Bethanys medication chart

Bethany is finally home and it feels so nice to be home. She has a very jam packed medication chart but I am glad she finally has some comfort and i so badly want to keep it that way 

princess waiting to come home

Bethany was in hospital from monday the 18th of febuary till the 22nd of febuary. They finally released her but have kept her on a lot of different medications and creams to try and avoid Bethany getting bad again. She was so excited to come home and see her brother and nephew and she looked absolutely amazing. I just really hope that she can stay this way as we have waited for so long.

Heat reactions while in hospital

While Bethany was in hospital she had three heat reactions, first one was when she got there on the 18th of febuary as the hospital had the heating on and all the windows closed so Bethany burned and they had to move beds. The next two where at night where the ward was really hot, Bethany had to have the windows all open and fans on her to try and cool her down as I can not be in charge on the heating in the hospital so it just cant be avoided.

skin drying out too quickly

on the 20th of febuary Bethanys specialist came too see her in the morning and said she will be in till tommorrow or friday as her skin was still drying out too quickly and they will upped some of her medication and want to keep an eye on her. At the moment she is being mouisturised nearly every hour and after 15 mins she has dried out already so they are changing that cream too. Other than that she is fine and happy and having fun with her little friends on the ward. 

allergic reaction

on the 19th of febuary Bethany had a really bad reaction to her new cream starting itching, screaming in pain and turning bright red was really scary. My mum and the nurses had to quickly bath her to get it off her. she was in agony :( poor princess. She looked very poorly after and all she wanted to do was sleep.

On the first day at hospital

When Bethany arrived in hospital on the 18th of febuary she had a heat reaction as all the heating was but since they closed the curtains,opened all the windows,moved beds and gave her a fan since then she has not been too bad.The doctors have changed Bethany creams, given her more oral anti biotics and have taken her off all her anti histamines for 24 hours to see if they are even working. They have also been trying to hurry up the referral to great ormand street hospital. Shes loved all the attention today from the doctors.and nurses today but misses her brother lots. 

admitted to hospital

on the 18th of febuary Bethany had her dermatology appointment. I really wanted them to help her as for the past week she had been suffering so bad. The dermatologist decided that she needed to be admitted to hospital for intensive skin treatment to help get it under control. I had been trying my hardest to keep her skin clear and get her through all the bad times. Unfortunately it just was not enough but we are in the right place now. Bethany can get some help and get some comfort and a life that she so desperately wants and deserves. 

sleeping from exhaustion

on the 17th of febuary Bethany fell asleep as she was totally exhausted from the lack of sleep from the whole week and her skin burnt really badly. she woke up itchy and sore but i knew that we was going to see the specialist in the morning so only had one more day to wait for some more help.  

Ordered Bethany a body suit

Today Bethany looks really sore again and has an infected chin but she is not very itchy today thank fully.On a better note today i have ordered Bethany a new body suit to try and help give her some comfort unfortunately one is not really enough but its all we can afford and its defiantly a start. specialist tomorrow i am hoping they have heard from great Ormond street. fingers crossed

eyes in the back of your head

We have been up and down all night again with her scratching herself a part. Bethany is still bandaged and has very dry skin that is splitting apart. im hoping this afternoon she will feel a bit better as its just not fair and all she is doing is screaming and shouting. She has turned into a very bad attention seeker as she has been so ill its very difficult to leave her side. Even when i leave her to go to the bathroom or make food she will scratch or take her bandages of, you have to have eyes in the back of your head with Bethany  hoping she gets better as its half term now and i want to try and take her and my son places and give them an enjoyable week. dermatology again on Monday lets see how it goes. i keep hoping and praying that our life will get better but at the moment that doesnt seem any where close.

4 days of continuous pain

My poor princess has really been suffering the last 4 days near enough all night and bad all day. She is continuously itchy and has more scars. Shes been continuously bandaged and wet wrapped. Poor girl has not had a break from it its been hell. shes been screaming all day and all night none of us are sleeping because she just cant get any comfort what so ever. the dust from the builders of course has not helped and the uv rays through the windows and on the school run for her brother is not making life any easier for her. i just wish there was an answer out there to make my princess better and give her a life of happiness not a life of pain and suffering like she is going through. what life is it for a 3 year old to have her hands in bandage all day and night and to be continuously bandaged to stop herself causing herself more pain and discomfort than she is already in. i am really hoping that great ormond street hospital will get back to us as soon as possible as we really need help right now. nothing and i mean nothing is working :(

Beth suffered badly

the afternoon of the 12th of feb Bethany deteriorated quite badly. she was standing there tearing herself apart in front of my eyes. screaming because she was so itchy. her skin came up really badly and no matter what i did it did not seem to go down. Bethany had to be bandaged all day and all night again. She did have a moment where she wanted to blow a kiss to all her followers and supporters :D

no nursery today

on the 12th of feb Bethany was meant to go to nursery but had such a bad night last night was up screaming and crying every 15 mins in pain. she scratched herself pretty badly and was continuously itchy. the amount of times i had to change her bandages that night was madness. no nursery for Beth today just lots of love and cuddles of mummy.

good weekend until now.

pleased to say Bethany has had a reasonably good weekend from the 9th till the 11th of feb. she still has a lot of scars but was not been so itchy. it was lovely. But unfortunately i have the builders in re fitting my kitchen its caused more problems than good for Bethany skin. The Monday afternoon is where it all started again and went back down hill. she now has more scars and has opened the ones that she already has and has been continuously bandaged and creamed

back down we go..

unfortunately from the dates of the 5th of Feb till the 7th Bethany got worse. scratching repeatedly and gave herself more cuts and open wounds. Bethany didn't sleep properly as was up most the night she was up taking her bandages off to fill the erg to scratch. which meant blood everywhere :(

lots of fun

on the 5th of feb Bethany has had a good day today. she has been too nursery and had lots of fun and is smiling away :D

specialists today

specialists today did not go as well as i was hoping. they have said their is not much more than can do for Bethany until we hear back from great ormond street hospital which they have no idea how long it will be till that happens. He said as she is on the strongest creams and medication they cant change it and have put her on steroids for three weeks and told me to continue with the medicating that i know is not working as she is getting worse. :(:( my poor princess

scratches and sores

on Sunday Bethany had one reaction but was still very sore from the Saturday  she was still itchy but did enjoy a good afternoon at the park with her aunt and her little cousin. but no matter how much i cream her it just does not seem to be working. also Sunday was a very bad night she was up 3-4 times taking her clothes and bandages off scratching and causing herself more pain. At least she has a reasonably good day and only had a few problems so she got a little bit of rest until bed time. Dermatologist tomorrow i assure you it cant come soon enough.

more blood and pain

On Saturday Bethany deteriorated was up most of the night scratching and ended up giving herself sound more open wounds and scratch marks on her body. the wet wraps seemed to give her comfort. off to the dermatologist on Monday hope we get some help i cant bare to watch my daughter suffer any more. I sat on cried on Saturday night as i just felt so helpless