Well he came home today. His dad picked him up from the hospital and then I only had to drive to the in-laws. However when I arrived it was a good couple of hours till he felt up to the journey home. But we made it.
Only one small issue. He didn’t get any of the dressings he needs for his PICC line and the local hospital doesnt stock the specialised ones. The district nurse rang up this afternoon to arrange when it needs doing – Tuesday. The hospital called shortly after saying they wouldn’t have time to order the dressings in and would “make do” . After all the problems with the line and dressings last month I’m not having them make do and I told the nurse that. They don’t have the dressings he needs and one in particular they have nothing similar. So she had better order pronto, though really Clatterbridge should have given us one at least to be getting on with but the husband said they were really busy this morning so he didn’t want to ask. Could be a problem come Tuesday!
Asthma?
Weekend been a little dull, husband was feeling sick and tired but nice to be home. Well I say dull I woke up the Saturday morning with very very wheezy breathing and apparently I had been like it all night. My cough was back in its entirety and I was worried I would pass a chest infection onto the husband if I didn’t get something for it as soon as possible. Benilyn had done nothing. I rang the urgent doctor line and got an appointment. The doctor decided I may have an infection so gave me a prescription for Amoxicillin – £7.40 ouch. He also however was concerned about the wheezing and decided I had asthma!!! What I am 33 next week, thought people grew out of it not into it. Dr said it was probably always there and only recently has it started to show itself. I now have an appointment to get my lungs thoroughly checked out in a couple of weeks to see if he is right. He did give me an inhaler which has helped and another prescription for steroids – another £7.40. Expensive morning. So on the 7th Oct we shall see if I have asthma or if it was just a bad chest infection. Someone did say yesterday that it could have been brought on by stress – so it does have potential I would say the last two months have been a little stressful.
The Monday he decided to venture out late in the afternoon and we took the LO for her first pair of real shoes. We werent out that long but by the time he got home he was exhausted.
I knew it!
Anyhow, I rang the hospital on the Tuesday morning regarding his weekly dressing change and surprise surprise its an issue. They don’t have the right type and they wont order them as they can only get packs of 50 and wont order if they don’t think they will use. The district nurse hasn’t ordered anything and thought the hospital could do. So that’s more phone calls tomorrow to try to sort and he’s a day behind getting his PICC line flushed – fingers crossed its ok and there’s not blockages or infections this month from it. The hospital did say they would do their best with what they have but I told them after all the problems he had the first month just making do is not good enough. We don’t want to potentially cause any problem and will do our best to avoid.
A good thing
A neighbour saw us looking at the fence, that the dog bust through for the third time at the weekend, and we were planning how to fix it. He then came over and did it for us with my help and the husband sat in the car looking exhausted. Just going to get a screwdriver from inside tired him out. There was no way he would have been able to help so it was really nice of our neighbour to lend us 15mins of his time. It’s not prefect as the panel isn’t designed to fit the gap but it blocks the hole and its done.
Need to get the husband out everyday for a couple of minutes the last few weeks have really taken their toll on his energy levels and muscles. Just a few steps makes him weak and feel awful, if he’s out for more than 30mins he ends up falling asleep as soon as we get home. I know being tired is bringing him down a bit and he does get snappy. However the LO and I are getting on with things and I’m trying to do as much as I can.
ARGH! (updated 1st Oct)
Still no dressings come Wednesday and no one seemed to be doing anything to sort it. I ended up calling Clatterbridge to see what I should do and also to say the dressing change and PICC line flush was a day late. They suggested calling my GP. Quick call later and I found out that the district nurse should have put in a simple request to the GP (back on friday) and they would have ordered it through a local pharmacy – no issues. As the district nurse hadn’t called me back and neither had the local hospital and we were a day late, the GP suggested I go direct to the pharmacy on the off-chance they had any of the GRIP-LOK dressings we needed specifically. Of course they didnt….BUT… they could order some – HOORAH! …. BUT they needed a request from either the GP or a fax direct from the district nurse would do. Great that still needed one of the district nurses to do something they should have done 5 days before. Another – slightly annoyed/snotty message on their answer phone actually got a reply within the hour and they said no problem to sending the fax. It did take more effort on my part though and more phone calls to the pharmacy and Clatterbridge as they needed the order number to make sure they got the right one. I was also given the ok for the husband to wait till the Thursday for the flush and when we had the dressings. Thursday happened and the dressings although ordered werent to arrive till the Friday. We did go to the hospital anyway and the line was flushed and part of the dressing changed. On the way back to collect the LO we went to ASDA to get a few bits, after a couple of minutes he needed the car keys and to go and sit down so I ended up at the checkout alone. The lovely weather really wasnt helping his fatigue.
FINALLY!
Got the call from the pharmacy in the morning to say the grip-loks had arrived – yay. Though the husband felt too tired to bother going to the hospital to get the dressings actually changed, and as the pharmacy was the other side of the city I decided to leave it till Saturday to actually collect them. He spent most of friday eating even more ice lollies (he had been eating them all week), the ulcers were back and everything was tasting horrible. On such a glorious day we should have been out as a family but he didn’t want to leave the house as he felt really rough. I managed to catch up on some of the laundry and the LO had a great time playing outside.
Apart from being tired and the ulcers he was feeling a little low but he was pretty much ok. The evening however his temp went up to 37.5 degrees – now that is actually ok, it’s the top of green but still green, 0.1 more and its alarm bells. it only went up for 10mins or so and the bedroom was really stuffy. So on went the fan and the window was opened and then he threw up – jolly! Though he felt much better after doing so. Now ok yay the room was now cooler but I have trouble sleeping with new noises – so a fan on all night was not good.
Not again. 😦
Early Saturday morning I WAS SHATTERED! He, however was feeling worse, not in general but his throat had swollen and was extremely sore. He couldn’t even eat an ice lolly to try to soothe it. A call to the emergency doctor number (hmm until a week ago I had never rung before now it was the second time in a week) and we got an appointment at the local hospital. We thought it would be get there see the doctor be prescribed something for his throat and home so we took nothing with us (bet you can guess from that that we should have?) He was seen at 10am and the doctor apparently said I can either send you home with antibiotics and you see how you go, or, we can check you over because I don’t like how you look (charming) and see how you are generally, as its right around the time your cell count drops be a good thing to check. Knowing how much he doesn’t want to be in hospital I am surprised he didn’t just go with the first choice. Anyway when he came out of the room the husband said he had to get his bloods checked (I was unaware of the choice he had at this point), ok off to A&E then. Blood taking was again a problem, they had to take from a neutral area in case there was any infections and stuff elsewhere in his body and the PICC. Getting a decent vein took a while though it was eventually managed. The results came back – he was neutropaenic again and it was a count of total 0 again! OH NO! That meant they wouldn’t let him leave. He had to stay in no matter what. So even though he didn’t have a temperature or any signs of major infection because he was basically open to every and any infection they wouldn’t risk him going back home. If he had gone with the antibiotics and gone home then no one would have known any difference until and if he did get a serious infection. DAMN. I ended up back at home sometime after 2pm, totally exhausted and quite unhappy to be honest. A quick call to my mum and she was on her way – I just needed a hug, I knew he was going to be ok, it was only his throat causing an issue really, he was actually feeling relatively good especially compared to the last time he was admitted a month ago to this hospital. My mum looked after the LO while I went back to the hospital (via the pharmacy to finally pick up the dressings) to take him in some stuff. As they have protected mealtimes I wasnt allowed to stay and had to come back at visiting at 6pm. I went home and had a snack with my mum and the LO before heading back to the hospital with some Sprite and also after a quick stop some ice pops – he had been told he could use a small freezer they had on the ward. As I had phoned the in-laws earlier to let them know they also came up to visit which was nice, though half way through one of the nurses said we were supposed to be wearing protective stuff. I said we thought that we should have been doing that last month when he was in but no one said we had to. However, the in-laws and the nurse agreed seeing as he was currently susceptible to infection that it was a good idea and we didn’t mind doing it, though we thought technically the piece of protection you think we would need to wear would be a mask. NOPE. We had to put on plastic aprons. An Apron?? What is that supposed to do, how does that help? Yes to a nurse there’s potential for fluids and stuff to leak etc but I do not intend to be bled upon by my own husband and surely its the other way round where there is an issue. Oh well we did as we were told. I didn’t stay too long as I had to get back to the LO and let my mum go home. The LO was obviously missing her daddy so I ended up calling him so she could talk to him and she went to bed happy.
themopyfish 