We made it HOME

Hi Everyone!

Sorry about not updating more-I found the hospital had blogger blocked and It was very difficult to continue to update from my phone! Then once we got home life got a bit crazy.

Caleb slept really good Thursday night. He was not happy about the nurses coming in to take his vitals though.

Friday was filled with more doctor and nurse visits, playing bingo, having dog visits, playing in the playroom and watching LOTS of MOVIES. Caleb wasn't eating much (the only thing we could get him to eat was Mac N Cheese). They originally thought he would be able to go home Friday afternoon but the more the day went on we soon realized we wouldn't. Caleb still was getting his meds by IV (he had to be getting them by mouth) and his tummy was pretty swollen. They really wanted him to be passing gas and have a bowel movement so they highly recommended that we stay another night-while we really wanted to take him home, we decided to keep him there.

He slept super Friday night but decided it was wake up time at 6:15. I did not sleep well between being uncomfortable and the extra noise (they had to change our rooms). The doctor came in Saturday morning and Caleb's tummy wasn't as swollen anymore but he still had not had a bowel movement. He was taking his meds by mouth. The Surgeon said that we have pretty much hit a wall and he probably won't get better staying in the hospital. We packed up our things and headed home.

Caleb was still pretty whiney Saturday and didn't want to move too much. He did however want to ride his scooter and swing right when we got home. Both of which were okay to do per the doctor. I am amazed at how fast he has bounced back. Sunday he was pretty tired but wanted to play the kinect and went for a bike ride to the park with Daddy.

As far as the surgery, it went MUCH better than expected. They originally thought they would have to remove the whole adrenal gland but they found out that they did not need to. We have gotten the preliminary pathology report back saying that the tumor was in fact benign and what they call a ganglioneuroma tumor-the one of the most Bengin tumor possible. It is basically a tumor filled with just a bunch of nerves. We are to meet with the oncologist later this week to get a action plan to make sure it doesn't grow back and to make sure that there is nothing else we need to do.

Thank you all for your thoughts and prayers!

Love,
~Heidi

Asleep

We made it to Calebs room about an hour ago. He has been pretty fussy and his tummy has been hurting but he finally fell back asleep. The doctor said he should be able to leave tomorrow and do normal activites when he is feeling up to it.

Leaving you with a picture of the little guy.

Surgery completed!

Will post more later with what they did. Waiting to see him in recovery!

Surgery underway!

Surgery is going well. They are removing the gland right now. Thanks for your prayers!

In the OR!

Here is a picture right before going in the OR. He was doing great! They are prepping him right now while he is asleep.

On the way to the hospital

We are off!  Caleb was able to have jello and popsicles for breakfast. We played a game before we got ready. My tummy is doing flips. Thanks for your prayers!

Love....Heidi

Night before Surgery

I think Caleb is getting a little nervous tonight for surgery. He is having a hard time falling asleep and actually told me that he thinks the little ball is going away so they don't need to fix him anymore. It is hard seeing him struggle but I know that everything is in God's hands!

We have to be at the hospital by 10am and surgery is at 11:30am. Please continue to pray for us through surgery and recovery. We are not sure how long the surgery will take or how long recovery will be but we are hoping that everything will be fast.

One thing that I am continuing to remind myself is that God will not give me more than I can handle. God is making some big changes in our lives daily and I continue to look to him for guidance and am so thankful that he is always there for us.

Thank you for your prayers and support. I am hoping to post some short updates tomorrow throughout the day and for the next few days for updates on surgery and recovery.

Here are a few things that you can be praying specifically for:
-Surgery itself that it will go quickly and smoothly, pray for the doctors and nurse staff
-Recovery that Caleb bounces back quickly
-pray for Daniel and I as we watch our little boy go through another surgery
-Pray for Caleb that he will feel God's loving arms wrapped around him
-Pray for Noah as he gets to spend some quality time with Grandma Evie and Grandpa Ken.

Love to you all!

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.