24th July 2009 Friday
Day -5
We arrived at RCH at midnight into Emergency, went straight up to the 6th floor and into the fishbowl (the nickname they use for the Transplant Suite because of the glass walls). It was 1am by the time we got settled into the room and Doug had gone down to the car to get extra stuff. There was a lot to do with a lot of medicines for Jake to take, and he was wide awake because he had managed to get a couple of hours sleep so he sat up watching the Disney channel.
We were woken at 9am for his morning bath. He has to take a bath every 6 hours to make sure that his skin is not burnt by one of the chemotherapies that has a habit of leaching out of sweat pores, so 9am, 3pm, 9pm and 3am. It should be interesting when we have to wake him up for his next one in the middle of the night. There are also oral medicines at regular intervals and mouth care 4 times a day on top of that, so I will let Jake sleep when he can.
25th July 2009 Saturday
Day -4
We had the 3am bath this morning and Jake did not mind so it went well. We did it really quickly, rubbed him down and changed his pyjamas. He went back to sleep as I covered him up again.
We were woken up again at 8:30 because he needed orals and his 9am bath. He has now been connected to a heart monitor in preparation for the next stage of chemo!
They gave him some Phenergan which is an anti-allergen but also makes him drowsy so he slept for the whole day, which was a good thing since the chemo they were doing causes pain.
He had some fever and his blood pressure dropped, but apart from a couple of spots on his back (minor reaction to the ATG) he is great.
26th July 2009 Sunday
Day -3
The bath at 3am was not fun mostly because we didn't go to sleep until 1am. The water was cold and because I was half asleep I did not wash him properly, so the rash on his back got worse and he developed some large red spots on his hands and feet.
Jake has been throwing up all day so he could not stomach any of his medicines. The nurses were worried that he would react again today to the ATG, but he has been a champ. He was not sleepy today and the one time that he did fall asleep it was 15 minutes before his next bath so I had to wake him up for it.
Today we were supposed to insert the catheter to make it easy to drain his bladder (as one of the chemotherapies can burn him if it stays in his bladder for too long) but he got scared and would not relax enough so they had to abandon it. This means I have to monitor his nappies vigilantly as he can't sit in his urine for too long due to the toxicity of the chemo. A side effect of the insertion attempt is that that the inside of his penis has been bruised.
It has been causing him pain to pee, so he was holding his urine in. Because we need him to empty his bladder on a regular basis, in the end I had to force him to pee because it had been too long. I told him that if he did not pee we would have to try and insert the catheter again, and that got him to grit his teeth and pee through the pain. The nurses visibly relaxed when he had.
He has now perked up quite a bit and is doing very well. He has no temperature and the rash has gone down. We have one more bath scheduled for 9pm and that is the last of the 6 hourly baths, but I think I will keep doing two daily just so that he stays nice and clean.
It's going to be a long night of painful peeing and frequent nappy changes. We will see what tomorrow brings.
27th July 2009 Monday
Day -2
It has been a long day, though the procedure to insert the nasogastic feeding tube only took 10 minutes. Jake really did not want it to go in. We had one to play with, explained all about it, and roleplayed the insertion with a puppet, but nothing worked so in the end we had to hold him down and do it anyway. He struggled and started to bleed slightly out of his nose. He cried so much, and I had to hold his hands for a while to stop him from trying to pull it out. I held him and hummed in his ear until he calmed down but he was tuned out. The face, the eyes. I lay down next to him and he was exhausted by the trauma so he quickly fell asleep holding my face.
The doctor came in as I was about to drift off and asked me to move "for my own comfort"! I started to get off the bed and Jake immediately woke, reaching out for me and gripping tight. I stayed close to reassure him. She went on talking about something and then she left. I stayed on the side of the bed and patted his head. I should have just stayed in the bed. His comfort is what is most important now, not mine.
Now he has the tube in, but I have to watch that he does not pull it out while he's half asleep. Everything else is amazing. The rash comes and then disappears, and he has not had a temperature today. He is still sleeping but occasionally he will stir and cry out.
The ulcers in his mouth have started, which is why it was so important to insert the feeding tube today as tomorrow his mouth and throat may have been open and swollen and generally tolerated the trauma a lot worse. On the plus side, now that he has the tube they can just push medicine through the tube so we dont have to wake him for orals.
There is always a silver lining, and as Doug once told me: "this too shall pass".
Sweet dreams to all.
28th July 2009 Tuesday
Day -1
Today was a rest day. Nothing special happened, as they were giving his body a day off before the transplant tomorrow.
I am staying with Jake tonight and tomorrow to give Bibi a chance to have a rest and spend some time with Kai at Mum's place. Hopefully she doesn't spend the whole day worrying, and manages to get some restful playtime in with our other son.
Doug
29th July 2009 Wednesday
Day 0
Today is the day. Everything is set up ready to go. He has been being hydrated for the last hour to make his cells receptive, and is currently at the right stage in terms of all the preparatory chemotherapy that has been happening since the radiation last week.
There are currently 4 lines into his Hickman containing various fluids and drugs, he has a nasogastric tube with milk in it, and the stem cells are connected and about to be started.
The nurses have done three observations in the last half hour, and there are doctors standing by outside with Adrenalin and everything else ready for the possibility of a bad reaction once the transplant (graft) is started. It's a nervous time. The nurse is going to stay in the room for the 20 minutes that it will take to be pushed into his line to keep a really careful eye on him so they can react instantly if anything goes wrong.
This is what we've been leading up to for the last 8 months. Here it goes.
. . . . .
Well that was anticlimactic - which apparently is what almost all the parents think after all the precautions that are taken. His blood pressure rose slightly, but now (3 hours later) it is back to normal. All his other observations are fine, and his pee no longer contains blood (which is expected for a while after the transplant). It seems to have gone perfectly. Now all we have to do is protect him for the next couple of months until his immune system can take care of him again.
Doug
Small Scare
We had watched the Shrek 3 movie so I got up to turn all the lights off and get ready to settle down. I still don't know what made me look but I pulled the sheets back to see blood everywhere. The nurse walked in, looked and walked out to call the nurse in charge. It looked like it was coming out of his nappy. I moved him and took his nappy off, only to find that it was clean, and I don't have enough room to tell you all that crossed my mind.
I then noticed that there was a new drip and I looked at the lines to find that it was slowly bleeding. The head nurse walked in and saw me holding the line so she quickly got the clean and the gloves and connected the ends. I did not know what to do so I cleaned the bed and replaced the sheets and blankets. I froze. I am so glad that i looked. Oh well, its all good now.
Bibi