What is a day like for us at the moment? Well, it involves a morning start before dawn not with a happy baby but one with neuropathic pain, vomiting and extreme distress. I am not sure how I am meant to cope with this, if all things were "normalish" then I would most likely be at the hospital but with us this a normal aspect of Faith's life and ours too. Most people who haven't experienced life with a child with special needs don't know how to comprehend this, they expect us to function normally and visit family and friends and do all the 'normal things'. I explain as best as possible but the message doesn't seem to get through it seems to get ignored or acknowledged, then forgotten. Or I guess the other action of some people is to stop calling and stop wanting to hang out, I think this is the worst part as it hurts more. I can understand why they run away and stop contact, I guess it is based in fear and not being able to understand. But, it doesn't make it any easier to manage when we are hurting too and find life hard, intense, frightening and lonely. I didn't imagine it like this, I didn't imagine following this path. I just want to do normal baby stuff too. I understand why some turn away. I don't go out much as the vomiting can come at any time and Faith can't cope with it as she is so unwell, so we just stay home and are hidden away from the world.
Other days are worse and we get to the point where we pack up our things and get in the car and drive back to Brisbane and present to the emergency department as she gets so sick. The trip in the car is a nightmare, instead of being able to manage the vomiting to an extent at home it is a moving car where I sit in the back and learn to catch vomit. Lots of fun. We usually stay 3-7 days and Faith gets a little better but as soon as we get home it starts all over again. I have so many photos of our happier days and they are generally in hospital or with us walking by the Brisbane River. We still attend the spina bifida clinics though now we manage to see all the doctors as Faith's an in patient and the doctors see how sick she is and admit her again and we go through the same cycle over and over again. There are not many good days and not much of a life for any of us let alone Faith. She still can't sit up and developmentally we are falling behind, but it's not fair as she is always sick and there is no chance for growth and development if she is never well more than a week at a time.
A bright spark came unexpectedly in that we had a couple of good days that turned into a week, we loved this time. There was quiet and peaceful sleep. A baby that smiled a little. The neuropathic pain stopped at this time and so did the sweating. Bad days still out numbered the good days but it was a start. Each time we saw the sweating and strange temperature on each side of the body return we knew the bad days were back. Amongst this we found out that Faith was retaining more wee in her bladder than she should, so we started catheterizing 4 times a day. It wasn't a hard task it just another thing to do in our day. Faith started to get Urinary tract infections (UTI) which brought on more vomiting, temperatures and weight loss. To get Faith to gain weight was so hard. We changed infatrini formula to see if that would help. Faith sucked the bottle so intensely but we really needed to pace her as the faster she drunk the faster she would throw up. She would still vomit anyway but we just wanted to keep the formula in her as long as possible. Every time we tried pureed foods we would get into a good rhythm and she would get really sick again and we would be back to the beginning. It was so discouraging.
At times the doctors didn't want to treat her UTI's as they said if she has symptoms we will treat it. But the problem was how could you tell whether she was symptomatic for the UTI's as she was vomiting so much anyway. The Arnold Chiari does cause some of the vomiting but I think the UTI's were contributing as well. It was so hard to tell and so hard to know what to do. We were constantly questioning the doctors and trying to learn more and to try and figure out what was best for Faith. Doctors don't always know what is best even though the majority of them were trying hard. Faith was a prophylactic antibiotic being Batrium but after being on it for a couple of months it was found that all the UTI strains she had were resistant so it wasn't doing much so she was taken off the prophylactic. Actually Faith was resistant to so many of the antibiotics and she would improve for a little while on the drip antibiotic like Gentamicin but as soon as she was sent home with another one like Cephalexin, the UTI would return and back to hospital she went.
We spent so much time living at the Brisbane hospital as the local hospital service where we lived just couldn't handle Faith's conditions. It was to complicated for them. Every time she went there she always ended up picking up some other bug and was sicker than before. For now, we just had to keep going a minute at a time and hope and keep hoping and praying that life would get easier and we would see light at the end of the tunnel. Surely it wasn't far away!
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