Just a waiting game. Its been a while since my last post and I do apologise. We have had a lot going on with Tia and especially this time of year. Tias biopsy went well and shows no signs of any infection which is good news. The spots do seem to appear and then disappear but nothing to be concerned about. Tia will run around one day and then the next day she will be in pain. We often have to give her morpheme for this and it do help with the pain. She has been spiking in temperatures and the highest its been is 38.7 with slight panics from the nurses when this happens. Our procedure at home is if this happens three times then we are to rush her to hospital but with this happening in hospital the nurses will call the doctors and often calpol is given to bring the temperature down. This do help tremendously. I had a long conversation with one of Tias BMT doctors and he explained how serious in can be if a BMT patient experiences this as lives has been lost if its not acted upon quickly and this is why the nurses panic and regularly check. Almost every 20 minutes. This often happens at night so Tia and Mommy is often disturbed. With Tia he says that she is out of the danger zone now and more likely to recover from calpol and that its signs of her new BMT settling in. Weve had Tia laughing and running around and she is a little bossy boots when she wants to be. Even if we pop out for lunch Tia will place an order with us. She will ask for 2 eggs (kinder eggs) bread and some oranges. We do occasionally take her order. At the moment she is going through a phase of watching Nemo and she must of seen it 100 times now....Im beginning to know the words and of course Peppa Pig needs to be on at night to help her sleep. Newcastle UTD football team visited all the children on the ward and gave them all Christmas presents of which Tia was not in the mood that day and didnt want to even play. It was great to see other children interact with them and really thoughtful of them. I wished them luck in there next game against Arsenal of which I believe they actually lost. The players I spoke to seemed really nice. I did manage to get some autographs. We have been really hoping that we will be home for Christmas and Im feeling a little bit inpatient now as all we seem to be doing is waiting around. Today they have told us that they are making plans for this and it should be either Weds or Thurs. Tias immunoglobulin levels have dropped and she was originally having to have a top up every three weeks but they are now giving it her weekly and this is one reason why we are not allowed home sooner. The protein in her urine has dropped and showing signs of the steroids working and they have reduced the amount they are giving her and they hope that she produces her own. But this can take a while. Today they are taking more bloods to be sent to Cambridge as these are very important ones and they cannot be done locally and the results for these should be back on weds. We hope the results are good. Theres quite a few other children on the ward and I do feel sorry for them as some of them will not be home for Christmas. Mummy even popped to town and bought a little boy a Spider-Man pyjama set and it bought a huge smile to his face hes very unfortunate as hes not seen his daddy for a while and he has very bad GVHD. Were happy that plans are being made for us all to go home so at least we will be for Christmas but inside I feel really sorry for the other sick children who wont be. Ive posted various pictures of what we have been up to and they are not in any particular order. I hope you like them. Sorry for taking so long to update this page. Xx.
Posted on: Mon, 15 Dec 2014 12:24:32 +0000