Tuesday, 25 November 2008

Dounya's surgery soon

Like I said on Friday yesterday and today I had to go to appointments with Dounya.
Yesterday I went first thing in the morning to our local hospital to get a blood sample. Her digoxin level was low so they have increased the medication. In the afternoon I had to go back to see the paediatrician in the outpatients clinic. Somehow I don't feel at ease with him. It started when I met him the first time somehow he got me upset and confused straight away. I think from that day on it went wrong. He makes me feel very insecure by remarks he makes. When Dounya was admitted in hospital he told me he was ''relieved'' she was admitted, and until today I try to figure out what he meant by that...It sounded like he didn't have too much confidence in me. And today he asked me if I was sure that I gave Dounya her Digoxin twice a day because the level in her blood was still low..I felt hurt! Like I will be so uncaring about my own daughter !! Every morning and evening I give it at 8 o'clock and I have never forgotten!! Of course not!!
He was not happy with her weight gain as well ( she gained another 70 grams so a total of 190grams since Tuesday!) and wrote a little note for my cardiac consultant and the surgeon: failing to thrive..consider NG tube ....
When I came back from the app. I felt like I am doing everything wrong but in my heart I know I am doing all I can!!!
So today it was of to Belfast...can you believe I was stuck in a cue for a parking space for an HOUR???I arrived 13.50 ( app was at 2.30) and got in at 2.55!! But luckily they know how bad it is there so it was not a problem.
Had a little talk with the surgeon. He said he would prefer it if Dounya will gain another kilo before surgery so she needs to be around 5 kilogram. But if we don't reach that he will go ahead with the surgery which will be in January or February 2009...
O my god that is so close already!!
If somehow she should need it earlier she will have it but I hope that will not be the case. I want to get her as strong as possible for this.
You can see he has a lot of experience and I have heard very good things of him so Dounya will be in good hands. Does not make it less scary though..

After my meeting with Mr. Gladstone I had a chat with the Cardiac Liaison nurse and after she had talked to the CC, Dr. Craig she said they were happy with Dounya. She is gaining weight although slowly and they want to try to avoid the tube. Tomorrow she will phone the dietitian and discuss with her the option to add duocal to every feed. I hope that will do the trick.
And she said I was doing my very best with Dounya which showed in her being so content and happy. That was a boost for my confidence and I really needed that
after yesterday!

So the countdown has begun...January or February... I am terrified already!!


Awesome Mom said...

I would get a new pediatrician. They need to be there to reassure you not to make you feel like you are a bad parent. We have always had very supportive doctors, the ones that are not I find a replacement as soon as possible.

Posh Totty said...

Eeek that countdown part is always the worst, I hate it knowing the letter or phone call can come at anytime, its like sitting on the edge of your seat constantly isnt it?

Fingers crossed she can gain a little more weight before that time comes Xxx