Tuesday, June 30, 2009

The Beginning of a New Journey

First off, I would like to thank all of you for your support throughout the past four months. On Sunday, Dad seemed to be doing better. His oxygen requirements dropped to 85 percent on the ventilator. But when Mom and I went back to Laurie's house, Mom got a call from Dad's nurse saying that he had to go back to 100 percent. They discovered that on top of his back infection, open back wound, and damaged new lungs, his kidney's were failing again and they discovered a fungal infection in his bladder. His skin had begun to break out in a rash and his body looked like it had really taken a toll. Sunday night Mom was sitting at his bedside and asked him if there was only a way he could show her if he wanted to keep going. Shortly after she asked, his respiratory rate plummeted down to 0. At this, the nurse came in and said sometimes the leads come off, so she adjusted it and left the room again, but it still showed zero. Mom asked me what I thought of that and I told her I thought he held his breath and he was telling us he wanted us to let him go. That night, Mom and I discussed our options and yesterday we talked to Dr. Klesney-Tait. She explained that she couldn't make the choice either because she loved him too. However, she explained that if there were a line of 25 doctors, all of them but her would label Dad as hopeless. I still feel like she only said that because she cared so much about him...she didn't want to give up. Last night we made the decision to take him off the ventilator, ending his suffering. We waited for Dad's sister Suzie and her husband Clyde, and my grandma Jeanette. They got at the hospital around 9:30 pm and we got to spend our time with him. It's amazing how much he proved to us how much of a fighter he was. As we were waiting for Dr. Tait to take him off, Mom told him it was okay to go now...that it was okay to finally give up. At this, his oxygen saturations, even at 100 percent ventilator support, began to steadily drop over the next half hour. He went from 92% saturation all the way down to 70%. It was his way of telling us he was finally giving up too. Dr. Klesney-Tait came in at about 10:40 pm and, in the presence of myself, Mom, Heidi, Jeanette, Suzie, Clyde, and Laurie, we watched as she freed Dad of all his cords and medications. Dad was heavily sedated and didn't feel any pain. He passed away after only about 5 minutes of no support. My father, Michael Louis Miller died at the age of 59 at 10:49 pm on Monday, June 29th, 2009. I am honored to have had him as my father and I hope you feel honored to have been his friends and family. The time and location for Dad's funeral is yet to be decided. His wishes included cremation, so we want to take time to discuss and conduct his funeral in a way that he would have wanted. I will let you all know when we set a date and a location both through this blog and through Dad's email address. We would appreciate any stories you would like to share about him. Please send these either to my email at jmiller7@iastate.edu or Dad's email clubdr@crmu.net .

Friday, June 26, 2009

Friday, June 26th

Mom talked to Dr. Klesney-Tait today (Dad's head doctor). She said that they're going to try to put a scope in to see where the blood clots are all at. Dad's blood pressure was doing good earlier today, but has since lowered some. Dr. Tait said that if Dad's heart were to go out on him, she didn't recommend resuscitation because the chest compressions would be too hard on his bones. At this time though, his heart looks okay, but you never know. He's currently at 100% ventilator support and his O2 saturations are in the low 90's. As Mom described to me, "He's the sickest I think he's ever been." Dr. Tait said she's still holding hope for him and that she's seen patients come out of this, but he is extremely sick right now. They haven't found any infection and he only had a little bit of a temperature today. Again, they're going to try to lay him on his stomach in order to clear up some of the "junk" in his lungs. As much as I hate to use the word "grim" I think it's appropriate for his condition right now. Please, we can use all of your prayers at this time...that's all we can do is hope and pray.

Tuesday, June 23rd - Thursday, June 26th

It's really late, and I work in the morning, but I feel like I need to update you all because I don't want to give false hope with the last post...as bad as that sounds. Just two days removed from the whole 65% ventilator dependency, Dad was back on 95% today (Thursday). His kidneys seem to be pretty much tanking (creatnine levels in the 3's) again. This was really tough on all of us today...Mom left work and headed back to Iowa City this afternoon. There's also blood in his urine, which might be caused by a blood clot in his bladder. That might be part of the reason for his rise in ventilator support as well...still no fever's as far as I know. Dad's head doctor still isn't giving up hope on him, but she's starting to get worried about the lungs and whether they've been permenantly damaged. For the first time since they said he wasn't going to make it, I can honestly say I'm scared. Not worried. Scared. I'm really starting to wonder if he's going to make it out of this. We need some progress. Soon. I'll probably be joining Mom in Iowa City soon if things stay the way they are. I'll keep you posted.

Tuesday, June 23, 2009

A Letter of Thanks

Our family would like to express our deep and sincere appreciation for all of the support, prayers, love, and gifts that all of you have given us. We are so touched by everyone's care and thoughtfulness. Please continue to keep Mike in your thoughts and prayers.

Karen Miller

Monday, June 22, 2009

Wednesday-Monday, June 17th-22nd

Dad got moved back down to the ICU on Friday because they wanted to start him on a new pain/sedative called Propofol. Giving him this drug increases his risk of low blood pressure and the ICU is constantly monitoring that, unlike the 7th floor. When I left Iowa City on Thursday, Dad's oxygen requirements were at 90%. When Mom called in last night he was down to 65%. It's crazy to think that he's only breathing 35% on his own, yet that seems like such a huge leap at this point and time. As far as his kidneys are concerned, the creatinine levels got as low as 1.3, which is nearly back to normal. Yesterday they were at 1.5...so up a little, but that can be due to the newly administered Propofol. Dad no longer gets agitated when he opens his eyes, and hasn't broken a fever in the past 2 days, so those are more steps in the right direction. In speaking with his floor doctor on the 7th floor on Thursday, I asked him what order we should be seeing things getting better, to which he replied, "I don't mean to sound dramatic, but our first step is to keep him alive." That was tough to stomach, but over the past few days he does seem to be improving more drastically then I've seen in the past month. With Father's Day being yesterday, it really made me sit back and fixate on this point...how many people...right now, are taking advantage of the fact that they have a healthy father to spend the day with? If Dad pulls through, I know I'll take full advantage of every minute I spend with him.

Tuesday, June 16, 2009

Sunday, June 14th - Tuesday, June 16th

Over these few days, things have pretty much stayed steady. Dad's still under heavy sedation, is between 70 and 100% dependent on the ventilator, and still has a fever off and on. The only significant change has been his Creatinine level has gone from 3.3 to 1.9. Once again, normal levels are around 1.0 but this is the lowest those have been in recent memory. Creatinine is directly related to kidney function. It's kind of hard for me to explain exactly, but here's a link if you'd like to know more...http://www.medicinenet.com/creatinine_blood_test/article.htm
I'll keep you updated if anything new happens.

Saturday, June 13, 2009

Tuesday, June 9th - Saturday, June 13th

I haven't been posting on here much recently because, honestly, not much has gone on. Dad is still occasionally running a fever that hovers around the 100* mark, but a dose of Tylenol seems to clear that up. Dad was on 5 mg of Ativan today, which is a rather large dosage (in fact, it's the most they are allowed to give him.) This is to pretty much sedate him, although it's not quite doing the job. This is probably due to his body building a tolerance to the drug. Because of this, the medical staff is thinking about switching him off the Ativan and Fentanyl (pain medication) and putting him on another drug that would work both as a sedative and a pain reliever. Again, today Dad was at 100% dependent on the ventilator, but his O2 stats were good at that. His white count was down around the 16,000 mark...I believe 10,000 is deemed normal...but he's been as high as 26,000 so that's a positive sign. One more key thing that the nurse said today was that when she last saw him this past week, they were able to see the hardware in Dad's back through the incision. Now today when neurosurgery came in, they were unable to see the hardware because some tissue had grown over it. This goes to prove that his back is making an attempt to heal now with the aid of the "WoundVac." Once they feel it's ready, they will sew his incision shut and allow the wound to finally close shut and heal completely. The talks about having to remove the hardware were in the past and no longer seem to be a plausible option.

Monday, June 8, 2009

Friday-Monday, June 5th-8th

So I haven't been back in Iowa City since Thursday so I'm a little rusty on the update this time. So far, to me, everything's staying about the same. Again, Dad still does not have a temperature which is definitely a positive sign. Mom said that today he was "snowed in" or pretty heavily sedated. There was some blood in Dad's urine today so they are wondering if he might have a urinary tract infection, or if that was due to a new catheter insertion. Regardless, he is still hovering around on his ventilator pressure support...somewhere between 55 and 80 percent dependency. Other than that, I don't think there is much more to update you on...things are kind of at a stand-still at this point. It seems to me like this is a down time to let his back heal up a bit before they start doing much of anything else.

Friday, June 5, 2009

Posting a Comment and Becoming a Follower

A few of you have e-mailed me saying that you are less than techno-savvy. If you would like to post a comment on this blog, click on the gray text beneath the post that identifies the number of comments. Then scroll to the bottom past any comments. The white box that says "post a comment" is where you type your message. It helps if you leave your name within the message so we know who left it. To publish your comment, click on "post comment" and you will be finished! 

Also, if you currently have a Google, AIM, or Yahoo account you can become a follower of the blog. Just click on the "follow" button on the right side of the page in the green box. Then follow instructions from there. 

Let me know if you are still struggling. I can be reached at heidi.miller.design@gmail.com. 


Wednesday & Thursday, June 3rd-4th

Mom and I haven't been able to stay in the room with Dad very much over these past two days because every time he sees us, he makes attempts to sit up out of bed and pull out his ventilator. I think all he wants to do right now is go home at any cost. However, he isn't very mentally competent at this time so I'm sure if he knew what was going on he would know to calm down and just rest. On Thursday, Mom and I went in to see him and when Mom grabbed his hand he woke up and immediately his O2 stats plummeted, his respiratory rate nearly doubled, and he tried to pull his ventilator out. At this point we have decided that by him seeing us, it's just making him want to leave more. From a medical standpoint, they upped his Ativan dosage to 2 mg which has pretty much sedated him. When Dad is sleeping his oxygen saturations are much better and he requires a lot less attention. At this point, the medical staff thinks this is the best thing for his recovery. Over the past two days he has lost the temperature, which is a huge positive at this point. They've also been talking about placing some kind of tube in his back to clean out the infection and then stitching his incision back up...but neurosurgery is going to wait a few more days before they do anything. So we're pretty much in a stage right now of letting him rest and hoping that this will further improve Dad's condition. I'll keep you posted.

Tuesday, June 2, 2009

Sunday, Monday and Tuesday, May 31 - June 2nd

The last three days have been pretty non-eventful. One of the possibilities in the last post was the threat of pneumonia. Although not completely clear yet, doctors do believe that he has it. The hardware placed in Dad's back has come up positive for an infection, so the neurosurgery team is going to wait a few days to see if his spine has fused yet. If this is the case, which is unlikely, they would be able to take him in for surgery and have the rods and screws removed from his back. Again though, it is not only unlikely that the bone has fused, but it's also unlikely that Dad would be able to go through such a surgery in his current condition. The pressure support on his ventilator has been ranging between 60% and 100%. Which means he is still very dependent on the machine to do the breathing for him. Yesterday Dad was very alert and very agitated. Whenever Mom and I were in the room he would constantly be needing or wanting something from us. Today was about the same. He was back at 100% on the vent and he was constantly moving around, telling us he wanted to get up and walk out of here. It was hard for us to explain to him that he wasn't healthy enough to do that yet. I think he realized that before we even told him. They have decided to keep him up on 7th floor instead of trying to put him back in the MICU since Dad likes it better up there. The staff decided to go ahead and put a suction machine on his back so that they don't have to continuously roll him around and change the gauze out. When we called in tonight, his nurse told us that Dr. Klesney-Tait decided to give him a high enough dose of Ativan to make him sleep. Her thought process is that Dad has too many things wrong with him right now for him to be awake and struggle through the pain. After being home and talking to a lot of you already, I can tell that some of you are still a little confused about what exactly is wrong with Dad. So I will use this time to "debrief" you on all of his current problems:

Lungs: looked at the CT Scan today and his lungs have a moderate amount of inflamation and mucus build-up. This is caused probably by both his infection and the pneumonia. This is the reason he is on a ventilator through the tracheostomy.

Kidneys: Lately his kidney functions have been improving, although they are not back to normal yet. His creatine levels are at about 2.3...normal functioning is right at 1.0. He was at one time on dialysis, but he is no longer requiring that amount of assistance.

Back/Spine: Dad had to have emergency back surgery after he suffered a compression fracture of the Thoractic 11 vertebra. The fracture occured due to a combination of Prednisone use over the last 9 years, his recently diagnosed Ureaplasma, and a couple of falls while walking. Ureaplasma is a rare bone infection that can be found in transplant patients. Iowa City has had 8 cases in 25 years. Dad is currently on Zithromiacin and will have to be for the rest of his life as a preventative measure. His surgery was risky and involved the placement of two steel rods and screws to help fuse the vertebrae back together. His incision is still open because of the reoccurence of puss build-up. So Dad literally has an open wound in his back at this time that requires constant daily attention.

Shoulders: A few years ago, Dad suffered a torn rotator cuff in his right shoulder. They were never able to perform surgery on this due to his poor lung condition. Since he has been in the hospital, they also discovered some bone deterioration in his left shoulder. So at this time both of his shoulders are extremely weak and painful.

Stomach: While in the hospital, Dad complained of stomach discomfort. Following this, the doctors found that he had two ulcers. Although this is painful for him, they should heal on their own.

Cardiovascular System: Almost two months ago, Dad had some complications with his medications. When he was admitted into the MICU at that point, they discovered he had suffered from what appeared to be three small strokes. They in no way should have any affect on his life. This was later explained to us as being caused by a minor flaw in the sewing of the new lungs into the heart valves.

Infections: Dad has suffered from a variety of infections already. As I explained above, he still has the Ureaplasma infection in his back, but it is being treated with a drug called Zithromiacin. However, Dad is still breaking temperatures so there is still an infection in him that they haven't found yet. They are testing his blood every day in an attempt to pinpoint where it is coming from.

Overall: For those of you who don't know what's still keeping Dad from going home, this is my best explanation: The hardware (rods and screws) in his back are carrying an infection. They have to wait until his bone has fused before they can remove that and sew his incision back up. Dad's lungs are suffering from inflamation and fluid build-up due to the unknown infection, and pneumonia. These two things are the most important factors holding him back. His healing process will have to come one step at a time. First, they have to pinpoint the infection and eliminate all fevers. This will probably coiincide with the elimination of the pneumonia. Once they are able to do this, he will have to lose the infection in his back and go through surgery to have the hardware removed from his back. If he is able to make it through all of this, he will have to rehab and build strength back in his legs and basically learn to walk again. It's a long, scary road ahead of us and all we can hope is that we have as few stumbles along the way as possible. Thanks for your continued support and comments.