30th July 2009 Thursday
It is now one day after the graft and all is going well. Jake is eating a small amount but they have upped the feeding rate of the milk through his nasogastric tube. I requested that it not be set to the full rate as I felt that since he was eating a small amount that he should be left a bit hungry to encourage his eating, instead of filling him with milk.
We had a visit from the a doctor who made it very clear that they thought he would get worse before he got better. He tried to make me understand. I just wanted to concentrate on how well he was feeling now instead of thinking about what ever the future may hold.
He will also be receiving the G-CSF injection in the insuflon (a small plastic tube in the skin of his stomach) everyday until his counts recover. After the nurse finished I asked her about the possibility of Jake "getting worse before he gets better" and she said that due to him not having any neutrophils then he can't fight bacteria, not even the ones in his own body. This means he will most likely develop a fever and require antibiotics. She also mentioned that it will not be a huge shock for us seeing as we had the two months of fevers before the transplant. So it's a case of "been there done that"!
Jake is such a champ. Every nurse that has looked after him has asked me how old he is in disbelief, thinking he must be 5 or 6! He has huge charisma. They all think he is so cute and smart. One nurse even sat and tested his maths and walked away shaking her head in disbelief. He is so smart!
Jake was happy and doing great, but we just finished talking to Kai on Skype so he is now crying and feeling sad because he wants to go home and play with Kai. We are all looking forward to going home but it will be a long time yet.
31st July 2009 Friday
Today was non eventful. Jake is doing well. Not eating much since they upped the feeding but is still drinking some water. They gave him a transfusion of platelets today as his platelet count was down below 20.
He was tired and crashed about 7pm. His temp went up to 37.3 but went down again when I changed him and washed his mouth.
1st August 2009 Saturday
Jake is doing well. The good thing is that today was uneventful. He was a little tired and fell asleep at 5:30, so I did not manage to wake him up to give him his night bath. I guess the sleep is more important. It's a time where we just have to sit and wait for Jake's counts to recover.
2nd August 2009 Sunday
He had a restless night and awoke with pain in his mouth so we gave him panadol. I watched him and he looked like he was having bad dreams. His brow was wrinkled and he was frowning.
They gave him a transfusion of platelets today as his platelet counts have dropped again.
In the morning the nurse gave Jake stronger pain relief (codeine) and he actually perked right up - maybe he is in more pain than he realises. Marj is going to stay with him today so that Doug and I can have a day and night together.
3rd August 2009 Monday
We came back in to the hospital early so that Marj could go to work. She told me it all went smoothly last night. He fell asleep early and his temp started to spike so they acted early and began antibiotics which seems to have worked as his temp has now dropped.
His red count is now low enough that they are giving him a red blood transfusion. In good news though, the milk feeding rate has been put up and his weight is now going up again, which is also giving him extra energy. He still does not feel like eating anything but it's not as big a problem any more. He feels continuously nauseous, so they are keeping up the anti-nausea medicine and the codeine to help him feel better.
A doctor came to visit and informed me that Jake's cultures from yesterday have grown a bug. This is inevitable really, seeing as he has no defences against anything both from outside or inside his body. The exact bug has not been identified yet, but they have started him on broad spectrum antibiotics in the meantime. This has worked well as he had a temperature spike on Sunday night, and since then his temp has stayed below 37.5.
5th August 2009 Wednesday
10:45am
It's my day with Jake again (after staying last night with him). I got some sleep but it was interrupted about every hour by one of his 5 drip pump machines beeping.
Jake's temperature rose this morning to 39.1, and he is still very tired (has woken to take medication but gone back to sleep each time).
12pm
A doctor just came to examine him, and she feels that he may have a chest infection. She can hear something in one of his lungs, and he doesn't have an infected mouth or bottom so she thinks it might be viral because of the rash that comes and goes. Dr Tiedemann is going to come in today as well to see how he's going.
On the plus side, the bug that was found on Monday seems to have been treated successfully within the first 12 hours, as it has not turned up again in subsequent cultures.
1pm
He just had a chest x-ray to look for infection so we should get results later today.
3:30pm
The chest x-ray was clear, so there's nothing in his lungs, but the culture and/or special blood tests revealed a virus so someone from infectious diseases will probably be in to check him out later on.
4:30pm
The virus that he has is called HHV6 (a herpes variant). Dr Waters says that they commonly see it in post-transplant patients, and they are starting the appropriate antiviral medication. He also said that the second week of recovery is generally worse than the first as his body will be at its lowest point before beginning the slow climb back upwards.
6pm
Jake's temperature has spiked over 39 again, his heart rate is down and his O2 sats (oxygen in his blood) is down. He has a mask giving him oxygen (though he won't wear it because he's phobic from the anaesthetic mask so it's just wafting over his face). He's now on three different antibiotics and one antiviral.
7:45pm
The doctor has just ordered another chest x-ray to be sure that they haven't missed anything.
Doug