Glen Update - Thursday, March 25

Well, friends, Glen appears to be much the same today. I can tell you that the spinal tap is clean - meaning he does not have meningitis and that has been ruled out as a cause of his hypoxia.

Douglas,Jr. David and I went to visit at the 1:00 hour today and got from the nurse that he was stable, but still sleeping. She said he will react to certain stimuli sometimes, but he still cannot follow simple directions or lift his limbs or follow with his eyes.

He is still running a low grade fever. He is due for another evaluation on Tuesday from the neurologists, so I don't think there is much more I can add at this point. I hate sounding like a broken record, so until there is a shift in his condition, I probably will not be updating his blog.

Keep Glen in your prayers - they are really needed.

Sincerely,
Darla

Tuesday, March 23

Met with one of the neurologists this morning. They need to rule out meningitis as a cause for Glen's sleep state before they will address Glen's prognosis. If it is meningitis, then maybe there's a chance for better recovery. The team was beginning the procedure at the end of visiting hours this morning and will probably not have a definitive answer for a couple of days.

Glen is still sleeping, although he was opening and closing his eyes toward the end of our visit. His bed is set to move him in various positions throughout the day to keep him from getting any rubs, and they are exercising his limbs 3 times during the day too keep them from stiffening. The pupil in his left eye seems a little larger today than it has been, and I have completely no idea if that is a good sign or not.

Yesterday when I was there and I touched his forehead and lifted his arms, his heart rate increased and for some reason his blood pressure started skyrocketing up in the 205 - 210 range. Wow - I could see it climb on the monitor. The nurse came in and told me that sometimes when he is overstimulated his pressure seems to start climbing. I just continued to talk to him instead of physically touching him and that seemed to help his vital signs. Today, it didn't make any difference in his pressure if you touched him - so Desiree and I I kept a hand on him to let him know we were there. I guess maybe he really was in a deep sleep and not in that dreamy state or whatever it is when he is able to partially open his eyes.

Still, friends, will keep you updated as we get info from the doctors. Thanks for all the prayers and emails.

Have a pleasant afternoon!

Sincerely,
Darla

Monday, March 22 - Afternoon

Not much news, but I did learn that the neurologists are planning to do a lumbar puncture on Glen to rule out completely meningitis as a cause of his current condition. They will need to stop the blood thinner he is on to prevent bloodclots before they can do this procedure however, so it may be at least a couple of days before it is done. He is not running a high fever, although he still has the low grade temp

Having said that - depending on what the spinal tap reveals - they will then evaluate Glen again in a week. Keep your positive thoughts and prayers coming!

Sincerely,
Darla Gips

Monday, March 22

I'm sad to report that Glen is still about the same this morning. Desiree and Kathryn visited this morning and although they tried, he just would not wake up while they were there. We are still waiting on the neurological report to find out exactly what we can expect in the coming days. Will keep you posted soon as we hear.

Sincerely,
Darla

Visiting Glen on Sunday, March 21

Glen's Aunt, Karine, will be visiting Glen during the 1:00 p.m. visiting hour on Sunday. We would ask that if you want to see Glen tomorrow you please either visit him during the 10:00 a.m. or 7:00 p.m. ICU visiting hours. If you happen to be with Glen when Karine arrives, we will be asking you to come back at a later time.

The ICU is beginning to turn away visitors who just appear outside of normal visiting hours. They have been MORE than lenient with family and friends in overlooking the 2-visitor limit and the amount of time we have been able to spend with Glen during his whole hospital stay so far. They know that positive family and friend support is essential for his recovery. We are so thankful for all of you!

As a favor, I am asking that if you are upset with what you feel is sub-par treatment of Glen, please do not bring those feelings and opinions to the hospital. Bad karma should stay at home. Please don't take your frustrations out on the staff by being overbearing, condescending or by ordering them around - they are there to help Glen - and we believe he has received very good care. Remember that when there are visitors outside of regular visiting hours we are interrupting the routine flow of care, whether we realize or not.

Now is not the time to be assigning blame to anyone or with anything that was done to Glen. None of us even know exactly what happened yet - so if you think there is something that should be addressed regarding his care right now please email me at dgips@gipsgaits.com or call me at 713-966-9497.

I'll send another status update as soon as we get one. I've been told that the neurologists will be making some kind of determination on Glen's condition on Monday, but I don't know what time, so soon as I hear, I will post.

Please forgive me if I have hurt anyone's feelings or hit a nerve. That is not my intention. It is with the utmost respect, love and care for Glen that I have addressed the above issues with you - his friends and family.

Sincerely,
Darla Gips

Friday, March 19, 2010 - Update PM

Doug and I visited with Glen this evening. He is still asleep, although we did see him opening and closing his eyes once in a while. His pupils are still small and he wasn't focusing on anything. He is yawning off and on and we thought that was a pretty good sign. The doctor called that more of a primitive reflex than an awareness. Another CT scan was done this evening and it appears that Glen has some swelling on his brain. The likely cause is oxygen deprivation when he stopped breathing on Tuesday afternoon. The swelling did not show up in the first CT scan, but the doctor suspected there might be some swelling in the brain as Glen just hasn't woken up, so he ordered the 2nd one today. We may not know for a couple more days what treatment the neurologists can offer to reduce the swelling or if he will wake up on his own. He needs to wake up soon!

It is not sounding really good at this point, but that doesn't mean we give up hope or that we quit visiting and talking and letting him know that we are here for him. We don't know if the neurologists will be able to do anything to help the swelling in the brain, or if when Glen does wake up whether he will have significant brain damage or just possibly an alteration of personality. We can prepare for the worst and be pleasantly surprised when he turns around and comes out of this and makes the best recovery possible.

Will publish a new update when we have something more to share. Thank all of you for your continued support. Darla

Thursday, March 18 Update

I did go to the hospital at 1:00 and talked to the nurses. Yes, Glen is still asleep. The results of the blood work and cultures for infection are not back yet, so they still don't know if he has some kind of super bug or not and we are going to talk with them hopefully this evening to see if anything has been found.

The neurologists have been by twice today already. They have not ordered another CT scan to see if there has been any change in Glen's brain yet, but they are considering doing an MRI to map it and take a look. He has reflex action in the upper portion of his body, but still none in his extremities. He has some kind of encephalopathy (which is a disorder of the brain), but they are still not finding an explanation for it yet. Thus the testing.

He's still receiving medication to keep his blood pressure where it should be. Everything has to be done in small increments for Glen. Reducing the medication too much, causes too big a drop at a time, so they are weaning him gradually from the higher dose.

I know we'd all like answers RIGHT NOW as to what happened to Glen and why - and why couldn't they have foreseen it. I wish it was that simple, don't you all? Just as it's been a setback for Glen, it's been a setback for all the doctors and for all his family and friends. Feels like we're starting over - but this time it's a fight against an unknown enemy.

Please keep praying and keep Glen in your thoughts during the days ahead. Once the neurologists finish with the testing they are doing, maybe we will have a few answers or at least a prognosis of what to expect these next few days. I look at his yawning, and coughing as good signs that he at least has reflexes that work - so maybe in the next several days he'll gradually wake up from that deep sleep he's having. Wish him good dreams

NOT GOOD NEWS - Please Read

For some unknown reason, last night Glen's blood pressure went very low as did his oxygen level. He had to be put back on the ventilator and a new central line inserted in order to bring his pressure back. However, they have been unable to wake Glen up. A CT scan was performed to see if he possibly had a stroke, but that has come back negative. He has brain activity, some reflexes. Doctors are baffled. This morning, as I type, they have placed a temporary pacemaker on his chest and have called in the team to troubleshoot the permanent pacemaker to see if it has stopped or malfunctioned. His blood pressure is stable at the moment as is his heart rate. Dr. Misselback says that Glen is the sicker now than he has been this last two months and he really needs our prayers. Please pass this note to any of your friends who know Glen - and please take a minute to say a prayer for Glen's recovery from this setback.

Sincerely,
Darla Gips

Making a Move

Saw Glen last night. Dr. Misselback walked in and told us that Glen is probably going to be moved to the Quentin Mease General Hospital("QM)next week sometime. Most probably Wednesday or Thursday.

He is back off of the ventilator and looking very good. He has the purple cap on his trach which is almost like having no trach at all. Dr. says that if he can maintain with the cap for several days, he may remove the whole trach. Keep your fingers crossed for him. Last weekend he was unable to still clear his secretions and his O2 level dropped and that is why they put him back on the respirator. Doing good this week so far.

Dr. M said that the infectious disease doctor still has to give Glen a clean bill of health before he can go over to QM and that there has been some concern that Glen may still be too ill to fully participate in his rehab. But Dr. M says he is not contagious, he is able to do rehab and although he'd like to keep Glen at Ben Taub so he can follow him personally, he really needs more rehab than the Ben Taub people can give him.

So - very good news guys - we are on the move. I will post again when I know when and what room Glen will be in at Quentin Mease. The address is 3601 North MacGregor Way. That is EAST of 288. If you go 288, you would go EAST on North MacGregor way a couple of miles I think. The visiting hours at 10 a.m. - 9 p.m. The phone number is (713) 873-3700. Remember - he's not there yet, but this is hopefully where he will be mid-week.

Update March 8, 2010

Sorry I haven't written in a while everybody. I hope the following catches you up through last night.

Glen had his feeding tube inserted in his stomach on Thursday. Additionally, he had been given steroids to reduce the swelling in his vocal chords and while under the throat doctor also injected his vocal chords with something to fix them so he could speak once he gets the trach out. He was in some pain on Thursday evening when I visited, I think mostly from the incision and from some gas pains that would come and go.

Friday, Desiree spent several hours with him trying to motivate him to move and to keep his spirits up. On Saturday, Doug took Karine up in the afternoon and they stayed and visited for over 2 hours. They communicated by writing notes back & forth and Glen seemed to enjoy her visit. Sunday, Douglas (little Doug) spent time with Glen and he really did seem uncomfortable. His bowels are still backed up and he's having some trouble getting his colon to function again.

On Monday evening when I visited, I put a call in to Dr. Misselback. Because when I went in to Glen's room, I noticed that he was again hooked up to the respirator. Dr. Misselback told me that when they put the feeding tube in on Thursday, they also replaced the original trach with a smaller one. He had been breathing on his own for about 2 weeks and were beginning to try to wean him away. But - as he still has been unable to clear his own airway and swallow, the smaller trach became clogged on Sunday evening and they were afraid his secretions had seeped back into his lungs which would possibly cause pneumonia. So, they inserted the ball trach back in and hooked him up to the respirator for some support until they can gradually get his lung strength up.

Dr. Misselback said that this was a little set back for him. He had hopes of Glen being ready for a rehab setting this week, but it was looking more like either next week or after. In the next couple of days, they will be weaning him from the respirator and giving him some support in that way probably only at night. He doesn't want him to become dependent on it, and we had a long talk about Glen's rehabilitation. After a couple of days, Dr. Misselback says there is absolutely no reason that Glen can't be up in a chair for most of the day.

And in fact, he needs to be up in a chair most of the day. That's the only way he is going to get any stronger. He told me he had conflicting reports of Glen refusing physical therapy. I told him that Glen told me he wanted to be up and walking - and that no one had even been in to see him. So - we have a conundrum. I told Dr. Misselback that if we needed to have somebody come up and stay during the day to make sure Glen accepted the therapy we could. He didn't seem to think that was necesssary, but he did tell me that now was the time to turn into a "bitch" about Glen's care. To be more of an advocate and to make sure the nursing staff was paying attention to his needs of physical therapy.

He said that Glen is more alert than most of the patients in this part of the ICU, and they are more hesitant to get him up and moving about. Dr. Misselback said that Glen HAS to sit up - he is a totally deconditioned man - and that it's up to him to make his recovery happen. He said that it is just as well this little setback happened here at the hospital instead of at a rehab facility as Glen would probably have had to come back and be admitted to the hospital anyway. That part aside, however, I'd like to encourage each of you to help keep Glen motivated to push himself.

I told him he had to be up and in a chair. His butt has been hurting him and he says it's because of Hemorrhoids. I told him he didn't have hemorrhoids because I looked at his butt when the nurse was cleaning him. When he insisted he did, we looked again. I told him that if he had them - they must be up inside because he didn't have anything hanging out his butt. Sorry if this is gross - but this getting better business isn't always pretty. So - I got my first clue that maybe Glen had declined to be put in a chair. I told him that the nurses could get him a donut to sit on and that it wasn't an option not to sit in the chair.

Dr. Misselback said the ONLY way Glen is going to get better is to get himself up in a chair and work on getting his strength back. I also fussed at him - because he saw I was really serious about him getting out of the hospital - about not using the exercise equipment we have brought up to him. And any of you guys visiting him - feel free to ask him about the tools and get them and help him and make him do some reps of exercises while you are there. I bought a Pilates Bar with elastic bands that have openings where he can put his feet in them and then bring the bar up against his chest to strengthen his upper body. He can also use it to help strengthen his leg muscles by doing leg lifts and using the bar and bands to help lift. There are several tennis balls in the room. He can be squeezing them while he talks to you - you can squeeze one, too. He told me he needed a bar hanging from the ceiling so he could practice bringing it down to his chest - and I just got out the bar and put it on him and got him going on it.

Seriously, guys - if he's not gonna on his own motivate himself to continually build himself up, then I guess it's going to be up to us to make sure he at least does it when we are there with him. We'll have to address the issue of him taking responsibility for himself when we can get our hands around his neck and shake some sense into him. (Just kidding).

Dr. Misselback also told me he had talked to Glen's social worker about trying to get him into TIRR. She seemed to think that because he has the gold card, his options for TIRR may be limited. Do any of you have connections, or know of who I might contact to see if we can find out if there is any way we could get him in there? If so, please contact me. dgips@gipsgaits.com or 713-966-9497 . I'm calling his social worker today and I'm also going to call TIRR to find out what they require. I believe that in the next week or so, Glen could be strong enough to go there and Dr. M. said it would be a great place for him because he's fully convinced Glen can make a complete recovery and needs PT at least 3 times a day. I will also talk to Meredith (Glen's neighbor across the street). She works at Texas Children's Hospital as a social worker and maybe she can give me some pointers.

Glen is concerned about whether or not he will have a job when he gets out of the hospital. He asked last night if he could come home and do outpatient treatment. I told him that was an excellent idea - all he had to do was be able to clear his airway himself and at least be able to walk on a walker. He then told me there was a trainer on his street who could help him - and I again told him - excellent idea - just get himself strong enough to be home and it would happen. He's really wanting to get out of the hospital - but I'm wondering if he's realizing how easy it is to stay where he is? That's probably a wrong assumption - but he's sure getting lots of attention that he hadn't been getting. I told Glen it did no good right now to worry about his job. Hopefully they will still have a place for him and that every time we talk with them they say to let him know they miss him and want him to come back. He seemed to be OK with putting that thought on the back burner - after all, there wasn't any way he could work there at this particular moment in time.

well, guys - this is all I know and I hope I've given you some kind of insight as to where Glen is in his recovery. Thanks to all of you who've gone to visit with him. They are very laid back on the visiting hours for Glen. I think it helps the nurses when there are people visiting him because they don't have to check on him as much. If you do go up there and he isn't up in a chair this next make sure you insist he get in one. The nurses should help him. Let me know if you have ANY problem up there and we'll get it taken care of.

Sincerely -
Darla

Update - Tuesday, March 2, 2010

I went to see Glen last night since I took a little hiatus over the weekend. I went after work so that I could spend more than 30 minutes with him on my lunch hour. He was laying on his side for a change (not on his back), but not because he really wanted to - he has a little pressure sore on his back end from laying in the bed for so long.

He looked really good, though. He said he was cold, but his face was warm and so were his hands. The bed has an air pillow, so I think it must be a little cooler than just being on a mattress. You know how a water bed without a heater is, right? No matter how many blankets you put between the mattress and your skin, you eventually freeze to death without that heater! Been there - done that.

Yesterday Glen was up out of the bed two times walking. They are even getting him up in the nifty huge wheelchair he has in his room. He was telling me they have been giving him steroids for his vocal chords and that the left side is frozen up. As we were talking, Dr. Misselback came in and visited with us at length.

He gave Glen a kind of plan of action. He said that they still do not know why his vocal chords are not working correctly. He suspects that the prolonged use of the breathing tube (over 2 weeks) may have had something to do with it. He is waiting on the speech therapist and throat specialist to consult with him, but the main block to quicker recovery for Glen is that he still cannot swallow. He has to be able to swallow, not to eat necessarily for the moment, but to be able to clear his own airway. He said that we all constantly are clearing out mucous from our lungs during the day whether we realize it or not. And right now, Glen is unable to cough up or even swallow the secretions if he were to be able to get them up. Until he can do that, Glen will have to stay in the hospital. If he can't swallow properly, then what will happen is that he will possibly be pulling the mucous into his lungs, which will cause infection, that would lead to pneumonia and then he'd be really sick again.

Dr. Misselback said that even the small feeding tube Glen has in his nose could be irritating his vocal chords right now. And Glen is MORE than ready to have that thing out. He told me yesterday that he wanted a Dr. Pepper and some FOOD. The doctor told Glen that he believes that the most prudent thing to do in the next couple of days is to put a feeding tube into his stomach and remove the one from his nose. That will give Glen more freedom to move around and psychologically give him a lift. After all - who wants to go around with a tube dangling from your nose?

He started Glen on Steroids over the weekend to help with the swelling of the vocal chords above the trach. And he also stopped the coumadin (I probably spelled this wrong) - the stuff that things Glen's blood - to keep him from having blood clots since he has a mechanical valve. He has stopped the coumadin so that they can put the stomach tube in. It will be a little local procedure (Dr. Misselback said like a Dental procedure). He won't be completely out, but he won't remember either. So - in the next several days after the coumadin gets out of his system, we can expect to see the feeding tube in a different place.

IF - and only IF Glen can manage to swallow on his own and clear his own secretions in the next couple of days, then they will probably not do that procedure. If he can swallow, clear his chest and eat on his own, then there is no reason to do it. Glen's OK with it I think though cause he really wants the nose thing out. The feeding tube though the stomach will make it easier for him to move around and to be fed. He can get boluses every so many hours instead of a continual drip. One of the main reasons for doing this procedure is that IF Glen can qualify to get into TIRR for rehabilitation, they will not take a patient who is on a nose drip. But they will take someone who has the gastric feeding tube. So now that I've talked you all into the feeding tube - he's what else Dr. Misselback said:

He expects for Glen to be in ICU for probably at least 7 - 10 more days until they can get the vocal chord/swallowing issue somewhat resolved. Once that is resolved, then he is ready for full rehab - and could go to TIRR. Or, if he can't go there, then they will be able to move him to a larger, more rehab friendly room where he can work hard on his own with the help of the Ben Taub therapists. Dr. Misselback said he could expect to spend probably another month in the hospital or rehab.

Glen asked why they had done the heart catherization before he had his surgery and was wondering if that could have caused some of the complications. Dr. Misselback said that in people over 45, they always did one to see if there were any blocked or clogged arteries so that those could be repaired at the same time the valve was replaced. In Glen's case, his arteries were clean as a whistle. He could eat every day at McDonald's and not worry. He said that Glen's aortic valve was a congenital deformity. Instead of having 3 little flaps on the valve, he was born with only 2. And what happened was that the 2 little flaps had developed calcium deposits on them causing the valve to not work properly. He said that people with normal valves usually never develop calcium build up until their 70's, 80's or 90's.

And as to why Glen had all these complications - Dr. Misselback said they just do not know. The surgery was textbook. Everything about what happened to Glen is a mystery. He may not have suggested that Glen have the surgery if he had known then what he knows now, but one thing is for certain. His heart is fine now and once he gets over this hurdle, he'll be like new. I don't think any of us will be able to keep up with him.

I have to say I'm pretty proud of him so far. He has been able to keep his spirits up and (knock on wood) has been getting stronger every day.

If I haven't covered some of the stuff the doctor talked to us about, it's not on purpose, guys. If I think of anything else, I'll blog about it a little later.

If left after about and hour and a half when a friend of his from school dropped by to visit. Dr. Misselback said Glen has more different friends visit him than he's ever see a person have. He knows many of you by name!. Isn't that amazing?

Sincerely,
Darla