(World started collapsing)
Had a meeting with Rani's Specialist, 2 of his underlings and Rani's Nurse, to be told that on Wednesday instead of the MRI, i thought Rani was having that they were going to put a Central Line into a main vein in her neck and feed her TPN _ a special formula of proteins, vitamins etc....plus also do a gastroscopy (a camera down the throat) and do a bowel biopsy. Also that they suspected that she had bile lakes, which was could possibly be the cause of her not gaining weight and that he was going to speak to her Surgeon was happy to open her up again and see if could rectify the problem.
Later that day we were told that her Surgeon wasn't prepared to put her through an unnecessary operation until he saw the results of an MRI.
Mum came down with a cold and didn't want to put Rani at risk, so i went into the Hospital early. Plus John and I booked ourselves into Rydges across the road, so that we were close by if needed quickly.
Again her lipase (a chemical in the pancreas) flared up again going to 2100 insead of the normal level of 250, leading them to think that she may also be getting pancreatitis...great...so again she was taking of the pump and drip fed. She was meant to fast from 4am, but instead she started at 4pm.
After a horrible night sleep and feeling full of the flu, I walked across to the Hospital. John had to go to work, but Mum was already at the Hospital. Finally at 12.30 it was our turn to go down to the 2nd floor for her surgery. I hate having to sign the consent forms, listen to the risks again and hand over my baby. i am glad I had mum with me, as it was nice to talk to some one and have a distraction while the operation went on.
First her Surgeon came out after finishing his part, he was happy with the placement of the Central Line but wasn't happy with her clotting, but all in all he was happy and said that her Specialist was performing the Gastroscopy and would be out soon. About 20 minutes later he came out telling me that Rani was heading of to recovery. He said that he didn't find anything unusual in her bowel but was very concerned about her Verices (enlarged veins) in her esophagus, which he was concerned could bleed at any time, even showing me a picture. He said he would discuss more later when John got in after work.
About 5 minutes later our names were called to Recovery and to see my baby again was heaven. The 2 procedures took 1.5 hours, and hten we went back to the room. Mum left to get Josh and Teagan from school and Rani pretty much slept the rest of the day away.
At around 4pm she was hooked up to her new feeds and her fat emolsion that both go into her central line and given 6ml per hour via the NG tube ust so she has something in her belly.
THEN time for the big talk. (Where my world completely colapses)
Rani's Specialist came back to her room at 6.30pm and sat us down and told us that after speaking to the transplant team, it had been decided that there was to much damage to Ran's liver and that even an operation to try and fix the Bile Lakes wouldn't prolong the life of her liver so instead she is going on the transplant list. You could have knocked me down with a feather...we both knew it was coming but not this soon. Also they were extremely concerned about the Verices and had let ICU know about her. WOW!!! So we wouldn't be leaving the Hospital until after Rani had her Liver Transplant, so we were told that we would probably be in Hospital for at least another couple of months
Shocked and stunned John and I after settling Rani to sleep with some help from Codine went across the road to Rydges and had some dinner and some stiff drinks.
Mum was again at the Hospital when I walked across. She said that I could have a sleep in but didn't really sleep.
We are trying to see the positives, such as Rani won't remember any of this when she is older, she will be able to become more active and no more Hospital visits (fingers crossed)
We now have to come up with a new plan, as usually the kids stay at Mum and Dads while Rani is in Hospital, but we can't expect the kids to stay with them for 3 months let alone expect Mum and Dad to have them that long. So Mum and I were trying to work out some kind of Roster.
Rani was apparently happy this morning, but got more upset as the day went. There was a big meeting about Rani at the hospital today, with everyone from ICU, the Gastro Team, Surgeons even Pharmacy. They arranged a plan incase her Varices bled with ICU and has a kit and instructions at the top of her cot, which make me even more concern, although we were told there was only a 30% chance of this happening.
Unfortunately due to this risk she was unable to have any medication to help ease the pain, she had finally hit total exhaustion by 9pm, so John and I left her to sleep.
Mum is doing the morning shift so I can catch up on some house and living stuff...lol and I am now off to bed, to sleep soundly (I hope) in my own bed)