What a day

The day did not start very good. The nasal gastric tube needed to come out before the barium swallow. When they pulled it out it got stuck on the last piece and didn't move. Celina started screaming the nurse called for the sister. Celina's colour changed slightly. Then the sister came put on cloves as quick as she could and pulled but it seemed to be stuck. Celina screamed even more and then with one big pull the tube came out with a big knot at the end. The whole tube had curled up and build a knot. It was almost unexplainable how this could have happened. I have never seen something like that and believe me Celina had quiet some nasal gastric tubes in already. Her nose was bleeding  extremely but more backward to the throat. Looking into her mouth everything was full of blood. Fortunately the physio was still there and straight away suctioned her. Quite a bit of blood was suctioned Celina still crying. What must this child still go through.
Then we had to go to have a barium swallow done. She was still traumatised and not exactly willing to drink the stuff they needed her to drink. So, it was difficult and I do not believe that under these circumstances it gives us a proper result.
Then the OT came to watch her eating which also didn't go well. Celina did not want to eat was very sleepy. And the food was again ridiculous. Now Celina got her own chef who is chosen to be the person and the only person to do her food. Wow.
Anyways after all this the ENT came to have a look again and brought a special tube to look into her nose and throat a little deeper. And he said he can't see much because everything is full of phlegm but more in the throat. Since the Sinus CT scan is clear and the lung x-ray from yesterday was clear the stuff must come up from the stomach. Which points to reflux which was confirmed by the barium swallow. Now the point is why is she suddenly having reflux???  And by now she hadn't had a wee in 24 hours and the blood test they took this morning showed that she was a little dehydrated. But 24 hours not having a wee while having had water every four hours besides at night is going a bit too far. And the stool story is also not working too good. Is that stuff pushing up because it is not getting down????? Questions questions questions!!!!
The doctor is already talking about putting the PEG back in and I am definitely not impressed and don't even want to think about it.

God is bigger then this. He is Celina's healer and her physician with the last report. Thank you Lord.