transfusion #8

Tuesday 29th March

we were back to St Georges today for a blood transfusion, Dr Pelidis had called me the day before to check we were still coming and said she would order the blood so it would be ready for us and would just need to be cross matched and there fore should be quicker!

So the traffic was absolutly horrendous, as soon as we got onto the Hogs back we came to a stand still! So we didnt arrive at the hospital until 11am. Alex dropped me off outside and went to park the car.
I got to the ward and it was heaving, someone had been given Reagans bed so we were sent to the play room to wait. there wasnt any where to sit in the play room it was so busy! (although one family had 5 adults with just one child!!)
Then Alex calls to say that the car park is so full hes had to park out on the road and i had his wallet!
So I had to try and write down all the info (with a crayon!!) to call the parking company to pay for the parking. All the while Reagan is desperatly trying to get down and crawl and empty the contents of my purse while im trying to read my card number. Plus i got cut off twice because of back signal and im not even ment to be on the phone!!!!

About 12.30 they called us in to get her cannulated, they had called in a speciallist this time to use the ultra sound scanner to see the veins. So I had to hold her to me while they did it. they dint use the magic cream because it only makes it harder but the freeze spray they use is just that.....freezing and she screams and screams.
Then they inject a local anesthetic which is a stingy intections and so makes her cry even more.
The first attempt failed and so she had to do the whole thing all over again.
Poor Reagan was so upset, aswell as all that shes being held tightly to keep her still, surrounded by strange people!

By this time it was 1o'clock. They were just making her bed up for her and eve worse than last time it didnt even have sides on it!

All she wanted to do was get down and crawl about but she had to be content with being walked about and cruising around our chairs and the bed.
Then.......someone brings their child in with full blown chicken pox! an you believe it, they didnt even realise, so we were quarantined to our bed and couldnt go any where until it had all been cleaned.

They were so busy we just couldnt gt angry with them and they are all so lovely but again the blood didnt et started until 4.30pm, it takes 4 hrs and after that she had to have her Chicken pox vaccine! oh yes forgot to say that St Georges ordered it in the end for her!

Fortunatly the transfusion went through smoothly and we were moved up to a paed ward at about 7.45pm because the Jungle ward closes at 8pm. Then the transfusion began to play up but it wasnt too much of a set back. Once it had finished at about 8.30pm we just had to wait for them to come and give her her vaccine.

We eventually got home at 10.30pm! Another stupidly long day that was spent trying to keep her occupied, which is getting harder and harder each time.

We're really working hard at getting her walking so at least she can be a bit mobile!

Oh and Dr Pelidis came to see us and we asked her abuout the Phenergan, she said she hadnt really heard of it being given as a sedative (really!!!!) and it can have a bad side effect that is treated with Piriton and so to try piriton first.
She said give her 2.5mls, which is just a normal dose so I couldnt see that doing anything. any way we were to try it for 3 nights and if not then we could go back to Dr Salma and get the Phenergan. I had already bought Phenergan and given it to her an dit had worked but we gave the Piriton ago and it did absolutly nothing at all to help!
So i've been onto Dr Salma to get a prescription, we're still waiting for it but in the mean time im giving her Phenergan any way and she sleeping so much better and has even gone all through the night once!!!
Think i'll go a week and as long as its still working i'll start reducing the dose.

Shes going to have another transfusion on 26th Apr and the 2nd part of the vaccine. Shes then due to see Dr Pelidis the following wk and she'll write her prescription for the steroids then, however, that will only be a couple of wks before we go away, so unless shes prepared to transfuse her before we go any way (which sort of seem silly to start the steroids if she going to be transfused) then we wont start them until we get back!

Weight wise, she was 16lb 5oz and it was 3 wks since her last weigh and she was pretty much the same, so probably lost alittle from the bug she had which had lasted a full wk and she hadnt eaten really either, but she is still on the 2nd centile though!
her length is 69cms, so still right at the bottom centile for height!!!!