Ummmm, 2 months later....

I'm being so bad keeping this updated! Sorry, I'll try to do better :)

Firstly I want to say a huge THANK YOU to all my lovely Twitter friends who I've got to know over the past few months. Cannot express how much your support and friendship has meant to me.

Right, so what's happened in the past 2 months? Well, quite a lot really. Alex is doing really well. Everyone who sees him now who knew him before comments on how he's like a different person. So full of life, funny and he eats! He had always been an exceptionally fussy eater, and we never knew that it was because food hurt him. Now he is trying new things, and discovering he likes things. Rather a novelty for me still.

Ruth finally had her biopsy on 31st October. After leaving home around 9.30am we reached Birmingham Children's Hospital at 11.30am. We had to sit on flip-up chairs in the waiting area of the Medical Day Care ward until her bed was finally ready at around 2.30. She was very lucky though, as she got a side room to herself. After checks by multiple Drs and nurses, talks with the anaesthetist and surgeon she was given the go-ahead for the procedure. Then more waiting around until the porter came to take her to theatre at 4.20. A lightening quick change into a hospital gown and it was down to theatre. She was very brave and agreed to have a cannula in her hand even though she is scared of needles. She was so brave, even though she was afraid she wouldn't wake up from the anaesthetic, and was a little teary. At 4.30 John and I went back to her room to wait to hear how it had gone. At just after 5 the surgeon came to tell us all had gone well, and that although from what they'd seen it looked like it was coeliac disease, that we should wait until the biopsy report came to know for sure. 10 minutes later we were able to meet her in the recovery room, but poor Ruth wasn't feeling at all well. Having been nil by mouth for many hours by then, coupled with the anaesthetic had left her with a terrible headache and she was so distressed it was heartbreaking. The medical staff were clearly worried that she was so upset - the team leader was stroking her forehead, just like I do. Little things like that make a difference, and show how much they care. The ward closed at 6pm, so once Ruth was back there (5.15) they were hurrying her to eat, drink and get dressed so she could go home. Otherwise she'd have to be admitted to another ward and stay overnight. Of course all she wanted to do was sleep, so she was even more distressed. Eventually she managed to drink some water, eat some apple slices and let me dress her. She stood on legs as wobbly as Bambi's and held our arms as we left the ward, only to get stuck in rush hour traffic in the centre of Birmingham at 6pm! We got home at 7.45 and she was starving, ate solidly for half an hour before falling asleep. Fortunately the school had booked her the next day off school as well, so she had a chance to recover a bit.

So now its another waiting game for the biopsy report to arrive. Hopefully it won't be too long.

I'm having an intersting time at the moment with my own symptoms but I'll save that for another post I think :)

Endoscopies, Biopsies and Dietitians Oh My

So last week was super stressful. On Tuesday 2nd August, Alex had an appointment at Birmingham Children's Hospital for his endoscopy and biopsy. We had to leave home at 6am to ensure we made it in time for the 8am appointment. In actual fact we arrived at the hospital at 7.10am, before the staff arrived at the Medical Day Care Unit.

The staff were all wonderful, and Alex had a student nurse called Sabrina looking after him, who was a week away from graduation. He was taken down to theatre and put under General Anaesthetic at 9.30am. He was so good and brave. At 10.10am we were allowed to go with the nurses to recovery to fetch him. And by 10.30am he was eating Rice Crispies! He did so well. At 12.30 the consultant came to speak to us. They'd found duodenal ulcers during the biopsy, so had taken biopsies from there, the stomach and gullet as well as further into the small intestine. He is sending us a copy of his report once the biopsies have been looked at by the lab. If the ulcers are just caused by coeliac disease, we will carry on seeing Alex's consultant at the local hospital, and they should heal now he's on the gluten free diet. However, if its more complicated we'll be going up to see him at the children's hospital in a couple of weeks. Hoping and praying it is minor as the alternatives are frightening to say the least.

He also said he'd be seeing Ruth there soon when we mentioned that she'd had a positive blood test, so I guess she won't get to miss out on it after all. Probably best for her to get a comprehensive diagnosis though to put her mind at rest.

We saw the dietitian at Worcester on Thursday. She was lovely and very helpful and supportive. She's faxing through a prescription request to the GP so Alex can get some gluten free food asap. We started the gluten free diet that day, and Friday 5th was his first totally gluten free day.

So we're back to waiting again at the moment - for Alex's biopsy report, Ruth's biopsy appointment and Alex's prescription.