Follow up to The day is here.
Wow..where to begin. It has been a day to remember, my amazing child has been through so much I cannot even begin to describe her strength. My daughter a child, a toddler two weeks away from her fourth birthday is the pillar of strength and an inspiration. She is my hero!
Pulmonary finished their portion of the surgery first. They did the flexible bronchoscopy that showed signs of possible airway issues but a sleep study will be needed to confirm that it was not caused by the anesthesia. This could explain why she struggles to breath when she is asleep. They were able to get the necessary biopsies successfully, one of her lungs had quiet a bit of mucous and phlegm which they believe to be from aspiration but only the cultures can confirm. Her lungs showed significant signs of asthma and they were able to wash them out but they said they looked better than what they expected so that’s a huge positive. Only complication was a heavy nose bleed, but she has always been very sensitive to nose bleeds. It will be a couple of weeks before we get the results to the biopsies and cultures. They are testing for a specific type of lung disease I can’t remember the name It starts with a P, I have it written down somewhere.
Once pulmonary was done ENT jumped in and began their portion of the surgery, it was her ENT Dr. Paulson, the senior Dr. Drake and their team. They performed their own bronchoscopy and laryngoscopy where they found a small indentation in her larynx and no other significant malformations. It was not significant enough to label it a cleft but they feel this may have something to do with her choking, it will be something to be monitored. They feel her cleft palate Is fine the way it is for now and they found her adenoids inflamed but had not completely grown back which is good.
They cleaned out her ears which were full of wax and then to their surprise her ears were full of fluid, they said it just kept pouring out. Her ear canals had finally grown enough for tubes which they inserted. They believe her hearing will change significantly in a positive way, in a month when she is healed we will have another herring test.
And then came the sinus surgery. Dr. Drake was made aware of Sophie’s sinus disease several months ago and was intrigued at the possibility of such a small child having such severe disease as the scans had detected. So she joined Dr. Paulson in the surgery as the back up set of hands, they were both shocked at the extent and severity of Sophie’s sinus disease. Never before has disease this escalated been seen in a child let alone a toddler. This is one for the books, but as they have learned and I am quoting them “Sophie is writing her own book”.
This time it was not a simple sinus clean out, this time was full-blown sinus surgery the same type an adult would have which is rare to perform on children to this extent. Every single sinus cavity was blocked with mucous and they found several puss filled polyps. They opened and cleared her drainage cavities and hopefully since she is older and stronger now they wont re-close. What came out of my precious little girl was horrible, they said it was surprising especially knowing this was coming out of a child.
We agreed this was the best decision all around. We are giving her a fighting chance. This will be a life long battle they told me, she will need to be followed by an ENT her whole life and may possibly need more surgeries in the future. And, that’s ok because I will do anything I can to keep her healthy and safe.
She is now resting, she is in a lot of pain but has begun to take sips of water and Pediasure. She is bleeding a little more than expected from her nose but her stats are good. She goes ballistic anytime a nurse or doctor walk in, its exhausting. If she does well tonight and eats well by tomorrow we will go home otherwise we will have to stay. She is getting steroids for inflammation and will be getting morphine for pain, the goal is to keep her comfortable.
I wore my favorite shirt shirt today for luck and now there is blood all over it. When the nurse saw it she said “oh no, look at your shirt” I simply smiled and said, those are stains of love! Gotta keep the humor or I’ll go crazy:)