Health update-Blogging from my hospital bed part 2&3

This is continuing on from my last post on Blogging from my hospital bed, if you missed Part 1 you may like to check it out.

Day 22

Still feeling nauseous and bowels hurting, started back on my feed again as it was stopped overnight, they put it on a lower rate as it seemed too fast for me. I had a visit from my Brother and partner which was nice. My friend in the bed opposite who also had hEDS and her name was Emma, what a coincidence! left today which was a shame as I was on my own. The other patients were all very helpful if I needed anything, they told me to just ask.

Day 23

Mum and Dad came to visit me, as it was the weekend it was quiet on the ward. The feed was going much better at a lower rate, I think it was increased too quickly! I felt better today but was tired in the afternoon. I had to get the nurses to help me more as I had been struggling with things and not wanting to ask and waiting too long for someone to come after pressing the buzzer. I made a point of saying I need more help, if you don't ask you get left unfortunately.

Day 24  

The Gastro team came to see me but I was really drousy. The consultant said about doing my feed over a shorter period at a higher rate to increase my nutritional intake, as at the moment I am not really getting enough to make much difference. The plan is still to put a PEG-J in, as the NJ is only a temporary solution to see how you will tolerate a tube. The Dietitian came in the afternoon to tell me to cut down on dairy and wheat, as they can irritate the bowels and they also said about having a Hydrogen Breath Test to check for bacterial overgrowth, this was suspected initially before I even came into hospital. I felt shattered all day, pain still not great. My sister came and my niece which really made my day, we went down to the restaurant as the baby was a bit upset.

Day 25

The dietitian came to see me and discussed how the feed is going, I mentioned about my bowels and nausea which she is going to talk to the team about. The Psychiatrist came as well to see how I am coping, he is really nice and we had a general chat, he talked about the plan for the PEG-J if I tolerate the feed well. The Nutritionist came and said she was pleased with how things were going.

Day 26

Dr and Nutritionist came to see me and I mentioned how bad the nausea and pain had been. I had lost weight again, they are going to get the pain team to see me.

Day 27

Mum came which was nice as she helped me a lot, the nurses don't have the time to spend with each patient. I suppose it is up to me to ask if I need help.

Day 28

Dr came to see me and talked about my nausea and if they gave me IV medication I would not be able to carry on with it at home, he is going to chat to his boss as it is complex, he said the pain team are going to see me. I am having a Hydrogen Breath Test midday, which will show if I have bacterial overgrowth.
The porters collected me on my bed which was nice, I didn't have to transfer and the test was two hours long. I had to drink some lactulose, then breathe into a special foil bag which was sealed by a stopper every 20 mins, it went quickly the two hours then I was taken back to the ward to recover. I was shattered.

Day 29

Quiet day on the ward as it is the weekend. Mum & Dad came to see me. Had a chat to the Sister in charge about some issues that had been occuring, she was lovely and said she will bring things up in their meeting.

Day 30

BP low again first thing, pain was not good either and I needed a lot of pain relief. Dad came to see me which was nice as it was so quiet on the ward again.

Day 31

Mum came today which was nice, nurse was really good making sure I had all my medication. The consultant popped her head in to see how I was, she told me to avoid grains, dairy etc as they are not good for motility problems. I told her how nauseous I had been. Bowels not been good either.

Day 32

My friend came to visit me and a Dr came in to see me, he was very thorough examining me, he said my bowels sounded noisy, he talked about reducing some of my laxatives at the moment. The Dietitian came to see me she was happy and wants to proceed with the PEG-J next week, she told me not to eat too much, it is just for taste and pleasure. The Psychiatrist came to see me and we talked about how my mood was. A busy day with visitors today.  

Day 33

No visitors today as I had an appointment with my Neurologist at another hospital, I was picked up by an ambulance and taken to my appointment at the NHNN, we arrived early so decided to go to the cafe and have something to eat. We didn't have to wait long to be called which was good. I told him about the issues I had been having with my PoTS especially my tachycardia episodes which he wasn't concerned about as my heart is regular and said nothing bad can happen from them, he was worried about my mobility more than anything as he said it is making my symptoms worse and he will get the Autonomic nurses to contact me in due course. The ambulance collected me and took me back to the ward to recover on my bed as I was very tired. 

Day 34

The Dietitian saw me and talked about the feed, she ideally wanted to increase the rate as I am only on 50ml/hr which is very low. She mentioned abot the PEG-J being next week sometime but no confirmed date, Dr came round he said my bloods were ok other than liver which showed a slight raise which could be related to the feed. I told him about my bowels and he is reducig my laxatives and giving me something for the nausea, he felt my tummy and listened to my chest, he was very thorough. Mum came and a friend from my Rehab programme who I hadn't seen for three years who was also on the same ward but in a side room, it was great to catch up with her, she has been having a rough time as well. She stayed for a while then went back to her room.

Day 35

Bowels were feeling really uncomfortable again with severe spasms and cramps, the nurse gave me something which didn't really help. Pain got worse as the day went on.

Day 36

Quiet morning being the weekend, pain bad all over. I had a nice wash from one of the nurses, Bowel was cramping at times. Mum, Dad, Sister and Niece came which was lovely. We had a chat to the Sister in charge about the PEG-J and wanted to find out more about it, she explained things well then went down to the restaurant as my Niece is too young to be on the ward. We spent a short time there before they all went home. 

Day 37

Quiet day on the ward didn't see anybody from the team. Pain bad again in my joints and bowels, BP low. My Brother came which was nice but I was in pain. 

Day 38

BP low, apparently they gave me fluids in the night but it didn't increase. I think it is my PoTS, I thought I was going down for my procedure at 14.20 but was told 13.00, I was anxious as no-one from the team came to see me and I expected them to. A Dr came in but I didn't recognise him, I was a bit annoyed with the nurse over the medication. The Sister came and chatted to me about things then a Dr came and explained things a lot more clearer so I knew exactly what was happpening. I felt much happier after this.

Day 39

Quiet day recovering from yesterday, my BP was still low so they put me on a drip to raise it. I saw a Dr but much later in the day. I didn't recognise him.

Day 40

No-one came to see me until later in the day again. I was in so much pain with my bowels the nurse had to call him, he was very nice and examined me and thought I had gone back to being constipated again as my laxatives were stopped too quickly. I was given a lovely wash by a nurse. From what I understand they had problems sedating me enough, this is a common problem in hEDS, which is why they couldn't proceed. Nurse was lovely in the evening, very kind.

Day 41

Had my BP taken which was low again even though I had been on the drip all night. I was given a lovely shower and hair wash, which felt really nice and made me feel really refreshed. I had a lie on my bed after to recover before the porters came to collect me and take me to endoscopy for my procedure. The staff were all lovely down in endoscopy and explained everything really clearly. The anaethatist came and had a chat about what he was going to give me and he did say I may need to have another cannula put in if they have problems with the one already there. I could stay on my bed no need to transfer which was great. 
Everything was over before I knew it and I was waking up in recovery, I was taken back to the ward after to recover.

Day 42

Woke up in agony with my tummy, very sharp pain at times. There was a dramatic situation on our ward with one of the other patients not being at all well. I had been on a drip all night which raised my BP as it was low from yesterday still. The Dietitian came and consultant to say I can go home next week. The pain was terrible everytime I moved, the nurse gave me IV Paracetamol.

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10 Tips to surviving a long hospital stay


10 Tips to survive a long hospital stay

When you are in hospital for a long time it can be very hard to survive and passing the time can be difficult. I have been in hospital for 1 month now and how I survive it is by using various methods. Everyone has different ways of coping. 
  1. Make sure you have some form of Entertainment, such as an Ipad or tablet
  2. Read a book or magazine 
  3. Talk to other patients, this can make the stay more bearable
  4. Leave the ward if you can, this is so important as you need a change of scene
  5. Talk to the staff, some of them like this if they have the time and can be very helpful with getting problems sorted
  6. Make sure you have visitors come to visit
  7. Listen to music or meditation
  8. Word games or puzzles
  9. Get some exercise even if it is just getting up from your bed to the toilet or going for a walk
  10. sleep, ths can definitely make the time go quicker
These are my 10 tips to survving a long hospital stay, you may have others I have not thought about so please feel free to share them,
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