A Blink of an Eye...Literally!

I was finally moved to intermediate care where my memories start coming back although they are "broken" memories.  I have glimpses of reality and many more dreams from another world.  However, I did start responding to requests to wiggle my toes, blink my eyes or stick out my tongue.  The neurolgists were greatly concerned at this point because the ADEM was so severe.  They wondered if I would ever sit up and talk again - let alone walk.  At first, the doctors wondered if I would be any better off than Christopher Reeves was. 

To test my response time and muscle control, they asked me to stick out my tongue which I complied with.  The next thing they request was for me to wiggle my big toe on one foot.  I was only able to move it the slightest bit.  And then, I was asked to move the big toe on my other foot.  Well, low and behold...I stuck out my tongue.  The doctor's said that it was a disconnect in my brain due to the ADEM.  But I'd like to think of it as my way of saying this is RIDICULOUS and a way of showing my sense of humor.  Of course in the days to follow, my responses proved that the doctors' theory was correct and I really did have some disconnect in my brain function.



Sun, 1 Nov 2009 16:58:36 -0600

Heather’s condition has improved so they moved her to Intermediate Care on the 4th floor and out of ICU. She still has mobility problems and can barely move her fingers and toes but is doing much better on her oxygen. For those of you who’ve asked how you can help, right now, besides the prayers, we could use two things:


Because I’ll be going back to work full time, it would be nice to have people spend some time sitting with her. She can’t talk yet but is very much awake and aware and will have you grinning at her “signals” of blinking eyes, sticking out her tongue and winking! (Please email me when you can visit)


In lieu of sending flowers, if you were planning on such a purchase, a gift card to Kohls or Target would probably be better for her as she’s lost quite a bit of weight from this ordeal and after physical therapy, will need to buy some clothes she can wear. The reason I suggest Kohls or Target is that both stores are less than a mile from the house and it will be easier when she gets home to get her there and back.

In Between Worlds

Being on a paralytic as well as all of the medications, I was truly unaware of everything going on around me.  I'm told that it is a very good thing that I don't remember.  Towards the end of week 4, I began to move back into the conscious world though I was still in a drug induced world as well.  The memories I have of this time are extreme and disturbing but we will get to that later. 

At the very end of the week, we were hit with another curveball.  I developed ADEM which is Acute Disseminated Enchephamylitis.  Basically being the over achiever that I am, my body (by mistake) attacked the white matter of my brain while fighting the ARDS.  I guess there are times when eing a perfectionist can get you into trouble!



Sun, 25 Oct 2009 19:32:57 -0500

They’re weaning Heather’s O2 pressure (PEEP) down along with the sedative. When I walked in this morning, her PEEP was at 8 and her blood oxygen level was at 99% which is absolutely amazing. Her fever is gone and they plan on trying to see if she can breathe by herself tomorrow if they can get the PEEP to 5. (it was at 6 when I left tonight) If she can breathe ok, they’ll remove the vent. If not, they’ll do a tracheotomy and add a trach tube, which will be much more comfortable for her. She’s still weak muscularly due to the steroids and the paralytic but she’s able to recognize us when we’re there.


Mike

Mon, 26 Oct 2009 17:56:46 -0500

Due to the paralytic drugs combined with the steroids the doctors had to give Heather to save her life, she’s still unable to move as much as the doctors would like. Her O2 levels are near normal breathing (40% O2 and a PEEP of 5) but they feel it’d be better to give her a tracheotomy rather than just pulling the breathing tube out at this point. This is pretty normal for patients who’ve been on a vent for this long. They’ll do the procedure tomorrow at 11:00am. She’ll have to have it in for at least a week…so we expect her to be in ICU for at least another week. She can have visitors, so any of you who’d like to visit and sit with her, please send me an email and we can arrange a time.


Thanks,
Mike

Tue, 27 Oct 2009 21:51:53 -0500

Heather’s Tracheostomy went well today. I left around 3:00pm but she looked much more comfortable as compared to when she had the tube down her throat. She was still coming off the anesthesia so she’s wasn’t as lucid as I would have hoped. I’ll be there in the morning to see how she’s doing but from what I can tell, it’ll make a world of difference to getting her off the vent. The doctor mentioned he expects her to be off the vent in a week.


Fri, 30 Oct 2009 06:01:40 -0500

Sorry it’s been a couple of days since I sent updates. Between work, spending time at the hospital and trying to sleep…I’ve been pretty busy.


Yesterday was an awesome day. Heather seemed to suddenly “wake up”! When I walked in, I thought I’d hear a doctor to tell me she’d had some sort of brain injury as a result of saving her life and that she’d not ever be the same. When I walked in, there wasn’t a nurse right at her bedside so I just walked in. She was looking straight at me. I asked her to blink her eyes a few times if she understood me. I told her I loved her and blew her a kiss. She blew one back! The nurse came by and said that they’d been working on range of motion and that she’d gotten Heather to stick out her tongue if she were in pain and that she’d been able to weakly squeeze both hands. Brandy came by and spent the afternoon with her. She and the nurse took care of her skin and put her hair in pigtails. The Neurologists came by a little later and ordered an MRI which they did last night. (No results yet) Hopefully all will be well but yesterday was a major improvement. You can’t imagine how it feels to kiss your wife after 3 weeks of missing her!


Mike

Sat, 31 Oct 2009 06:26:36 -0500

Heather is more and more alert but still has trouble moving her fingers and toes. The doctors did an MRI yesterday and explained that she has Acute Disseminated Encephalomyelitis, which I’ll not try to explain in detail here. Please visit this page for more information: http://www.ninds.nih.gov/disorders/acute_encephalomyelitis/acute_encephalomyelitis.htm


They’ll start intravenous immunoglobulin therapy today for four days in hopes it will arrest the disease. She’s in great spirits and could use visitors. I also could use help during the week for anyone who can sit with her while I work. This can be a couple of hours, but it’s been almost 4 weeks now and I have to get back to work in order to make sure we keep a house over our head. If you’d like to visit or help out, please email me and we’ll arrange times.


Thanks,
Mike

A Turn for the Better

Week 3 came along and I was making progress which gave everyone hope and encouragement that I would pull through the whole ordeal.  The routine was more of the same.  The emails below recount the week better than I can.

Sun, 18 Oct 2009 20:03:10 -0500

I spoke with Dr. Winegardner this morning and she seems to have turned a corner. They have her temperature under control. (it was a reaction to specific meds) Her kidney functions are improving. She was able to withstand 5 hours on her back with O2 at 50%. He said that he’s hopeful that she could be out of this bed and into a regular hospital bed in the next couple of days. I can’t tell you the relief we felt today when he said that. Anyone who doesn’t believe in the power of prayer or at the very least, positive energy, needs to take a look at what it’s done for our family! I’ll continue to send out updates until she’s home. I know many people will want to see her and talk to her when she’s out of the hospital, but realize that she’ll still need lots of care before she’s recovered fully. I don’t want to her to become overwhelmed. You know Heather…she’ll want to take on too much too soon!


Mike


Mon, 19 Oct 2009 18:54:37 -0500

Heather was able to withstand 10 hours on her back last night. The doctors are hopeful that she’ll be out of this bed and into a regular hospital bed in the ICU in the next couple of days. Her O2 is at 40% and PEEP of 8. Major change as compared to Sunday the 11th. Here is a guide on ARDS for those of you who will want to see/visit her once she recovers and is out of the hospital.- http://www.ardsusa.org/tips_post_ards.htm


Mike



Heather’s condition continues to improve daily. They plan to have her on her back for 24 hours and then flat on her back for a few more hours after that. If she’s able to maintain oxygen levels and other levels, they’ll move her to a regular bed! They took her off the paralytic drug today and I was able to see her jaw moving a bit and her eyelids moving a little. She’s still in a sleep state but is probably aware of people around her now. Drew and Emily and her parents are coming in this weekend. She may very well be awake by then!

Mike



Wed, 21 Oct 2009 19:56:05 -0500

They put Heather into a regular hospital bed in the ICU today. She’s sleeping MUCH more comfortably and even opened her eyes a few times. They still have her on the sedative and morphine so she’s in and out of consciousness but not awake enough to respond. It’s just wonderful to see her beautiful eyes again!


I feel like I can hear cheers of joy from us all!!! Yahoo, yippee and yee haw!!

Thank you God!!
Connie Hollingsworth


Sat, 24 Oct 2009 08:49:52 -0500

Sorry I’ve not sent updates the last couple of nights. Heather was moved to a regular bed in ICU so I’ve been spending more time at the hospital. Her condition continues to improve. She recognizes it’s me when I come into the room and is obviously confused/scared by the fact she can’t talk due to the breathing tube. Because of the steroids and paralytic drugs, it’s difficult for her to move her hands/legs, which adds to the confusion. She can have visitors but we’re trying to limit visits so we don’t overwhelm her. Please email me if you’d like to see her and we’ll make arrangements. Emily and Drew and her parents came in to see her this weekend, so that offers some comfort to her. The doctors are hoping to remove the breathing tube by the end of the weekend if they can wean her off of it.


Mike

The Race Was On

Week 2 begins with more of the same and phone calls went to family members informing them of the current situation.  The race began to get to Austin in order to see me and support Mike, my parents and the kids. 

Krista, Mike's sister, made a mad dash to Texas when she got the call from Mike on Sunday that things looked bleak.  She was able to make arrangements for the kids and throw some items in a backpack and head to the airport in short order.  As I talk to Krista now, she tells me she had Mike put the phone to my ear so she could tell me she was on her way and that she would she me when she got here.  While on the plane, she prayed the entire flight reminding God that he had already taken so many family members from her life.

Brandy picked Krista up from the airport.  Having never met, Brandy asked what she was wearing so she would recognize Krista.  Krista told her to look for the purple backpack! At least I think it was purple, anyhow you get the picture.

Stuart, my brother, flew in from Maryland.  Angela, my best friend, flew in from Lubbock eventhough it was her 40th birthday.  Friends and family came from all over Texas: Houston, Temple, Lubbock, San Antonio, San Marcos, Austin and of course, Kyle.

Below are emails that recount the week in detail:


Mon, 12 Oct 2009 21:07:03 -0500

Heather made it another day. Her left lung showed a little improvement and she kept her O2 level up. Krista arrived fine and we all spent the day at the hospital together. Not a great way for Krista to meet her in-laws…but I guess Heather had a similar experience. Let’s hope we don’t have any more like that. I’m pretty tired, but just wanted to drop you a note to say we made it another day.


Love Mike

Wed, 14 Oct 2009 07:11:47 -0500

For those who don’t know, my wife Heather was admitted to Seton Hospital ICU last Wednesday for pneumonia. Her condition worsened and turned into ARDS (please do a Google search on the subject for more info) She was put on a special rotating bed last Friday (RotoProne) that keeps her alive until she can start to heal. I created this distribution list of friends, coworkers and family members so that people can get regular updates. It’s difficult to answer the same questions over and over. This seems a simpler way to keep people updated on her condition.

10/14/09


We had another stable day yesterday. Her O2 was up a little from the day before. Sorry I missed sending an update yesterday. This all is pretty overwhelming. I spoke to the rep who makes the RotoProne bed at her bedside yesterday and he said that H1N1 (which this may have started as) patients a lot of times are on this bed for 2-3 weeks. They gave her a paralytic drug yesterday which paralyzes her body so she doesn't move or cough. This keeps her O2 at max potential. A good number is above 89. She stayed around 93-94 yesterday. The outpouring of support has been tremendous and one day I hope she'll be able to read this and thank you herself.


Mike



Wed, 14 Oct 2009 21:08:05 -0500

Heather had another stable day. The doctors dropped the O2 to 80% and her PEEP to 16. (That’s a good thing. You and I breathe about 21% O2 and a PEEP of 5-8) She had been on 100% O2 and 18-20 PEEP. Little improvements make my day. Her kidney numbers seem to have plateau’d too rather than getting worse. She does have a low grade fever but they’re giving her Tylenol to bring it down.


Mike



Hello, I am Heather's neighbor and I hope not to offend anyone by sending this email, but I wanted to share some links that I researched that explain Heather's condition as well as the special Rotoprone bed that she has been placed in.

What ARDS is and this one pager seemed to explain it well:


http://www.merck.com/mmhe/sec04/ch055/ch055c.html


The Rotoprone bed that she has been placed in is described as follows:
http://www.kci1.com/cs/Satellite?c=KCI_Product_C&childpagename=KCI1%2FKCILayout&cid=1229624988017&p=1229538260433&packedargs=locale%3Den_US&pagename=KCI1Wrapper


This is a Dallas news article just written today about a man that was in the same condition and feels this bed saved his life:


http://cbs11tv.com/local/rotoprone.bed.baylor.2.1248534.html


I hope these links work if you haven't had the chance to read about this.


Keep the faith! - Laura




Thu, 15 Oct 2009 19:48:55 -0500

We had another good day today. One of her doctors said that he was more positive about her condition. Her O2 was at 70% and PEEP of 14. (as opposed to 90% O2 and 18 PEEP Tuesday) He mentioned that her x-rays from yesterday were slightly improved. She did have a fever today that spiked at 102.9 but the doctors ran cultures and didn’t seem too worried about it. Her kidney doctor will put her on dialysis tomorrow to make sure her kidneys don’t get damaged from the stress they’ve received. We watched the nurses take care of her skin today and change out some of the padding from the bed. Her O2 rate stayed above 89 for the whole hour they had her on her back taking care of her. She’s not out of the woods yet but I’m starting to feel better about her condition.


Mike



Fri, 16 Oct 2009 16:04:38 -0500

They've dropped Heather's O2 to 50% and PEEP to 10. She does have a fever that's of concern but all the cultures have come back negative. (I told the doctor she's a hottie anyway) They think it may be a nasal infection or urinary infection. Her doctor said she'd made great strides compared to Sunday. They decided to hold off on dialysis to verify if her kidney functions improve as they're borderline right now. My wife's a fighter and she's young. I can't wait to hold her again. This last week and a half has been surreal and absolutely insane!


For all you Mom's and Dad's out there, when you have a child who's sick...take a lot of precautions so that you don't get sick. This started as the flu (maybe H1N1) progressed to pneumonia and became full blown ARDS...which is deadly.


Mike

Heather was able to be on her back last night for 4 ½ hours. Absolutely amazing since they could barely put her on her side this past Tuesday. Her fever went down and the doctors found it was the combination of drugs which caused it rather than a secondary infection. Her lungs are starting to clear too. Both doctors we spoke to today said she’s starting to make progress and things are cautiously optimistic. She probably will be on this bed for another 3-7 days before she will be moved to a regular bed. Her friend from Lubbock, Angela came down despite it being her birthday so we celebrated at Papadeaux. Can’t wait until Heather can join us for her favorite Mexican martini!




Mike


It was good to see Heather “on her back” Sunday evening. I had a nice visit with Heather & I got to do all the talking! Heather is starting to look a little more like herself, you know she’s laying around in that bed naked!! She just had a towel covering her front side, thank goodness it wasn’t her back side that was in the “up” position. Heather is very fortunate to have so many friends that love her and are praying for her…………..




Connie Hollingsworth
Volunteer Program Assistant