9th April 2009 Thursday
We started Block One pretty smoothly. Jake had a lumbar puncture, and when he had recovered I carried him up to the sixth level so that he could be admitted.
His chemo all went to plan and by the numbers.
12th April 2009 Sunday
Easter was uneventful. I was glad that we chose to stay at the hospital then, as most of the kids were sent home for Easter so all the kids that were left had a room to themselves. We watched the Good Friday Appeal on TV - luckily they chose not to do anything on the 6th floor so it was all dark and quiet.
The one story I do tell is that my sister was with me that day, and I went out of the room holding Jake's full wee bottle. A guy asked how my day was, and I told him that it was nice and quiet. I went back to the room and my sister turned to me and said,
"Do you know who that is?"
I replied, "No, who was it?"
"That was Nathan Buckley."
I shrugged - if I watched more TV I would know who these people were. I was asked if I wanted people in our room and I told them not to bother because (unless they were the Wiggles or Hi5) he would have no interest in meeting people.
14th April 2009 Tuesday
We could not wait to go home on Tuesday, as kids started coming back in and so there was a lot of screaming and crying. It was a bit of a shock after having a quiet weekend. We went home at 8pm after an injection to help boost his white cell count production.
17th April 2009 Friday
Jake took a turn for the worse: his temperature started rising. I waited 2 hours with his temperature over 38, and just as our alarm was about to go off I took his temperature and it was 38.9. Time to go in. I called the hospital to tell them, and left with Jake at midnight.
We got to the hospital at 1am. It was not until 4 am that we were finally sent from Emergency up to level 6 (Oncology). The good thing was that we had our own room. It was nice.
His counts had plummeted so he needed a red blood transfusion, and they also started the antibiotics. I'm not sure if I have written this before, but neutrofils are a type of white blood cell that is used by the body to keep the symbiotic bugs from getting into the blood stream. Jake's neutrofil count was 0 - they could not find any - so he got sick with a bug that I had no chance of preventing. We had to wait for 2 days until the cultures grew to determine whether he had a bug, and what kind it was.
19th April 2009 Sunday
It was confirmed that he had grown bacteria in his blood, so we had to stay 10 days for the course of antibiotics. It was all going well, until on the third night he started getting hypothermia, but only at night when he was asleep. The ward doctors did not know what to do about it, so they said to just watch it and see what happened next. It was intriguing, as he felt warm to the touch but the internal (ear) temperature read 34! His temperature finally settled and he had more energy.
We were told that we could leave on Tuesday, then come back on Thursday for the next round of chemo! I thought that was silly, so I spoke to the nurses. His counts had recovered to a higher level than he has had since we started in December. They agreed to bring his next round of chemo forward so it would start on Tuesday and extend his stay.
20th April 2009 Monday
I spoke to one of the nurses who were organizing the lumbar puncture list for the next day, and she said that Jake was not on the list. I was surprised, but she did not know the reason why. I then had a late visit from one of the ward doctors to inform me that Jake had grown a variant of staph virus, so he needed to have his antibiotics changed. Even if we had wanted to go home, they would not have let us. We also found out that one of the antibiotics would have reacted with the methatrixate, making it toxic. He needed fluids for 24 hours before the lumbar puncture, so it all was moved back to Thursday.
23rd April 2009 Thursday
Jake had a lumbar puncture, and all went well.
1st May 2009 Friday
We were moved to a shared room, because someone brought a child into the playroom with raging chicken pox - a rash and open sores. How can the parents not have known? All the children who had the bad luck to be in the playroom at the time had to be given a special injection and isolated, in case they developed the virus too. I overheard the doctor explaining, and he was saying that if the kids developed the chicken pox then their chemo would have to be paused while they fought of the virus, then continued afterwards! More time in the hospital.
3rd May 2009 Sunday
I went on a course to learn Reiki, so I was not in the hospital this weekend. From what I heard, Jake did great, and Doug (who stayed with him sat night) actually managed to get some sleep. Jake was sent home at 3pm, so was home when I got home from the course. It was a great surprise ;)
5th May 2009 Tuesday
Yesterday a District Nurse came to our house to do a finger prick, and give him the injection to boost his white cell count production. His blood clotted on the way to the hospital so they could not do the count. I told them to leave it until Friday. He is looking a bit pale.
We are spending today at Dianne's so that Jake and Rune can play together, and we will see Jade and Jazzy tomorrow.
With regard to Jake's treatment I have no idea where we go from here.
7th May 2009 Thursday
Jake woke up feeling tired and just wanted to sit in front of the TV. He set himself up with his Elmo pillow and red blanket, and just lay there. I gave Kai his breakfast and noticed it was 11am and Jake was still drowsy and had not eaten any breakfast. On a whim I took his temperature - it was 39.3. We have to be in the hospital the second it hits 38.5! I did not want to believe it so I took Jakes beanie, blanket and jacket off, and waited 15 minutes.
I called Doug to tell him and he said not to play around and to just pack. I took Jake's temperature again, and it was 38.7. We had to go in. I told Jake and he started crying. Kai clung to my arm. I rang the hospital to tell them we were coming in, then packed, got the boys dressed and put them in the car.
Doug met us in the Emergency car park and I took Jake in while Doug went to park the car. The good thing about ringing ahead is that we get to walk straight in and don't go through a waiting line and Triage, so we went to the usual room, a glass-walled emergency cubicle. The time was 12:30pm.
Doug took Kai to have some lunch, and when they came back we had moved to the Resuscitation area so that the doctors and nurses could have more room - the fishbowl is quite small. Dianne took Kai home with her, as there was no point in them hanging around with all these sick people, and Doug went to work.
The day was interesting. Jake's blood pressure was not coming up, even after getting huge amounts of fluids pumped into him. A doctor from ICU (Intensive Care Unit) was called in to see Jake, and he prescribed a drug to help raise his blood pressure (dobutamine). They were all a bit mystified, and almost sent us to spend the night in ICU.
Finally Jakes blood pressure stabilized. His temperature and heart rate were still high (170) but I was assured that it was just a result of the fever. We were finally taken to the ward at 9pm, where the nurse went into a fit and the nurse in charge was called in. Apparently the dobutamine should NEVER be put through the port and straight into the heart. It should also NEVER be mixed in with the antibiotics or blood transfusion, so they spent the next hour correcting all this. They also had to add another line to Jake's elbow (with a splint), through which they put the dobutomine. They are going to investigate the case!
It seems that every time we are here we cause dramas. Each time its a new one, but at least I am learning! The nurse in charge also said that next time if I am not happy with the way Jake is treated in Emergency, then I have the right to demand that the Emergency nurses back off and call a nurse down from the sixth floor to do the procedures instead. I must say it's very tempting!
He has grown the Sudamonus virus again, which is originating in the the central line between his port and his heart. This is the same virus that he grew to cause the last fever. They have done chest x-rays, stool and urine cultures, and today they are going to do an ultrasound of his heart to see if they can find any virus hiding in his heart - if it's in the central line then it could be in his heart too!
11th May 2009 Monday
Jake has received two red blood transfusions, and one of platelets. His blood pressure has remained stable so far, since he was weaned off the dobutamine, but his temperature is still spiking when the panadol wears off.
This morning we had a visit from the "infectious diseases" doctors, or "Bug Busters". They have extended his antibiotics to 2 weeks and are now giving him gentamycin and timantin. If we return again with the same virus then they will have to remove the central line until they have killed the virus.
Right now we don't know when we will go home, much less what the next stage will hold.
17th May 2009 Sunday
Jake has stabilised and is relatively perky again. A good side effect of the infection is that they are disconnecting him from the drips for good portions of the day now so that they can block off the lines that are attached to his port (inside his chest) and fill them with antibiotics in an attempt to sterilise the plastic. This means that he's able to wander around without being attached to a pole by one to three tubes which makes life easier.
The plan at this stage is to be discharged on Thursday, after a lumbar puncture and doctor's appointment.
22nd May 2009 Friday
Jake had the lumbar puncture yesterday and all went well. The ward doc has decided to observe him over night after the antibiotics are taken off in case he develops a fever again.
So we are going home. They took some blood to run cultures on and see if he grows the virus again. Fingers crossed.
Bibi