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.

Health Update- Blogging from my hospital bed part 1

I wanted to write this post to update you on what has been going on with my health recently.

I have been suffering from gastro problems for a while now related to my hEDS as this is the new name given to what was called EDS Hypermobility. Things have been getting worse with weight loss, nausea, pain and bowel changes. I am under a Gastroenterologist at the Royal London Hopsital and had a recent consultation with him where he wanted me to try some food supplements to try and stabilise my weight, unfortunately I didn't get on with them and my weight continued dropping. My G.P contacted my Consultant's secretary as she wanted me to be admitted. My Consultant phoned on Friday and said he wanted to get me admitted today, this came as a big shock to everyone as I thought he would say Monday. He wanted me to get to the hospital as soon as possible.
My Mum grabbed a case and made sure I had all the essentials as we didn't know how long I would be in for.
Luckily the train service where I live is very frequent to London so we arrived at A&E about 4pm and checked in, then waited to see a triage nurse which was all quite quick, the longest part was at EAU (Emergency Assessment Unit) where we waited hours to see the Registrar, who would be admitting me to the ward. An IV line was put into my arm incase I needed any drugs administered. While I was waiting I saw some interesting things going on in the department during the evening whilst I was waiting. As the evening went on it became busier in the department, which you expect for a Friday night. I just wanted to go to the ward and lie down as I was uncomfortable and in pain. I was finally taken to the Gastro ward at 23:00 a very long and exhausting wait. The sister on the ward was lovely and took me to my side room, which wasn't even ready for me as there was no mattress on my bed and this meant more waiting, I was finally settled in. I was shattered, I just hoped I would get a good nights sleep.

Day 1

Not a great night as woken up by Nurses coming in to take my obs early in the morning. Dr came in to tell me the Gastro team will be in on Monday to see me and discuss what the plan is going to be. I had a really long boring day as it is very quiet at the weekends in the hospital.  Had a visit from my brother and partner in the evening which was really nice as it was a long day stuck in a room on your own. I was shattered though and relieved to have a quiet day after yesterday.

Day 2

Woken up early due to noise from other patients and nurse taking my obs. All the staff are lovely especially the nurses, I was weighed as they need to keep a record of this. My parents came to visit which was nice as it gets lonely stuck in a room on your own. They took me out in my wheelchair away from the ward for a change of scene.

Day 3

Woke up with tachycardia so took my medication to slow it down. The gastro team came to visit me and a nutritionist, they talked about an NJ tube for feeding as they feel that this is the best option for me as it bypasses the stomach and goes into the small bowel. The plan is to try some different food supplements first and very simple foods for a few days. I will have sedation for the procedure which is a relief as I was worried about having to swallow the tube and choking on it. They will use an endoscopy for making sure the tube is in the right place, as it is a bit more involved than an NG tube.  Dr came to see me in the afternoon and he wants me to have IV paracetamol to help with pain as I am restricted to what I can have that wont have an effect on the bowels.

Day 4

Nurse gave me some IV paracetamol. The Dietitian came to see me and gave me a different menu to choose from for patients who find the standard menu not suitable. She also did a strength squeeze test using a hand held device, I really struggled tremendously with this as my whole hand shook from the effort it took. I was told it was just an indication for them and not to worry about it. I saw the Dr who said I will be in next week as well, I was weighed and a new IV line was put in as the other one can only stay in for so long. 

Day 5

I had a bad night sleep due to my PoTS, the nurse took my obs and checked on me a few times. Dr came and wanted me to take Gabapentin to help the pain. Dietitian came in and said we will proceed with the tube as the food supplements have not helped. Nausea was bad after eating lunch, I was given liquid Gabapentin which was unpleasant and caused me to be very drousy and made my BP low.

Day 6

Overslept so missed Breakfast, tachy, nauseous and felt shattered all day from the medication. Nurse weighed me, I had lost some weight, which is not very good.

Day 7

Very drousy again first thing, I was weighed. The gastro team came to see me they said I am still losing weight and mentioned about placing an NJ tube in early next week under sedation. They will keep an eye on my weight aferwards, to make sure I am not losing any more, they still want me to eat little and often

Day 8

Woken up by nurse wanting to weigh me, I was about the same as before.

Day 9

Nurse weighed me and I was the same again. Very quiet on the ward as it is the weekend, nothing really happens.

Day 10

Gastro team came to see me and said I will be having my NJ tube this week. I had a visit from a Psychiatrist who works alongside my consultant and sees a number of patients with EDS, he wanted to know how I was coping with everything, he is going to see me again tomorrow then follow me up in clinic. Nurse told me my procedure will be tomorrow so nil by mouth from 5am.

Day 11

Procedure day, the Nurse put a cannula in my arm which was really painful. Porters collected me and took me to endoscopy, I waited in there for a while lying on my bed before I was taken through for the procedure. I was positioned on my side on the table and then they sprayed my throat with a numbing spray and before I knew it was out and dont remember anything other than waking up in recovery, I was taken back to the ward to recover. I had a visit from the dietitian to say they will start the feed slowly to see how it goes and depending on things I may have a permanent tube placed. I struggled eating supper because of problems swallowing with the tube. The nurse started my feed in the evening for twenty hours. I found it a strange sensation as the liquid went down the tube in my throat it made me feel a bit nauseous as it felt very odd. My throat felt sore when I swallowed. I wondered how I would sleep tonight.

Day 12

I slept better last night than I thought. Dr came to see me who works with my consultant he wants me to have some vitamins via IV. My nose was sore due to the rubbing of the tube. Dietitian came to see me and talked about if the NJ tube works they will put a permanent one in my tummy. They don't let you leave the hospital with a tube out your nose as it is not practical to manage. Friday the whole team are going to see me.

Day 13

Dr came to see how I was getting on and thinks I am doing well tolerating the feed. I had a visit from the psychiatrist and he thought I was doing well mentally and will see me again on Monday. I felt rough in the evening with my bowels, possibly due to the feed, I had an anti emetic injection as I felt really nauseous. 

Day 14

My bowels were still not happy, very crampy and my weight no better. I had to stop the feed last night as I felt rough. The gastro team came to see me, the pain they reacon is related to constipation and want me to have an x-ray of my tummy. They want me to re start the feed at a lower frequency as it may have been too much for me to cope with. I had my x-ray in the afternoon and someone from the team came to check on my strength with the hand held device I used when I was first admitted.