September 27 – October 1, 2016
Boston here we come!
Having your child have tests and procedures is hard enough,
but planning these things far from home adds another layer of anxiety to
it. I did a ton of research on flights,
hotels/housing options, taxis, restaurants, etc. Boston Childrens Hospital (BCH) has family
housing available for families going to the hospital. Space is limited though so wasn’t sure if we
would get in. Initially, we had planned
for all of us going….myself, husband, son and Landrie. When I talked to the housing coordinator,
they only had a small room available for the dates we needed. The room would only fit 2 people. So we made a quick decision to have just
Landrie and I go. I booked our flights
and reserved the room at the housing.
And prayed that Landrie would stay pneumonia free.
September 27 – Landrie and I flew to Boston. This was her first airplane ride and my first
time flying with a young child. I was
nervous to say the least. She sounded
really junky and wheezy. I thought that
was good for the doctors to see her like that but was a bit worried on how the
plane ride would go. But she did
great. We took a taxi to the housing we
were staying at which was just a few blocks from the hospital. We were in a room with a bed, tv and a little
bit of storage space. There was a shared
kitchen, several bathrooms, playroom and laundry room. It’s a different environment than we are used
to so took a little time to get adjusted.
September 28 – This was a very busy day at the
hospital. Landrie had an echocardiogram
and an EKG. We met with the Cardiologist
afterwards to go over the results and her history. He said her heart rate was a little high but
otherwise the tests were fine. She has
had a history of tachycardia with having a 24 hour holster that came back fine
other than the tachycardia so he wasn’t too concerned about it but did want to
see the reports for those old tests. He
cleared her for surgery. She than had an
esophagram (fluoroscopy). She had to
drink barium while they took a special extra to check the structural aspects of
her esophagus. They did not see any
narrowings or abnormal connections. Next
we met with GI, Pulmonary and Cardiothoracic surgeon (Dr. Jennings). We went over her history. Based on that and the videos I showed them of
her breathing….they all believed her trachea is most likely severely
collapsing….Tracheomalacia. She was
wheezy when pulmonary listened to her so they decided to add another breathing
med to her regime. We are to give her
Qvar inhaler 2 times per day. Qvar is a
steroid that helps reduce inflammation in the airway. I was amazed at how well Landrie handled all
these appointments…it was a crazy day. I
was also very impressed with meeting the team of doctors….they really know
there stuff. It was refreshing being
able to talk to doctors who get it.
September 29 – We had to be at the hospital early for a
sedated CT scan to check out the airway and surrounding structures. She did very well during the CT scan and
recovered from the sedation quickly. We
met with ENT afterwards. He did a
Laryngoscopy in the office. He agreed
with our home ENT…..her LM was minimal, adenoids and vocal cords looked
good. Tonsils were moderately swelled
and with sleep study results should come out.
Next we were off to Pre-Op. This
was an easy but long appointment. Had to
meet several people and answer a bunch of questions. They approved her for anesthesia for her
scopes the next day. Found it amusing
that they had to approve her for anesthesia for the scopes but not the CT scan
this morning…..Not sure what the difference is.
When we were done we went to a nice park that was near the housing were
staying at. It was a nice day and was
great to let her run off some energy after being cooped up so much. When we got back to the housing, she got to
play with some of the other kids staying there.
She had a great time!
September 30 – Landrie went for the triple scope today. They were running about an hour behind so it
was a really long 2.5 hour wait in the pre-op area. I hate that area! She had fun riding on the cars…mommy got her
exercise doing laps with her around pre-op.
ENT and GI came out first. ENT said
that he confirmed what he saw on the Larygnoscopy. He also checked her for a cleft and she
didn’t have one. He said that they could
already see quite a bit of compression in the trachea and bronchials. GI said that all looked good. Said that pulmonary was taking over…that they
were lightening the sedation. Pulmonary
came out and said that the back wall of trachea was severely collapsing. It was collapsing almost all the way with
regular breathing and completely with forced exhale like a cough. He said that the Aortopexy she had at 7
months had failed, so she also had a severe anterior compression on
trachea. Her bronchial tubes were also
severely collapsing. The left main stem
bronchus was really bad….on top of the collapse, it also was being compressed
between the descending aorta and pulmonary artery. He said her lungs were full of
secretions….they kept sucking more and more junk out. From the look on his face, it was really
bad. They hadn’t planned on doing a lung
wash, but with how much secretions they sucked out…they sent it off to the lab
to make sure the antibiotics she was on was keeping the bacteria at bay. Information overload! He leaned into me and said….”I know this is a
lot and not good, but WE CAN FIX HER.”
Yes….that is what I want to hear.
I made a couple phone calls while I waited for them to call me back to
recovery. It seemed to be taking longer
than usual and I started to worry.
Finally, they did call me back.
They recovery nurse told me she was struggling. Her oxygen levels had been low and she needed
oxygen. She kept getting mucous plugs so
they had to do chest PT and suction her several times. She sounded terrible! The nurse said they were getting our room
ready….Um…What??? We weren’t supposed to
be admitted and had an early flight home the next day. The nurse asked me what I wanted to do….I
told her that if she needed to be admitted, than admit and I would reschedule
our flight. But if she was ok, than I
wanted to leave as planned. The nurse
said they would see how she does the next couple of hours and then determine if
she would be admitted or not and that she would do what she could to try to get
her good to leave. I give that nurse
lots of credit…she worked her butt off getting Landrie better. She did lots of chest PT and suctioning. We talked quite a bit about her history. After a while, the nurse said that she was
comfortable letting us leave since it seemed like I knew what to do for her and
when to bring her in. Dr. Jennings came
to talk to me while we were in recovery.
He also talked about the massive amount of secretions they found in her
airway. He said that her left lung was
moving no air it was so full. The right
was better but not great. So I said that
she is pretty much running around with half a functioning lung. And he said yes. I asked how is that possible……She is very
active. She has her struggles but
looking at her you would never imagine it was that bad. He told me that that is all she has ever
known…these kids adapt very well. The
problem is that eventually her lungs would not be able to handle it and she
would end up needing to be intubated to breathe. They were surprised we hadn’t already ended
up there. He said this can also cause permanent
damage in the lungs…called Bronchiectasis.
There was no thinking needed to decide to go forward with surgery. After quite a few hours in recovery, we were
finally discharged back to the housing.
She sounded horrible most of the night but she stayed stable. So the next day we flew home as planned.
