Wednesday, May 17, 2006

2nd Week 21st-27th of October

Friday 21st Oct



Today was okay… he was so much more chirpy and awake this morning… it’s amazing what at little bit of blood will do to someone… I had a much better day knowing that he was feeling better… The treatment went really well and he had the first 2Ltrs of Atgam running at 400… then the last 1/2ltr at 166 and then cranked up again…



Visitors….Ursula, Lisa and Anna,
Baby sitters…. Kids at kindy and after school care



Dad called last night from his holiday to ask how Aaron was



Ursula’s Diary…… I felt I needed to get dressed up today plus I had my new tops to wear.. so I straightened my hair (not that you could tell after 1 hour in the humidity of the day) and put on a little makeup.. I felt a whole lot better… I was gearing myself up for a good day… as yesterday had been so bad!!!




Saturday 22nd Oct



Platelets are really low and have been for the past few days… Dr’s concerned about it.. but not really willing to do much about it till Monday when the ‘team’ of haematologists are back… Aaron asked about his reflux drugs… Pariet and Tazac today and if he could start taking them again as his reflux has been acting up… and he has not been able to take his reflux meds since he was first admitted three weeks ago… He had no treatment today.. just the antibiotic…. But we had to wait for hours to see the Dr their rounds took ages today!!! He didn’t end up seeing us till 3pm!!!



Ursula’s diary… Sunday 22nd Oct I was so tyred today as I woke up yesterday at 3am and did not go to bed till 10.30ish!! I slept a little beside Aaron while we waited for the Dr's to come and tell us what the go was with everything today… Aaron was a little upset today because he just wants to come home… He’s had enough of the hospital… His treatment is over so he wants to come home… but I am glad that he is not coming home yet as his platelets are below 10 and if he was to bump himself he definitely would bleed out!!! Or be in serious trouble!!!



Visitors…. Ursula,
Baby sitters…. Jackie and Mark



Sunday 23rd October



Today Aaron was in good spirits again… He was given a platelet transfusion last night.. 4 lots… in the hope that it would lift them a little. Apparently it only lifted them about 0.7.. Which was nothing … so this afternoon they gave him another platelet transfusion (a 4 Unit bag)… they gave him some drugs to sleep last night and he said he had the best nights sleep ever… so now he is going to ask for that every night… Aaron had some drugs for his throat today… it was a bit sore as a side affect for the Atgam and brushing your teeth when your nutrifills are low…
8pm he has cyclosporine… at 12 he has Timentin and then he has Tamazapan to sleep..



Visitors…. Ursula, Matthew and Sam , Barry and Craig, Corey and brief visit from Mark Armstrong, Hamish and Sam
Baby sitters…. Lisa (friend from church)



Monday 24th Oct



Today Aaron was a little bummed as I couldn’t come in to be with him because Izra is home on Mondays and I think he might still be germy… and Aaron said that no one else had been in to visit… he was feeling board, lonely, and frustrated because he just wanted to come home… All of his treatment has finished now… However they are keeping his fluids going as they may need to put things in…. be they drugs or blood or something else…. He’s still in good spirits… He perked up a little while I was there but it was only a short visit as I had to pick up Izra in 2 ½ hours... I called him later on and he seemed to be a little brighter… He apologised for being crabby…The boys chatted on the phone to him a little and were able to say good night to him…



Visitors…. Ursula,
Baby sitters…. Macaila



Tuesday 25th Oct



Aaron is okay today… nothing much has changed… Not much more information was given to us today about bloods etc… The will be getting him to do a treatment for Pneumonia this week sometime... Before he comes home...



Visitors…. Ursula, Luke and Jade, Matt and Allison, Anna (from Aaron’s work)



Wednesday 26th Oct



Today the Dr’s ordered his pic line to be locked off … apparently it can stay in his arm for up 6 months…and if he needs other drugs or blood transfusions in the mean time they can access the line… he has no fluid going through now… he gets around a whole lot better with out the pole!!! He was told that his ear ache may be because of a bit of sinus aggravation. Side affect form immune suppressant treatment… He is going tomorrow to the infectious diseases ward to have a nebulised drug that will give him a short protection against Pneumonia and the like…. The treatment takes about one hour and he has to be in a room by himself while he breaths in the stuff…he will have to do this treatment once a month (or rather 28 days)…. His blood count in White Cells went up about 2 points and his haemoglobin went up about 2 points... So that is good… no great but good…. The Dr’s also talked about him maybe going home for the weekend… which would be nice… When he does come home he will need to go to the hospital at least 3 times a week for blood counts (tests) and possible treatment or transfusions etc… they will be reviewing things each week but hope to see some kind of improvement in a month… We were then told that this may work but it may not work… He may have to repeat the treatment in a month or 3 or 6 or 9 months depending on how his blood counts reacts to treatment and how much they improve… He may very well be back at the beginning at the time that they decide that they need to do the Atgam treatment again… If all does not work after the 2nd lot of treatment they will look at finding a bone marrow transplant donor…



Visitors…. Ursula, Barry, Rachel, John and Shirley
Baby sitters….



Thursday 27th Oct



Today Aaron was supposed to be having the nebulised treatment for protection of viruses etc .... But there was a really big mix up… and he didn’t get it… I went out in the morning to do some shopping as he was supposed to be finished the pentemadine treatment about 10.30 am… but he was left in his room all day… As soon as I walked in Aaron said that the Dr's on that day had said that Aaron could go home today… Wow.. So wasn’t prepared for that… I came in at 12pm to take Aaron for lunch…. It took till 5.30pm to have everything organised for his leaving… They had to organise his appointments and treatments etc for next week and the Pharmacist had to get all his medications etc… The Dr's had to organise his FBC tests slips… and just as we thought we were right to go they had to give him a vit B12 injection…. He wasn’t too keen on that idea as they really hurt!!!
Jackie helped out and picked up the boys from Kindy and After school care.. And we just got to her house as she pulled up from picking them up….. So they got out of her car into ours… Then we got all of Aarons stuff out of the car into the house... I put on some ravioli and started to unpack his stuff... Then went through the house to finish off disinfecting as I had only done the kitchen... Kathy came over to help a little… that made it a bit faster... He was happy to be home… The children are sick!!! They have the croup!! Just have to keep them well away from their father and disinfect as much as I can… Glen 20 is my friend!!!

Tuesday, May 02, 2006

First week in hospital 13th-20th October 2005


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…


The thing is you may be experienced but you need to realise that you are dealing with peoples loved ones and when you do not give a reasonable explanation... just 'you know what you are doing'… Well it’s not good enough!!! You can’t toss people aside like that… There is a lot of emotional attachment to the treatment of a patient… and if you do it to my husband you do it to me!!!



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