2

Medical Update #5 – More Results, No Answers

IMG_0553.JPG

Thursday, 18 September 2014: One Year, One Hundred and Seventy Days Old

It’s been a nervous wait the past few days, wondering what today would hold.

I didn’t have high hopes for an answer to Ayla’s problems, but I was dreading an complete absence of possible next steps that would leave me back at square one with only google and peopel’s theories to get me by.

But, the doctor was wonderful, again. Clear, precise, caring and to the point. Here’s what he said;

RE: Failure to Thrive

The procedure on Friday proved that Ayla’s Failure to Thrive is NOT a result of digestive issues, although he definitely concedes there is something wrong with her growth (Ayla’s only grown two centimetres in the last 9 months and she weighs even less now than she did back then. FYI – she’s now 17.5 months old). According to the doctor Ayla’s digestive system is working correctly and shows no sign of damage, meaning that her Failure To Thrive is not due to an inabilty to absorb nutrients from food. This supports his comments around Ayla not actually looking like she’s malnourished; Ayla is perfectly proportioned, just miniature in size and not growing. These findings have also confirmed that the Paediatric Endocrinologist we’re booked in to see in mid-October is the best next step for us because apparently she will be able to conduct tests that look specifically at Ayla’s size and growth as a primary concern.

RE: Lack of Appetite

The procedure on Friday did show some irritiation to Ayla’s upper digestive system, suggesting that she may be suffering a small amount of reflux. While Ayla’s reflux is far from severe and virtually insignificant, the doctor has prescribed some anti-reflux medication for us to try over the next month. He hopes that by addressing even the slightest discomfort brought on by food, Ayla may regain confidence in eating and thus rediscover her appetitite. He said it’s an unlikely long shot but something we should try anyway.

In the meantime, the doctor has also given us some gluten-free-dairy-free-anti-alergen baby formula to try. The formula tastes pretty bad apparently so he’s asked us to try Ayla on it first. If she accepts it he’ll write out a prescription for more (at $40 a tin!) so we’ll at least know she’s getting the calories she needs regardless of how much, or little, she actually eats.

RE: Constipation

We have been instructed to maintain the daily laxatives Ayla is taking, which remains at the same levels recommended for a six year old. The Doctor was concious of the trauma Ayla’s constipation could cause long-term if we stop, and he feels that the issue will resolve if Ayla’s diet improves ie; the small amounts of food Ayla actually eats at the moment are probably not providing her body with the full range of things it needs to create normal bowel motions. He also believes that we should address the growth issue as the number one concern and hopefully in identifying/rectifying that, the rest will be easier to treat.

So that’s it for now. We’re trying to get a plane ticket home as soon as possible so that we can return to normal life for at least a few weeks before heading back here again for our mid-October appointment and subsequent tests. I’ll keep you posted….

Advertisements
0

Medical update #4 – Procedure Day

IMG_0482.JPG

Friday, 12 September 2014: One Year, One Hundred and Sixty Four Days Old.

Ayla had her investigative procedure today, to check out her entire digestive system.

The procedure required Ayla to fast from 7.30am, so by the time Ayla went to get ready for theatre at 3.00pm she was hungry, thirsty and tired.

I went in with her, suited up in a white robe and a fancy blue hair net, and held her little hand and brushed her hair while she breathed in the gas and drifted off to sleep.

Ayla was under anesthetic for 40 minutes, while her gastroenterological paediatrician conducted a “gastroscopy” and a “sigmoidoscopy” which included a couple of biopsies and another full set of bloods.

Ayla woke up an hour later, groggy and a little upset with a bit of a cough and a husky voice from the oxygen tube. There was a few tears, but as soon as we met her in Recovery, gave her a bottle and sat with her in a rocking chair, Ayla quickly drifted back to sleep.

We were discharged at 5.30pm with test results due back next Thursday. The procedure went well but the doc seemed a little surprised he found evidence of digestive irritation, apart from that there was no kinks, twists or damage to Ayla’s insides.

We now also have to wait for our next specialist appointment, with a paediatric endocrinologist (ie: growth expert), scheduled for 15 October, and for Ayla’s chromosomal blood tests to come back in the next couple of weeks