Tuesday, 21 February 2012
The week a lot of wine was drunk!
It was a usual sort of week..........back to the doctors for more checkups and a blood test. This blood test was to check FD's folate levels as she was being tortured with recurring mouth ulcers. We had tried every treatment known to man and they just did not seem to work. Her dentist suggested that FD might have a folic acid and Vitamin B12 deficiency and we would need to have blood taken. So, that's what we did. I phoned for the results a few days later expecting to be told that yes her levels were too low and here's some supplements to alleviate the problem. What I was not expecting was to be told I needed to speak to the doctor. I felt slightly panicky but reckoned that because of all FD's health problems and her up-coming operation, the GP needed to discuss what medication she needed in the build up to her operation.
However, when I finally spoke to the doctor she was very quiet and almost contemplative over the phone. FD's folic levels were normal (which was a total shock), her iron levels were a bit low (not unexpected given her poor diet). Then the GP asked , 'have you been giving her Vitamin B12 injections'? When I assured the GP that she had not been receiving any supplements she again went quiet before announcing that FD's vitamin B12 levels were 'abnormally high'. The GP explained that this could be a skewed lab result and more blood would need to be taken as it may therefore be a mistake in the blood test. However, as I am talking on the phone to her I am doing that awful thing that us stupid people do...........I am googling a diagnosis!!!
Google, although an extremely useful tool is not the sort of thing that you should go anywhere near if you have health concerns. Google immediately highlighted that elevated B12 in children can be an indicator of one of two things..........liver disease or leukaemia! I prompted the GP for further explanation of why the blood test could come back the way it had but she was hesitant to give an answer so simply encouraged us to come back to the surgery for a further blood test. And so we did. We spent the whole weekend worried sick. I didn't sleep much and was very weepy. A few days later I phoned up for the result to be told 'you need to make an appointment to see the doctor'. My heart started to beat in my chest so hard I actually thought I was going to pass out. 'Why'? I asked the poor receptionist whose only answer was 'I don't know and I don't understand the test results so come in and see the doctor on Wednesday'. This was Monday and naturally I couldn't wait until Wednesday to see a doctor so was advised to phone back later that morning to speak to the doctor in person. So, for the next two hours I sat and cried, gasped for breath and cried some more. I phoned my husband in a total panic. I texted my mother in law who works as a doctors receptionist, hoping she might know what the hell was going on. But she hadn't come across these sort of test results before.
The sort of panic that sets in when waiting for test results is like nothing I have ever felt before, even with all FD's difficulties I think this has been the worst one of all. I was mentally preparing myself for the worst news possible. Even if the news wasn't as bad as I was imagining, it would certainly delay her spinal surgery. Surgery we have been waiting on for 2 years now. I had to keep reminding myself to breathe and when I did breathe I had to remind myself to slow it down and stop panting in a panic attack sort of way. Thankfully during this time FD was still in bed sleeping so didn't see me in such a state. When I spoke to the doctor she simply stated that she did not know the reason for the test to come back the way it had and stated that we should come into the surgery as planned on Wednesday as FD would need a physical examination. Now by this point I was having to be scraped off the ceiling. I told the doctor that I wanted her looked at today. I was very simply told no, the doctor did not have any time to see us today as she only had emergency appointments left. 'THIS IS AN EMERGENCY!' I wailed! 'ITS OUR EMERGENCY'!
But she would not give in. She advised us to come back to the surgery that day and have more blood tests done to check to see whether FD might have some liver problems! By this point FD was out of bed and I was having one of those arguments down the phone that you have through gritted teeth with a smile on your face so that FD did not get upset or worried. I began to demand an appointment with ANY doctor at the surgery. She held the phone away from her and I could hear her saying, 'anyone free to see a mother who is up the wall with stress'! There was a resounding no. I told her that yes I was bloody well up the wall with stress and it was stress that she was now creating so get me an appointment NOW!!! She was standing firm that for her this was not an emergency! The call ended by me throwing the phone across the room! Ooops.
So, poor OH got a panicked phone call from me crying about the doctor refusing to see us. Now, theres one thing about my husband that you should know. He never takes NO for an answer where other professionals are concerned. He promptly got on the phone to the surgery and I don't know what he said or what piece of legislation he shoved down their throats but we had an appointment an hour later! It was not with the gobby doctor I'd argued with but another doctor we hated! But any doctor at this point was better than no doctor. He attempted vainly to examine FD, looking for an enlarged liver and spleen that would indicate liver problems. Have you ever tried to touch the tummy of a child who is touch sensitive? No? Neither had he. He almost ended up getting FD's knee into the back of his head! I can't fault him though on his approach as he was a lot more sensitive to her needs than he had been a few months back. But FD kept wriggling and jumping off the table and at one point was crying. I was having to hold her hands to stop her from punching him. At the end of the examination he was confident he could not feel anything untoward but it was difficult to be sure as FD kept tensing up. We would have to wait for the test results to come back the following morning. Those tests would be looking at liver function and whether any 'other' blood disorders (I knew he meant leukaemia) were being flagged up.
And so, began another slow and upsetting sleepless night. Both OH and myself were awake most of the night with worry. We'd tried to have an early night but both of us were awake by 1am! It was the most awful, heartbreaking and frightening feeling in the world as in my head I tried not to think of worse case scenarios but naturally did. When the surgery opened at 9am I was straight on the phone and was told the doctor would need to speak to me at 11.30! Arghhhhhhhhhh more waiting!!!
So for the next 2 and a half hours I cleaned and cleaned and cleaned! My skirting boards are sparkling. When I eventually got speaking to the doctor we were told the happy news that FD's liver function tests came back normal. Then he said, 'you know I was worried about Leukaemia yesterday but didn't say because I didn't want to worry you'. TOO SODDING LATE!!!! Why does the medical profession think that the word parent equates to stupid? Thankfully Leukaemia was being ruled out because FD's white blood cell count was normal. I sat on the floor with relief. My legs just seemed to lose all their strength. FD will need her blood checked every few months until things stabilise. The doctors still have no idea why her body is producing excess amounts of Vitamin B12 but they don't think it will do her any harm. Of course her surgeon will have to have a look at all the blood test results and make up his mind regarding her surgery and if this will impact on things but we will just have to wait and see.
This is a week I never ever want to have to live through again. I have never been so scared in my whole life. I have always had a fear that FD would not make it to adulthood and this is something I have never been able to shake since the day she was born. She seems almost too fragile. Having this scare honestly made me think that this was it! Her time had come. It seems stupid now seeing it written down but in my head the fear was all consuming. Throughout it all FD was a superstar despite having 3 lots of blood tests done and a physical examination. I on the other hand was a mess! This was a week my Superwoman knickers were feeling a little tight! Thankfully I had fantastic support from my husband, his family and my lovely online family on Twitter and Facebook. Thanks guys. xxxx
Posted by JB JOHNSTON at Tuesday, February 21, 2012