6th August 2009 Thursday
08:30
Jake started getting uncomfortable at about 6am and has gone downhill since then. His breathing is very shallow, blood pressure is low and oxygen saturation is low (he now has to wear the oxygen mask rather than just having it near his face). They are giving him a fluid bolus to increase the fluids in his body to help his blood pressure to rise. They are doing observations every 15 minutes, and if the bolus does not work then they will give him dobutamine to stabilise his blood pressure.
The chest x-ray came back clear. I sat and cuddled Jake while we watched "Brother Bear" during which he slowly calmed down, and he was laughing and playing by the end of the movie, though I could not make him laugh too much because he would start coughing.
11:00
We are now finishing a surprise heart ultrasound. The cardiologist conducting it was very disappointed that I had not been told in advance. She had been summoned to perform an emergency ultrasound because the doctors feel that the virus might be in his heart. We also got a visit from the "bug busters" (infectious diseases)! It is all go here right now.
I managed to get him to have a bath which has completely reduced the fever and the itchy feeling. His oxygen saturation has also returned to about 97.
21:30
Jake fell asleep at 8pm. He is complaining of itchy ears, but because the doctors have gone home and the ward doctor has been run off her feet he will have to wait until tomorrow to do something about it. His temperature has stayed down and they are going to keep the panadol coming regularly to keep him comfortable and try to prevent the downward spiral that seems to be the pattern every time he develops a fever.
Hopefully he will sleep well and wake feeling just as fine as he does now. Fingers crossed.
Good night.
7th August 2009 Friday
13:00
Jake is doing really well today. Doug figured out how to get video in on our portable DVD player, so Jake is now playing the XBox through it.
I had asked the education co-ordinator to tell me about some educational websites and games that I could work with Jake at, and this morning one of the teachers came and sat with Jake for half an hour. He liked that.
As for health progress, well he woke up with a rash all over his body, but as always it will have completely disappeared by the time the doctors get to see him. Tomorrow they have booked a photographer to come and take photos of his rash while it is still around.
In good news, his white cell count has risen from 0.1 to 0.2. Nothing huge, but it is an indication that things are starting to stir in the depths of his marrow!
Bibi
20:55
When I went to visit this morning, Jake told us that he was only going to be in hospital for another two days and he really wanted to go home. It was heartbreaking to have to tell him that he will be in hospital for quite a few more weeks. He cried a lot.
Doug
21:27
Dianne rang to talk to me and Kai did not want to say hello to me but was quite happy to talk to Jake. He even told Jake that he loved him. Jake's eyes teared up and he said a quiet good night and he loved him too. I don't think Kai heard him, and Jake then turned away and didn't want to talk any more.
On Jakes progress today, I have a sneaking suspicion that his come-and-go rashes which always occur in the morning (and disappear by about 1pm) and then again just as he is about to go to bed might be associated with a reaction to one of the drugs that he is given. I was talking to the nurse and she told me that he has one drug which is only given twice a day! No coincidence maybe.
Doctor Tiedemann came in this afternoon and told me that he was doing fine (as if I could not see that). She also said that they were going to take away his panadol so that they can tell when the fever starts, and then he can have it only once his temperature reaches 38.5, so we will see how he goes tonight.
Good night all.
Bibi
8th August 2009 Saturday
Neutrophils: 0.35
(I had a head ache so did not enter today's info until Sunday.)
Good news - his counts are starting to stir. He now has a neutrophil count of 0.35. The doc immediately warned me that I should not get too excited as the counts will go up and down for a while.
There was a moment when his temperature started rising and his O2 saturation was going down, so we gave him panadol when his temp hit 37. The nurse was not willing to wait any longer as she was concerned about his comfort. He was low in platelets so he had a transfusion today, and otherwise he was great.
We told Jake that if he started eating properly then we would be able to take his nose tube out, so he is giving it a good old try, though he also told me he was sick of the hospital food and wanted some "real" chicken and chips. Unfortunately he is on a clean diet so he can't have take out for a long time.
9th August 2009 Sunday
Neutrophils: 0.74
Awesome news. I was eager to find out what his counts were today, and they had come up - and by a huge amount. His neutrophil count is now 0.74.
Marj stayed with Jake for the rest of today and tonight so that Doug and I could spend some time together. She and Jake played games and watched movies. He did fine and all went without incident.
10th August 2009 Monday
Neutrophils: 1.52
We had a good day today, though we slept through the alarm and did not get back to the hospital until 9:30 (sorry Marj). Jake was happy to have his bath and is getting used to having to spray an anti-fungal up his nose twice a day.
As usual we needed to get samples of everything from snot to poo to send to the lab. They do this every monday. I asked for Jake's counts this morning and his neutrophils are up to 1.5! I asked, and once he stays over 1.0 for two consecutive days then people who enter the room can stop wearing masks. I will have a chat to the doc tomorrow to find out what the criteria are for us to be able to go home.
I passed Doc Tiedemann and she said Jake is doing really well and is probably breaking all their records for speed of recover. I did not ask more thinking she would come to see us but she went home without coming into Jake's room so I will ask her to clarify tomorrow.
Dianne rang to talk to Jake and so that we could say good night to Kai, and when Jake heard Kai say "Hello" to him and "I love you" it made him cry and he did not want to talk any more. I asked him why and he said that he preferred to be home so that he could talk to Kai in person. I hope he remembers this when we do get home so they play nicely instead of fighting :)
We are getting ready for bed now. I'm really looking forward to seeing Kai tomorrow, and Jake is looking forward to having his dad stay overnight and play XBox with him.
11th August 2009 Tuesday
Neutrophils: 2.5
The dietician visited Jake today and decided that he is doing so well that they will stop the milk feed through his nasogastric tube during the day. It will only run from 8pm to 6am now. She will come back to check him on Thursday and if he is still doing well then she will stop the feeds entirely. Two days (of good progress) after that he can have the tube removed!
Jake gained some weight today - an influential factor on how much they feed through his tube.
The physiotherapist visited as well and brought a baloon and two mini tennis racquets, so Bibi moved the bed over and they played tennis for a while. Jake was standing up to play and loved it.
The doctor said that they need to have three negative cultures before Jake can go home, which means another two weeks minimum.
Doug
12th August Wednesday
Neutrophils: 4.3
10:30
Jake woke up happy and energetic. He had a full bowl of Coco Pops and half a banana for breakfast, which is a lot for him.
His neutrophils are now high enough that the nurses don't need to wear masks any more!
The music therapist came in and we played with an electric drum machine, which Jake loved so much that she left it for him to play with until she returns at midday.
12:15
Jake had bacon and eggs for lunch. If he keeps eating like this he will be able to get rid of the nose tube in a few days.
I spoke to Romeo (a new doctor) and he said that ordinarily his counts are good enough that he would be able to go home soon, but because he has the HHV6 virus they need to run the anti-virals for three weeks and then monitor him for two weeks after that. We are currently two weeks in, so based on that we will not be going home for another three weeks at least.
Mei Ling (his nurse today) said that they will start to reduce his G-CSF dose now that he has a high neutrophil count, to see how much of it is due to the G-CSF growth promotion and how much is his marrow producing neutrophils.
17:15
Amazing news!
Aimee (the nurse co-ordinator) came to see me and said that we would most likely be going home before the end of next week, and possibly as early as this Saturday, because they didn't find the HHV6 virus in his spinal fluid. Basically he will be able to be at home (still in isolation but allowing his brother and grandparents to visit) when his dose of ??? (immuno-suppressant) has been reduced to three times per week, so at that point we'll need to go back to the hospital three times a week for a half or full day (depending whether red blood or platelet transfusions are required).
Either tomorrow or friday the doctor is going to make the final decision about whether we will go home this weekend or sometime next week.
Doug