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.

Part 3 of Blogging from my hospital bed, why not check out Part 1   Part 2

Day 43

Quiet day being the weekend, Dad came to see me and took me to the hospital restaurant just to get off the ward. BP was low again and I was nauseous so was given a drug to help, however I had a strange reaction to it and started coming out in blotches on my hands and feeling very lightheaded and odd. I was given IV Paracetamol again.

Day 44

Quiet day again, Brother and his partner came to visit which was nice. The pain though was bad eveytime I moved or laughed. I was shattered when they left.

Day 45

Mum and Dad came to see me as it was quiet again on the ward being a bank holiday.

Day 46

The whole team came to see me which was good. They asked how things were going with the feed, I mentioned about the pain still from the PEG-J site and in my bowel. They wanted to know where I was going to when they discharge me as I am not fit enough to go straight home. I told them a private place near where I live which has nursing care, therapies etc, they were interested.

Day 47

Mum came, bowels not great after increasing the feed last night. Dr came to see me and examined my tummy, I said about my laxatives. My general hEDS pains were not good so they gave me a muscle relaxant which didn't help.

Day 48

Dad came to see me. Pain in tummy bad as well as joints. Given medication in night from nurse and morning which took the edge off the pain in my tummy as that was severe at times.  A lovely student nurse came to see me, even though she wasn't working on my bay but I have known her since I first came in to the ward and she is so caring.    

Day 49

Pain not very good again, I felt really nauseous and uncomfortable in my bowels. The nutritional nurse came to see me and had a look at the wound which was a bit weepy and needed a new dressing on and cleaning up, she swabbed it for an infection. We went through how to do a flush as I will have to know how to do it, she went through it slowly with me and I managed to do it successfully other than forgetting to clamp and unclamp. I was meant to go back on the feed but my bowels were not good and I felt very nauseous we delayed it.

Day 50

Mum and Dad came to see me. Bowels not feeling great still, so delayed restarting feed until I felt ready to try again. I went on a lower rate again as I think it has been too fast for my body to cope with and is still coming straight through. I am having pain in the site area but will have to wait until Monday to see what the nurse says. I think it is due to my hEDS why it is taking longer to settle, as healing is generally slower. 

Day 51

Quiet day on ward as it is the weekend. I spent time just chatting to the other patients.

Day 52

Dad came which was nice. Dr came and talked about my nausea as it is a real problem. I had blood taken. Felt really rough last night and wasn't sure if I was going to actually vomit.

Day 53

Nausea was ok until I had something to eat, Dr came to see me and had a look at the PEG area and said he would get one of the nutritional nurses to come and clean it up and advance the tube, which is basically pushing it in 2cm. I was told I could go home tomorrow. This was good news but also a surprise. Nurse came in afternoon to clean area as it was still a bit messy, dressed it and advanced, which was a bit painful, she checked the ph and said she would come back tomorrow to talk through things. Mum came and I went to see my friend Katie which was nice. PoTS not great and felt nauseous all day.

Day 54

Very nauseous again even though I had some medication. Dr came and didn't want me to have the anti nausea injections as they could damage my tissues, he increased my tablets and had a look at the wound and thought it was ok. My friend came again and we did some craft work as it is EDS Awareness Month and what better place to increase awareness than in a hospital. We decided to decorate the sick bowls by turning them into hats. I had lots of stickers to use and bling so we got creating. Both of us were shattered after, even though we made sure to pace. This is a problem living with a chronic condition, the simplest things can take it out of you. We both had a lye down after to recover. I had a lovely nurse and student looking after me. My dietitian came with all my feed and equipment I will need to take with me to my Rehab place I am going to tomorrow, as I would not be fit enough to go home. I talked about the nausea and she said spread the meds out more. My feed was increased to 40ml tonight, my bowels have not been great again.

Day 55 

I had a lovely wash from a nurse before a lady from the feed company came to give my Dad and I a quick guide on the new feeding machine, different to the one on the ward and advice on caring for the tube etc, as where I am going to, want me to know what I am doing. Bowels were not very good again, typical on the day I am going! I said my goodbyes and the Ambulance men came to collect me and all my equipment, it needed several of them to take it all. I am dreading their reaction at the other end! The journey was not too bad other than I felt queasy at times and was given a sick bag just incase, I had pain in my back as well so they tried to make me comfortable. I felt strange leaving the hospital after nearly two months.  I had received very good care on the whole and met some very nice patients.

This is the end of my hospital journey, hope you have found it informative! please look out for the next post on my Rehab Journey