Update on Dad-September 4, 2008

Tonight my update is not as positive as I would like. Dad was transferred to a new facility last night at the recommendation of his Dr. at Hoag. This was to be an "in-between" type facility, a small hospital type facility that has more advanced nursing care than Victoria.

David was not thrilled with the staff/care he witnessed last night when he was with Dad and he got checked in. But as it was late in the evening, he figured it was just the time of day he was checked in, etc. I went to see Dad this afternoon around 3PM, and was very upset at his condition. He was very disoriented, having breathing difficulties, and suffering from a horrible, itchy rash. The Dr. had not seen or assessed him since he had been checked in there...almost 24 hours before. Without going into all of the details, it seemed to me that he had kind of fallen through the cracks, and had really received little or no medical care since his arrival. I rattled the cage a little while I was there and got some treatment and attention going. I called David, who had all of the contact info, and he made the necessary calls to get the Dr. in there immediately and some treatment going on.

Dad has now been moved into the "ICU" part of this new facility, where the patients have 1 nurse for every 2 patients. We are hoping that his care the last 24 hours was a one time thing, and that things will be better from now on since we have called attention to it. We will be closely monitoring his care, and making sure he is getting everything he needs.

I know both David and I are both physically and emotionally drained/exhausted. We are so frustrated to see Dad, who has fought so hard to get where he is over the last two weeks, slip backward due to what seems like poor care over the last 24 hour period. His condition is so fragile, and he has been so sick and so weak that it does not take much to set him back.

David is going in a much deserved and long awaited cruise with his family and in laws over the weekend, leaving tomorrow and returning Monday. In the meantime, Rob and I will be making sure Dad has the care he needs at this new facility, or making sure he is moved to somewhere he will receive the best.

Thank you all for your prayers and support. Please keep Dad in your prayers.

Dad is out of Hoag--being transferred to another facility!

Another update from David:

I spoke with a Dr. Katz at Hoag today who advised that they felt that Dad was ready to be transferred to an alternate facility for his ongoing care. They are recommending a facility called “Kindred Healthcare Hospital” and he described it as an acute care skilled nursing facility. Essentially, the level of care offered is less intensive than the ICU units at Hoag but, offers a pulmonary specific care capability that demands more skilled training than the staff at Victoria can offer. He projected that it would be very likely that Dad will be in this facility for a couple of weeks before he is ready to return to Victoria.

This was from last night and indeed Dad did get moved to this facility late last night. I did not see him, as Rob is out of town and by the time he got there it was too late for me to drag the girls out (it's a school night). I did get a voicemail from David last night around 10PM that he was there and stituated, so hopefully he will continue his recovery and will be back at Victoria before long.

Dad Update from David

This is an email update from David:

Dad seemed pretty well when we went to visit him last night. He has settled into the sub-ICU and is comfortable. As has been the case in the past, he is entering a stage where he is more wakeful and generally more alert. His overall lucidity tends to fluctuate – in particular, he almost always has questions for me about Mom when I go to see him. Initially, I would have to remind him that Mom was no longer with us and that didn’t always seem to register. Now, a gentle reminder is generally all that is necessary to kind of bring him back to the present.



On his last stay at Hoag (in Dec.) this was the stage in his recovery that he had some really WEIRD hallucinations. He is in a condition where he drifts in and out of sleep very frequently and it seems that whatever is on TV tends to mix with his own dream patterns and distant memories to create a very unusual tapestry of thought… I will be hoping that we can avoid much of that this time around. When he has somebody to visit with he tends to slowly hone in on the present and can once again carry a reasonable conversation.



Otherwise, he continues on the antibiotics and the chest tube continues to drain a significant amount of fluid from his chest cavity. He told me that his breathing is similar to how one’s head feels when they have a cold – it will alternate between very stuffy and mostly clear. The nurse confirmed that this should be expected to continue for a bit longer. All in all, he is continuing to make positive progress but the progress is, and will probably continue to be, tediously slow.

Update on Dad-September 3, 2008

Well, sorry for no update yesterday...honestly there is not much to report. We are just feeling SO BLESSED that Dad is doing so much better, and is out of the CVICU. Now it is really just a matter of his regaining his strength and remaining on the antibiotics for a little while longer to clear up the pneumonia.

If anyone is so inclined, Dad LOVES receiving mail. If you send it to me I will make sure and take it to him and help him enjoy it. He especially loves pictures, so if any of you "long lost" cousins, friends, relatives would like to send him pictures of yourself, your dog, your house...you get the idea...he would LOVE that. Please email me at:

stefaniewarren@yahoo.com

and I will give you my home address to send it to. He has little to do except for watching TV, and it is difficult for him to even hold a book to read it, he has very little to look forward to. But he does love mail, and when he gets any he will treasure it for days, stopping anyone who will give him a minute to share it. Even if you want to send him an email, just send it to my email address above and I will print it out and bring it to him. He also loves receiving a good joke...and then repeating it to all that will listen :-) So dust off your favorite knock knock's...and send them his way. He will appreciate it more than you can imagine.

Well, that's all for now. I wish I had more to report, but hopefully will be sharing the good news that he is able to return to Victoria soon. Today marks 2 weeks he has been in the hospital. Ugh...as great as Hoag hospital is, I would be happy if I never had to see it again.

Have a great Wednesday!

I love the smell of crayons in the morning!

With everything going on with Dad, and Henny, and just general life, it is easy to adopt an overall worried/stressed attitude, a kind of "down-in-the-dumps" mentality. It's a rut. But I do know that it is a choice, and you can change your mood if you just try hard enough. But believe it or not, I have found out a way to change your mood almost instantly. And it only takes a minute.

Or an hour.

 

I decided at the beginning of this year to do something about an issue that has been really bugging me for the last 2 years, since I have not been working for myself and making my own schedule. That was to be able to spend more time in my children's classes...field trips, etc. Not just hear at the end of the day what they were doing:

"How was your day at school today honey?"

"Fine."

"What did you do?"

and I would get one of two choices...

"Play" or "Same stuff"

Fabulous. Very descriptive.

So I decided to volunteer in the girls classes in the mornings before I have to be at work. And boy am I glad I did!

 

Maybe it is the genes of the Kindergarten teacher my Mom was, but did I ever have a good time! The colorful room, the short tables, the beautiful faces of kids so proud of their new uniforms and school supplies...no one more so than my own Sugar Plum. The art supplies, the chubby little fingers trying to clumsily cut with blue and purple scissors, the fat crayons, I just soaked it all in. The kids were hilarious, even when they were acting up (one little girl had her head stuck in her cubby crying for her Mom...first week blues but it was really funny) but most were just really excited to be there, "big kids" and doing school work. Getting to do it with Andrea was definitely an added bonus.

 

One of the activities they were working on was making a "mini-me" a paper doll that was supposed to look like the child. This one caught my eye...hey, some were a little more anatomically correct than others!

They were also "cooking" making Stop Lights, which I found out were two graham crackers with frosting and red, green and yellow M&M's. Yummy.

 

Near the end of the hour, Mrs. Kahler (who reminds me SO MUCH of Mom) put her arm around me, squeezed my shoulders and said, "Mrs. Warren, I'm just so glad you were able to do this!"

Me too, Mrs. Kahler...me too. You have NO IDEA how much.

Update on Dad-September 1

Dad was finally moved from the CVICU today to a "regular" hospital room, or a step-down unit as the nurse described it. Now that the tube is out and the bleeding has stopped he just needs to be able to clear up the pneumonia and he should hopefully be able to go back to Victoria. He seems anxious to go back, and again be in his comfort zone. After all there is no place like home.

I think as sick as he has been it may be several days before he is released, but at least now I feel comfortable believing that the worst is over.

This time.

Update on Dad-August 31

Well, I guess this update is actually from Sept 1, as it is 12:42 and I am up and updating. I have trouble sleeping when Rob is gone and Dad is in the hospital...funny thing...

Anyway, Dad was doing MUCH better today. He was awake and aware when the girls and I visited him, as a matter of fact he called me on my cell phone bright and early this morning, so I knew he was feeling better! Unfortunately I could hardly understand him on the phone (he is difficult under the best of circumstances) and so I got that he did not know we were there yesterday (not a surprise as he seemed very sleepy) and he wanted to seem some family. I let him know that David would be there this AM and the girls and I would be down later.

When we got there he seemed very awake and lucid, and he seemed very happy to hear about the girls starting school, etc. His voice is VERY weak, but he says his throat is not sore from the vent tube. He mentioned that they had tried to get him up, and that it scared him that his knees buckled under him. I reminded him that he has been VERY sick for 12 days now, and that it was to be expected that he would be weak...just give it time. I heard later from David that he had had the same conversation earlier in the day.

So all in all he is definitely improving, but not yet ready to leave the CVICU. The main issues, the pneumonia and the intestinal bleeding have seemed to have greatly improved, and that is what we have been praying for.

Before we left, we said a prayer as we always do. This time Avery wanted to say the prayer, and she asked God to protect and heal Grandpa. Then when she was done Dad asked to join in the prayer, and thanked God for blessing him with the "wonderful family he has" that has "carried him through his difficulties". I thank God he has given me such a wonderful example for a Father.

More updates tomorrow.

Update on Dad-August 30

 

Well, today turned out to be a pretty good day for Dad, he finally got the respirator tube out after 10 days of having it in. His nurse (she's been with him for the last 3 days) commented that he had had very little sleep in the last several days and was very agitated. So after the tube was out he was very awake and alert for several hours, but when we got there to visit he had finally let his exhausted body really relax and was in a deep sleep. He did open one eye, and he did respond to the girls saying "we Love You Grandpa!" with a very quiet "I Love You too", but other than that he slept through our visit. We were just so happy that the tube was out and he seemed much more comfortable.

On other good news, the intestinal bleeding has stopped, and so for the time being that is one more condition that seems to be going in the right direction. His pneumonia is improving, and the chest tube is draining any accumulated fluid away from his lungs which makes it easier for him to breathe.

All in all his nurse told me this was a really good day for him. She said she was so happy to finally be able to speak to him, and was commenting on what a kind man he is and that he had even showed some humor! As sick as he is, he is still able to be such a trooper. He is an inspiration.

She also said that he might be moved out of the CVICU as early as possible tomorrow, but warned that he will probably stay in the hospital for some time to come. As sick as he has been, he still needs more time on the antibiotics, and the wonderful medical care that Hoag is providing. I have mentioned to my husband that I honestly believe that if we did not live near such an incredible hospital Dad would not have made it through this extreme sickness. The people there are so caring, and just totally awesome!

Zoey and Avery were happy to see Grandpa, and happy to "gown up" (Zoey much more than Avery). I think Avery was a little overwhelmed by the whole thing, but she also was a trooper. I guess she has some of Grandpa Stan's toughness genes in there somewhere :-)

More updates tomorrow.

Quick Dad Update

David just got a call from Hoag that they have removed the respirator tube from Dad's throat, and he was anxious to see his kids. Rob left early this morning for a week in Alaska, but the girls and I are going to head down to Hoag and give Dad a visit!

Good news at last!

Update on Dad-August 29th 3:00PM

Just got a few emails from David with updates (the hospital is calling him for authorization on any procedures Dad needs. I'll just quote him here to update:

First email, from 11:50AM:

Hoag called me yesterday around 6pm to authorize a bronchoscopy to examine Dad’s left lung further. It was my understanding that it was intended to help evaluate the general condition of the lung and perhaps assist in removing some of the remaining fluids. They gave him some mild sedation to make this easier for all. Accordingly, Melinda and I went over a little later in the evening (9:30ish) in the hopes that he would be past the effects of the sedative but, he was still sleeping very deeply. Unfortunately, the nurse did not yet have any results to share of the earlier procedure.

I called a little while ago and spoke with today’s nurse, Marianne, who advised that I should be expecting a follow-up call from the Dr. who should be calling to request authorization of a different procedure to remove excess fluid from the area surrounding the lung - a potential procedure we were discussing yesterday. I am waiting on that call.

She further explained that under her watch he has been much more agitated and difficult the last two days and keeps trying to pull out the respirator tube. She told me she has had to sedate him several times because of this. This was the first time we have been told this. I explained that this has happened in the past and once he was able to speak again Dad had explained that he knew he had to have the tube but, there was something uniquely uncomfortable about it that caused the agitation and asked her to please take a look from that perspective.

Unfortunately, there is no sure way to know if he has just reached his tolerance point with this or, if there is a different level of discomfort that he is trying to convey…..


I’ll let you know what I learn once the Dr. calls.

2nd email, from 3:00PM:

I just spoke with Hoag a few minutes ago and authorized the insertion of a chest tube for Dad. The purpose of the tube is to act as a drain for the accumulated fluids in the chest cavity. The tech explained that when the patient's system is unable to process these naturally, they accumulate between the lung and the chest wall and effectively prevent the lung from filling as completely as one would hope. The more the lung is able to expand, the greater it's capacity to clear the junk inside. It's sort of a medical version of "it takes money to make money" ("it takes capacity to create capacity"!).

The procedure is done using a local anesthetic and presents minimal risk. The greatest danger would be that they might accidentally nick the lung. Fortunately, the solution for this......is to put in a chest tube.

Hopefully the chest tube will help his breathing and we can get the tube down his throat OUT.

More updates later.

Update on Dad-August 28th 11:30PM

As I guess is normal in this kind of situation, we are kind of at a standstill right now. Dad's body is fighting the attacks against it, but because of his significant physical challenges it is having trouble moving forward.

Really not too much to report today...Dad is still on the respirator, and still battling the pneumonia. He is still bleeding from his intestines, but it is greatly diminished. We have not moved much forward, but more importantly we have not moved back.

Dad is probably the toughest person I know. He is a fighter, and is still fighting when many, or probably most would have given up. His body has tried to quit many time over the last few years, but his mind continued to fight...and so he is still here. I think of him when I feel overwhelmed and down and it helps me to buck up...if HE can do it, it should be no problem for me.

Go Dad! I love you so much.

Hopefully more positive info tomorrow. I'll update when I get any new info.

Returning Emails

Just wanted to send a quick note to all of you who have sent me emails in the past week...I am so sorry I have not responded yet. With working, getting the kids ready for "back to school", soccer practice, driving to the hospital and everything going on with Dad, driving to Canyon Lake and everything going on with Henny, and taking my own little monkey to the ER, I have been totally and completely OVERLOADED.

I'm a little tired, worn out, exhausted, and did I mention brain dead??

Ugh...waa waa waa...okay, enough whining. But really what I want to say is I cannot express how much all of your kind words and emails mean to me, and how much strength your reminders of leaning on faith, etc. are helping hold me up right now. I do read every email, and will hopefully have a little time over the upcoming 3-day weekend to respond.

In the meantime, as the old guys from Bartels and James would say..."Thank You for your support!"

Update on Dad-August 27 9:45PM

David and I saw Dad this evening and had a good chance to speak to his nurse. Here's what we learned:

Dad had a CAT scan today, which showed really no improvement with his pneumonia. Or, the other way to look at it is...it's not getting worse, so that's a blessing. It also showed there is quite a bit of fluid in the area around the lungs, and the Dr. is going to be deciding in the next 24 hours or so if they need to drain that area with a needle they would insert into the fluid pockets to drain them. As of tonight, Dad is still on the respirator, and still has his hands in restraints. We asked about this, as he is pretty much alert and lucid, but the nurse says when they loosen or remove them he immediately starts reaching for/playing with the tubes and she is just worried that he might find them so irritating he would pull them out.

Dad's bowel blood loss definitely seems to be less, and as of right now they are just hoping that it will stop bleeding on it's own...so again this is kind of a "wait and see" type thing. This could change dramatically at any time if something "breaks loose" in there. The are giving him nutrition through his G-tube, and so far he is tolerating that okay.

The last thing was the bedsore that he has, and that seems to be getting no worse, but really getting no better. They are rotating Dad every couple of hours, and treating it with "barrier" cream, but it seems very slow in healing as well.

Dad had the Angel game on while we were there, and seemed interested in watching that. My feeling is that this will be a long process of recovery, and most of these things that might clear up for a "healthy" person in a week or two might take Dad a month or two based on his overall poor physical condition and the effects of the Parkinson's disease. The nurse commented tonight that Dad was a real trooper, and was tolerating all of his treatments really well. I'm sure he will be thrilled to get the tube out of his throat, as he seems frustrated at his inability to speak...and who wouldn't be.

Thank you for all of your prayers. I'll update again tomorrow.

Update on Dad-August 27 1:00PM

Dad is continuing to improve, slightly. He is still on the respirator, but they are using it really only to suction his lungs, he is breathing on his own. They will take another x-ray today and see how he is progressing and when they might be able to remove it.

The cause of his intestinal bleeding has been discovered, and it is a herniated diverticulum (I'm sure I misspelled that one :-)). The bleeding is diminishing slightly, and we are hoping it will stop on it's own, because if it doesn't the method of repair is surgery, and Dad is a very poor surgical candidate. So we are hoping and praying that it will seal itself up, and heal, so no surgery would be required.

David said Dad was still confused about Mom not being around, and he did explain again to Dad last night that we had lost her months ago. He didn't want Dad to worry about why she was not coming for a visit, and could tell from Dad's sad reaction that it seemed to have registered. I'm sure it's something he would rather not remember...and with his physical state it is easy for him to be confused.

That is really the only update so far today. I'll add more as I know it. I'll be going to see Dad tonight after work, so I'll update again this evening.

Thanks again for all of the prayers and love! I know Dad feels it.

First Day of School-2008

Well, I have to say that first day of school is kind of bittersweet for me. I'm so excited to see my kids starting out with the adventures of a new year (and watching their EXTREME excitement about it...especially Avery this year as she is entering Kindergarten!) But every year I drive away from the school after dropping them off a little teary. One year closer to having them leave the nest and be grown up.

 

I know, I know...why worry about that when they are only in Kindergarten and 4th grade? Well, it's because I know how fast these first few years have gone by, and it seems that each year goes by a little faster.

 

Avery was SO excited, and finally the day was here to put on her uniform, new shoes, and her big back pack full of all her new school supplies and new lunch box. We all walked to school together, and dropped Zoey off first in her class (she's an old hand at this) and then went to Mrs. Kahler's room to drop off Avery. Mrs. Kahler's room is so organized...with bins for all the supplies and check-off sheets for everything. Ahh...the smell of a fresh box of crayons...takes you back.

 

After the bell rang I went and took one more peek in Zoey's room and this is what I saw (she sits right by the door, which was open). She just looks so pretty and grown up to me (even though I had to beg her to wear the same outfit as her sister...I'm sure this will be the last time I see her in a dress this year...).

 

Then Andrea and I went to the "Boo Hoo" breakfast for Kindergarten parents, but after eating a yogurt and some orange juice we decided to leave...heck, we've been through this before and didn't want to sit and listen to the talk. We went out to the corner and watched all 4 of our girls, lined up with their classes and walking to first day chapel. The Kindergartners looked really tiny, and the 4th graders looked just a little too grown up. It made me think of my Mom, and how much she would have loved to see it as she was a Kindergarten teacher for all of those years herself. Dad would have loved it too for that matter.

We're off to another school year! 40 weeks of homework??? Times 2??? Hmmm...

Update on Dad-August 26th 12:15PM

The latest update is that there is not too much else to report. Unfortunately the endoscopy they did last night did not reveal the cause of the bleeding, and so further testing is required. They did take him last night for barium x-rays, but we do not know the results of those as of yet. We are hoping they will reveal the cause of the bleeding, but apparantly that whole procedure caused Dad some discomfort.

So not much more to report, certainly not the reports that I am looking forward to giving, that he has recovered and is out of the hospital. I know it is on God's time and not mine, but it's hard to wait.

One positive note, the staff at Hoag is just amazing, so kind but so efficient. I feel completely confident that Dad is getting the very best kind of care possible.

I'll update again this evening. Off to finish school shopping for the girls, as my Kindergartner and 4th grader will be starting school in the morning. Yiiikes!

Update on Dad-August 25 10:15PM

I saw Dad tonight between 5-6PM. He was awake, and his nurse told me he had been awake and alert much of the day. He seemed quite uncomfortable to me, and had a very tired and sad look in his eyes.

Unfortunately, his progress is not what we hope for. He gets a lung x-ray every day and today his left lung appears more congested than yesterday. Because of this they are not taking him off the respirator probably for the next few days, hopefully when the antibiotics start working and the lungs start to clear.

As I was there this evening they were preparing Dad for an endoscopy to determine the location of the bleeding in "his gut" as the nurse put it to me. Apparantly the bleeding has been "slow but steady" and is concerning enough that they need to investigate it. They were hoping to see the source of the bleeding and do something to stop it. If they cannot, they will try to prep Dad for a colonoscopy tomorrow. None of this is fun.

So we continue to wait and pray. I think that this will continue to go up and down...he is already compromised because of his Parkinson's disease and so things that a "healthy" person would get over quickly will take Dad much longer. We are praying for the day the tubes will be removed and he will be able to be comfortable.

More updates tomorrow.

Update on Dad-August 25th 2:40PM

Well, perhaps it is a little of two steps forward, one step back?? Or is it one step forward and 2 steps back...

Anyway, Dad is still on the respirator, just not getting enough oxygen for them to feel he can do it on his own yet, although I know he really wants to. Hopefully tomorrow...

David got a call that he had been having some blood in his stool, and based on tests they determined he needed to be given whole blood. As a result, last I knew they had given him 4 units of blood (sounds like a lot to me). Not sure exactly how he is losing this blood or what is causing it, but I don't like the sound of it.

He also has a nasty bedsore on his back, but I guess that is not too unusual. Ugh, I just feel so bad for him having to go through so much discomfort and being so sick, but the people at Hoag CVICU could not be more incredible, and I know he is getting the VERY BEST of care.

Please keep him in your prayers. I'll continue to update. I'll be going there after work tonight, probably will be there around 5PM.

PS...I want to say a big "THANK YOU" to Tanya and Andrea for watching the girls and even keeping them overnight on Saturday. The girls loved it and it gave us the time to see Dad and do what we needed to do. Also a big thank you to our employers that give us the time to do what we need to for Dad right now as well. Much appreciated.

Update on Dad-August 24 5:45PM

Dad seems to be improving a little bit every day. When we saw him today the nurse said he had been awake most of the day, and he was awake the entire time we were there to visit. The nurse mentioned that he was breathing better, and based on the results of some blood gas tests they might be able to take him off of the respirator today or maybe tomorrow. He wants the tube out and made that pretty clear, even though he is unable to talk. The nurse has him laying on his side, as he has a bedsore that they want to keep the pressure off of.

We continue to pray that Dad will be out of the CVICU in the next day or two, but will probably be in the hospital for a while. We appreciate your continued positive thoughts, prayer and support.

May God's will be done.

Update on Dad--August 23, 2008 6:15PM

Dad seems to be doing a little bit better, his vital signs are improving. He has been weaned from the cardiac meds, and is able to maintain his blood pressure on his own. His blood oxygen levels are improving, and the Dr. is hopeful to take him off of the respirator in the next day or two.

He has been awake during visits, and even though he cannot talk because of the tube in his throat, he can communicate via head shakes and squeezing of his hand.

Hopefully all signs will continue to point in the positive direction over the next few days. I believe all of these positive thoughts and prayers are working, and our family appreciates them SO MUCH!

I will continue to update as changes occur.