when Landrie was running (see video below).  The winter months had been rough with sicknesses already and the chronic cough and congestion has not improved.  She was also having episodes of respiratory distress for no apparent reason.  I had made an appt with Pulmonary doctor a few months ago but took until January to get in to see him.  He watched the videos I had taken of Landrie and he said it sounded like her trachea was still collapsing.  He could also hear some wheezing when he listened to her lungs with a stethoscope.  He recommended putting her under and doing a flexible bronchoscopy and lung wash.  He sent a note to her ENT to let them know and they decided that they wanted to be involved in the scope also and they decided to make it a triple scope….flexible and rigid bronchoscopy and endoscopy and they would remove her adenoids if they were swelled.  We also had an appt with Genetics to see if we could find a genetic disorder causing her issues…especially the unexplained autonomic nervous system issues.  Despite her issues, she did not meet certain markers that the insurance company would cover the tests and they are expensive.  So we passed on doing any testing at this time.  If anything comes up later, we will revisit.  I started a new job with a company I had worked at a few years prior.  It was a good change for me and they are very understanding about my daughters health issues.  At the end of the month, Landrie turned 18 months old and hit the 7 percentile for weight….slowly increasing.  Which is funny, because she eats a ton now….the girl loves food. 

We weaned Landrie off the Erythromycin and she was doing great off of it…no reoccurrence of gastroparesis.  Her GI doctor said we could start to wean her off the Nexium.  No meds for first time in 15 months….

She had a bad sickness in February that got her admitted overnight for observation.  Her breathing was crappy and oxygen levels were low.  Thankfully, she bounced back quickly and we waited for her scopes in March.  

The rest of 2015

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 21^st percentile before her surgery to the 5^th 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 1^st 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 30^th!  

Sleep study set up....someone not happy

Lots and lots of wires....

 

How can you sleep like this?!?!

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.  

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!