What a recovery

On Monday morning we did another chest x-ray. Otherwise the day went well. Celina sounded muuuuch better. The tube feeds went well and she was far more awake. We also saw some beautiful smiles. When the doctor came in the afternoon she showed me the chest x-ray and amazingly the lungs are fine again and almost completely clear again. Wow, thank you Lord. At 12 midnight they pulled the catheter and on Tuesday(today) she peed fine again. Thank you Lord.
In the evening Celina was off the oxygen and off the monitor. All that is left now is the feeding tube and the drip. The drip is going to stay probably until we are finish with the antibiotics and that should be tomorrow.
The pH study results came this morning and they did not look too good. The reflux is not really that bad but there seem to be some places in the oesophagus where the food is not transported properly.
So, on Friday she is going into theater ......No not for the PEG...... they are going to do a scope of the oesophagus, stomach and bowels to check every millimeter and check for obstructions.
Something just seems not to be all alright with all the urine, stool, throat, nose and eating problems Celina had. And it just seems that it is happening just too fast to put it down to muscle weakness.
This morning I prayed and just spoke to God and asked him to talk to me. I stood on His word and spiritually took Celina and placed her on victory ground. For Jesus has won the victory for us on the cross and I stand on that truth.
We had a wonderful day with Celina laughing and smiling the whole day and she even had a couple of spoons of oral food.
Lord we give you all the glory for using the doctors and nurses and just everybody around us and all the prayers around the world for Celina's wonderful recovery.

 

You are the Alpha and Omega the Beginning and the End. You have the last word and you are Healer and Provider and Protector, Saviour and our best Friend. Thank you that you love us so much that you even gave your live to save us.

  

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.

What a weekend. But God was present in the room, in us, in Celina, in the doctors and in everybody who looked after Celina.

Thank You Lord you are just amazing.

  

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.