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!!!
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