A Way Forward - NG Tube

We were transferred by ambulance and it was a rough ride, Faith was really uncomfortable and I could tell she was feeling just as sick as I was. It was quite late at night and Faith was due a bottle feed and I was also hungry including the ambulance drivers, so they stopped at McDonald's and we had some food to keep us going. We got to the Brisbane hospital by midnight and got straight in. Faith was reviewed by a neurosurgeon and they were going to do a MRI but decided to leave it until the next day. Faith was also on a drip as she had another UTI. By about 2am we were moved to the big kids surgical ward as Faith was now over 1 and she would no longer be taken to the babies ward. We both feel straight asleep. Faith was on neurological observations so they woke her every couple of hours. They struggled to wake Faith as she was so exhausted but that is all it was.

The next day Faith had to fast for the MRI and as she wasn't drinking very well anyway and had no fluids running through so we were concerned about dehydration. The MRI got rescheduled for the next day. We could see she was very lethargic as well as having her normal vomiting she was really unwell from the UTI. The next day the MRI went fine. Positive news, Faith's shunt is working fine and the ventricles are looking good. False alarm! 

The doctors decided to keep Faith in hospital to treat the UTI again by IV antibiotics. We stayed an additional 3 days and were sent home with Faith on Cephalexin but we knew this wasn't going to work long as she was always resistant to this antibiotic. Give her a few days and the UTI would be back. Her vomiting was back to normal but she still wasn't really really well. Faith's weight was really struggling as she vomited so much formula up. The dietitian thought it best to try another formula called nutrini and we mixed it temporarily with the infatini so she wouldn't get too confused with the tastes. But we could see Faith was weak and wasn't growing as she should but there seemed nothing we could do but keep going on as we were.

We came home and life went back to the normal way, neuropathic pain, vomiting, sweating, life was just the same. We'd still see a few good days but our biggest concern was all this vomiting and the lack of weight gain. We had another spina bifida clinic and we saw the consultant pediatrician and we said that we thought Faith needed a NG tube or something similar as she is losing weight and just not getting stronger, Faith's ribs could now be seen. UTI's were a constant battle and we never seemed on top of them. None of the antibiotics seemed to work. That particular day Faith was really sick. We had a choice of coming back the following week as an elective admission or get admitted that day. We thought that it was urgent enough so asked for that day. Faith was admitted and put on a drip again to treat the UTI. So over UTI's. Because the vomiting wasn't explainable (Arnold Chiari ii malformation was enough) as such so Faith was isolated. We knew it wasn't anything catchy as she has had it for months but as precaution I guess. 

That night a lovely nurse showed us how to put an NG tube down and we started the feeds. The doctor over prescribed the amount of formula needed so we had way to much food going in and it was a constant battle as it would then make Faith vomit more as she was over full. Eventually we just refused that amount and she did do better and got stronger with slightly adjusted amounts. We stayed in hospital nearly a week and got shown how to insert an NG tube. We then headed home. It was at this point, though we didn't know it at the time, a new antibiotic was introduced to us that would improve Faith's life and help her grow. Faith was put on a 10 day course of Nitrofurtantoin.This antibiotic seem to be only available from the Brisbane hospital. It caused Faith really bad nausea and we had to give some ondansetron to help her through it. After 10 days she got better and we had some ok days, still with some vomiting but a little bit better. UTI's seem to occur 2-3 times per month but a week good is a beginning. It is was good to have a bright spot. Maybe this is the beginning!