Caleb's Surgery...How did we get here?

I wanted to do a post on how we got to the day before Caleb has major surgery. It has been a whirlwind past 3 months to say the least!

End of January
Met with the Pedi about Caleb's Thumb Locking up on him. Diagnosed with trigger thumb and referred us to the hand surgeon.

Early February
Took Caleb for Early Childhood Screening. He wouldn't do the hearing check. He had a cold and things so the nurse told us to bring him back when he was feeling better

March 4th:
Took Caleb back into Early Childhood and he failed his left hearing check (we had started playing earlier in the week by covering up 1 ear and whispering in the other so we had clues of this). We also were able to meet with his Pediatrician and he failed the check there as well. Referred to the Audiologist

March 10:
Met with the Audiologist who did many tests and found that Caleb has Profound hearing Loss in his Left ear.

March 15:
Met with the ENT dr. who believes the hearing loss has been there since birth (he passed his newborn screening). Requested more tests: CT Scan on his ears to make sure they look like they have formed okay, Genetics Testing, Eye Exam (often they also see visual issues with hearing loss).

Met with hand surgeon-confirmed doing surgery on left thumb

March 21:

Pre-Op for Surgery

Genetics appointment: Ordered bloodwork to look for a specific chromosome and ordered a Renal Ultrasound (Kidneys form at the same time as the Ears)

March 22:
Eye Appt-Nothing found

CT Scan-Did great-no contrast needed and only took a few minutes so they did not have to sedate him. CT Scan results came back that evening with nothing found-all look normal

April 4:
Thumb surgery performed-Did great with the exception of waking up and not having us in the recovery room. Also found out he will need to have his right thumb fixed but that is not urgent because it does not lock up

April 12:
Ultrasound Appt: Did great-did not like the "Jelly". Found out in the evening that they did find an "abnormal growth" on his Adrenal Gland. His Kidneys look great but ordered a CT scan for the growth

Audiologist Appt: Ordered CROS hearing aid (a microphone on the left ear is wireless transmitted to the right ear which has a speaker that looks like a hearing aid). This will help him in noisy situations and when he goes to school

ENT appointment: All looks well. Do not need to meet again with Dr. unless something comes up.

April 14th:
Thumb Surgery Post-Op. Stitches taken out. All is well!

CT Scan-had to have an IV and contrast. He did not do well but we were able to do the scan without having to sedate him. I had to sit in the waiting room :(

April 15:
Pediatrician referred us to the Oncologist

April 19:
Met with Oncologist:
The appointment today for Caleb went okay. They had the pediatric radiologist re-read the CT scan from last week and feel the tumor on his adrenal gland is a bit larger than the original radiologist measured it. The tumor has characteristics of both benign and malignant (There are 4 different types of cancer it could be). They took some more blood and a small urine sample and now we need to collect his urine for 24 hours and return it back to Minneapolis Children's. Daniel is going to be home with him tomorrow to do that and I will do the night shift( I will be trying to work through the night and sleep the following day a little bit). If we are unable to get a full 24 hours or miss it they may have to admit him for 24 hours and catheterize him

April 21: Dropped off Urine Sample-Got it all on the first try. Surgery set for May 4th

April 26: Found out the blood work and urine came back perfect! They are now rethinking surgery

April 27: Found out they will continue to do surgery but are going to do it lapriscopically so they needed to schedule a different surgeon. Surgery is now set for Thursday May 5th.

I will be back later tonight to post more about how we are doing mentally, physically and emotionally.