Ok. I am having trouble keeping up with the ups and downs, but I am still looking forward to the day when Gideon's breathing tube is out for good. Or, more importantly, the day he can breathe well enough on his own to be able to come home. He has been extubated and re-intubated since I last posted. He has to have a breathing treatment of a medicine for his pulmonary hypertension and he HATES it. He really hated having the treatment when he was on the CPAP machine because it is uncomfortable by itself, but then they would have to take it off, put a nasal canula on him and then hold a mask over his face to deliver the medicine. The CPAP machine also blew so much air into to his nose that much of it pushed down into his stomach and caused it to hurt. They had to put another tube down his mouth so they could suck all the extra air out which was good because his tummy had become very hard and distended. It upset him so much having all this done that he began to scream and gulp air which made things worse, but it turns out that he also likes to hold his breath when he's mad. He turns red and then purple. His blood pressure and his heart rate shoot up far too high and it takes him almost two hours to recover and then it will be time for his next treatment as he has to have it every four hours. When he was calm and sleeping in between all this, his respiratory rate went down to the teens. It seemed to me as if he was so exhausted from being upset that he had no energy left, not even to breathe. Our physiology is such that if we don't breath enough, our CO2 rises and triggers our reflex to breathe and we automatically take a deep breath and start breathing. Gideon didn't seem to be having that reflex, plus when he is mad he arches his back and stiffens up, when they saw that and added the staring episodes he had before, the doctors began to worry about his little brain. They wondered if, when he was so sick and in shock he had not had enough oxygen to his brain, causing a bleed on his brain or some kind of damage in his head so they decided he needed an MRI. That and the fact that he was not breathing very adaquately, made them decide to reintubate about five o'clock this morning. I had decided to stay at the hospital with him all night, because I knew he would struggle and I wanted to be with him and see if I could calm him. He maintained 'ok', not good, but 'ok'. Because he was having an MRI today and they had to sedate him for that, they were afraid that it would compromise his breathing so he had to be re-intubated. The doctor said they will give us the official report from the MRI tomorrow. His nurse told me that the radiologist who did the MRI said he saw nothing abnormal. I am not worried that he has brain damage. I feel that he maintained well enough and that all these things are explainable. His staring episodes worried me a little at first, but as he is weened more off of the pain and sedation medication he is able to focus on me and his eyes look normal and fine until he has to have more medication. I think he becomes so upset and arches his back and cries because he is extremely uncomfortable. He has tubes and lines going into his body all over and they hurt. In his left arm he has an arterial line which I know hurts, he has a feeding tube going down his nose, a tube in his throat, another tube in his throat called an OG tube to let them suck air out of his stomach. He has a pic line in his right arm and it has to be stitched to his skin so it cannot move. He has an IV in his right foot and whenever his IV goes bad they have to poke him to get another one. He has little stickers with wires attached stuck to his tummy and chest to monitor temperature, heartrate and pulse and he can't be swaddled very well because of all this and add to all that, the fact that when he is uncomfortable and crying, no one can pick him up and comfort him. He's ticked. I think the reason he struggles to breath may be because he is worn out and he has had a tube and a machine breathing for him for almost a month. He needs time to exercise his muscles for breathing, just like he is having physical therapy to exercise his neck, arm and leg muscles because he has been in that bed so long. I am praying that we will be able to make wise decisions for his care because we don't know everything, but the Lord does know everything and I feel that Gideon needs less tests and medications and more time to heal.
The good news is that tomorrow, they are going to do another echocardiogram and if his pulmonary pressures are normal, they are going to take him off the medicine that has to be delivered through breathing treatments. That would be so wonderful for him. He is strong, the Lord is with us and we can get through it. Today, he opened his eyes and looked at me and there were tears in his eyes. Had he not been intubated, I think he still would not have made any noise, he was just crying silently, looking at me, and I wanted to cry too. I know Heavenly Father is with him and with me and though we have this hard thing to do, it will not last forever and Gideon will be out of pain and stronger physically. I know he'll be home soon. :)
Much love to all of you.