Surgery Day 🙁
Hayley’s Total Pancreactomy & Auto Islet Transplant (TP/AIT) Surgery
This was the hardest decision we ever had to make. Watching your child suffer in ANY manner is just not normal. This is one of the biggest surgeries out there and Hayley handled it like she had done it 100 times before. I could not have been prouder of her demeanor as she underwent this huge rare adult surgery and the 46 days painful days she spent in hospital. Hayley is only the 2nd child in Canada to undergo this surgery and 1st in Ontario. Everything seemed to happen pretty quickly once we got in the OR. A lot of thought was put into the surgery however when your child is in the kind of pain that Chronic Pancreatitis dishes out the decision becomes very easy. Sadly Hayley is still in a significant amount of pain. Her risk of getting pancreatic cancer may be lower but if your in pain all the time then…..we are still hoping and praying the pain will settle!
Hayley and I (mom) arrived at Stollery Children’s Hospital in Edmonton Alberta on May 3th, 2013 at 6am. We had done all the necessary testing the previous week. We went to “OR Admitting” and met with Kim. Hayley was promptly escorted to the OR department (see video) were we met the anesthetist Dr. Cocay and Dr. Shapiro our TP/IAT surgeon. Oliver, Dr. Shapiro’s nephew was also observing. There was roughly 13-15 people in the OR that day.
This would be the day they would remove Hayley’s pancreas. When I had the doctor in Alberta tell me that he was 99.9% positive the TPIAT surgery will take away the pain, as a mother, it was like “a symphony to my ears”. To cement the decision even further when he filled in the “out of province” OHIP Approval forms he stated that without the surgery Hayley stood a 50/50 chance of getting pancreatic cancer and the likeliness of suicide was very high (due to the continuous pain). These are very frightening factors so given the pain she was in and the opinions expressed from the doctor I did not think we had any other choice but to move forward with the surgery.
Hayley was hooked to an IV in her arm first so they could get her to sleep. Before that could happen Hayley decided to go with an epidural. This epidural was supposed to provide additional pain control after the surgery, numb the incision and the surrounding area. The secret is; it had to be placed in exactly the right area of the spine.
The anesthetist seemed to have difficulty getting it in the right location in Hayley’s back and then he dropped the “sterile” needle on the ground; he get a new one. Finally everything was in place. Hayley did suffer through that epidural the pain and pressure did hurt her. Pain or not we knew we needed to shoot for the most pain control possible post-op.
Surgery lasted 12 hours with 2.5 in recovery. After 15 hours I was ready to see my girl. Nothing prepares you for when you first lay eyes on your child after going through this major surgery.
Hayley entered the “ICE” room on 4D and the site was startling at first.
- She had 6 IV pumps running. They were all doing something different.
- Hayley had 3 IV lines running into one arm
- Oxygen vent
- Compression Stockings
- an “NG” Tube coming out of her left nostril draining her stomach fluids, a Catheter draining her bladder
- Pain infusion through separate IV (steady backround)
- An additional pain pump that allowes her to push a button to “top her off” regarding the pain.
- She also has the epidural running into her spine which seemed to be helping freeze her surgical area
- Her incision is open and is a 14” long cut.
The compression stockings on both legs for circulation. This is to prevent blood clots from the total immobility.
There is not an area on her body that isn’t invaded by something. This is big! She is holding up better than I would ever expect.
They Cannot Get IV Started 🙁
Hayley was a little coherent but not much. She was in and out and doesn’t remember anything. She kept wanting to pull out the tube in her nose. That was clearly her biggest source of aggravation. Hayley’s room was known as the “ICE” Unit and therefore there was one nurse for every two patients. Nurses in this room made it clear that Hayley was off the charts in comparison to other patients. Her surgery was a BIG one. She had many things for them to control and deal with. I think Dr. Shapiro put is best when he stated “Hayley is (3) football fields away from what anyone in this hospital is used to seeing.
Hayley was in and out for the second night. There was lots of pain even with the epidural and nurses woke her every hour to check blood sugar levels, blood pressure, and temperature. The noise in the ICE room is nuts.