God never left: Turn to the worst

Wednesday we had a meeting with the doctor and he said Celina would need a Nisan procedure to stop her from refluxing and preferably put in a PEG. I said I would be willing to do the Nisan but no PEG. And I am convinced that I will be able to feed her again. He gave us 5 days time to get her on full oral feeds. If that would happen then he would send us home on Monday with an NG tube just for the liquids. If not she would have to have the Nisan.
He also told us that he was on his way out on holiday for 10 days and ask me which doctor I wanted to look after Celina. I chose the doctor I always choose in these situations.
I started feeding her and the first feed started off not so well and I felt like giving up. I pulled myself together and went on very gently. It went OK. Then from meal to meal it got a bit better. On Thursday a pH cable was inserted through her nose into her stomach to study how much reflux she has. The first try to put the cable in ended in Celina coughing profusely and not stopping until it was pulled out again with the comment that it went down in the wrong place. The second try went well.
In the evening she suddenly started a temperature and was given meds for it. At 2 am she still had a temperature and was given more meds. The temperature was down in the morning but again she hadn't had a wee in 26 hours and her breathing was bad. When the doctor came she put a catheter in and drew out the urine with a syringe to see how much was in the bladder. 320 ml. Quite a bit for a little girl but the breathing got a little better. Now a row of tests were on the plan for the day. Blood tests, urine tests, an ultrasound of the organs and a chest x-ray. By lunchtime we were through with everything. The ultrasound showed that she had some stuff floating around in her bladder which stopped the urine from coming out. Now we were waiting for the doctor to tell us what would happen from here. In the meanwhile a catheter was inserted to relieve the pressure on Celina's bladder. In the afternoon I saw some whitish gel like thick stuff in the tube of the catheter. I ask the sister to catch the stuff with the container to send it in because I was sure that was the stuff floating in Celina's bladder. We had to find out what it was.
Then when the doctor came late afternoon we went through the pics of the ultrasound of the bladder and then to the x-ray of the lungs and I wasn't prepared for what came now. The right lower lobe had collapsed and she had a pneumonia. The doctor said probably aspiration. I said how is that possible she ate fine and didn't even cough. She ask me about the tube and that was the moment when I remembered about the cable that was inserted into the lungs instead of the stomach at first. And now I got really upset.
Celina was put on a strong antibiotic on intravenous panado for the temperature because by now it had gone up to over 39 C and on intravenous liquid. For the weekend a locum was on I didn't know and I felt a bit uncomfortable with it. But our doctor said I mustn't worry she will pop in on Saturday. What a relieve.
Saturday morning Celina sounded so bad, like she could barely breath and was just sleeping not waking up eyes half open. The locum doctor first ask me questions and then checked on Celina. He wasn't happy at all. He took her off the Valium for 24 hours to get a better picture of her consciousness. He started her on tube feed because he said she needs the nutrition. He ask the sister to put up a sets monitor for continuous readings. He looked quite worried and also got on the phone with our doctor.
He stayed quite a long time and watched Celina. Later in the afternoon our doctor came checked the situation and instructed the sister to give Celina an adrenaline neb and another neb for the lungs. After this her breathing was a little better. Later the locum doctor came in again to check on our little girl. I was at peace. The doctors worked as a fantastic team. The physio did a wonderful job getting rid of a lot of phlegm.
Sunday was very quiet. Celina sounded a lot better and was for a short moment awake in the morning. After the first chest physio at 7 am she went back to sleep. Both doctors came in to check on her. Celina slept the whole day and had two more chest physio sessions and also a bit of neuro physio to stretch her. She sounded much better. Celina also had regular stools over the last 2-3 days. Everything seems to get better. To end the day the locum doctor came in at 10 pm to check a last time on Celina. He had done a great job and I thanked him. Both doctor did a great job and I am very thankful for our doctor popping in on her off weekend.

Sleeping breathing much better. Our angel.