WE ARE HOME!!!
Apologies for not updating the blog, I did not have a laptop with me. On Sunday night (7/25) after two nights in the observation room on the surgical floor we were finally given a private room. After being on a communal room for 6 nights the little private room at Sick Kids was definetely a luxury to have.
Monday (7/26) – Maya got up and actually walked, she was afraid at first but then she continue to walk. She had also complained of back pain, and xrays were taken. An echocardiogram was also done in preparation for upcoming chemo. Maya’s chest tube was still draining a lot of fluid.
Tuesday (7/27) – Maya’s chest tube is draining less fluid, they disconnected the chest tube from the suction on the wall, the plan was to observe how much it drains without the suction. To get Maya ready to go home, her pain medication hydromorphon (11mg) is now to be taken orally (2.5 ml). After two doses of oral hydromorphone, Maya’s nurse informeds us that she thought 2.5ml was way too much for Maya’s weight and that she was checking with the pain team. The dose was then reduced to 1.2ml (less than 50% the original dose). We expressed our concerns about this and someone from the pain team would talk to us. Maya had a great day walking around 5B, 8A and the cancer clinic.
Wednesday (7/28) Busy, busy day. At 9am the nurse comes and tells us that transport would come to get us at 9:30 am for x-rays. Then plans changed as Maya had a GFAR (kidney test) scheduled for 10:30 am, since Maya was sleeping I did not tell her of the change of plans. Maya was sleeping and was fine until we got to the room and realized that it was the GFAR test which by now she knows involves a poke as they have to inject some radioactive material in her veins to see how quickly her kidney flushes it out. Maya once again lost it, she screamed, kicked, begged for us not to do it. Her heart reate went up to 220. The nurse put in the needle but the vein would bruise and she could not inject the liquid. After two attempts the nurse gave up and paged the IV team- which meant an hour wait. For Maya it is the anxiety of knowing that she will get poked, after the needle is in she is fine. It is is very heartbreaking to watch, and this is something we need to work on with her. While waiting for the IV team Maya thought that pictures were being taken as she was lying down and strapped to the sliding bed of the GFAR machine. Maya was happily playing with one of the nurses. The IV team came, and Maya again got anxious and cried, but this time was so quick, oh boy these people are good. Two people came in, the needle went in and they were done. After the test was done, the GFAR nurse gave me a hug and gave a present to Maya. I could tell she was feeling sad that she poked Maya twice and still could not get it to work. She was very apologetic.
We went back to our room to wait for the Xray appointment – which Maya did very well. While waiting for the xray appointment, someone from the pain team came and explained that two doses of high doses of hydromorphone would not cause any harm to Maya. She was defensive and said that they converted her IV dose to the oral dose and 2.5ml was correct, but since I had said that Maya was sleeping a lot after she started to take it orally, they thought about changing it to 1.2ml. This sounded like bullshit to me, as i only mentioned that Maya was sleeping a lot when the nurse said she thought Maya’s doze was way over for her weight and that she wanted to check with the pain team. It made me upset, yes I am not a doctor but it does not mean i am a dummy. I was about to blurt out that i did not believe her, but by this time I was so drained from watching Maya struggle on her GFAR test and the long stay at the hospital, and if I said something all of my rage and anger would have come out so i just said thanks for the explanation.
Thursday 7/29 First thing in the morning Maya was given adavent to calm her down as the plan was to take the chest tube out. A resident came in and took the tube out. Adavent did not help Maya at all and she again screamed in pain when they took the stitches out and pulled out the tube. Maya was also unhooked from her IV. They wanted to monitor Maya for a couple of hours before we were sent home. Then the Resident came back to say she forgot to take one stitch out, grrrrrrrrrrrrrrrrrrr, so we had to put Maya through all that strain again of taking the stitches out. Early afternoon Maya had low blood pressure and a high heart rate, they hooked her back to the IV for some hydration. I was all packed and by 5pm they told us that they were keeping Maya one more night to observe her, I was about to cry, and Maya cried as she wanted to go home. Oncology and surgery were debating wether to send us home. Then plans changed and they said they wanted to do another set of vitals at 8pm. To make the story short, we were discharged from the hospital and by 10pm we were home.
We spent 11 days at the hospital, with half of those sleeping on chair. It was a difficult experience, but thankfully Maya is doing well now. Maya is due to start her 6th chemo cycle this coming thursday.
Again thanks to all of you who have sent notes, emails, food, cards. Thanks to the prayer group who come to our hose the sunday before Maya’s surgery and to all of those who have prayed for Maya. Thanks from the bottom of our hearts.
Note: Did you know that rounds on the surgical floor take place between 6am and 7am in the morning. A team of sometimes 10 people come in. I am so done with setting the alarm at 6am, quickly go wash up, change and wait for the doctors to come. I want to sleep for 12 hours straigth :-). Also thanks Elena and little warrior Connor for dropping by every day this week.