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We're back!(10 Posts)
I am finally getting around to doing an update after Jamie's paed appointment on valentines day. (Jamie is FTT and undergoing sweat tests for CF).
Anyway, we went and as anticipated by me and dh, Jamie was admitted to the childrens ward for more tests as he still only weighed 14lb 3 oz at 7 months and 3 weeks. All of the standard tests have come back negative. They sent him for a 4th sweat test, but still couldn't get enough sweat, so took bloods for a genetic test instead. We are still awaiting those results as well as the fecal fat test (checking how much food passes through his system undigested). The paed has refered him to the cardiology team at Birmingham childrens as J still has a heart murmur. We were also told that his heart beats a bit faster than it should do for his age, about 140 instead of 110bpm.
One bit of good news was that the dietician and hospital play specialist spent a few hours working with Jamie one day and he has now been on 3 solid meals a day as well as his breastfeeds for nearly 2 weeks. We do have to add butter to everything to help fatten him up! I guess time will tell how fast he will gain weight. He has to attend weekly weigh-ins for the next 8 weeks until we go back to see the paed.
Aside from our week long stay at the hosp, we have been hiding out at the houses of our friends and relatives while the house is in disarray from the extension that we have had built. The walls were knocked through while J & I were away, so it is damn cold in here!!
Hope that everyone else is well.
Kerry & Jamie x
Where you from connorsmum? Birmingham Childrens is an excellent hospital.
I'm from Cannock (between wolves and stafford) and my nearest hospital is Stafford General. I have never been to Birmingham but I have heard nothing but good things about them.
Connorsmum - my dd is treated by the cardiology team at Birmingham, also I'm not far from you in Stoke. CAT me ( contact another talker at the top of the page) if you'd like to chat. Dd was diagnosed as FTT and had numerous tests before a heart problem was diagnosed. A murmur and fast heart rate may not be anything serious so try not to worry.
Good news about the eating - I know it goes against the grain to add butter and cream to food but it does help with the weight gain. Dd's fave was ready brek made with double cream Yuk!
And we've got the builders in too!! The house is a tip and its driving me nuts.
Potty - sounds like we have a bit in common. I am fed up with having the builders in now, it's been going on since the 3rd week in November. I can't complain too much as the extra space is nice!
As for Jamie's murmur and stuff, I am not really too concerned, just a bit miffed that I was told that it was an innocent murmur when he was born and should have disappeared by the time he was 6 weeks old (6 1/2 months ago)!!
The butter in the food is a bit of a pain as it means that he won't eat anything that is room temperature, and of course, he smells like butter all the time. I haven't tried the double cream yet. We are just making sure that he doesn't have a problem with dairy before proceeding.
It sounds as though Jamie's making good progress with his eating. Do you know when you'll get the results back from his tests?
CT - We don't know. Once again I was told that no news is good news, but I would still like to know the results, even if they found nothing. I can't just sit and wait for 8 weeks. I have to go back to the hospital tomorrow to get them to do some paperwork for a health cashplan that I have, so I think that I will ask while I am there. The genetics test may not be back as they had to send it to another hospital.
Connorsmum - they've only been here for three weeks - the fun starts this week when they move inside.
I'm not surprised that you feel a bit 'miffed' over the murmur - heart problems, even minor ones and FTT go hand in hand so they really should have checked it out sooner. Hope you can get your other test results soon.
Keep in touch.
Well, Jamie got weighed this morning and has gained 8oz!!! He is now 14lb 14oz. This is the most that he has ever weighed I am going to give the hospital until thursday and then call to see if they have heard anything.
Potty: Oh, good luck with your builders! Our are finally moving on out at the end of the week, they are just doing the finishing touches for the rest of the week. Then I have to clean the place from top to bottom and decorate
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