My Princess Danielle

  Just as we thought that things going to be smooth, the following day Danielle feeding tube balloon that hold the tube in place in her stomach burst. At the sametime, our van broke down just we preparing to brought to hospital. Thanks God that it didn't broke down during the way to hospital but broke down in the carpark after my wife went to fetch Beth after school. We managed to get hold of another transport to bring us to Hospital. We got a surgeon that did botok for Danielle to replace the feeding tube. Not the usual doctor , as this time we decided to try out another method to insert the feeding tube through radioscopy. It shorten the time of replacement , as it can be carry out without any general anaesthetic. We were able to discharge within the sameday as compare to previous method. After the procedure, we able to secure another transport to bring us back home. The following day, thinking that everything was fine. I was back to w...

Just not more than 2 month of usage for the new JG low profile button , the balloon that prevent the button from coming out suddenly burst over the weekend. Which mean the tubing might come out of the jeurnal . After experience the last round of the button balloon bursting,  we gave feedback to the hospital that this process of replacing her tubing should be treated as emergence. Cos Danielle case of replacing her JG button abit complex as she required a operating theater, undergo GA and using a scope to guide the JG tubing into her jeurnal. This time round we were well prepared. We admitted her into the Accident and Emergence Department in the evening and the next morning she being schedule for the tubing replacement procedure. After the replacement of the JG tubing was done in the morning, with few hours of monitor her condition and she was discharged from the hospital in the late afternoon. All this were not made possible without the prayer covering from our cell gro...

There was a bit of delay in the morning for the schedule operation, it was shifted to afternoon 1pm and it was done by 3.30pm. This Danielle's new low profile GJ button replace her worn off high profile GJ button. As for trach area, the ENT doctor didn't find any unusual tissue growth inside her airway. Oh, Danielle lost one of her front teeth in this procedure, explain by the surgeon that her mouth wasn't able to open wide enough. Now she has no more front teeth- two front teeth lost on the last episode and this time one more. Anyway, she not using her teeth to chew food that how I came to the term.     

Danielle is preparing for a coming tea party organise by the hospital- Project Simile.Before this happen, Danielle will have to admit on coming wednesday to hospital to replace her worn off jg button and check the trach area. The replacement of the button has to be carry under GA and this shedule on thursday. Till then praying that everything will go well for this coming procedure.

On last thursday afternoon, Danielle finally was well to be discharge from the hospital. After a night stay at home, we had to rush her to back to the hospital due to her GJ tubing burst. As it happened on friday and there a holiday coming up on Monday,there no doctor to carry out the procedure to replace the GJ tube under endoscopy. The doctor carry out the last insertion was out of town. We had to wait until tomorrow to carry out the insertion of the GJ tube. Until then Danielle, is on IV drip since friday night and a very slow feeding rate through the peg button. Yesterday, danielle secreation started to get thicken again and her trachy was again block. We are praying that Danielle protected against cross infection within the ward. Looking forward tomorrow for the procedure.