Stares and Smiles

So life goes on, the day to day care for Georgia was getting easier once we were used to it.  The vomiting started becoming normal to us.

One struggle I had, which I really didn't think would be a problem, was her medication and milk.  I had to get repeat prescriptions from her GP for both.  The problem started the moment I put the first prescription in, we had a phone call from our doctor asking us what the strength of the medication should be! If he asked me that now I could reel them off easily but being new to the whole thing I didn't have a clue, unfortunately neither did he.  After a lot of calling community nurses and wards I finally found out the dilution of each individual medicine (mgs to mls) and called our doctor back with the info.  He then advised me that the strength I was requesting is only available to inpatients at the hospital therefore I would be given a more diluted version so the dosage would change.  Being a newbie to all this I just agreed with him and said I would just read the bottles when I picked them up, after all he is the health professional not me.
The problem started there, on picking up the meds he had given us 5 times the amount Georgia was used to taking, with a vomiting child you try to keep the amount you put into their tummy to a minimum.  Also the milk he had prescribed was in drip bags, bloody drip bags! 500mls of milk that only had a shelf life of 24 hours (and even that was pushing it) so we were wasting so much of the stuff, not to mention the trouble we had if we ever went out anywhere, having to carry all the drip bags with us. I don't know if you have ever tried to open a drip bag but it is really hard, especially when its 2am and you can hardly function.
Anyway this was the beginning of my long hard battle against my GP, I saw him over 8 times in a month to request these meds to be sorted, it finally took for Southampton to phone him and give him the details for them to be changed.  In between all of this Georgia had been in and out of St Marys with problems that the meds brought with them, as there was so much of them she often vomited them then would puff up like a little blowfish with water retention. 

I probably should mention that Georgia seems to get a chest infection every 2 weeks and has been on antibiotics for most of her life too, this was another reason we were in hospital a lot.  It seems strange that it became my normal life.  I remember calling 999 and being really calm, driving up to the hospital with her at 3am and being pleased that it was that early so there was no traffic! The amount of hours I sat in the hospital with her while she was being poked and prodded, the blood tests, the urine tests, the x rays of her chest and all the while she was smiling!

Rob and I pretty much never went anywhere in case of any problem with Georgia in the first month she was home but it was so unfair on Josh so we decided to risk it and go out for the day.  Looking back now I am horrified we chose the most deserted park on the other side of the island to the hospital, and to top it off we both forgot to take our mobiles! Idiots!  That said though, we had a lovely day with them both and Josh was overjoyed that he finally got to go to the park with Wheeze and show her the swings.  After we had been to the park we went to a little cafe to have lunch and to feed Georgia.  People are funny, the stares she used to get for her feeding tube. Very few people would come over and ask us about it, i found children (with their innocence) were usually the ones to ask.  Honestly, I liked people to ask us, instead of pretending not to be staring.  One lovely man in Sainsbury's came over to Georgia and I and asked me why such a beautiful little girl had to have a feeding tube.  It's not taboo, it is just a feeding tube and I was always more than happy to talk about Georgia's condition, in a way it was a kind of therapy for me as it helped me to get my head round it.

Josh was (and still is) a little treasure.  If I had left the room and Georgia was sick he would come and tell me, a few times he even helped clear it up, bless him.  He understood that Georgia was ill, I often had to take him with me to the hospital when she was there and Rob was at work.  Still to this day when we drive past the hospital he says 'that's where Wheezy lived'.  It makes me sad sometimes to think that both of them have been exposed to this world of illness and hospitals.

I know Georgia's condition is not hereditary but I worry that in the future one of them might have to go through what we have and watch their child suffer, I really hope that never happens, they have had enough sadness.

In March we had an appointment to go back to Southampton to see the Cardiologist (Dr Roman) for a heart echo to check on how she was coping.  At the appointment he told us that she was not coping as well as he expected and would want to do the surgery as soon as possible, but her weight was against her, she still needed to gain more.  So back to the Island we came, feeling a little bit like we had failed in getting her to gain weight.  It took another month for her to get to the right weight for surgery.  Now we had to just sit and wait for the phone call to tell us when the surgery would be.  We were dreading it, we knew she had to have it but apart from the vomiting she seemed so well.  Then everything changed within a few days.