March 2016 - September 2016
March – After being discharged from the hospital, Landrie
stayed on antibiotics for 2 weeks.
During that time we saw an improvement in her cough and congestion. This was the clearest she had sounded since
she was 4 months old. I talked to her
pulmonary doctor on the phone about the 3 bacterias they found in her lung wash
and the fact that the cough and congestion improved on this antibiotic and
could that have been the cause all along.
Well the doctor totally blew me off and said that that was not the cause
and he was not concerned since the quantities were on the lower side. When I pushed with the fact that this is the
first time the cough and congestion had improved in 16 months…..he asked “Do
you want her on antibiotics all the time?” with an attitude. I was really not happy with how he spoke to
me and acted like I was ridiculous to suggest the 3 bacterias in her lungs
could have been the cause of her chronic cough and congestion. Unfortunately, 3 days after finishing the
antibiotics, the cough and congestion returned.
And one week after being off, the fever returned also. So we had her put back on the Augmentin for
another 10 days.
April – Again while on the antibiotics, the fever, cough and
congestion improved. And again, the
cough and congestion returned a few days after going off the antibiotics. I called her pulmonary doctor back and left
message about this. No body called me
back…not him or a nurse. After doing
lots of research I found a type of chronic bronchitis, called Protracted
Bacterial Bronchitis (PBB) that fit Landrie’s symptoms completely. In PBB, secretions and bacteria get trapped
in the airway for some reason. The
bacteria binds together in biofilms similar to what happens in cystic
fibrous. The bacteria is slower growing
so the quantities are lower but they are very strong and very hard to get rid
of. They cause a chronic cough and
congestion. And the cycle of improvement
with antibiotics(especially Augmentin) and subsequent return of symptoms
shortly after finishing meds. There is
not a lot of info on this and it is misdiagnosed as asthma quite
frequently. Of kids diagnosed with it,
there was a high percentage that had airway defects. She was supposed to have an appt with the
Diagnostic Group in mid April. I decided
I was going to talk to him about what was going on since her pulmonary doc wasn’t
helping. Unfortunately, we had a
miscommunication on the time of her appt and we missed it. But they had the doctor call me and I talk to
him about everything. So they scheduled
us a new appt and in the meantime, he had us also schedule an appt with
allergy/immunology.
May – Landrie saw allergy/immunology at the beginning of
May. They did allergy testing which
showed she had no allergies. They also
sent her for bloodwork to check her immune system…those also came back
fine. While there, she was very wheezy
and they were concerned. They share a
pod with the pulmonary doc so they went to talk to him. He couldn’t be bothered to stop in for a
minute to listen to Landrie. They called
respiratory and they did a breathing treatment with Albuterol, which did not
help. Her oxygen levels were fine so
they let us leave. But I was pretty mad
that her pulmonary doctor would not come in to check on his patient when other
docs were concerned about her breathing.
At this point, I decided to find a different pulmonary doctor. A couple days after this appt, Landrie met
with the diagnostic doctor. He agreed
that her symptoms did fit PBB…he did not know a lot about it but did research
it before our appt. Everything else had
been ruled out except asthma. So he said
we had to rule that out first. He put
Landrie on Flovent (inhaler) to see if we saw any improvement. If there was an improvement, than they would
diagnose her with asthma. If no improvement,
than we would treat PBB with a 6 week course of Augmentin (antibiotics). Flovent is a steroid that reduces
inflammation in the airway and is used to prevent symptoms of asthma. I was to keep a log of her symptoms for the
next month so we could see if there was an improvement or not. One week later, Landrie had an appt with the
feeding clinic to discuss her going off the thickener. They just observed her drinking and
eating. They said we could start trial
runs of her going off but thought that we should wait until after we tried the Flovent/Augmentin. Cough and congestion can be a sign of
aspiration so we didn’t want to mess up the treatment plan….tackle one battle
at a time. The hope was that one of the
treatments (Flovent or Augmentin) would work and then we could do the trail of
no thickener and see how she did…if it caused cough and congestion again, than
she may be aspirating and needs another swallow study to assess. About a week into the Flovent treatment,
Landrie’s cough got worse. A couple days
later, her breathing got worse. I had to
take her to the childrens ER 10 days after being on the Flovent for very
labored breathing. She was retracting
really bad and wheezy. Her oxygen levels
were a little low when she was sleeping (around 90). At the hospital they gave her 2 doses of
Albuterol (inhaler and nebulizer), a dose of Atrovent (nebulizer) and Orapred
(oral steroid). Finally after all this,
her breathing wasn’t as labored so we could go home. They let me take the Albuterol inhaler home
with me to give to her for a few days and then as needed after that. She improved for a few days, but the
wheeziness and labored breathing returned.
It wasn’t as bad so didn’t return to the hospital. After a month of the Flovent, we determined
it did not help…she seemed to be worse.
So we stopped the Flovent and started the 6 week course of Augmentin to
treat PBB.
June – Landrie did pretty good the first 2 weeks of the
month but then she had a bad episode of respiratory distress. Tried using the Albuterol inhaler but seemed
to only help minimally and for a short amount of time. On the 16th, her daycare called me
telling me her breathing was pretty bad and they were calling an
ambulance. The paramedics gave her a
breathing treatment in the ambulance which helped. At the Childrens ER, they gave her more
breathing meds and an oral steroid. Her
breathing was better but not great the next day. Her daycare was not comfortable keeping her
that day since they had a big field trip for the older kids and would be short
staffed. So she stayed home with
me. She improved over the next couple of
days. She had an appt with her ENT as a
follow up to her adenoid removal. He ordered
a repeat sleep study.
July – She completed the 6 week course of Augmentin on July
13th. Didn’t start to see an
improvement in the cough and congestion until about the 4th
week. At the completion of the
course, the cough and congestion were
much improved but not completely gone.
The following week, she had an appt with a new pulmonary doctor. I liked him better than the other guy. He thought her issues were caused by her
trachea collapsing (Tracheomalacia – TM).
But that there was nothing they could do. Just had to wait for her to get bigger and
grow out of it which probably wouldn’t happen until she was 6 or 7 years
old. He said it would be a rough few
years. Due to her reoccurring chest
infections, I asked if he could test her for Cystic Fibrosis to make sure that wasn’t
what was going on. He didn’t think it
was but its an easy test so to help ease my mind and rule it out he ordered
it. He agreed that the Albuterol was not
helping her and that is quite common with TM.
So he prescribed her Atrovent instead.
He said TM kids tend to respond better to it so he gave it to me in
inhaler and nebulizer form. A few days
later, Landrie had the sweat test to rule out Cystic Fibrosis (CF). The test was negative with a result of
11. Below is a chart with the result
ranges. Hers was very low so that made
me very happy and relieved.
Later that night, Landrie had her sleep study….It was a very busy day. She wasn’t thrilled about getting hooked up to everything but she did really good. She fell asleep pretty easily, which I was amazed. How can anyone sleep with all that stuff? She had a good night….her breathing was great, not labored, no wheezing, cough and congestion was minimal.
A few days after the sleep study (2 weeks after finishing
Augmentin), Her cough and congestion started to get worse.
Landrie turned 2 on July 30th.
August – The cough and congestion continued to get worse over the next week along with her breathing. We had taken a long weekend and took a little family getaway to a local kids amusement park. We all had a lot of fun but the last day we were there Landrie developed a fever. The day after we got home, on August 2nd, I had to take her to Childrens ER. They said she had pneumonia. Since she had just been on a long course of the Augmentin, they tried a different antibiotic…. Cefdinir. She was on it for 7 days. Her fever went away but did not help the cough and congestion. Her breathing was a little better but not great so she was put back on a 10 day course of Augmentin. The cough and congestion did improve some.
At the end of the month, Landrie had an appt with her ENT to go over the sleep study results. I had already gotten the report and was concerned about. Her sleep apnea had gotten worse which was baffling since they had removed her adenoids and she had had such a great night. The report said her lowest O2 level was 88%(2015 study - 91%) . She had 14 central apneas (2015 study - 5), 1 mixed apnea (2015 study – 0), 1 obstructive apnea (2015 study – 1) and 25 obstructive hypopneas (shallow breathing) (2015 study – 4) with a total apnea-hypopnea index (AHI) of 5.1 per hour (2015 study - 1.3). The conclusion stated mild to moderate Obstructive Sleep Apnea(OSA), with sleep fragmentation, hypoxemia but no carbon dioxide retention. Recommended to evaluate upper airway obstruction and consider removing adenoids and tonsils. Not a horrible sleep study but I was concerned since it was worse than her first one and the fact she had a really good night. I had questions….why was it worse? Why didn’t removing adenoids help? What is it on a bad breathing night? Her ENT was a bit surprised by the results and agreed we needed to investigate further. He did a laryngoscopy in the office to look at her throat….Larynx, adenoids and tonsils. Larynx and adenoids looked fine but tonsils were still swelled so he said they needed to come out. I was not happy since she had just had the adenoids out 5 months prior…they should have done them than. We scheduled for her to have them removed on December 29th. Her pulmonary doctor was going to join and scope her airway also.
September – Landrie was on the Azithromycin for 3 weeks when her cough and congestion started to worsen again. I was concerned about it turning into pneumonia again and she was scheduled for her evaluation in Boston at the end of the month. I emailed the pulmonary nurse in Boston and told her what was going on. She agreed that the prophylactic antibiotic may not be strong enough to keep things at bay so she bumped her up to treatment antibiotics (Augmentin) and kept her on those until after her evaluation. That worked and she did not get pneumonia…thankfully! So at the end of the month we headed to Boston……
August – The cough and congestion continued to get worse over the next week along with her breathing. We had taken a long weekend and took a little family getaway to a local kids amusement park. We all had a lot of fun but the last day we were there Landrie developed a fever. The day after we got home, on August 2nd, I had to take her to Childrens ER. They said she had pneumonia. Since she had just been on a long course of the Augmentin, they tried a different antibiotic…. Cefdinir. She was on it for 7 days. Her fever went away but did not help the cough and congestion. Her breathing was a little better but not great so she was put back on a 10 day course of Augmentin. The cough and congestion did improve some.
The day
after we were at the ER, I had the phone consult with Dr. Jennings. He is a Cardiothoracic surgeon at Boston Children’s
Hospital. He is also the director of the
Esophageal and Airway Treatment Center there.
We went over Landrie’s history and current symptoms. Along with her records I had sent him videos
of her breathing. He said it did sound
like she has Tracheomalacia and that it was on the more severe side. I asked if that was possible since her scope
in March showed no collapse. He said
that it was definitely possible. He
explained that a lot of doctors do the scope wrong….they sedate the patient too
much and give oxygen through the scope.
Both of these things will keep the airway open. I had a copy of Landrie’s operative report
from March and it stated that they deepened sedation when ENT handed it over to
Pulmonary and that she was given oxygen through the scope….so that scope was
useless. I also noted that her ENT had
rated her tonsils to be a 3+ size….I was a bit annoyed why he didn’t just
remove them being that big since a 4+ is completely obstructing airway. It is always a good idea to request the
medical records….be amazed at what you find out. Dr. Jennings recommended we come to Boston
and have the full evaluation by the Esophageal and Airway Treatment
Center. I worked with his nurse, Dori,
to set up something up. It took a bit of
going back and forth but we got some dates…then realized those dates wouldn’t work
because she needed to be pneumonia free for 6 weeks before they could put her
under to scope her and those dates where only 4 weeks away so we had to find
new dates. We finally picked new
dates. I was concerned about not being
able to keep her pneumonia free for that long.
That was not going to be an easy task.
Dr. Jennings wanted me to talk to Pulmonary about setting up an
aggressive airway clearance regime to hopefully keep her healthy. They said this was a common problem with
these kids. I talked to pulmonary on the
phone and they said we needed to be aggressive.
So her regime was going to be Atrovent (2 puffs inhaler), hypertonic
saline solution (nebulizer) and Chest PT in the morning and evening. The pulmonary nurse explained that the
Atrovent would relax and open up the airways, the hypertonic saline would thin
and loosen the mucous in the airway and the Chest PT would get the mucous
moving around. During Chest PT, I have
to cup my hands and smack (percuss) Landrie’s chest and back in different
positions to get the mucous to move around and hopefully cough out. She was also put on a prophylactic antibiotic
(Azithromycin). This is a tough regimen
to get a 2 year to sit through. The
inhaler wasn’t too bad since she had gotten used to it during the month on
Flovent. I was worried about her sitting
still for the nebulizer…it takes about 15 minutes to run the hypertonic
saline. She didn’t do too bad. Some days she sat great and other days she
would fight. She did not like the Chest
PT though. She really fought me at
first. We had to start with lower times
in each area and work our way up in time.
She got used to it and we were slowly able to increase the time.
At the end of the month, Landrie had an appt with her ENT to go over the sleep study results. I had already gotten the report and was concerned about. Her sleep apnea had gotten worse which was baffling since they had removed her adenoids and she had had such a great night. The report said her lowest O2 level was 88%(2015 study - 91%) . She had 14 central apneas (2015 study - 5), 1 mixed apnea (2015 study – 0), 1 obstructive apnea (2015 study – 1) and 25 obstructive hypopneas (shallow breathing) (2015 study – 4) with a total apnea-hypopnea index (AHI) of 5.1 per hour (2015 study - 1.3). The conclusion stated mild to moderate Obstructive Sleep Apnea(OSA), with sleep fragmentation, hypoxemia but no carbon dioxide retention. Recommended to evaluate upper airway obstruction and consider removing adenoids and tonsils. Not a horrible sleep study but I was concerned since it was worse than her first one and the fact she had a really good night. I had questions….why was it worse? Why didn’t removing adenoids help? What is it on a bad breathing night? Her ENT was a bit surprised by the results and agreed we needed to investigate further. He did a laryngoscopy in the office to look at her throat….Larynx, adenoids and tonsils. Larynx and adenoids looked fine but tonsils were still swelled so he said they needed to come out. I was not happy since she had just had the adenoids out 5 months prior…they should have done them than. We scheduled for her to have them removed on December 29th. Her pulmonary doctor was going to join and scope her airway also.
September – Landrie was on the Azithromycin for 3 weeks when her cough and congestion started to worsen again. I was concerned about it turning into pneumonia again and she was scheduled for her evaluation in Boston at the end of the month. I emailed the pulmonary nurse in Boston and told her what was going on. She agreed that the prophylactic antibiotic may not be strong enough to keep things at bay so she bumped her up to treatment antibiotics (Augmentin) and kept her on those until after her evaluation. That worked and she did not get pneumonia…thankfully! So at the end of the month we headed to Boston……
