"Choose for yourselves this day whom you will serve, whether the gods your ancestors served beyond the Euphrates, or the gods of the Amorites, in whose land you are living. But as for me and my household, we will serve the LORD.” Joshua 24:15

Tuesday, January 31, 2012

Another Tuesday Come and Gone

Good Evening, Prayer Warriors, Friends and Family,

Well, we've made it through another day. Hopefully, we'll make it through another evening, as well. After an extremely rough morning, Bethany had a pretty good afternoon, and a not-so-good evening. After the morning, Bethany began to feel quite well; so well, in fact, that she was able to check her FB status and work on her laptop for about 20 minutes. The doctors asked that she attempt to walk 4 times today, as well as eat 3 meals.

In the early afternoon, the Infectious Disease doctor arrived. I was getting ready to go home for a nap, when he said that he thought Bethany should be able to go home tomorrow. What? Apparently, he hadn't witnessed Bethany for the past 24 hours. Apparently, his less than 5 minute assessment, along with her looking rather chipper, was enough for him to say, "Adios, Bethany." His plan is, insurance willing, that he send her home tomorrow, with an IV pic line, and some additional antibiotics. Hmmm. Sounds awfully familiar, if you ask me.

Haven't we walked this path at least 6x prior? I mean, this is Bethany's third major surgery, and each time she has had to return to the hospital, having been discharged prematurely. I mean, shouldn't she at least be off the IV Dilatid for at least 24 hours? Shouldn't she at least be able to hold food down? Shouldn't she at least be able to walk around the floor without collapsing? Shouldn't she at least be able to sit up or sit in a chair for longer than 5 minutes without feeling as though her head was going to explode? Hmmmm.....

After the doctor left the room, Joe and I discussed the aforementioned and our discontent at the plan. First of all, if the insurance company doesn't approve the IV pic antibiotics, then she will merely be sent home with some oral antibiotics. Again, frustration. I don't want to sound all negative, it's just that Bethany has been done this exact same road numerous times before, and what part of 'discharging prematurely leads to another hospital stay within a week,' doesn't the hospital understand?

So, I went home, cleaned house, picked up Jonathan from school, grocery shopped, took Jonathan to the basketball game, ate dinner and headed back to the hospital. In the mean time, Bethany had attempted to sit up and had to immediately lay back down. She became nauseus, dizzy and developed an extreme headache. So, she didn't actually get up to walk. She did, however, manage to swallow a few spoonfuls of rice and a banana. YES!!!

When I returned, she told me that she didn't feel well at all, she couldn't get out of bed, and that her pain level was at an 8 out of 10. She definitely knows how to handle her pain. After about 2 hours, we saw the nurse and she just gave Bethany an Ambien to help her sleep. She had slept a lot this afternoon, and she is definitely going to need a sleeping aid. She is currently in tears and fearful of what the evening may hold. Another sleepless night? More hallucinations? I told her to just relax and enter a heavenly dreamland.

Joe mentioned that the insurance company is going to cover for her to have IV pic line, with IV antibiotics for 6 weeks at home. Woo-Hoo! That's great news because I didn't think that merely oral antibiotics would do.

Again, thank you everyone, for your kind words of prayers and encouragement to Bethany and to our family during this time, for the cards and meals delivered to Joy and Jonathan, and the words of advice. We truly appreciate each and every one of you.

Love, Shari and Bethany

It's Tuesday and 1 Day Closer to Going Home

Good Morning, Prayer Warriors, Friends and Family,

Bethany had a decent, albeit fitful night last night. She had sleep medication around 8:20pm, and then some more at midnight. Goodness, this girl just cannot seem to get much sleep at all. The insomnia really plays on her mind, and is definitely taking its toll on her mind and body. Around 11pm though, Bethany had a sudden surge of energy, wanted the light turned on, and worked a crossword puzzle while munching on Laffy Taffy, almonds, a banana and some candy corn. Who knew? This is the same kid who hasn't eaten virtually anything for days. Then, after her 2nd sleeping aid, at midnight, she became really nauseaus and took forever to settle down and go to sleep.

Having said that, morning comes way too early around here, and we are both feeling the side effects of her insomnia. Between the IV's beeping, the heart monitors, medications, temperatures, etc, she wouldn't be able to get too much sleep anyway. The nurses have been kind enough to let her sleep--if and when they enter the room to dispense medication and she is sleeping. Thank God. She is, however, almost always awake at some level. When she's awake, she's very needy because she is still in constant pain.

Mornings always seem to be exceptionally rough for her, and today hasn't been any exception. She tosses, turns, is fitful, uncomfortable, and just plain lousy. When Dr. Healy arrived this morning, Bethany had just began having back spasms that were vibrating and rippling from her neck, down her back, through her legs, and then repeat. Dr. Healy seemed a little surprised, but when he checked her out, he seemed to think her muscles looked soft and good. (Whatever that meant).

So...we wait. In pain. And we wait some more...And I really need to go asleep.

Monday, January 30, 2012

What exactly is Bravery?

Great question. I have THE answer: Bethany Rose Grayczyk

After this morning's events, Bethany settled in to a relatively peaceful day. She is totally dazed, murmuring nonsense the majority of the day, and nauseus constantly. She ate three spoonfuls of oatmeal this morning, and that is it for the day. She virtually hasn't eaten anything since Saturday morning, and for that, I am worried. I will ask her surgeon tomorrow if he will order liquid IV nutrients for her. Hopefully, that will at least give her body some energy to improve.

It's just been a sad couple of days for Bethany. To say that she has been brave is quite an understatement. Never once has she asked, "Why me?" or anything even remotely similar. She is always thanking everyone who is assisting her, and feels burdensome when she needs something. Ha. She is definitely not burdensome.

She has been having an extreme itching reaction to the medications, however, she really needs the meds. She was given Benedryl to combat the side effects; I think it may have improved her symptoms some, but I can't really tell. She is finally asleep, and for that, I am extremely grateful. We have excellent nurses today, as usual. She is also experiencing extreme twitching, and she hates it. Her face, arms, legs, etc. Uggh!

Bethany's MRI results came back normal. Thank God! I am anxious to hear what Dr. Healy has to say in the morning regarding the potential timeline for her recovery. I haven't a clue because she really doesn't seem to be improving at all. I know that the antibiotics can take a few days to sink in, so I am believing that she will be feeling better tomorrow.

On a positive note, my mom had her bone marrow biopsy taken today. It wasn't as painful as she feared it would be. The doctors won't have the results for several days but she's comfortable and actually feeling pretty fine. :) (My brother posted this as his facebook status)

OK. Now down to the nitty gritty. Here's our ever present prayer requests:

•That Bethany is miraculously healed of all of her symptoms, pain, itching, twitching, diagnosis, meningitis, etc.;
•That she doesn't have absolutely any long term or short term negative results;
•That the doctors are granted Divine wisdom;

Thank you for praying about my meeting with Joy and Dr. Burns at UT; it was this afternoon, and it went really well; with apologies from UT, her scholarship has been reinstated. Go UT and Go Rockets! Praise God! One less thing to stress over and one giant step towards breakthrough.

Joy was recommended for and interviewed today for the UT SWAT team. She said her interview went really well, and she is excited to be able to work on the SWAT team (assuming she is accepted).

Thanks again for everything, most of all, your prayers. Also, continued thanks for the meals that Joy and Jonathan have been receiving. They are invaluable to them and truly appreciated.

Blessings, Love, Shari and Bethany

Just Another Manic Monday

Good Morning,

Well, yesterday was busy and sad, to say the least. Bethany was in a lot of pain, and it has taken almost 24 hours to manage her pain, but I think it's going to be good. She finally got on a PCN (pain pump), and after a few hours of that not being enough meds, they added a button that she can push every 15 minutes for an extra boost of medication. This way, if she is sleeping, she won't get any, but if she really needs it, she will.
Bethany neck has hurt her tremendously, and it has been the source of constant pain. Her incision is almost healed and looks great. Her back, however, seems to hurt a lot, too. Most likely, from laying in a bed for so long. Bethany has worn the neck brace for the majority of the night, just for comfort, as it is not required.

Well, Bethany had a pretty good night, if I do say so myself. She was given a sleep aid (Ambien) at 9:00 pm, and that assisted her in sleeping, on and off, for a couple of hours. She was awake every 15-30 minutes, but at least she was able to get some sleep. She was given another Ambien at 3:00 am, so she is still groggy and not totally 'with it.' The transport team arrived at 8:00 am to take her for an MRI. My main concern is her pain management, light and sound. My goodness, people just do NOT know how to whisper, even when I constantly ask if they could please speak quietly to her and around her. She's not deaf, just in a lot of pain.

The monitors are constantly beeping; lights are constantly being turned on bright, and people are constantly (and inconsiderately, I may add) talking really, really loud in her room and around her. She is currently getting an MRI of her brain. She is also going to have a lumbar puncture sometime today to determine the extent of the meningitis. Dr. Healy said that he does not want the doctor to do the puncture at the base of Bethany's spine, rather he prefers that they do the puncture at the base of her neck. Hmmm. Hopefully, this will be less painful. We have been assured that they will keep her on her pain meds and will partially sedate her. I have definitely found that a parent advocate needs to attend every test to ensure that happens.

OK. I just had to leave for about 90 minutes. I'm back, and Bethany's MRI on her brain is complete. She's in pain, but not nearly as much as she has been. Following the MRI, she was taken for the lumbar puncture. She was very nervous, as she knows that this can be very painful. I assured her that I wasn't leaving and that I was her advocate for pain medications and sedation.

When the nurse arrived, she said that they would be performing a lower lumbar puncture. I repeatedly expressed concern over the fact that Dr. Healy had said that he didn't want a lower lumbar puncture, but rather a puncture near the top of her neck. The nurse assured me, at least three times, that the the resident had spoken with Dr. Healy, and Dr. Healy was OK with this. OK. I totally trust Dr. Healy, and if he's says it is OK, then it must be.

Ah....I'm learning that information is only as reliable as its source. Because.....when the doctor, who was going to perform her lumbar puncture, arrived, he explained that we wasn't going to do anything. He had spoken with Dr. Healy directly, and Dr. Healy was, and I quote, "emphatic about not performing a lower lumbar puncture." He proceeded to explain that he was not personally equipped to do such a puncture, and that he didn't want to cause Bethany any unncessary pain, thus the procedure was cancelled. He apologized for our wait and inconvenience. We told him that it wasn't any problem because we had just been down the hall having a MRI.

Whew! Thank God, Bethany was able to skirt having the lumbar puncture/spinal tap. Woo Hoo! I was not too happy about the miscommunication, but figured I should wait until another time to discuss it with the nurse. So, I held my tongue. I'm getting rather used to that.

When went back to the room, quickly changed the sheets on her bed, and transferred Bethany to the bed. Dr. Glick had ordered some Embed from the pharmacy because Bethany has been too nauseus to eat for the past few days. Before they give her any IV nutrition, they want to try this anti-nausea medication. It is typically given to chemotherapy patients, lasts 24 hours and is exceptionally strong. YES! So.....I then ordered her some oatmeal, brown sugar and milk. Hopefully, getting a little nutrition into her belly will help her.

She has been extremely upset because the Ambien (given over 7 hours ago) is still messing with her head. She's talking nonsense, and she hates it. I told her that I knew exactly how it felt, and that I hated it, too. Those of us Type A personality types, hate it when we are totally out of control. I told her it should only last about one more hour.

Prayer Requests:

•That Bethany be totally healed of the meningitis and that there isn't any long term effects;
•That Bethany's pain is kept managed and that she will be able to continue to rest comfortably, while still being able to sleep at nighttime;
•That Bethany will be able to actually eat something and keep it in her stomach;
•That Bethany's spirits are maintained and her vitals stay within normal limits.

Thank you so very much, again,

Love, Shari and Bethany Rose

Sunday, January 29, 2012

What a difference a day makes

Good afternoon,

As you may already know, Bethany was re-admitted last night into the Intensive Care Unit at St. Vincents. Her meningitis symptoms have returned in full-force, stronger than ever, and she has been in extreme pain ever since. Although she is on major pain medications, liquids, a PCN pump, an additional PCN push, etc, she is still suffering tremendously. Thank God for absolutely awesome nurses, Sarah and Tara, and for Dr. Glick. Yes, he is still here.

Tara was our 7p-7a nurse, and not only was she extremely quiet, but she was extremely proactive and compassionate. Our 7a-7p nurse, Sarah, has been the same, and has gone above and beyond the call of duty to make Bethany as comfortable as possible. Dr. Glick just returned and decided to increase Bethany's IV pain meds, to increase her anti-nausea med, and to increase her sleep meds. YES! This girl has virtually not slept at all.

The plan is to give her 10mg of Ambien tonight at 9p and then another 10mg at 3am. They are also increasing her Dilatid, thus, she should, in essence, be able to sleep. Her body is under such stress, that her central nervous system won't allow sleep. They are being extremely careful not to overdose her on pain medications.

Bethany is currently in a neck brace, as her neck is extremely painful from the meningitis. She has been totally unable to move, due to her pain level, however, Thank God, her surgical site is healed. Thus, everything that has caused her to return to the hospital--the spiking fever (constant), extreme pain, sensitivity to light and sound, nausea--is related to the meningitis and nothing more (at least that what we are hoping.)

Dr. Chinyadza, her Infectious Disease doctor, came today and said that he will be doing a spinal tap on her. Yikes. We would prefer not to have one, given her current level of pain, however, we do thoroughly trust Dr. Chinyadza. They won't be doing the actual lumbar puncture until tomorrow. I promised Bethany that I wouldn't allow them to do it if it was going to cause her an extreme amount of pain, and/or if they haven't been able to manage her pain by the scheduled.

I then requested Dr. Glick's return, and he said that he promised the team of Infection Disease doctors would ensure that Bethany be almost totally sedated for the spinal tap. He also explained that barring any unforeseen circumstances, Bethany's spinal tap should be less painful than most. This is because some of her bone was actually removed during her past surgery, thus the needle wouldn't have to twist and turn so much in order to tap in the exact place. Also, it helps that she is rail thin.

Speaking of thin, Bethany hasn't eaten a morsel in over 24 hours, and thus, she is shrinking by the minute. She has extreme nausea, and although she is hungry, she can't eat. This is especially unfortunate because this means that she cannot take her Percocet or Ambien--thus leading to more pain and insomnia. Due to a national shortage, St. Vincents is still out of IV Valium. Grrrr. Bethany has been murmuring constantly, talking gibberish, and hearing things that I am not saying. It is totally frustrating her, but it is normal, given the amount of pain and medication and stress she is under. You know she's in pain when, I take a salad into the bathroom so that I can eat quietly--without her hearing, and she says, 'Mom, can you chew more quietly?' Yikes.

Although Bethany has been moaning and groaning since her arrival, almost 24 hours ago, her moans appear to be less frequent. We've been told that her pain will not really subside until the antibiotics have been given a few days to work their magic. I've learned that Dr. Healy will be returning tomorrow morning, and this is a miracle for us. He will be returning from his vacation tonight, just in time to see us. Woo Hoo! Between the Lord, Dr. Healy, Dr. Glick, and Dr.Chinyadza, we know we are in excellent hands.

On a side note, my mom has also been re-admitted to Beaumont Hospital, in Detroit. She spiked a high fever, and given the fact that she has been recently diagnosed with leukemia, this is not good. My sister, Debbie, has posted the following in an email:

FYI: Mom has just been diagnosed with LGL Leukemia. It is a very rare form of leukemia. She does not have an aggressive form of the disease. She will be on a medication for this and will be having her blood drawn once a week for a month and then return to her doctor. The hope is that her white blood cell count rises. It is EXTREMELY low right now. I took mom to the ER last night, after spiking a fever and feeling lousy for the past couple days.
I am including some links below for information about this disease.


Treatments: http://bloodjournal.hematologylibrary.org/content/117/10/2764
Neutropenia: http://www.medicinenet.com/neutropenia/article.htm
blog: http://csn.cancer.org/node/153375

On a happier note, Bethany was given a handmade prayer shawl today. She was also given one during her previous stay. Here is a picture of this one:

Here's some more prayer requests, Warriors:

•That Bethany and my mom are totally healed;
•That both of their pain subsides and is comfortably managed;
•That the doctors continue to give sound advice and wisdom and are guided by the Spirit of Guide and their training;
•That the nurses continue to be as they are--great!

Thank you very much, Saints. Keep on keeping on. Romans 8:28 says a multitude of things, and we are relying on this hourly during this last week.

Love, Shari, Joy, Bethany and Jonathan

Saturday, January 28, 2012

She's Back in the ICU - *sniffle and poke*

Good Evening,

Well, at least today started off well. Bethany and I were both able to sleep in--she a little longer than me. In fact, I had a rather difficult time walking around the house, dealing with the dogs, and cleaning, while trying to be really quiet. Joy had already left for work at UT, and I was enjoying the peace and quiet.

Bethany had not felt well when she went to bed last night, and I consistently woke her during the night for her pain medications. Because she finished her steriods the day before, she has been able to finally get a good night's sleep. That's good. When Bethany finally awoke for the day, it was past 1:00 pm, and I made her some noodles and broth. She ate a bowl of that and returned to her slumber. Or so I thought. She was in so much pain, that she really couldn't sleep at all.

I covered her up, removed the dog from her bed, quietly closed the door and continued catching up on my stuff. Joy returned from work, and we chatted and reviewed some items on Pinterest, etc. I was just going in my room to take a nap when Joy said that Bethany was calling me. Sure enough, she was crying from the pain, and I could visibly see her back spasms. I took her temp and it was 101.89. I knew that wasn't good because Bethany usually has an extremely low body temperature.

Without alerting Bethany, I called the 5th floor, C-wing at St. Vincents and asked their advice. Of course, they said to come on in. It sounded as though she was experiencing the effects of the meningitis, and that she would need more antibiotics. No kidding. I had said that last weekend when the Infectious Disease doctor said that she needed the IV antibiotics through Tuesday. When the doctor's partner ordered to have the IV disconnected on Sunday and put her on pills, I mentioned it to the nurse. I also asked to have her regular doctor consulted.

When he arrived Sunday evening, he mentioned that although he had said that she should be on IV antiobiotics through Tuesday, the insurance would only cover through Monday, and it was OK that the other doctor discontinued them altogether on Sunday; she would be fine on oral medication. Bethany has been on oral antibiotics ever since.

Well, I quickly showered and gathered a few items, and them took the dreaded task of telling Bethany the plan. Wow! She was not happy and begged me to wait until her pain med had a chance to take effect. I waited about 30 minutes, and then we just had to go. That was around 4:30 pm.

We headed straight to the ER, pillow, blanket, laptop and all, and they graciously checked us in within about 10 minutes. Ten minutes seems like forever when you have a spinal headache and back spasms. Let's suffice it to say that our ER experience was far less than stellar. Far less than even remotely good. I will say, however, that everything got substantially better when the nurse, Jude, came on board in the ER.

She actually covered Bethany with a blanket (go figure), offered a pillow; yep, we'd been there over 2 1/2 hours without a pillow or blanket; she also just took a concerned interest in her. We had been extremely blessed to have run into Bethany's surgeon's former resident, Dr. McMaster, and he was very helpful. All of Dr. Healy's residents are on a new rotation, and thus, we have all different residents, doctors, etc. YUCK! I can't even begin to say that enough because that means we have to endure the entire medication issues all over again.

Dr. McMaster assessed Bethany (because he was the ER doctor) and said that he thought it was the bacterial meningitis and that she probably has an internal spinal fluid leak. Yuck. He also immediately ordered a large dosage of morphine to manage her pain. Great. The only problem is that the nurses didn't want to actually inject the dosage of morphene into her IV. Shocker! They said they would do it in little dosages and then, if and only if, she needed more, they would comply.

Yada, yada, yada, and so we were finally admitted to the ICU. We have an awesome nurse, however, another doctor (of course, one we haven't met, and I doubt has read her previous chart) has ordered 1 mg of dilatid every 4 hours. Right. Like that's gonna work. We've tried to say this, amongst Bethany's moaning and groaning, but to no avail. I really miss Dr. Healy and his staff. Anyway, I am so putting Joe to work bugging the nurses and doctors for more pain meds, because he's gonna leave soon, and then it will be up to me to keep on the staff.

Bethany is in ALOT of pain, and they are not really giving her hardly anything because her blood pressure is relatively low. This is not good. It's at 49. Yikes.

Prayer requests:

•The obvious: that she be totally, miraculously, supernaturally healed;
•that her pain totally subside, so that she can be comfortable and even sleep;
•that we get a doctor tomorrow that will actually read her chart and realize that this kid's body needs higher doses of pain meds because her body has a natural tolerance;
•that her blood pressure lowers;
•that her spirits don't crash;
•that I am able to retain my job due to some more time off work.

Thanks so much for your continued prayers. I am passing on your words of encouragement to Bethany. Everyone who enters the room has to don a face mask, as they don't want to contaminate Bethany's fragile body. It's not that she is contagious, rather her body is frail. Her family members do not need to wear masks, as she has been around us on a daily basis.

Thanks again, Love, Shari and Bethany
Good Evening,

And that it is. I thought a lot about this song when Bethany was in the hospital. I love this; I remember when Joy told me she wanted this played at her wedding reception.

Today was yet another whirlwind of a day. I was kind of in a funk when I went to work early today. I stopped at the other campus for a while, and eventually made it back to my office in SM. Ah....if I have to go to work, at least I have a great building and a great office to come to. That's always a good thing.

No sooner had I arrived at Snyder when I realized that I hadn't heard from Bethany all morning, so I texted her to call me when she was available. No answer. Around noon, I texted her again. No answer. Then shortly thereafter, she texted that she just awoke and had a splitting headache. I told her to take some pain meds and to return to bed. She also said that her back was really, really hurting. Hmmmmm.

So, I diligently returned to work, and actually got ALOT of work completed, even though my heart was not there at all. Thank God, the sun was shining through my window, and it wasn't raining outside. Just before leaving work, Bethany texted me that she was feeling really, really sick, had a really bad headache and an excrutiating back ache. Hmmm. That was not good news.

Bethany, with all of her courage and bravado, was insisting that she was fine, and that she only needed to lay down. So, I finished up at work, as I already worked my 8 hours, and was just tying up loose ends, and went home. Joy was there with Aubrey and Seth King, our friends from Columbus, and Bethany. Bethany looked a little rough, but seemed ok. Anyone who knows Bethany, knows that she will never complain about pain and will always, always insist on participate in whatever anyone else is doing.

So, she went and laid down while Aubrey, Seth and I looked at their recent wedding and honeymoon pictures, played with the dogs; on a side note, it's sooooooo very nice now that Koda has become much more laid back and obedient. It's like it happened overnight (or while Bethany and I were in the hospital). We were all trying to figure out something inexpensive to do tonight, when I came up with attending the Walleye Game. I figured Bethany and I would stay home--given the circumstances.

Everyone was excited to go to the Walleye Game, so Joy ordered tickets online, four, including one for Bethany. What????? Bethany really wanted to go. It's wierd because less than two hours prior I was contemplating returning her to the hospital. Geesh! So, we all ate a quick lasagna dinner and off they went. I gave major instructions, along with a pillow for Bethany's comfort, and then I settled in for a nice, quiet evening.

Jonathan has been gone for a couple days, and it felt totally awesome to be alone with my thoughts. After straightening up the house, I got on FB, Pinterest, etc, and before I knew, the tribe had returned. Bethany was really, really sick and needed her bed immediately. They hadn't realized that the game would be so loud, and it was back breaking for her, as well. So much for that. She took some meds and went directly to bed. She also whispered that she wanted me to wake her at 11pm for some additional meds. No problem.

Joy, Seth, Aubrey and I sat around for a couple hours just chit chatting, looking at videos on the web, playing with the dogs, laughing, crying, etc. It was a nice visit, but we all felt really bad for Bethany. I woke her at 11pm for her meds, with a glass of milk so her stomach won't be so upset, and after requesting a chocolate chip cookie, back to sleep she went. Poor thing.

Obviously, Bethany still needs prayer for her pain. Not just for her pain management, but that her pain actually disappears. Immediately. It has no place in her life, and we want it out. Amen!

Nik is still struggling with C-diff, and my mom is still suffering from arthritis, leukemia and a horrible cough.

There are a million other prayer requests, but quite honestly, I think these three are the most critical.

Please continue to lift them up in prayer. May you be blessed and have a wonderful weekend.

Love, Shari, Joy, Bethany and Jonathan

Thursday, January 26, 2012

It's almost the weekend!!!

Thursday. Check. Friday. Soon-to-be check. Thank God. Definitely cannot take another week like this one. YES, one could argue that this has been one of the best weeks of our lives. I mean, Bethany is doing fabulously. She came home from the hospital. Life is getting back to normal. Life goes on. Yes. Yes. Yes. Having acknowledged that, I still cannot take another week like this week, and I am beyond thrilled that it is almost over.

Just when you think life is finished throwing you curveballs, Wham! Another comes flying at you in the face. Hopefully, we'll be able to relax this weekend. The house will be exceptionally quiet. Time to put on some music and catch up on laundry, cleaning and un-decorating.

Much to my dismay, Bethany was home alone today. Joy had school and work; Jonathan had school, and I had work. As I have recently learned, I can NOT take any additional days off (regardless of the number of days in my sick day bank). This entire topic has become a major thorn in my side. I mean, come on. Seriously? Just because Bethany is 18 1/2 years old, HR has to make life more difficult. I am really getting sick and tired of everyone penalizing the honest people just because others are so dishonest. Enough already.

Anyway, a friend texted me that Bethany had a really bad headache. Apparently, they were on FB. Ha. I was already feeling bad that she didn't have anyone at home to fetch meds or cook food, etc, but so be it. Once a mom, always a mom. I had really hoped that she could have a girl come over, but alas, they are all in college. And...that's always a good thing.

After work, I picked up her girlfriend, Sam, from University Hills Apartments and drove her to my home. Bethany looked rough, and had a fierce headache. Thank God, aa friend from church dropped off some lasagna for dinner. I then stopped and saw Joy at work and mentioned Bethany's condition. She had mentioned she may take Bethany and Samantha to the mall, but I suggested otherwise. Bethany is still in too much pain. Then, I proceeded to Ventura's for some girl time with some work friends. I didn't stay too long, nor did I order absolutely anything, beause not only was I totally exhausted, but I just wasn't in the mood for having fun. Still feeling the effects of the week. **sniffle**

Anyway, thanks for praying about Joy and my meeting with financial aid yesterday. It was a total blow out, disaster. God is still on the throne, and is still in control, and I am believing Him for a miracle. Although I may be done playing the game of nicey, nicey, I ultimately know Who holds the answers and am relying on Him to come through--just like He always does.

Also, thanks for praying about my meeting with HR today. My boss, Dr. Lawrence, true to style, conveyed our dismay at their lack of compassion and regard for facts. The 'guilty until proven innocent,' tactic, just doesn't seem to have any place on campus. The HR representative was extremely informative, and although I may not have totally agreed with everything and every policy, I am more than happy to comply. I am very grateful for her time, and she was extremely gracious, giving me pointers on paperwork completion, etc. Whew! I'm not through yet, but I feel I may have dodged this bullet--thanks to my boss. Thank God!

I do need to have Bethany's surgeon complete some paperwork in order for me to retain my employment. I'll drop it off tomorrow at his office, even though he is in Aruba. I guess he needed a vaca after his time with Bethany. hee hee

Well, I came home tonight and went directly to bed, coat and all. I literally collapsed on the bed. Bethany woke me at 9:30 pm so that I could drive Sam back to Main Campus. Joy offered to drive, but I didn't want her to have to go out at night in this foggy weather. Plus, she has been doing homework ALL evening. Working at the bakery, as a main campus tour guide, walking a dog daily, and taking 18 credit hours, is definitely making Joy a busy, busy young woman. Combine all that with having a boyfriend, two (three including Rosie) dogs, household and sibling responsibilities, I just wonder how she does it all.

Well, I've showered and am just enough energized to sit here and ponder why I can't sleep and why life is suddenly dealing our family some blows of late. I will say that the Lord has made His presence known on a daily, albeit hourly, basis to all of us. From friends providing dinners for us, to encouraging mail and FB posts. From texts and visits from friends, to good health. From the dogs finally behaving to having quiet family time together. Yes, life is good! Sad at times, but good!

Believe it or not, I still have some prayer requests:

•My mom was just diagnosed today with some form of leukemia. I'm not exactly sure of the specifics (I'll find out more tomorrow), but I know that prayer is needed for her white blood cell count and for her cough and arthritis.

•Bethany is still having extreme headaches; I really, really want to be there for her, but I have to go to work, and that makes us all very sad. I love, love, love my job, but sometimes the mommy in me overrules. I am so very thankful for my job, and I am so very thankful that Bethany is home at last--never to return.

•Joy is extremely busy with work and school; finances are killing us, and I know that she is totally stressing over them. I pray that the Lord relieve her of the stress of finances and work; that school becomes easier for her so that she doesn't have to spend every waking minute studying, and that she enjoy some family time with her siblings.

•Nik is still sick at home; I pray that he heals and that he is healthy enough to be able to fully participate in tennis season at school. This is his senior and 4th year of tennis, and he sooooo wants to have fun. This year has been miserable for him, and I just pray he starts feeling great.

•My niece, Autumn, is due to have a baby boy. I pray that she and her husband have an easy delivery and that my little great nephew is healthy.

•That everything goes well with Joy's financial aid, with Joy's 2010 dilemma at school, with my 'leave of absence' paperwork, and with all of the work ahead of me at home.

Thank you so much for your continued support. We love you,

Shari, Joy, Bethany and Jonathan
(Koda, Domino, Picasso and Mr. Incredible, too) lol

Wednesday, January 25, 2012

Back to normal.....if there is such a thing

Good evening,

I'm sorry it has taken so long for me to update this blog.
The last 24 hours have been busy, emotional and very difficult. Bethany is doing great, and for that, I am truly, truly grateful. We came home yesterday and she was able to sleep a bit. Her appetite is increasing, etc.

I had to go to work this morning, regardless of the fact that I still have vacation days to use, so a good friend of mine, Kathy Mannon, came over to stay with Bethany. I started at 7:00 am, and Joy and Jonathan had school, and I didn't want Bethany to be home alone. Praise God for friends like Kathy. Not sure about tomorrow. Just praying things go well with Bethany. She will have her cell phone, should she need anything, and I will only be 20 minutes or so away. I had planned on other assistance with Bethany, but sometimes the best laid plans fall through unexpectedly.

Hmmmm. Kathy said that Bethany did really well today, had an appetite, slept some and was just plain bored. Ha. A little boredom never hurt a first year bio engineering student. It's nice to see her not running around like a chicken with her head cut off. I thank God, moment by moment, for allowing her pain to be managed quite well. She is still on antibiotics for the spinal meningitis, steroids for the spinal surgery, percocet for pain, flexeril for muscle pain management, and a few other meds for sleeping aids. Wow! Who would ever know that we are actually a homeopathic family. Praise God for modern medicine and the drugs that are afforded to us because of it.

We are adjusting to life at home and at work....not what I had really hoped for, as some other circumstances have sadly changed. Joy is still at UT, but her scholarship has been rescinded through a miscommunication. My employer (as an institution) is on my last nerve. No, wait! They already trampled on my last nerve earlier in the week. I don't have any left to spare. Between Bethany coming home and adjusting to life with pain and without school, fatigue, laundry, still putting away Christmas decor, chauffeuring, Chris, Nik being hospitalized, my job, Joy's scholarship and Bethany's continuous stream of doctor appointments, I think I am going explode. Thank God for the silence of my home.

Joy and Bethany went to the rec to watch Bethany's boyfriend, Nate, play with some other college friends. I gave her strict instructions to come straight home. Bethany and Nate rented a few movies on the way home, and are downstairs chillaxing, without any particular time for sleep. Ha. The life of a non-student. She'll make up for lost academics once school begins in the fall. The life of a Bio-E student is crazy. At midnight, Joy worked out at the rec and then has been studying at Carlson library. She's on her way home now. Jonathan studied all evening for his Geometry test and is now asleep. I slept for a few hours when I returned home from work. I am still trying to get my days and nights repaired from being in the hospital and waking every 30 minutes or so. 6:00 am comes early though when I want to be at work by 7:00 am.

Please continue to pray for Bethany's complete and total healing. She has long term nerve damage that takes a daily toll on her life. We were hoping that this surgery would yield some positive results in that area, however, it has yet to be proven so. That doesn't mean that the Lord can't provide a miracle and have her have a delayed reaction. Amen!

Also, please continue to pray for Bethany's pain management, that she isn't too depressed, and that she is able to function as a normal 18 1/2 year old needs to. That this time in her life is used for good, for rest, for God's work (whatever that is), and that she is able to find a sweet, sweet peace.

More prayers are continually asked for Nik, Chris' son. He was released from Bellevue Hospital this morning, after spending the night. He has been suffering from C-Dif, a horrible disease, since early Nov, and relief does not appear to be in sight. He had 4 units of blood to combat a severe case of anemia, and he has lost upwards of 20 pounds on his small frame. Please pray that he is completely, totally, miraculously, instantaneously healed and that he will be able to enjoy his Senior season in Tennis.

Please pray for Joy and I, as we have a meeting with the Director of Scholarships at UT. She has not been friendly, at all. In fact, she has been extremely dismissive of our emails. After numerous 45 minute waits on the telephone, I had to use a friend of a friend of a friend's name in order to even get an email response. Goodness, whatever happened to a student centered environment. Please pray that she actually hears what we are saying and considers our plight.

Also, please pray that when we approach President Jacobs (or someone on his staff( next week, about Joy's 2010 assault, that someone finally takes definitive action on Joy's behalf. Goodness, the perps are still on campus, and still making harassing innuendos. Just a bit tired of playing nicey nicey. Mamma grizzly is a coming out, and it ain't purty.

I realize that this is a lot of prayer requests, however, I am feeling rather needy tonight. I am generally a rock of Gibraltar, but not tonight. Kind of feeling the weight of the world. I thank God for His ever present goodness in times of trouble, for showing me that He is always there and always will be. I thank Him for sending me a check in the mail, from two near and dear friends in Detroit. It's just reinforcing God's goodness to me during this difficult time. I also thank Him for my friends and family and for my job (assuming I still have one after a meeting on Thursday). Oh yeah, please pray about that meeting, too. Thank God, I have a wonderful boss who has my back when others don't appear to. Geesh!

Anyway, enough ranting for now. Thanks everyone, we love you and appreciate you all.

Love, blessings, peace and joy, Shari

Monday, January 23, 2012

Yes, today has been a whirlwind. From not sleeping at all last night, to pulling our lazy bodies out of the bed and recliner chair, to packing up and saying our good-byes, to heading home and then to work; it's been busy and rest is sweet.


It feels so good to be able to actually lay on my bed, and I'm positive Bethany feels identically, if not even moreso. Ha. It's just great to be home again and to be eating home cooked food--from the Bursons, Szymanskis, Walshs (twice), Mannons, Deals, Shermans, etc. We can't even begin to thank you enough. It was so nice to be able to go to the refrigerator and actually have some edible food. Bethany had specifically requested that Joy and Jonathan do NOT eat the Potato Island dish that Kathleen Walsh made, because she wanted it. Sure enough, the kid without absolutely any appetite, just ate two bowls. Woo Hoo!

We want to say a special thank you to Bethany's cousin, Heather, who stayed with her through thick and thin, and was such a blessing to our family during this time. We love her immensely. Also, a huge, huge thank you to all of the nurses and surgeons and doctors at St. Vincent's for all of their expertise, kindness, compassion and care that they gave us. It made all of the difference between surviving and thriving. We were actually able to thrive knowing that the medical staff were 'on our side.' Thank you. You are all truly credits to your professions.

Lastly, thank you to the Geography and Planning Department and to the Urban Affairs Center,for so graciously accepting that I needed to be away from the University for an unspecified time. Their compassion and support has made our lives much, much easier.

I will continue to update this blog daily. Thank you again, everyone.

Love, Shari, Joy, Bethany and Jonathan

Two hours and counting.....

Good Morning, It's 11am, and Bethany is supposedly going to be discharged at 1pm. Woo Hoo! Yesterday was a very long and painful day. We have both experienced many worse and many better. Bethany had numerous friends come visit, and that was nice. She has missed her friends, and has been allowed very few visitors. I was able to go home and shower and do some laundry for a few much needed hours. When I returned, some of Bethany's college friends were visiting for another hour or so. That was nice.

Then, the evening ritual of attempting to fall asleep. The nurse came in and gave her an Ambien sleeping aid at 9:00 pm, then nebutol at 11:00pm, 12:30am, 2:00am, and thus the night of very little sleep. Bethany refused to have another dosage as it was making her sick, so on with the moaning and groaning. Thank God for morning, when she was finally able to get a few hours of much needed rest. As was I.

We are currently in the throws of waiting for her last antibiotic and steroid at 1:00 pm, and then we will be able to leave. We are all packed. I had originally planned on working this morning, but it hasn't worked out. Unfortunately, I received an email from Human Resources that wasn't too positive. Thank God, I'll be able to return to work tomorrow. Bummer that I am not independently wealthy or at least get more than two weeks of vacation a year. Ha Ha.

My dear friend, Kathy Mannon, has offered to sit with Bethany tomorrow while I return to work; I am not yet sure if I am going to take her up on her offer yet. I have to wait and see how this afternoon and evening go.

Please continue to pray for Bethany's complete and total healing, Chris' son, Nik's, having a medical procedure today to determine just why he has been so sick for the past couple of months. Please pray for his complete and total healing, as well. For Joy and Jonathan's studies at school, and for my employment.

Thank you very much, and I will continue to update this blog on a daily basis, if not more. Love and joy, Shari and Bethany

Sunday, January 22, 2012

Joy comes in the Morning...

Good afternoon,
Bethany had another sleepless night, as did I, but for different reasons. ha. She was, however, able to sleep a few hours this morning. Thank God. Her pain is definitely being managed, and we are both more than ready to return home tomorrow. It won't be until late afternoon because she needs to have her IV antibiotics at 3:00pm. It's in 12 hour increments--3:00am and 3:00pm. Then, we'll be heading home. Thank God (many, many times over).

Bethany awoke this morning to three of her friends from school visiting her. Sam, Matt and Jeremiah. It was great seeing them and sharing in their life-stories. It seems as though virtually everyone is either sick, or has been sick recently. Nonetheless, we are planning on Bethany having a good day, too. She just finished lunch, and will be up and walking when I am finished typing. Joy and Jonathan are on their way to the hospital, and then I will go home, shower, wash some clothes, regroup and return this evening for one last night here.

Both Bethany and I are looking forward to sleeping in our own beds and resuming some sort of normalcy to our lives. Some people are able to handle stress, sickness and abnormality better than others; thank God, we are two of those people. It totally compounds the stress when others around us can't. Thus, my recent changed relationship status. So sad, but God knows. Hope, faith and courage--a great mantra we've been living of late.

Again, thank you so much for your continued prayers of health, love and support. We covet and appreciate them. Please don't forget to keep my mom in your prayers, and Chris' son, Nik, in your prayers, as well.

Blessings, Love, Shari and Bethany

Saturday, January 21, 2012

Good Morning,

Well, Bethany has had another miserable night and morning. After a pretty good day yesterday, this is very disconcerting and frustrating for her. She has spent a lot of time crying, as her stomach is in a lot of pain. She cannot seem to shake it. Her back and legs feel good, but that stomach. She isn't on hardly any pain medication, Thank God, but it's not so much that. She wants to take some percocet, but it really, really irritates her stomach. So....

We are waiting for her breakfast. I have ordered her oatmeal with the thinking that the milk and oats will coat her stomach enough for the percocet to be able to settle and not irritate her stomach. She has gotten up to use the restroom a few times, which is always good, however, she just can not sleep. What's up with that? I mean, when I'm tired, I can sleep standing on my head. Goodness~

We are making plans for our escape on Monday. Just kidding. Her actual surgery, and all that that entailed, is accomplished, great, complete, healed, etc. It's just that her Infectious Disease doctor said that she needs to remain on antibiotics through Tuesday. Because insurance will only cover through Monday, I guess she returns home Monday. Woo Hoo! We are absolutely thrilled. (OK, at the moment, Monday seems rather far away, but we know it's only two days) Given the pain that she has been in all night, I am glad she is still in the hospital.

We are believing that today will be a great day. When I look at Bethany and at the surrounding circumstances, my flesh says, "Today will be lousy." When I look at the Lord, however, His Word and His Hope, my heart says, "It will be lovely." Even though Bethany has been having some relatively good days, it's been a rough, roller coaster of a week. She was extubated, has had ups and downs, I've had to return to work 1/2 time (full time next week), and just some unexpected events.

We are truly looking forward to the normalcy of life, relationships, family, friends, work, etc., asap. Thank you very much for your continued prayers for Bethany Rose. They are greatly appreciated and coveted.

Friday, January 20, 2012

Another Day, Another....Umm. I don't know.

Good Morning,
Bethany had a very good day yesterday. She had all of her monitors removed and was able to walk around (albeit very slow baby steps) the floor, sat up for over an hour in the recliner chair, and walked around the room a bit. By the time I arrived, after work, she was still sitting in the chair, while Joy and Jonathan were passed out on her bed. It was around 6:00 pm, and I had come directly from work. After I got the update from Joe, Bethany traded places with her siblings. She was exhausted and was waiting for her dinner to arrive. She had wanted to eat upright, but it just wasn't able to work out that way.

She ordered chicken tenders and fries; she had also wanted some fish sticks, but she wasn't allowed to order two entrees. So, I went downstairs with Joy and tried to buy some. The cafe didn't have any, but the nurse was sweet enough to order her 1/2 an order. It was really difficult to get her to wake up to eat. But, she was ate to able a little of everything. Praise God!

Bethany slept the rest of the night. Grrr. She was only on Perocet, and she showed it. Her back was having some muscle spasms, and her catheter was giving her a lot of trouble, but she was able to get some sleep. Bethany moaned virtually all night and was even murmuring some. She is very frustrated because she still feels lousy. The nurses were extremely excited about Bethany's accomplishments yesterday, and they mentioned numerous times that she could probably go home tomorrow (today). Hmmm. Her dad and I totally disagree. She's in too much pain. Just the mention of going home brings Bethany to tears. In theory, she would love to, but in practicality, she knows she shouldn't.

After being awake the majority of the night with Bethany, she received a percocet around 6:30 am. The nurse didn't really want to give her any if she could sleep through her pain. I don't know if I agree with that or not. Nonetheless, she was still sleeping when Dr. Healy arrived this morning. He said she was doing well, her incision was still dry. She needs to continue eating and walking, have the foley taken off, have the liquid nutrition discontinued, and then she could go home. That's great news, however, all we wanted to do was sleep.

She just received a shot in her tummy and cried and cried from the pain. She is definitely sick and tired of being sick and tired. As am I for her. I am scheduled to go to work again today, but I can't bear the thought of leaving her here without being with her. I may just have to take another day off. I'm waiting to see how things progress.

Her breakfast just arrived, and she was able to eat a little oatmeal with milk and brown sugar. He had to eat something because her stomach is extremely painful, along with her head and hips. Her pic line has not been working, so she had an IV inserted yesterday. Unfortunately, however, her pic line is causing her a lot of pain, and she prays they are able to remove it. We have to speak to the Infectious Disease doctor first to find out his intentions with the pic line once she is released. The very sweet nurse, Jane, said she could have a percocet if and when she ate something. Otherwise, it would totally upset her stomach.

Bethany is still sleeping, in a daze and has been extremely difficult to awake. Other than her moaning, I would swear she was totally asleep. I am torn between work and here, and only time with tell my decision.

--that they don't send her home too soon
--that her pain is supernaturally alleviated
--that she feels comfortable and happy
--that she continues to heal
--that her pic line is removed

--that Bethany has healed as much as she has
--we are nearing the home stretch

Thanks so much for all of your continued prayers and support. A huge shout out to Kathy Walsh and Sharon Szymanski for making meals for Joy and Jonathan. I can't even begin to tell you how grateful we are. Also, to Cathy Burson who is making a meal for them tonight. Hallelujah!

Blessings, Shari and Bethany

Thursday, January 19, 2012

And a good night.....

Good Morning, Bethany had an extremely peaceful night last night. Although she spent more time awake than asleep, it was still peaceful. She tried to sleep for hours, and finally, the nurse provided a sleeping aid. That may have helped sooner had Bethany decided to get off the laptop prior to 7:00am. I had to threaten bodily injury (just kidding) in order to get her to put it down so that the pill may actually do its job. ha ha

Dr. Healy arrived this morning, and gave an excellent report. Provided Bethany can get up and moving today, eating and walking, she will be allowed to go home very soon. Yaay! I have to go to work this morning, but I am hoping to return as soon as possible.
I am really, really tired because, not only did I go to bed really late, but I couldn't sleep a lot of the time, and was awakened by the countless amount of interruptions during the night. Our nurse was totally awesome at being quiet and interrupting the least amount possible, but it is what it is, and I am so feeling the effects of minimal sleep.

I am anxious for Bethany to be able to get up and walk around today; shower, eat and retain some order to an otherwise orderless lifestyle. Ha. I know she wants to get outta here asap, to. Bethany is resting now, while her breakfast awaits her. I'm hoping and praying that she can eat at least one pancake.

Thanks for all of your prayers, fasting, interceding on her behalf. We know that they are being heard and answered. Amen.

It was a very good day

Yaay! Bethany had a very good day. We awoke to Dr. Graber coming in to assess Bethany. He asked a couple of questions, and back to sleep again. So nice. Then, Dr. Healy and his team of medical staff arrived to assess us, too. We always look forward to this time; unfortunately, sometimes we can't remember too much because he arrives at an ungodly hour. I guess some people have to finish their rounds early so they can do surgeries before the sun rises. Just kidding.

Dr. Healy said that Bethany's incision looked really good. I believe 'dry' was the actual word he used. And DRY is VERY good. In Scrabble, it may only be a three letter, low point word, but in the world of spinal surgeries, it is a multi-million dollar word. Bethany was quietly moaning, as she has been doing a LOT of lately, and Dr. Healy thought that today should be the day that she not only gets her staples removed, but that her TPN (nutrition) IV be diminished (and eventually altogether stopped), she should get out of her bed and moving, and she should begin eating something solid. All of these things should get Bethany's body back in condition and thus, allow herself to heal.

We were very happy to hear everything, and so the day began. The nurse also mentioned that we would be moving from ICU to the regular floor. Woo Hoo. Thus, I readied ourselves for that, just in case it would be within the next 10 minutes or so. Shortly thereafter, Dr. Glick arrived and removed all of Bethany's staples (sans the two recently put in her drain incision). Pain free--I may add. That's always a good thing. The nurse then gave Bethany a medication boost (an occasional boost of Dilatid when the regular dosage doesn't seem to be quite enough), and she began to rest.

I knew that Joe would be arriving about 10:30 am to relieve me so that I could go to work for 4 hours, so I needed to get Bethany up before I left, just in case she didn't do too well. Ha. I was wrong, as usual. Nurses Gigi and Tami and I helped Bethany to the recliner chair. Then Tami and I changed the bed sheets and pillows, etc, and asked Bethany to stay in the chair for 15 minutes. It was an extremely long 15 minutes for her because sitting upright hurt her head a lot. She was, however, able to rest her head on the head rest and did quite well, all things considered.

While Bethany was still sitting upright, I left for work. It was an eventful day at work but, from what I hear, not nearly as eventful as Bethany's day at St. Vs. Ha. She sat up later in the day for 30 minutes. Wow! That was a huge accomplishment. And....to top things off, she also ate about 1/4 of a bagel with creme cheese. YES!
The nurses also had to insert another IV, as her PIC line was acting up. Go figure.

When I returned around 6:00 pm, I learned that the Infectious Disease doctor said that Bethany was doing really well, and would only need the IV antibiotics for another 5-6 days. OK, now realize that I am going on what Bethany told me. Bethany--whose been on drugs for 22 days now. So....although I totally believe this, I am anxious to hear it directly from the doctor's mouth. I was going to say, 'directly from the horse's mouth,' but then I thought the doctor may take offense, and goodness, I wouldn't want that. He's way too nice for that.

Speaking of which, a little birdie told me that the hospital administration is slightly concerned about this blog. They needn't be at all. We have absolutely loved the care and treatment that Bethany has received while being a patient here. If we didn't like St. Vincent's and their Medical Staff, we surely wouldn't be here for the third time. There are way too many other hospitals, in the Toledo area, to choose from. Fortunately for us, however, Dr. Healy and his team of doctors and nurses (Drs. Glick, Graber, McMaster, Nurses Chris, Holly, Meghan) are at St. Vincent's. We wouldn't have it any other way.

During my 49 years on this earth, I have been a patient at many, many hospitals, but never have I received even 1/2 as nice of treatment as Bethany and I have received at St. Vincent's. Having said that, we love, love, love our nurses, and will truly miss them. I hate to even begin naming them because I know that I forget some, but I'll try. I'm sure I'll add more to the list tomorrow. Gigi, Mary, Lindsay, Karen, Jaime, Michelle, Brittany, Amber, Nurses Aides Laura and Ginny. OK. I'm having a moment, and I can't quite remember any more, but I will. I promise.

Well, Bethany was sleeping on her stomach when I returned to the room. She looked uncomfortable, but was rather comfortable. Within 15 minutes of my arrival, she was moved from ICU to a regular room on the floor-C wing. Yes. Moving a hospital bed, with a patient from Neuro ICU, can be quite challenging. It's rather difficult to do without bumping the bed around, thus causing the patient a headache. Nonetheless, the nurses did quite well. They did, however, still need to administer another boost of Dilatid.

Joy and Jonathan arrived with an Empire Chinese Restaurant takeout of Chicken Fried rice for Bethany. And.....drum roll please....Bethany ate a small dish of it. That's a huge deal. It's always good to see Joy and Jonathan, as I really, really, really miss them. I can't wait to return to our normal life, with all three of my teenagers back living at home and me going to work every day. Never thought I would say that I would miss going to work. ha. After Bethany ate a little, she decided to work on her laptop. OK. Work is rather a misnomer; she played on facebook. Like mother, like daughter, so I guess I can't complain. My only issue is that I had to just sit in the dark, no light, no TV. I tried to read, but with only minimal light, it was too exhausting, so I just fell asleep.

Two of Bethany's friends, Kaylee Elliott and Kristen (from soccer) came by for a short visit, so I woke up and visited with Bethany and the girls for a bit. When they left, Bethany 'worked' on her laptop some more and then retired. I went to the lobby to call Chris and set up plans for tomorrow. It seems as though all of dates revolve around cafeteria food and TVs in the 5th floor lobby. Ah....such is our time together. To quote Chris, "We really are due for a true date night." Upon returning, Bethany was still trying to sleep, so I am finally writing this blog.

We totally realize that the ONLY reason that Bethany is doing so well is because of the prayers of the Saints. Yes, a great surgeon and medical staff never hurt either, however, it's the God of the Universe that created these specialists and who gave each and every one of them the knowledge and wisdom they have. So....ultimately, it's on God's shoulders, but I would totally be remiss not to thank Dr. Healy and the 5th floor ICU and C wing staff.

We continue to have prayer requests though, so please don't stop praying:

•For a continued and complete healing of Bethany's back, bladder, hips, neck, etc.
•For Bethany's pain to miraculously end
•For Bethany to regain her appetite and be able to eat without vomiting
•For Bethany to be able to walk and move around, unhindered
•For Bethany's boyfriend, Nathan, to be completely healed of meningitis and be able to carry on with his life and attend classes in a normal fashion
•For my mom's to have a total healing. She is currently sick with a fever and has some leg issues and arthritis
•For our lives to regain some resemblance of order

AMEN and Thank you. Love, Shari and Bethany

Wednesday, January 18, 2012

A very long and yet, a very short night

Well, it's 6:20 a.m., and Bethany has been awake moaning and groaning for hours. Her upper back is extremely painful. She has been lying on her back all night, however, that seemed the least painful of positions. With so many medical cords hanging from her arms, it seems virtually impossible to get comfortable. The nurse allowed me to remove her leg cuffs last night, but I realize they should be replaced soon. Bethany does not like them because they go off every 2-3 minutes (I think),and whenever I am able to remove them, for a break, they are drenched in sweat. I did, however, cover them in baby powder so they would be comfortable.

It's so very sad to hear her painful moans and groans, as they are turning into cries. We are anxiously awaiting her surgeon to come and assess her this morning. His resident doctor, Dr. Graber, has already positively assessed her. Medically, things are definitely progressing in a positive direction. MOST importantly, her incision is totally dry, and it has been since removing her drain (and even before). The real and imminent issue is, determining the cause of her extreme pain and her pain management. The longer she is in bed, the more potential for additional problems.

She has yet to eat anything in 12 days, however, she is still on a TPN drip for nutrition; she still cannot sit up at all or she gets an excruciating headache. She is unable to swallow pills for two reasons: her throat hurts, more and more daily, from the ventilator tube having been down her throat, and she is constantly nauseous and can't keep anything down.

She is becoming increasingly frustrated as the days progress. She entered the hospital December 27 and has been here 22 days. That alone is exhausting and disconcerting. She has yet to see the light at the end of the tunnel; the only light she is seeing is the lights of an oncoming train. I am encouraging her daily with the positive medical news, but it is difficult for her to wrap her head around when she is still in so much physical pain. Her body can only take so much. She has lost so much weight that all of her body's pressure points ache and are extremely painful. She was thin to begin with, but now she is skin and bone. The TPN nutrition IV has allowed her face to fill out again, and she doesn't look as pale as she did. Thank God!

Nate is still under the weather, and we are awaiting permission for him to visit. We don't want to expose Bethany to absolutely any germs, thus, he may not be allowed to visit. Dr. Healy just left, and again, I forgot to mention/ask his thoughts and permission for Nate. Uggh. My brain is sometimes on vacation.

Update: As I just said, Dr. Healy and his team, have just assessed Bethany. It is great news that her incision is still dry, and we expect it to remain that way. His nurse, Chris, is going to remove the staples, as they have been in long enough. Woo Hoo! They are also going to remove her TPN nutrition drip; my thinking is so Bethany will begin regaining an appetite. His instructions today is for her to get up, walk, eat, and begin acting like a normal girl again. We are also going to be moved from ICU to the main floor. As much as she doesn't like being in ICU, we both love the nurses and staff here. They are exceptionally attentive and compassionate in every way feasible.

The nurses on the main floor, were just as much. Absolutely no one could have done anything more than they already have regarding Bethany's care, and we know, beyond a shadow of a doubt, that she has been receiving the best care possible, without exception or doubt. Bethany cannot say enough good things about her doctors and nurses. (OK, except for that snafu with the one nurse, but absolutely everyone is entitled to an off night occasionally--:) )

I am planning on returning to half days of work this morning/afternoon, however, I am not sure that today will be the best day for that, given the fact that Bethany is going to attempt to be mobile. I am happy for her that she will be moving from ICU, if for no other reason, than to encourage her mental status. Really folks, things could not be looking much better, other than the fact that her back really, really hurts. Dr. Healy said that the pain should subside shortly after she begins walking around and moving her body a bit. Anyone who has been in a bed for 21+ days is going to be in pain.

So, today's goals are: get up and move around; change rooms; ditch some of the monitoring devices (that's Bethany's goal for when she changes rooms); eat something. Anything. Progress, progress, progress.

Again, thank so much for your constant and consistent prayers. They are truly coveted.

Blessings and peace, Love, Shari and Bethany

Tuesday, January 17, 2012

Soon and very soon

Well, all things considered, Bethany had a very good day. Actually, it was one of her best yet. The spinal cord drain was removed, and the nurse used a staple gun (yes, it was eerily similar to Home Depot's, but it wasn't orange) and proceeded to staple her twice, without any anesthetic. Geesh! It really, really hurt. Not only does she have a 10" incision that is still healing, but she also has two drain incisions that are relatively fresh, along with a host of other incisions, and such, and still....they opt to not give her a local anesthetic.

When she received staples the first time, the doctor (Graber) did not give a local. The second time they were stapled in her backside, the doctor (McMaster) did. Thus, he was our fav. Now, the nurse didn't. I promised Bethany that, should she ever require more staples, it will NOT happen without a local anesthetic. Goodness! to top it off, the staples didn't even work, and they wanted to use two stitches instead. Not! They called our surgeon, Dr. Healy, who basically said to leave Bethany alone for now. (hee hee)

After recovering from that with a boost of Dilatin, she rested for a while. She still hasn't eaten and has drank very little for over a week. She is, however, continuously receiving IV nutrition and lupids. Bethany is still in a lot of pain, and no one can seem to figure out why. It is extremely disconcerting that she on so much pain medication, and no one knows why. They have ruled out virtually everything, or so it would seem. But....thank God, they are still looking.

After the nurse woke her up to receive her shot in the tummy (yuck), finger poke, and some meds, she slept a bit longer. She has been really sad and frustrated for many reasons: she feels like crap, she is constantly being poked and prodded, she can't see or talk with her boyfriend (she has severe laryngitis due to the ventilator), her vision is blurry, she feels as though she's in a fog, she can't handle absolutely any light and very little noise, and yada, yada, yada. She is not complaining at all, but she is so sad that she just bursts out crying about every hour or so.

She is now trying to sleep, but her nausea is a constant presence. The med they will administer at 10:00 pm will not only help with her nausea, but it will also make her sleepy. That's good. I'm going nuts without any light to read, no TV to bide my time, and this recliner. Although it's relatively comfortable, I really want my bed.

A shout out to Pastor Tim and Shelly who invited Joy and Jonathan over for dinner with their family and to hang for a couple of hours. They thoroughly enjoyed themselves. You know their kids are sweet and obedient when the first thing that Joy and Jonathan said, when I asked how their dinner/evening went, was, "Pastor Tim's kids are so sweet and so obedient, Mom." Gotta love that! My kids are identical to me in that we totally appreciate well behaved, polite and kind children. Great job, Sherman's. Oh yeah, Jonathan also told me he had 4 (yes, I said FOUR) helpings of dinner.

Thank you, everyone for continuing to pray for:
--Bethany's total and complete healing and recovery;
--Bethany's mental health, too;
--Wisdom for the doctor's to diagnose what has been causing her pain;
--No more crisis

Blessings and peace to all, Love, Shari and Bethany

We're in the Home Stretch

Good Morning,
Bethany had a really good afternoon and evening yesterday. She was awake all day yesterday and looked extremely exhausted, yet she just couldn't fall asleep. Just plain uncomfortable. She never complained, but it was just sad to witness. In order for her to be remotely comfortable, she is completed drugged--fully conscious, able to hold a conversation, but very lethargic. She is very frustrated when she wants to text because her vision is very blurred and her hands don't cooperate. I've had to take her phone away because she ends up crying in frustration.

Mary, our nurse, gave Bethany numerous sleeping aids, and they would work for a little while, and then she would awake. When the doctors came this morning, they advised her sleeping aid be doubled. She then slept until 10:30 am. Which, in turn, means I slept until 10:30 or so. Ahhhh.

The doctor also said she looked good (tell me something I don't already know), and that the nurse should clamp her drain around noon for 30 minutes. After the 30 minutes, the drain will be removed, and we'll pray for the best. Woo Hoo! I am definitely expecting the best case scenario.

Thank you so much for your continued prayers on Bethany's behalf. We know that the Father of the Universe is holding her in His arms and intervening on her behalf.

Blessings and peace, I will keep everyone posted again this afternoon,

Love, Shari and Bethany

Monday, January 16, 2012

Kickin' the devil's butt--Big Time!

Well, Bethany, through the prayers of the Saints of God who have been constantly praying for her, have definitely kicked the devil's butt--big time! Today has actually been a whirlwind.

I awoke to Bethany crying and crying, gagging and flailing. She was definitely in pain and could not express it. She was also frustrated with the tube down her throat. Little did I know, but the nurse had turned off her sedative IV 45 minutes prior, so Bethany was feeling all of the effects of having the tube down her throat. Yikes. No wonder she was crying and gagging. The doctors were attempting to see if she could breathe on her own. She could.

So, after about 90 minutes of this, the doctor was called for extubation. Unfortunately, he didn't believe the nurse that Bethany was actually typing on her laptop. I was using the laptop as a distraction to her pain--and it was actually working. The doctor arrived another 30 minutes later and confirmed her vital signs and the fact that she could breathe on her own. Thus, she was extubated and the tubes were removed.

All of Bethany's vital signs are perfect, her blood, cultures, MRI, CT, cat scans, X-rays=ALL PERFECT. Her pain is diminishing, however, she is still on TPN drip (for nutrition) and the PCA for her 2 mg of Dilatid every two hours. She is breathing well, is relatively happy, except for the occasional tears, and has a searing headache.

Bethany's boyfriend, Nate, is at home recovering from meningitis and is unable to come visit. This is totally distressing the both of them. He is, however, on the mend and feeling better as each day passes.

The plan for later today or tomorrow morning is to remove her remaining drain--that is, assuming her pain is able to be kept under control.
The PCA IV seems to be managing her pain quite nicely, however, we are still not allowing visitors because of the stress on her central nervous system. Bethany does not remember anything about this weekend or this morning--Praise God, however, I have taken a few pictures for her to realize just how close to the brink of death she came, and what a miracle she is now.

Along with changing Bethany's warm compresses on her head every few minutes, Chris and I are just sitting quietly in her room. We can't talk or even whisper. Ha. Just sitting and staring at each other. Ha. I have the luxury of typing in the blog.

Thank you so much for all of your prayers. They have been heard and have been, and are being, answered. I will continue to write more later today.

Blessings, Shari and Bethany

Peaceful evening, rough morning

It's 8:00 a.m., and it's been a rough couple of hours. Bethany was awake on and off all night and in distress. It is tough to watch her struggle, knowing that her facilities are all in tact, yet the medical equipment has taken away her ability to speak. She has been crying for about 2 hours; I know that her tummy hurt, but I couldn't figure out what else hurt. I keep asking yes or no questions and she is able to nod or shake her head.

I asked questions about her entire body. "Does your head hurt, eyes, neck, back, stomach, legs, feet?" The poor girl hasn't gone to the bathroom in over a week, so I knew that would be hurting her stomach. But there was something else, and we couldn't figure it out. Along with all of the medical equipment, she was complaining that something else hurt. She was getting frustrated and kept attempting to pull her wrists free from the straps that are holding them down. They are merely a precaution so that she doesn't pull out her ventilator tubing.

The more frustrated she became, the worse her vitals got. Our awesome nurse, Michelle, was so helpful in helping Bethany to relax and calm down. Then she would leave the room, and Bethany would get all worked up again. I would soothe her and voila. It was just a vicious cycle. I finally started at her forehead and worked my way down with the questions. Her catheter was hurting because the nurses had been moving her around. Ah...problem temporarily solved.

She's finally resting comfortably, until they come in her room in 30 minutes, wake her up, check all of her vitals, ensure she obeys commands, thoroughly awakens her, and then leave again. When Dr. Healy arrived this morning, he said that he would like to extubate her this morning. Yes. He wants to run a set of cultures before doing so. All of her cultures returned negative over the weekend, but he just wants to be careful. I love the conservative approach.

Well, I better be signing off so I may return to some much needed slumber. I will write more later. I'm totally exhausted and falling asleep while writing.

Blessings, thanks and joy,
Shari and Bethany

Sunday, January 15, 2012

There could never be a more beautiful Bethany Rose

Well, today has been the best day, by far. The doctor had Bethany put on a PCN, whereby she is receiving 1mg of Dilatid every hour, throughout the hour. After the initial boost of Dilatid, she has been managing well all day. She's woken up a few times, opened her eyes (with much effort), squeezed hands, wiggled toes, etc, and can understand commands. When I have asked her if she was comfortable, she responded affirmatively. That's awesome.

Her vitals have been the best that they have ever been; all of her cultures (blood, urine, etc) have returned negative; her drain and incision are totally dry and without leaks; she is not writhing in pain. She is not only on the PCN, but she also has a TPN drip (nutrition), a sedative drip, a catheter and a drain. Yes, it's been a good day. Bonnie left early this morning, for the airport, to return to Texas, while my sister, Debbie, came for the day to keep me company. Little did I know that Chris was surprising me a little early, and they arrived at the same time.

Shortly afterwards, Joy, Rob and Jonathan arrived, and then Heather, Joe and Lori. Chris and I went downstairs to de-compress, and everyone just whispered about Bethany's progress.

I've learned a LOT today and throughout this entire ordeal. I should that I have not only learned a lot, but also a lot of what I already knew has been reinforced:

•God is good all the time; no ifs, ands or buts about it; He is good all the time;
•God may not give you the desire of your heart at the moment, but He will give you what is best for you;
•Just as courage and strength are innate within a lion, they are truly innate within Bethany Rose;
•Heroes come in all sizes, including that of a 18 1/2 year old, blonde haired, blue eyed, sister, cousin, daughter and friend, Freshman child of God;
•God will make a way when there seems to be no way;
•This experience, albeit difficult at best, will make everyone involved stronger.

I am looking forward to getting a good night's sleep tonight, as I am sure that Bethany will, too.

Blessings and peace, many thanks,
Shari and Bethany
This about says it all....

Last night was a seemingly good night for Bethany. Although thoroughly sedated, she seemed to have slept the majority of the evening. She has a new (former Marine) nurse, and to be quite honest, I do NOT like his demeanor, bedside manner or attitude at all. So very glad this shift is over. I have quietly requested that he NOT be Bethany's nurse again.

On a good note, the doctor arrived early this morning, and noted that Bethany's heart rate and respiratory numbers appear to be better than they have been since she arrived. Her heart rate was 89 (at the time); this leads us to believe that she is resting comfortably and that she is experiencing less and less pain. He also said that instead of giving her 2 mg Dilatin and Fentinol every 2 and 3 hours, he was going to put her on a PCA of 1 mg Dilatin every hour. This will allow her to receive a more steady stream of medication throughout the day. This is really good news because then we don't have to rely on a nurse to give her the medication. It will be through an IV drip.

In the hour since he left the room this morning, Bethany's numbers have risen. I know she is still in pain, because I talk quietly to her, she cries. It's difficult for her to even move her fingers or toes because she is so sedated, but it's even worse when she is in pain. It breaks my heart to know that she is unable to express and that we have a seemingly heartless nurse. I can't wait for the new nurse to come in. I really am praying that they put her PCA in asap, before her pain level gets so high that it becomes unmanageable. I can tell that her pain level is rising as I am typing, and I think MY blood pressure is rising.

The doctor also said that they will begin feeding Bethany through a feeding tube through her nose, instead of relying on the pic IV line. I guess that's good news. I really don't know, other than it will probably nourish her more. :\

Yesterday was another extremely rough day. Praise God, for my sister, Bonnie, who has stayed all week with me. She is preparing to leave for the airport to return home and she will be sorely missed. We are not telling Bethany that her aunt is leaving, as it will totally distress her. Fortunately, my sister, Debbie, will be coming from Walled Lake, Michigan, to spend the day with us. Yaay!

It was great seeing Joy yesterday, as she was able to spend quite a bit of time in the hospital room. OK. I slept most of the time, but it was nice to see her nonetheless. Joy went to the airport last night, with her boyfriend,Rob, and picked up Jonathan who was returning from his missions trip to Jamaica. I couldn't wait to see him, so they stopped by the hospital rather late. Again, that got on the nurse's nerves. They stayed all of 4 minutes and whispered the entire time. I am looking forward to hearing about his trip today and seeing some of photographs that he took.

I just noticed that Bethany's numbers are stabilizing. That's better news. Well, thanks again for each and every prayer that you have and are lifting up on Bethany's behalf. They are greatly appreciated and coveted.

Prayer needs:
•Immediate and consistent pain relief
•That the PCA really manages her pain well
•Bethany is totally, supernaturally healed
•Bethany stays sedated so that her body is given more time to rest
•That Bethany is not sad or afraid

My major two concerns is for her fear, pain and sadness. Whenever I whisper to her, she tries to cry, and it is so very sad. I can tell that she is afraid, and I am having a difficult time dealing with that.

Love and peace, Shari and Bethany