I'm calm again, lol. I was quietly confident that Harry had gained a little when some strange health visitor came, plonked her scales on the carpet and weighed him. Scales should be on a hard surface as they sink into the carpet but no, she knew what she was doing and looked at me like i was a complete moron. So according to her wrongly placed scales he had actually lost a little weight and was back at 6.12kg. So the inevitable phonecall followed to Harry's dietician in Manchester who voiced how worried she was that he was so little and she would have a word with his consultant.
She rang back the next day and said he would have to go see Eddy his consultant so sort a new diet plan. I queried this as we are due in on Tues anyway and surely a week wouldnt matter, but they are so worried they wanted to see him. So I opted for thursday, sorted childcare and decided that I would start weaning him (the hosp told me to hang fire whilst he got settled on his top up milk and would advise when to start) and increase his top ups from 60ml to 75ml. He has 5 of these a day.
He quite enjoys his porridge, and have moved onto apple flavour too, yum. Scoffs the lot. Not yakking up so I think I got the balance right, He has some solid food 3 times a day. ANyway, late weds night the hosp rang to say the transport company couldnt pick us up so had to cancel. Hooray. Childcare cancelled. Thurs morn and Eddy's secretary rang asking if I could make my own way to the appt. No, my care needs attention and I darent risk it on the motorway thats why we needed transport. Ok, can you get here tomorrow (Fri) err NO my car etc etc dur brain. I explained that he was in Lancaster fri morn anyway having blood count done, going to Birmingham Sun/Mon and we back in Manchester tues, so that will have to do. I have oincreased his feeds and started weaning. Oh ok, I'll let Eddy know.
One hour later, Eddy's nurse Sue rang. She is lovely. She asked the same question. FFFFFFS. I explained it all again to Sue, I can't make appt today as I have cancelled childcare and have no transport etc etc. When I went through what he was eating she agreed that there couldnt possibly be anything more that could be done that wouldnt wait til tues. She would let Eddy know and not to worry.
So, getting on with things I nipped to the shop when my phone rang. I nearly didnt answer it, but not one to be rude I did. This time it was Eddy. Yes, he was actually ringing himself. My heart sank, Manchester wins a medal for persistsance I give them that. He voiced his concerns about Harry's weight and that he needs to see him as he couldnt let it go on and Tuesday was 5 days away, so again I ran down my list:...
- I have cancelled childcare so cannot make today
- He is in Lancaster friday anyway, so am sure they will weigh him, plus I had promised the others I would take them out, and I am sick of them always feeling like they take second place to Harry. I know Harry is ill but he is not the only one in the family. If it was for treatment I would go, but seeing as it was just for a meeting I am not disappointing them again
- I have started weaning as I am still waiting for you guys to give me the go ahead and have increased his top ups to 75mls
- I am in Birmingham sun/Mon so I will come to Manchester as planned on Tuesday.
He went on and on and on how he wasnt doing his job right b lah blah to the point I got majorly upset and teary (yes this was all in the middle of the co-op) until he conceded and said he would get the dietician in Lancaster to see him while I was there getting his bloods done. He would fax his new plan to him to pass on Ok, thank Heavans for that.
The Manchester dietician still had to ring later on thurs just to make sure I had been contacted by absolutely everyone, she liked what I was doing and said 'see you on Tues'.
Anyway, Fri morn dawned and off to Lancaster we went. The Lancaster dietician couldnt actually come but he did say he was more than happy to have Harry as a come and go patient to help monitor his weight and feeds etc if it would help. Super, things were looking good. Harry weighed in at 6.52kg, so he had a good gain from the wrong weight on Mon anyway. Had his bloods done and off we went. Oh yes, the feeding plan. It was exactly what I had myself put Harry on, his usual breast feeds, weaning and 75ml top ups. SO what was all the sodding fuss about, they were stressing me out about my non-attendance to talk about what I had told them I was doing.
So you can imagine I was majorly unimpressed, especially when the lovely nurse from Lancaster rang with his blood count and told me that Paul the Lancaster dietician had called Manchester to offer his help going forward. He was told that Harry was categorically under the care of Manchester and thats where he would be staying. Slap on the back for Paul when he fired back 'so its okay for me to see him at the drop of a hat when it suits you'. He wasnt wanting to take all of Harry's care, just to help out as someone local I could get to easier if I needed to. He told them to shove it (but to me secretly he is there whenever I want to ring him)
Paul you are a superstar.
Anyway, his platelets were 315 and Hb 10.6 so Birmingham would be okay, but neutrophils still only 0.2 and as they need to be at least 1.0 he prob won't be having chemo on Tues, but I will still have to go re weight etc
God, that was a long rant. I am so fed up with hospitals now. BRB you can pack your bags and disappear. You have outstayed your welcome, not that you were ever invited.