Joye's Update 4/26/08

Well, today was a pretty quiet day. Andrew still hasn't really slept well as he has a "roommate" and he is quite restless during the night. He (his roommate) constantly tries to get out of bed and he's on a ventilator so alarms go off all night long . . . so, me being me . . . I had them move that guy out of Andrew's room. It was just getting ridiculous, so I had to say something. Tonight will be Andrew's first night of peace (hopefully). A couple positive things: Andrew complained of his lungs feeling as though too much air was being pushed into them with the vent. This is a positive thing because it can mean that he is gaining more sensation in his lungs. He also complained of having a stomach ache. His stomach did contain some gas, but not near what he was having in the past couple of weeks, of which he could not feel at all. So, although these were uncomfortable things, they are positive improvements of feeling. Other than that, not much else is going on. I've been doing constant research and have narrowed 2 major rehabilitation hospitals that are known world-wide for their rehab methods. I have contacted both and will be setting up visits from each of them to come and assess Andrew. From what I've read, Andrew should qualify for each of those in-patient programs. One is the Craig Hospital in Denver, Colorado, and the other is the Shepherd Center in Atlanta, Georgia. People go to these places from all over the world. Anyone interested can look each up on the net; they both look to offer a lot for him. Other than that, we just keep praying and staying positive. We understand that it's going to take time and a lot of effort, but he will recover. Thank you all for your prayers; please continue . . . God can and will heal him. God Bless. Joye

Joye's Update 4/25/08

So sorry again for not being able to post yesterday; I was very busy with Andrew and yet another move. Andrew was released from the St. Joseph's ICU yesterday (Thursday) at 3pm. Me and my sister and brother-in-law spent most of the day yesterday looking at rehab hospitals; we didn't want to make the mistake again of trusting someone else's recommendation and send him to a place like the Select Speciality Hospital at St. Joseph's. And by the way, we are going to file a formal grievance against that place to hopefully keep others from going through what Andrew went through there. We decided that the Select Specialty Hospital at Good Samaritan was the best (not the same owner as the Select at St. Jo's). They are within the Good Samaritan Hospital, very clean, fully staffed with their own nurses (little to no contract nurses), and equipped to handle someone with spinal cord injuries. We were able to meet with the administrators there and we fully explained the experience Andrew had at the other Select. It's my understanding they held a meeting with their staff to prepare everyone for the fact that Andrew's confidence and level of security in caregivers as a whole is quite low due to his experience. He was transported by ambulance and I was able to ride with him so that he would not be without me there for a moment. When we arrived all of the administrators, charge nurse and his bed-side nurse were waiting for him. His room was equipped with everything he needed. They simply moved him from the ambulance gurney to the bed, put him on their vent and was hooked up to his fluids and medications. He was immediately assessed and made comfortable from the get go. The attending physician saw him soon after and kept all his medications and orders the same as he was receiving in the ICU. One of the problems at the other Select hospital was they took him off all the meds he had been receiving and lowered his pain medication as well. Although it's against the rules, they let me stay with him for his first night to help get his confidence back up. He had an okay night (not much sleep) and his confidence and security is much higher. He began his day today with a full assessment and immediately was put on C-Pap to begin the process of weaning him off the ventilator. He was also seen by Physical Therapy and Occupational Therapy to begin that regimen as well. He was pretty tired by mid afternoon and finally got a little sleep. The doctor has ordered and anti-anxiety drug to help him sleep better at nights. I can only be with him at night until 8pm, and tonight is my first without him. He was clean, comfortable, and ready for rest when I left him tonight. This place is such a better place for him; I feel so much better about his care now. Although it's very hard for me not to want to control every aspect of his recovery and comfort, I'm working hard at letting go a little and leaving it in God's hands (where it's been all along). I know that God is with him through this and He will take care of Andrew. I just keep praying that God will continue to lead me to make the best decisions for Andrew right now. I spoke with Andrew today about receiving visitors and although he wants to see everyone, he wants to become a little stronger before people start coming to see him. The Physical Therapist explained to us today how getting Andrew over tired can set him back so much. She said that over exerting him for an hour can set him back days. It's so tiring for him to just breath on C-Pap for an hour. We were also told today that the physical therapists will begin sitting him up (with assistance) the first of next week. This is really good for his lungs and muscles he will use for breathing . . . but, this will be very, very tiring for him as well. It's going to be a lot of hard work (the hardest he's ever done), but he says he's ready for the task; he's very determined, but again, we just have to make sure he doesn't over do it. We know there will be good days and bad days . . . the goal is to just keep moving forward without set backs. Well, I'll close for now . . . and will do my best to post daily again. Thank you all for your posts; I hope to be able to catch him up on them tomorrow. Good Night and God bless you all. Joye

Joye's Update 4/23/08

Hi all . . . I'm so sorry I did not update you in the last 2 days; it's been a rough couple of days, but we're doing okay now. On Monday afternoon, we learned Andrew had gotten well enough with his breathing and would be moved out of the CCU and moved into the rehab place. We were referred to Select Specialty Hospital at Good Samaritan Hospital; however, since his doctor is a Barrow's doctor, he thought it would be more convenient for him to be moved to the Select Specialty Hospital at St. Joseph's Hospital. He was moved out at 6pm and arrived at this new place at 6:30pm. The following 24 hours were the worst you can imagine. This place is a separate business within St. Joseph's and this place should be shut down. I could go on for hours and we have 2 pages of notes as to what was done wrong. Anyway . . . long story, short . . . we contacted his doctor, he got him out of there and put him into the ICU at St. Joseph's. How he managed that, I do not know . . . but doing this may have saved Andrew's life because in this place, they found that he has 2 blood clots. One that is not so serious in his arm and the other that is quite serious in his leg. He will be having yet another surgery tomorrow to have a filter put into his vessel through his groin area. This filter is opened up like an umbrella and will filter any clots that try to pass that area, which prevents them from traveling to the lungs, heart, and/or brain. His surgery is tomorrow (Thursday) morning at 7:30am. Please pray for him during this time. He is then scheduled to go to a different Select Specialty Hospital at Good Samaritan. This is a different owned business with different management, etc. My sister and brother-in-law and I visited every place that can take him (as he is on a vent and acute) and we liked this place the best. They are fully aware of our terrible experience with the one at St. Joseph's and they are accommodating our needs well so far. It was a bad deal getting him into that first place, but yet a blessing in disguise as this was how he got into St. Joseph's to find the blood clot. God put Andrew here for this reason, I'm sure of it. I will do my best to post again tomorrow, but may not be able to as Andrew will be moved again. Thank you all for your prayers. Good night and God Bless. Joye

Joye's Update 4/20/08

Andrew had a pretty good day today. He breathed on C-Pap for 4 hours, and did it pretty comfortably. He's also developed a decent cough reflex, which he has not had at all up to this point. It sort of frustrates him now, because he has a lot of secretions in his lungs, so he coughs quite often now; it's painful to cough with his fresh wound in his trachea. Getting that reflex is a good sign and an important ability as it will help to keep his lungs healthy. His feeling in his arms has now gotten down close to his wrists (on the outside). He still has no feeling in that area on the inside area of his arms, which is normal as it was explained to me that these nerve endings are kind of like branches on a tree that "report" to different areas. The neurosurgeon is encouraged by the feeling still coming to him, and he explained to me today that feeling comes first and then movement . . . so we are still on track. Andrew is so determined to get off this vent before leaving the CCU in order for him to get to go directly to spinal cord injury rehabilitation. He knows it's going to be hard work and he's ready for the task. He relayed to me today that he wishes he could start right now. We're stilling keeping our eyes up to God and praying all the time; we could not get through this without that faith. Tomorrow will be day #20 in this place . . . hard to believe, and we pray that not many follow. Our goal is to have him to rehab before Andrew's birthday (April 28th) . . . I believe he can do it. Hope all is well in Yuma, we miss everyone! Good Night and God Bless you all. Joye

Joye's Update 4/19/08

I saw a different Andrew for a period of time today. He's was sort of angry. Not a "I'm mad at the world" depressed anger, but a fierce sort of anger. He was very determined today to breath with C-Pap as long as he could. He did it for about 2.5 hours. He would have gone much longer, but he had some secretions that needed to be suctioned during and it sort of wore him out. He's resting now, but I believe they will put him on C-Papp again tonight for a little while. He really wants to try to get off the ventilator so that he can go directly to the rehab hospital for his spinal cord condition, rather than to the one that will have to rehab him off the vent first. I know he can do it, especially now that I see how determined he really is. We just need to keep praying . . . God will heal him. I will begin looking at rehab hospitals on Monday. If anyone of you have any experience with this sort of thing, I would be grateful to hear from you. I've been told the best spinal cord rehab facility in the Phoenix area is Good Samaritan. I was surprised, because I had always heard Barrows was the best (I think it is the best for surgery, etc.) Andrew's Doctor is a Barrows doc and even he believes Good Sam is the best place for his condition. But truly, if anyone out there has been through or had experience with someone who's been through a spinal cord injury . . . I would love to hear from you. I have no problem taking any kind of advice in order to get Andrew in the very best place he can be. Well, I think I'll quit for now . . . we're very tired today as there was a lot of activity in the CCU last night (new patients and trouble with other ones too). Thank you again for all your prayers and words of encouragement. God Bless. Joye

Joye's Update 4/18/08

Well today is our 2-year wedding anniversary. We never thought we'd be spending it here, but I think we both agree that as long as we're together, it's a good one. For the most part, the day was uneventful. Andrew spiked a fever again, but it is down for now. He had an x-ray on his chest early-early this morning and it was decided that there was too much fluid in the right side, so they scheduled for him to have it drained. He would have to go to have it scanned and then drained and then scanned again to make sure it was all gone. I prayed all morning that it was not pneumonia and that it would be okay. Pneumonia is a huge fear for vented patients. They worked all morning getting him ready to be transported for the procedure and he finally went down there at about 1:30pm. I was told that he'd be back in about 2 hours. I returned to the CCU to get something out of his room about an hour later and to my surprise he was already back. The nurse said the scan showed no build up of fluid (it was completely clear), so they didn't have to do anything at all, and he's been breathing pretty good ever since. Prayer works! He has been feeling some different feelings today too. He feels a very slight feeling of tingling sensation in his hands and feet. Tonight he is breathing on C-Pap, very comfortably with his new trach. His throat is still pretty raw from the tube, which it will probably be that way for a day or two more. Other than that, a pretty quiet day. He's still keeping the faith and praying a lot. He knows who his healer is. I was able to catch him up on the posts you've sent, and he really enjoys that. He rolls his eyes with every "Ugs" joke he hears. He knows he'll never live that one down. Thank you all for your words of encouragement, and most of all your prayers. Good Night and God Bless you all. Joye

Joye's Update 4/17/08

Praise the Lord . . . that's all I have to say. Andrew moved his arm twice today and squeezed a nurses hand during his surgery. During his surgery to receive the trach, Andrew picked his entire arm up and moved it open as though he was stretching. The people present in the O.R., who witnessed this strongly agree that it appeared to be a purposeful move, not a reflex. Also during the surgery, a nurse was holding his hand that had the IV in it to keep it stable and she said he squeezed her hand quite firmly. Then, when he was returned to his CCU room the nurses and respitory technicians saw him pick his arm up and lay it down on his upper thigh. When I walked in the room they were all smiles and some with tears of joy. God is touching Andrew with his healing hand, I just know it. Later in the day, he was able to receive his new feeding tube . . . and that went well too. He's sleeping comfortably; ocassionally he'll wake up and will feel how raw his throat is and I know from the look on his face that he's in a lot of pain. I guess he'll be in that pain for a couple of days though. From what I understand, we will only have a week or even less here and he will be going to rehab to get off the ventilator. I'm going to begin touring the rehab hospitals as soon as tomorrow to find him the best there is to offer. I've spoken to a lot of the neuro nurses here and have some good information to go on. These nurses have to come to love Andrew and want him to go to the best place.