Enjoy the good days

My sister mentioned this and boy was it right. Neal was getting frustrated this evening because he could not communicate with us. How often we take for granted the fact that we can speak, or write, breathe on our own or drink a glass of water. I bought some different things tonight in hopes that Neal can more easily communicate. It is so frustrating and sad that we cannot communicate. His go to move is a thumbs up which is wonderful. After everything he is going through we are still getting a thumbs up from him. How amazing is that! I could never be as strong as he is. I wish I did not have to find out how strong he really was this way. Hopefully in a short time this will all be behind us and our next hospital visit will be for a kidney.

Thank you to everyone that has been helping out, I could not do this without you.

I was lucky enough to hold Connor Scott McHenry tonight. He is adorable and such a good baby already. Here is a picture.

Thursday morning update

My mom and I saw Neal this morning and he is doing pretty good. He is trying to talk and we are trying to get him to write. The ventilator will stay in a little longer to get his tongue swelling down.

Leslie's water broke last night, so hopefully soon we will have a baby!

UPDATE: It's a boy! Conner Scott McHenry. More updates as they come.

They believe Neal had a seizure and are getting him on some medicine.

Two steps forward and one step back

The day started out pretty well. Neal was told to put two fingers up and he did. He was responding to us pretty well. We saw the doctors during rounds and all tests are coming back negative. We are still waiting on a couple of neurological tests, however they are not anticipating any new results. At 10am, they decided to turn the ventilator off, although not yet pull the tube out and see how he was. He did well, so at 1pm, the ventilator was removed. Mom, Dave, Ed and I were all there for the visiting hour and he seemed pretty good. He was nodding his head, looking around, trying to talk and responding to commands . He even gave a thumbs up when he heard the Indians won the series. It did appear that he was lacking a short term memory. He was trying to reach to his face, which was of concern since he has a feeding tube and a tube to drain his stomach. Eventually we restrained him again. By the time we left, his oxygen was a little lower, but still ok and his blood pressure was going up. He even nodded yes when I asked if he felt short of breathe. Around 3:30, we received a call that they were putting him back on the ventilator. It turns out he has too much dried blood and mucus in the back of his throat that he cannot cough up and they cannot suction out. They used a scope and were surprised by the amount of stuff back there. He was sedated again and given pain medicine. He is pretty exhausted and slept most of our visits. He opened his eyes a couple of times, but was not doing it on command. The sedation will take a while to wear off.

As I reread this, especially the first two sentences I ask myself what the heck happened. He was the best he has been in a year and now this. Is there some sort of Nintendo wii virus going around? I thought we had seen it all, but unfortunately we did not. When Neal wakes up and reads my notes, he will probably not even believe it. Ryan and Leslie have been going to the 9pm visiting hour as I need some rest and I appreciate that. I appreciate all of the kind notes and help I have received. I was just telling my mom how lucky myself and Neal are to have great friends and family. I know if I needed something I have a long list of people to call and I appreciate those that I have already called upon.

Baby Steps

Neal was a little more responsive today with his eyes. We did not have to irritate him nearly as much to get him to open his eyes. He is still not responding on command with his arms and legs or focusing with his eyes, but he is moving when irritated. He had an EEG today but we do not have the results. He also had dialysis. Hopefully we will get some more response tomorrow. I started back to work today. I may be asking some favors to make sure someone is with him during every visiting hour in order to stimulate him as much as possible. Thanks to all those that have been helping so far. For those that have visited, I am no longer speaking so loud. I will update tomorrow.

Monday Evening

Not much change. Neal is taking some extra breathes when stimulated, otherwise the ventilator is breathing for him. He did open his eyes a couple of times and appeared to be looking around and trying to focus. Dave really stimulated him the most. His name and voice made Neal open his eyes very quickly. He is currently on an anti-seizure medicine. Neal's tongue still appears a little swollen. We are requesting a neurology and ear, nose and throat consult. Hopefully that will happen tomorrow. We are receiving different stories on his tongue, therefore we want to go to the experts. The EEG has not been completed yet. The fever is hanging on a little. The team is taking good care of him and all of the doctors have been friendly. We still have a few nurse issues, but no where near what we had before. We confirmed that they did not find any broken bones.

Neal is going to get another tube put down his throat and into his small intestine as it appears the food that he is receiving in his stomach is just sitting there. He has something on his legs to hold his feet so they are at a 90 degree angle to his legs. There was no sign of a sinus infection. We will be headed back tomorrow at 9am to see him. It will be baby steps, therefore we do not expect any quick changes.

Finally Good News!

Meningitis has been ruled out. The infectious medicine doctor said the spinal tap fluid was crystal clear therefore there is no way. The caution tape came down! Neal was able to open his eyes for us. We had to continually tell him to do so, but eventually he did. There is still no diagnosis. They are going to decrease the breathes the ventilator is giving him and see how he responds. He is no longer on the sedative and the thought is the sedative may still be in his body since his kidney does not work. He is getting dialysis now, so we are hoping to see even more improvement by this afternoon. We will be anxiously waiting.

Rollercoaster Day

The day did not start out so well. The good news is Neal was given a blood pressure medicine and his blood pressure is now under control. Neal had a temperature earlier, but it was gone by the evening. They did blood cultures to determine if he has an infection. The bad news is he stopped responding when the nurses were pushing on his chest. The doctor believes something is still going on in his brain. Neal had an MRI this afternoon and the results were inconclusive, showing a sign of high blood pressure which we already knew. At our last visit, Neal had opened his eyes when the nurse irritated him, however there is still no focus. He is moving both sides of his body a little, but not much. He is still on the ventilator. The first concern is what is going on with his brain. Once that is figured out we will figure out the rest of the issues. We have all been through enough that we realize patience is important. Nothing happens overnight. A move of his hand or foot is a positive sign to us. We are trying to constantly talk to him and try to stimulate him. We even put the Tribe game on for him tonight.

The next assumption is meningitis, however she is not sure. I believe everyone is dumb founded and going down the list of possibilities. They have ordered an EEG, which I will have to look up. I will update tomorrow. We are currently doing our own investigative report on the internet.