Thursday 13 Oct 2005
We went to the Hospital Dr as an out patience today and Aarons blood count was down again… We found out that his brother is not a tissue match (bone Marrow transplant)… So they will not be doing a Bone Marrow Transplant at this time… The Dr booked him in for tomorrow (Friday 14th Oct) to start immune suppressant treatment… Because we told him we were frustrated in just sitting around doing nothing... We were told that Aaron will be in hospital for a week or so... Then they will monitor him for 4 months to see if it works… If it doesn’t then they will look at getting another bone marrow match but they will lean towards doing the immune suppressant therapy again and just change the concoction a little… As it is less risky than transplanting from someone who is not related… Also they really want to see if his immune system will stop attacking his blood and if his blood counts will come back on their own...Then they will monitor him each week by taking a full blood count test to see if the treatment has worked… He feels happier that something will finally be happening... He is also looking forward to the fact that he will be getting all the attention from the nurses again!!! (boys and girls)(*wink wink)
Friday 14th October 2005
Aaron is in hospital today and he had a platelet transfusion as his Platelet level was 11 and they wanted it to be higher so they could then insert a Pick line which is a small tube that is surgically inserted into his arm … it goes right down into his chest along the vein to administer the treatment to a main artery… He had a reaction a few hours later where he was shaking severely… It is called a rigor… everyone was worried... Corey and Dad were there when it happened, I wasn’t… I was picking the children up from school… Apparently the rigor was so violent that his 64kg body with the convulsions moved the hospital bed so much that it was knocking against the wall... The Dr’s seem to think it may have happened because his body is trying to fight a germ that he may have in his system at the moment… Or it could have been a reaction to the test dose of the horse ATGAM that they have to give him before they give him the full course… They gave him 2 bags of antibiotics to fight the infection just in case… and have postponed treatment until they are sure that that was why the rigor happened…
Visitors…. Myself, His brother, Dad, and our border..
Baby sitters…. friends that lives close to hospital
Sat 15th October
Aarons treatment (horse steroid Atgam and Cyclosporine…Immune suppressant) is now postponed till Monday as there are not enough staff to give him the attention if something was to happen again… They are quite sure that he did have the rigor because of a germ in his body... His temp has been slightly high with one or 2 peeks… Platelet level was 34 today...
Visitors…. Myself and Dad
Baby sitters…. am-one of my girlfriends and pm-Aarons school friend and partner…
Sunday 16th Oct
Aaron was looking pale again today... His lips were not the normal blending in white, they actually looked blue.... They will be giving him some blood today sometime… Nothing much else to report… He is finding it much harder this time in hospital as he really does feel sick... Last time I think it was just a change of atmosphere and a bit of a break... I think the longevity of this disease is sinking in…
Visitors…. myself, a friend from TAFE and girlfriend, Aarons Tennis buddy, Dad, friend from High school and her partner…
Baby sitters…. A church friend’s son...
Mon 17th Oct
Today we found out that Aaron has 10% PNH cells... Apparently someone who has full blown PNH has 50%... So this has to be monitored over the next little while... We were told also that it could go full blown at any time... They are definitely treating him solely for SAA at the moment... The treatment for PNH is the same anyway...
They gave him 2 units of blood yesterday because his blood was so low... (HGB 66)
They didn't administer the Atgam today... He has 4 days of that at 2.50 litres per day.. For the first 3 days he has to have constant monitoring as the stuff can cause some really serious things to go wrong... Like his neck to swell and he can't breath... or the heart to stop... or thrombosis... Arh just a walk in the park really.... Some of the nurses have not dealt with this stuff and are a little wary of it... So it will keep them on their toes tomorrow!!! And me biting my nails... He will be administered it for 6 to 8 hours and he will have hourly observations taken... He is a little nervous about it.. I’m glad they did not do it today because I was not able to get up there to see him till tonight for a few hours... Tomorrow Izra will be at kindy and Ethan at school... So I will go up there first thing...
Visitors…. My self, Aarons Dad and a friend
Baby sitters….pm-Friends from church who live close to the hospital...
Tuesday 18th October
At 9.20am today Aaron started his first day of Atgam treatment…. In preparation for the Atgam they had to give him some paracetamol and some Phenergan and some adrenaline… The Phenergan made him instantly drowsy and he fell asleep… and hour later (10.20am) they administered the Atgam and they had to have 3 people watching over him... The Head RN a cardiologist and another nurse… they had to take obbs every 15 mins for the first hour…
At about 2.30pm he had a rigor… He started to shiver… They put on the space blanket (silver heat blanket) and then gave him some Panadol… He had just gotten warm and he needed to go to the loo so he had to get out of the nice warm bed and pee… He got the shakes almost instantly… The head RN called and got some Pethidine okayed by the DR’s… One injection of that settled him right down…
One of the Dr’s reacted a little funny today to a comment Aaron said. It was.. ‘they still didn’t know what is wrong with me”... She said, 'yes we do'… In a bit of a defensive but not rude way… Andrew our Dr friend was there he had on his Dr identity tag for the hospital he is working in at the moment…. I think she may have felt that she had to prove herself or something…
Visitors…. Myself, Dad, Andrew, Marey.
Baby sitters….church friend
Wednesday 19th Oct
Elisabeth (the nurse looking after Aaron in the morning) got it all running a little earlier today because of the rigor yesterday they decided if they did it all together things would go much better as the pre meds would last longer and that would probably help him not have another rigor… So they did the Phenergan and the steroid then straight on with the Atgam.. It ran all day at 400 with no problems…
Aaron was upgraded today to a private room as he was suffering from neutropenia… (Nut's @ 0.70 and falling) Which means he is highly susceptible to germs and infections… So to control who comes to see him and the Dr’s and nurses treating him he is in a room by himself and everyone that comes in to see him has to wash their hands etc… He likes the room by himself as he can sleep much better and he can leave all his bathroom products in the room… If it is noisy he can just close the door…
A new nurse came on this afternoon and she had very poor people skills… She changed his bag of Atgam to the last 500mls and she put the time right down to 166… which means the bag would go over the 8 hour time limit that he needed to have it in… When I asked her about it she said really defensively that she was the Rn on duty and that was the way she wanted to do it… that she is not prepared to risk the patient… I thought about it and I discussed with Aaron and Dad and they were telling me that I shouldn’t worry about it because Aaron would be the one that would have to put up with her treatment tonight and she might get nasty… but it was just not sitting right with me… I felt sick to the stomach like I do when I feel the boys need protection…. So I went out to talk with her again… I said ‘I’m not trying to tell you how to do your job… I’m just trying to understand because what is happening now is contrary to what has happened b4 and he only has 2 hours left in the 8 hours not three… at 166 the bag would take 3 hours…’ she said that she was wanting ‘to slow it down because of his reaction last night and watch if for an hour… If all was okay then I will turn it back up.’… But she was so defensive about it…
Visitors…. Ursula, Dad, Warrick
Baby sitters…. Kids at kindy and after school care
Thursday 20th Oct
Bad day today Aaron had no energy he was falling asleep while I was doing a 10min hair tidy up job and trimming his 5 day growth on his beard... He is not able to use a razor anymore because his blood levels could drastically change if he was to nick himself just a little bit!! His head was really hurting and his jaw and tongue were swollen… (no one told him that while he was on Atgam he shouldn’t brush his teeth)… Apparently if you brush your teeth when you are on the stuff and your blood counts (mostly white blood cells... Neutrophils) are down you are more likely to break your gums and get a germ in them which cause swelling of your tongue and neck... The sole of his feet were really sore as if he had been standing on them for hours… Only he had been lying down for the past 4 or so days…. Because he was having a bad day I was having a bad day and was worrying about him… It is so sad and frightening to see him so weak!!! He had 1 pint of blood tonight…
Visitors…. Ursula, Dad,
Baby sitters…. Kids at kindy and after school care
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