The latest news. Since the last post Tia had been in hospital for spike in temperature,not walking,moving arms or head and in a lot of pain. We couldnt even pick her up or dress her without her screaming from the pain. It reminded us of how she was like when she had microbacterium melmoense (severe spots on legs and arms). This is no longer present as we cannot see any and they have checked to see if she still has the bacteria infection which she do not. She is now confusing all of us as one day she will be fine then the next we will have a problem. Yesterday she was walking and playing but today she is back in pain and now has a swollen right hand. Her blood results from Newcastle has been good and the blood results from Worcester has shown that her protein levels have been low. Worcester and Newcastle do different type of blood tests. Worcester bloods are to see if she has had a bacteria infection or a nasty bug which she dont and Newcastle is to see how the BMT is doing which is all good so far. We have had days where she is in a lot of pain and not eaten much. But nothing to be concerned about. This also has had no effect to her protein levels with the amount of food she has been eating. The BMT liaison team is happy with her blood results as they would of wanted Tia back in hospital. The doctors are also completely confused over Tia and a large meeting was carried out in Prague last week (so I hear) with more international doctors involved. We have not heard the outcome of this so far. Tomorrow we have an appointment with Tias immunologist from Birmingham who is the doctor who told us the bad news in January about Tia needing a BMT. We have not seen him since the week before Tia had the BMT but we do email each other often as he always asks how Tia is doing and involved in her with Newcastle BMT liaison team. We are hoping for some answers tomorrow but I do think it is unlikely that they have any. Im also expecting a call from Newcastle wanting to see her and take more bloods. I think it will be this week that they will want to see us. Today Tia just wants to sit watch the TV and dont want to be fussed about. We have been very busy as a family and quite stressed lately. Mummy broke down in tears on Friday night as she was really scared about losing Tia as we received a call from Worcester hospital in the evening wanting Tia to stay in just so they could do a blood test. I did question them over this and in the end it was pointless of them having her over night just for a blood test and as for treating Tia we do exactly the same treatment at home in our own environment and we are more experienced than the staff there as they just liaise with Newcastle which Newcastle did say there was no need for Tia to stay in hospital just for this as I told them to give them a call first. This did cause a lot of stress in our house which was not needed. We have experienced days in hospital waiting around all day and nights when nothing has been carried out and a lot of waisted resources. Tia is a very complex case and this often happens once a new doctor sees her. So we often tell them to liaise with Newcastle or read Tias notes before they see her. I have also had the education department contact me about Tia going to pre-school and this is also complicated as Tia is not allowed to mix with a lot of children so they are trying to make arrangements with one to one tuition even though I have told them this is too early as Tia is still under a lot of treatment and uncertain about her days. We did have portage (one to one tuition) visiting tomorrow but we have had to cancel the appointment as Tia needs to go to hospital in the morning which is short notice. Portage was also due to come last Wednesday but the teacher was not well and previous to that Tia was not well. So hopefully you understand how difficult appointments can be. We do advise any home visits or appointments are confirmed on the day. I hope you understand the above and sorry that the posts are not regularly updated as we have been very busy and quite stressed. The video was taken yesterday morning and you can see that she seems well but today she is not very well. We are hoping that she starts to have more good days than bad. But unfortunately she has been having more bad days lately. Thank you for following Tia. Xxx
Posted on: Sun, 02 Nov 2014 23:38:02 +0000