Feverish Baby

Make the most of the Ups and they'll carry you through the Down's

My poor Tali has really had a difficult couple of nights - her temperature has soared up and fluctuated between 38 and 40. I stay by her side and just pray so hard for her fever to break. Last night we called helicopteros sanitarios just to make sure she was ok and didn't need to be hospitalized. They just said to keep giving her parecetomol and watching her - if her situation gets worse, then to take her to her paediatrician or hospital. It is hard to know what to do as we have no diagnosis. We just have to rely on our instincts and follow her lead. Even the medics don't seem to know what to suggest. But between Calpol, Belladona and homeopathic flu remedy, I am hoping to get her back to shape asap.

Thankfully she is eating - although only very little but at least she is staying hydrated. She is a very good girl and barely complains - she looks so tired and when she is so weak, she looks alarmingly skinny. Still, I know she will get out of this. Every child has colds and flus. Unfortunately Tali's muscle tone suffers but we will re-build it up again after this nasty bug has passed. She just needs rest, rest, rest ....so we are housebound!!!

Just keep your fingers crossed that she maintains her weight - we have worked so hard to get her up past the 6kg mark, I don't want to fall back again. If she does, tube feeding will definitely need to be considered. So we're back on the roller coaster!!!

To Tube Feed or Not to Tube Feed

The biggest issue that I had to face in the US was the question of tube feeding. I was expecting the subject to be brought up but despite this expectation, it still hit me in the pit of the stomach when Dr Parikh and his colleagues recommended that Talia be nocturnally tube fed via a g-tube. To be honest the thought of feeding her this way makes me feel a little ill. But why am I so against it?? To be honest, for months when Talia was 4, 6, 8 months, I asked for it, I suggested it, I wanted it. But at the time, Talia was feeding badly due to her low tone and inability to suck an swallow. However, now, my darling baby loves her food, relishes it even. From crisps to avocado, mealtimes - yes they take long, but they are well worth it. So I have many reservations as it has taken me a long time to get her to learn to chew and swallow. My husband was really tough on her refusing to feed unless she opened her mouth and now she cando it beautifully. She eats an average of 1000 kcals a day and that of a two year old should be 1200 but remember she is the weight of a 2 month old!! Wont feeding at night make her lose her appetite in the day???? WHAT ABOUT HER MUSCLES? Feeding is a great way to exercise the mouth muscles - will she get lazy??? BUT worst of all for me is the thought of putting her under a general anaesthetic to carry out the procedure. Tália is extremely sensitive to it and I feel it is a very big risk.

On the other hand, I have to look at pros, look at cases. The nutritionist in the States said that the procedure was very simple. They agreed to support me from abroad - answer any questions etc. They really were so giving and warm and happy to let me ask as many questions as I wanted.

Could my closed minded approach be bad for Tali? I realize that I need to consider this option carefully and need to study it. In order to do so, I have contacted the gastro dr here in Malaga and after chatting about it we have decided to give Talia until October/November to make a deision. The procedure here is pretty much the same but the doctors think I should work a bit more with the diet side of things prior to making a decision. Also in August we are attending a Walkng with Giants Conference. Many children attending will be tube fed. It will be good to get some first hand advice and opinions from parents and kids.

Just now I am gong to do everything in my power to build up Tali's strength and weight. I know that when the time is right, I willl know what decision to take. As Talia loves swimming, I had already decided not to do anything over the Summer. Our lives are here to enjoy, to make the most of. I want her to enjoy the beach and pool. She is such a happy go lucky and happiness is key.