Bed 12 & a positive outlook

This time it's bed 12 for me. I'm back on Ward Hope but this time my bed is not next to a window. I remain in a 4 bed shared room but opposite the maroon door to the toilet. Just charming. Now I know why my roomies were always asking people to shut the door, looking into a toilet as a centrepiece isn't the most inspiring picture. I'm not overly pleased at being back in hospital but I know this will be only a short admission so I have no reason to complain. I'm sitting here thinking I have now been in every shared room except for 1 on this ward. During all the years I've spent here, each admission they have barely moved my bed numbers whilst the other patients move around me, which has been good.
With being in the one place I've enjoyed decorating it. I'm too unwell right now to find a picture of my best set up room but it was awesome. I had fairy light, stuffed animals, stickers, dream catchers, butterflies and pictures of friends and family everywhere. Now though, I'm happy to have an empty corner with no decoration as it signifies this will be a Short stay only.

This morning I was extremely nervous about returning to hospital. I hate it so much and although nearly everyone on my ward are kind and caring I always find myself warry of what they think. I wonder what they are saying behind my back and what judgments are being made of me this time?.?. Each time I leave hospital I think to myself and say a little prayer that this will be my final goodbye forever as an inpatient, but it never seems to work out.
In all of my previous admissions the shortest one to date has been 6.5 months. I know this one will be far shorter than ever before so I guess it's less daunting and upsetting, but it still saddens me.
I am currently sitting in my electric wheelchair tilted back and waiting. I'm waiting for many things but the 2 main things are my pressure relief alternating air mattress (that comes in from a company as most patients have typical mattresses and don't require one) and the other thing is the PICC team to come and attempt to put a cannula in to start IV infusion asap. My veins are completely shot to the point where no typical nurse or Doctor wants to attempt them anymore so we rely on the specialised team whose primary job is inserting IV lines to put one in for me. Mostly it takes around 3 attempts by the experts and ever so often a few get it in first go. The worst cannula I've had was recently when several attempts were made and then finally an on call dr got one in, in my index Finger. OUCHY but super impressed by it!!
Wanna see??

Ok so the cannula is in on the 3rd attempt so I can't complain. The lovely nurse Emily came & she's the best at finding my veins, this time was again proving tough as my veins like to run away and hide for some ridiculous reason. They've been overused and most have either blown or scarred so aren't a
good viable option. Again she mentioned the need for a central access, which seems to be coming up frequently the last few months. Admittedly I would much prefer not to be stuck multiple times every few weeks or days depending on the need so the idea of a more permanent access is not too concerning to me. Well...kind of anyway. My primary Doctors are quiet hesitant as my PICC line got badly infected resulting in sepsis a few months ago and because these lines go direct into the heart, the risk of infection becoming more serious is disconcerting. We will see I guess, so for now my little IV is doing a ok! 😊

It's night time now and my fluids are running smoothly and my air mattress is doing it's thing and keeping me as comfortable as possible. I'm actually pretty relaxed although a little sad too. As I'm
lying here all my kind nurses are breezing in and out saying hi and catching up on my gossip from home. It's so kind to have them be so caring towards me & interested in my life. Some of them,
despite being my nurses, feel like friends.  When I think about it, most of these people know me better than some of my closest friends and extended family. Over a long period of time like years in my instance, it is practically impossible not to know each other. In the real world not every personality clicks and that is the case here too. Generally the relationships between the nurses and myself are mostly that of totally raw & trusting relationships although there are always the inevitable person or few that I simply do not click with, but we make do.

So here I am back again after less than 1 month at home and they've made me feel the best I can about returning yet again. We've shared jokes about how I love the hospital Sooo much I just had to come back, or that I missed all of their faces & I was getting homesick from my second home on ward Hope so had to find a way to return. It's a jovious welcome and I appreciate them trying to make the mood lighter. The nice thing about always getting admitted to the same ward is that I know these people are on my journey and rooting for me to succeed and get my life back. It makes it so much easier having nurses who actually care about you!

It's been a couple of days since I picked up this post to write again because the last 2 days have been pretty rough, but today is slightly better at least. Tuesday I had my monthly dose of IVIG. This consists of blood products and is a big part of the reason I am going ok & made it home recently. It's a blood infusion of all antibodies and plasma from over 1000 blood donors per vial. I have a number of vials & it is doing wonders for my autoimmune dysautonomia. As a result though I end up with varying degrees of migraines, nausea and light sensitivity problems. This round of  IVIG infusion had proven to be similar to others before so having a nasty reaction currently which sucks. Lucky for me though the IV fluids have been running at a high rate non-stop for 4 days now...yay!  Much to my disappointment I've been having terrible sleeps thanks to some male patient in the room next door banging on his bed rails all night long. It's amazing how quickly my body has snapped back into my hospital sleeping pattern of awaking every 45minutes.
 Every. Single. Time. I was just getting into a better pattern at home and was sometimes lasting 2hrs before waking but it's all back out the window for now - another huge incentive to getting home asap.

Today I've woken up hoping to be significantly better, instead though my nasty cold is still lingering around with my nose completely blocked so I sound like a chipmunk. Thanks to my awesomely cement-like pillow, my nerve at the back of my neck is trapped again resulting in the return of my occipital neuralgia which makes my scalp numb and a big headache behind my left eye. These things plus my migraine, nausea and light sensitivity are making my day pretty gloomy.

Just to add salt to my wounds the ward rounds with the medical team have just been to see me. They can tell I'm not doing great so have further increased my IV fluids to help with my head and hydration levels. I mentioned to them that if all of my body systems are semi under control tomorrow I want to go home. The consulting Dr filling in for my main Dr knows me very well and told me not to push things beyond what my body can handle. It's the sentence I continually try to ignore. He said he is uncertain if tomorrow is best and advises me to stay as long as my body needs to recover even if that means into next week, booo. The team discuss calling the PICC team again to re cannulate before the weekend which makes me think now that I shouldn't be so hopeful, as it's not looking good to leave tomorrow.  The reason I'm so set on going is that I am supposed to have my physiotherapy and OT sessions and I really really want to get there - but if I'm feeling how I do now it's going to be physically impossible.
Wish me luck team!!!!!

I will write a better post soon with some funny patient stories and hospital musings. For now though I will stop writing and begin a stare off with yet another delicious meal, colour themed orange this time. Carrots, tomato sauce topping, orange stained cabbage and a so called vegetable lasagne. Hmmm...


xoxo