It still kind of a blur how it all happened, but Julia is going in at 7am for surgery Thursday morning on her ears.
She had a cold last week and began complaining her right ear hurt last night. She had ear tubes put in two years ago, but one of them has fell out last year. I couldn't remember which ear still had the tube. After we determined this was the ear without a tube (Thanks Em!), I knew a call to the doctor was in order. She had a rough night with a lot of ear pain. Unfortunately, with only one kidney, tylenol is your only pain relief option.
I decided to just call her ENT this morning to see what they thought should happen. They actually wanted to see her this afternoon. We have always loved Dr. Krauss. He did all three of Carter's ear tube surgeries and adenoid removal, as well as Julia's tubes. He is a brilliant man and full of compassion. He was happy to see how well Julia was doing off treatment. He always amazes me with his knowledge of pediatric oncology.
He agreed without a doubt another set of tubes was in her future. He wanted to go ahead and replace the tubes in both ears and start fresh. He wants to do everything he can to eliminate health concerns from her future and keep her out of unnecessary pain. He decided he would put in T-tubes this time so they will stay in place as long as she needs them. He told Julia she would be having surgery with sleeping gas, no IV, no port, and no NG tube- all she needed to know. With that happy news she headed off happily down the hall for a hearing test. I went the other way to talk with the surgical scheduler.
Turns out he wants this to happen ASAP, meaning tomorrow morning. I signed all the papers (they don't even bother with the risks when you've had this many surgeries) and was on the phone with the pre-op nurse (I think she was a little overwhelmed with all the history, so we'll just discuss it with anesthesia tomorrow.). Before I knew it we were headed out the door and had just purchased a surgery. Wow, that was quick. Aside from the infection, the hearing test also showed some hearing loss. Hopefully the tubes will remedy this. They will recheck in March.
As crazy and fast as it all was, I am so thankful for a doctor who did so much to do the quickest, simplest, and best thing he could for Julia. I am still floored by how smoothly it all happened. It is such a blessing to have a doctor who truly cares so much. I have to give a quick shout-out to his daughter, too. Apparently the apple does not fall far from the tree. She was in nursing school at the Univ of PA and was hired by CHOP before she even graduated to work in the PICU. That is unheard of, but they must have known true talent when they saw it. It's kind of crazy that the kids we know in treatment at CHOP may be in her care. What a small world!
So surgery will be at 8:30 in the morning and we should be heading home about an hour later. With everything she's been through, day surgery is really nothing more than a doctor's appt to us. Tonight as I sat to update her medical records it hot me again just how much she has endured. It's crazy to see it all listed on paper- every drug, every surgery, every illness, every test. She has come so far. It is humbling to see what cancer does to a child's life.
That reality hits close tonight. Sadly, as we sit and count our blessings, others' hearts are breaking. Sweet little Lilly had a bone marrow aspiration today and they found blast cells in her marrow. This points to a leukemia relapse on treatment. They have been told she has a 25% chance of survival (6wks to 6mo to live) and are facing an entirely new battle ahead. Such a tiny little warrior, now called to fight another war at only 2 years old. Lilly, we love you! We stand beside you believing God for His goodness and standing in HOPE for your future.
She had a cold last week and began complaining her right ear hurt last night. She had ear tubes put in two years ago, but one of them has fell out last year. I couldn't remember which ear still had the tube. After we determined this was the ear without a tube (Thanks Em!), I knew a call to the doctor was in order. She had a rough night with a lot of ear pain. Unfortunately, with only one kidney, tylenol is your only pain relief option.
He agreed without a doubt another set of tubes was in her future. He wanted to go ahead and replace the tubes in both ears and start fresh. He wants to do everything he can to eliminate health concerns from her future and keep her out of unnecessary pain. He decided he would put in T-tubes this time so they will stay in place as long as she needs them. He told Julia she would be having surgery with sleeping gas, no IV, no port, and no NG tube- all she needed to know. With that happy news she headed off happily down the hall for a hearing test. I went the other way to talk with the surgical scheduler.
Turns out he wants this to happen ASAP, meaning tomorrow morning. I signed all the papers (they don't even bother with the risks when you've had this many surgeries) and was on the phone with the pre-op nurse (I think she was a little overwhelmed with all the history, so we'll just discuss it with anesthesia tomorrow.). Before I knew it we were headed out the door and had just purchased a surgery. Wow, that was quick. Aside from the infection, the hearing test also showed some hearing loss. Hopefully the tubes will remedy this. They will recheck in March.
As crazy and fast as it all was, I am so thankful for a doctor who did so much to do the quickest, simplest, and best thing he could for Julia. I am still floored by how smoothly it all happened. It is such a blessing to have a doctor who truly cares so much. I have to give a quick shout-out to his daughter, too. Apparently the apple does not fall far from the tree. She was in nursing school at the Univ of PA and was hired by CHOP before she even graduated to work in the PICU. That is unheard of, but they must have known true talent when they saw it. It's kind of crazy that the kids we know in treatment at CHOP may be in her care. What a small world!
So surgery will be at 8:30 in the morning and we should be heading home about an hour later. With everything she's been through, day surgery is really nothing more than a doctor's appt to us. Tonight as I sat to update her medical records it hot me again just how much she has endured. It's crazy to see it all listed on paper- every drug, every surgery, every illness, every test. She has come so far. It is humbling to see what cancer does to a child's life.
That reality hits close tonight. Sadly, as we sit and count our blessings, others' hearts are breaking. Sweet little Lilly had a bone marrow aspiration today and they found blast cells in her marrow. This points to a leukemia relapse on treatment. They have been told she has a 25% chance of survival (6wks to 6mo to live) and are facing an entirely new battle ahead. Such a tiny little warrior, now called to fight another war at only 2 years old. Lilly, we love you! We stand beside you believing God for His goodness and standing in HOPE for your future.
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