In early December 2009 Great Ormond Street had requested some further tests to be conducted by the QMC in Nottingham, the tests consisted of a muscle biopsy, lumber puncture, urine tests and an array of Blood tests .
Christmas became a very anxious time for us as we just wanted to get the tests done and find out what was wrong with Harriet , but knew that nothing would happen during the festive period .
Over the course of the last few months we had still not heard anything from Great Ormond, QMC or Derby city hospital and therefore had to keep phoning them to find out why things were taking so long and at times got very frustrated with the hospitals responses .
Harriet was due to go into the QMC on several occasions during January 2010, but these all had to cancelled due to the hospital either not being able to supply her with a bed or one of the anesthetists or surgeons not being able to make the slot for the procedure .
On the 1st February one of the consultants from the QMC phoned to say that they had a bed for Harriet and that we needed to bring her in on the 3rd February, which was day before they were able to perform the investigations as they needed to check her health and well being .
We packed all Harriet`s clothes toys, medical equipment and headed off to the hospital early afternoon on the 4th January as we needed to be on ward E39 before 4 pm as Harriet had to be assessed by the neurosurgery team.
The anesthetist was the first to look at Harriet, she was happy with her saturations and overall respiratory condition that would enable the operation to go ahead . It was not long before the two neurosurgeons came to see Harriet and explained to us what the procedures were that they wanted to perform on Harriet and why they needed to operate on Harriet .
Harriet was due to have the muscle biopsy and lumber puncture all under general anesthetic and I had to sign the consent forms to say that I was happy with the procedure and that I knew what the risks were .
After a couple of hours we left Harriet on the ward and drove home, I felt as though I had just abandoned my 9 month old daughter and could do nothing to help her, which made me feel very sad .
Harriet`s operation took place the following morning at just before 9.00a.m, we were unable to get to the hospital until 10.30a.m , only find that Harriet was still in the operating theatre . At 11.00a.m Harriet came back onto ward E39 and was fast asleep, she had a large transparent bandage on her leg where the surgeons performed the biopsy and also a large patch on her spine where the surgeon did the lumber puncture to get fluid from her spine .
An hour later one of the doctors came onto the ward and said that they he needed to take some more blood from Harriet for tests, I just watched helplessly as he extracted 5 bottles of blood from her hand.
In the afternoon I spoke to Harriet`s consultant and asked if she could come home that night and few hours later he gave us the green light to go home, but said we needed to keep an eye on her .
We now have to wait months for Harriet`s results to come back from the laboratories, which will be another anxious and stressful time for the whole family .
If there is one thing I have learned since the birth of Harriet and all the visits to hospitals, is that life is very precious and can be taken away at any time .
I would just like to say a big thank you to all the team on ward E39 at the QMC for making our time at the hospital as comfortable as possible .
Mum and Dad