10. The wake up
Wednesday 14th June
I got to the hospital at 8.30am and the nurse said he had, had a good night. Oxygen level was now 25% whereas previously it was between 50-60%.
They are hoping to get his tube out today. I am worried. His skin looks bad still. How will he react. We don't think he is ready. But we also want to see our Freddie again.
At 10.50am the Dr that was on (Liz) decided today was the day and she took him off the ventilator and oxygen just like that. No trip to theatre. No thought about pain relief. Just off and out.
Freddie woke up in a world off pain. Agitated. Screaming. Pulling at his wires. He manged to pull out his NG tube.
It took a good couple of hours to settle him and the only way the managed to settle him was through putting his ketamine back on.
3pm he was finally asleep. His skin all red and sore. He is exhausted. In a world of pain and discomfort.
They have had to put him back on Dexmed which helps male him sleepy.
Frustrated they took him off all his drugs when they woke him. It doesn't make sense.
We were told that he might need to go to theatre to get his eyes examined as he is refusing eye drops.
At 2.30pm the Eye doctor says he wants to examine his eyes in the room. I strongly said he would not allow that. He is in pain. He can't open his eyes. He insisted.
The Dr tried to give Freddie a sedation that would be safe for him. 10ml she gave him first. He screamed.
Another 10ml she gave him. He screamed. He shouted. He was pulling his wires. He was trying to get away from them.
The Dr was unsure to give him another dose. She did. Another 10ml.
Freddies HR was sky high. His O2 dropped. He was screaming he couldn't breathe. He couldn't breathe.
They then still tried to give him another medicine to calm him. He wouldn't calm. The eye Dr finally said it wasn't going to happen.
Freddie was in a world of pain. Unnecessary pain. The nurses had even said that it was inhumane what they put him through. Enough was enough.
The lead Dr. Said if they can't get his pain under control they would have to sedate him properly and but him back on oxygen.
He was now on the maximum pain relief for a person that was awake.
He finally settled.
That night I slept in bed with him. My sister also stayed over at the hospital.
Freddie had a little kick off because he needed a wee but couldn't go as he has a catheter. After about 10 minutes we settled him down.
He faffed alot. Picking and pulling but he did manage to have a more settled night.
Friday 16th June
After a more settled night I was hopeful we were finally moving forward.
He had started another course of antibiotics yesterday after my Mam queried why he wasn't on them.
I thought he looked better. His skin. His eyes Looked better.
The nurses had lowered his ketamine from 2 to 1.5 to see how he was with less pain relief.
I cleaned his eyes and managed to open one. I felt progress. I felt relief.
That didn't last long. Another consultant came in and said he would have to go to theatre to get an NG tube fit as he can't go much longer without food. They said they were going to examine his eyes in theatre. Look at his skin. That he might need to stay sedated if they needed to insert an oxygen tube.
I went numb. Why? Why? Why? I don't understand. Yesterday he was going to go to theatre, but he didn't. They put him through a world of pain for nothing. Now today they want to take him to theatre when really they should have done all this yesterday!
I got angry. I got upset. I lost my shit. The amount of torture he went through yesterday for nothing, because they wouldn't listen.
I then had the fun visit from the consultant that originally took him off oxygen apologising. Saying she may have woken him up too soon. No shit sherlock. He endured inhumane pain for Jack shit. All because she wanted to be the one to take the tube out. She changed the plan.
She said yesterday he could go 7 days on IV fluids, he didn't need an NG tube even though I asked. Now here we are. The next day. He needs one.
Of course he does. He is skin and bones! He hasn't eaten properly for nearly 3 weeks!
At 3.10pm he finally got the call to go to theatre. Me and my sister walked down with him. We were there when he went to sleep. Another traumatic event. He screamed. Then fell asleep and we had to leave him as he was wheeled off into what I can only describe as a clinical room. Bright white. With lots of different surgeons all dressed up.
4.20pm we got a call to say he was out of theatre. He now had his NG tube in with a brindle. So if he pulled on it. It would cause serious pain. The had cleaned his eyes. Checked his skin. Checked his willy.
He woke about 4.50pm and my god it was horrific. My child was possessed by the devil! He was there trying to pull out tubes. Pull out his food line. Which hurt.
His eyes were open. They were fucking open. I shit myself.
First time I saw his eyes in over 2 weeks and they were bright yellow from the eye drop dye. His brown eyes were green and his mouth was pouring of blood. He is so close to my face rocking everywhere. Possessed.
It took about 30 mins for me, my Mam and the nurses to calm him down. That was brutal. Where is my Freddie?
He settled until midnight and then had another demon like episode. Luckily my sister stayed over again. I'm not sure how I would have coped without her. She witnessed a lot of pain and shit with Freddie that she really didn't need to, but she did and I am forever grateful.
After that he slept well.
Saturday 17th June
8am we woke to Freddie having another kick off. Not as bad the others but still need more than 1 person. He settled quickly after 10 minutes.
I have longed for him to be more like my Freddie. Today he was more like my Freddie.
Though it broke my heart. Because he was crying. But it was heartache crying. He was sad. My Freddie. He knows. He is aware. He is in pain and he is sad. Asking Mammy to help him. I can't. I am trying. But I can't.
He then asked for his Buzz Lightyear sword and fell asleep.
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