You have a brain! (from Amy)

On the roller coaster of recovery today started out a down day...

Melissa woke up in a bit of pain today after they started her back on Coreg last night. They decided today that the switch was made too quickly and was causing her quite a bit of pain. Needless to say they switched her back to her milernna-ma-nanana (as it sounds to me :o) ) They are going to try taking her down slowly (Like the kiddie roller coaster hills!) and get her back to the coreg in a day or so.

In the midst of all this she had a CT scan of her head because the Doc was a little concerned about some vision abnormalities Miss was having. This evening he popped in just to say "Your brain is normal!" It has been encouraging to all of us how knowledgeable and proactive her Doc has been through this whole whirlwind. He assured her that tomorrow would be a better day.

Already this evening has been better...nothing a little sweet and sour chicken can't fix! ;) Tonight Missy walked a third of a mile and has gotten many compliments about how great she is looking and getting around...even on a tough day!

On another note the family has been learning how to keep up with Missy's recovery and we have been training up on getting her in and out of bed, going for walks, and changing her bandages. Here's a pic of the tutorial Ray and the nurse gave me on changing her cord dressing...I think blue is my color!

Continued thanks for all the love and support. We have all been blessed!

A Great Start to the Day! (from Ray)

Great news - no more tubes (other than IVs of course)! AND Missy took her first full lap around the floor this morning!!! I arranged with my boss to work from the hospital today, so I got to stroll with her. :-)

Missy sends a big THANK YOU to all who have visited her here at OSU. You have truly been a blessing to both of us. Now that she's feeling progressively better, she'll most likely be up for more visitors. It's a good idea to call one of us first, though, just to make sure she's up for extra company.

Two Walks (from Ray)

So today passed without much fanfare, too, which, trust me, is a very good thing. Missy got her remaining chest tube out (no botched stitching this time), sat in a chair for each meal, and took TWO walks in our section of the hallway today. As you can tell, she's making strides!

I got to stay in the room while the tubes were pulled out, and I also got my first lesson in changing the LVAD's drive line dressing, which wasn't as scary as I expected it to be.

Tomorrow, more of the same, and longer walks!

A Great Friday (from Ray)

So today started very early with Missy's nurse washing her (the pic is from yesterday's bath - I didn't budge once I was so wiped!), sitting her in the chair for breakfast (toast and cream of wheat, bland but solid), and getting back in bed before I even woke up.

Today had Missy sitting in her chair for all three meals, and before dinner, she took her first post-op walk! If you saw her before the LVAD, she looks like a completely different person now. Of course, she's pretty tired most of the time, both physically and because of the pain meds, but she's on her way!

We have truly had the best nurses here. Our nurse last night (Lisa) took the time to explain what each and every measurement and line meant on Missy's monitor. Our nurse this evening (Megan), let us listen through her stethoscope to the LVAD, which sounds like a quiet vacuum cleaner.

So far, so good!

A Tiring Thursday

Well, I finally have some good news to report: Missy's breathing and feeding tubes are GONE! She seems to be holding her own, so that's very encouraging. It's taken a lot out of her, though, and they're going to get her up and sitting in a chair later this afternoon. Crazy, huh?

And another new development - she's sitting in a chair, eating a popsicle! :-)

A Steady Wednesday

So today's passed without much hoopla. Lots of adjustments by the surgeon, lots of charades/sign language. Missy still has her breathing and stomach tubes in, so she's not too comfortable, but she's a trooper.

Visitors are somewhat difficult right now because of the machinery, but please stay tuned for an expected date for extended vistors.

Final update of the day (from Ray)

After a crazy, intense, stressful, terrifying day, the LVAD is in and working properly. I got to see Missy and I'll even get to stay in the room with her tonight, although the nurses said not to expect to get much sleep.

Thank you all for your prayers and thoughts today - we've truly needed (and felt) them.

SURGERY UPDATE

We just heard from the head of anesthesiology, and he reported that everything is going very well. The LVAD is in and working as expected; now they're going to close up and move her over to recovery.

SURGERY TIME (from Ray)

We heard this morning that the surgery has been moved up to this afternoon. Please keep her in your prayers.

A New Week (from Ray)

Earlier today, we found out that Missy will most likely be having her LVAD surgery on Wednesday. Of course they can't say for sure, but her doctor said that there was time on the surgery schedule for that day. The surgeon did stop by earlier this evening to answer our questions and spend a little more time with us. It sounds like the first 2 days post-op will be rough, but the end result will be worth it.

He did say that there was a slight chance that, if Missy's right ventricle doesn't work as expected, they may need to put in an RVAD as well. The surgeon seemed very optimistic as to her post-op experience, mainly because she's in such good health other than her heart.

The surgeon did say he didn't like kids - he called them bacteria-encrusted monsters, or something very close to that.

As far as the day in general went, she had a fairly rough afternoon, but took some pain medication about 20 minutes ago and fell right to sleep.

Please know that your love, support and prayers throughout this time have been invaluable. We can't make it through without all of you!

A Good Saturday (from Ray)

I am happy to report that Missy had a really good day today! Good appetite, good BP readings, lowering pulse - all good improvements.

I think it's been a day or two since we've posted, and we have had some news. The doctors think that, since Missy's pressures are not getting better with medication, so the next step is a Left Ventricular Assist Device, or an LVAD. From what I understand, it's kind of like an internal bypass for the left side of Missy's heart, which allows her heart to rest, which in turn should bring down all of her high pressures. Her left side will still receive blood, but the LVAD will help the blood along. The LVAD is a "bridge to transplant," meaning that this is an interim step to bring the pressures down, which will in turn make her a perfect transplant candidate.

The LVAD is about 5 pounds and made of titanium (I haven't seen it or held it yet, but Missy has). It also has to connect to a computer and battery pack, which means there will be a wire leading from inside Missy's body to the packs. The batteries have about 6 hours of juice, so she'll have to be plugged in whenever an outlet is available. The LVAD also comes with a saw (to facilitate the open heart surgery that's required) as well as about 6 hours + of anesthesia. Oh yeah, and an additional 3 weeks in the hospital for recovery.

As you can imagine, this news was met with very mixed emotions, but, in the end, is the best option that will lead to the best results. Missy's expected LVAD timeline is about 6 months, although many people decide against a transplant because they feel so good with the LVAD and don't want to go on the myriad of anti-rejection and immunosuppressant medications that are required. In our case, though, we're definitely pulling for a transplant, because the LVAD is only designed for about 5 years of use.

Definitely keep us in your prayers - we're certainly going to need them in the upcoming weeks.

A Guest Post-- from her sister Nikki

I feel famous, I get my first blog guest spot! Missy is eating dinner (if you can call it that), she was lucky enough to get two desserts (if you can call the jello surprise dessert).

The end of this week has brought somewhat of a slowdown in testing. The SWAN device was removed this morning. While we are still waiting for a finalized plan, it looks as though Missy's condition is serious enough to warrant a transplant.

The snag is that because she has been in heart failure for quite some time, the pressure in her heart and lungs are very high. These pressures have to be brought down to about half of what they are currently before a transplant. So far, Missy has been unresponsive to the medications to accomplish this.

If she remains unresponsive to the medications it is likely Missy will need a Ventricular Assisted Device. This will require her to undergo open heart surgery next week. The device will do the work of her left ventricle so that it can rest. The VAD will pump so effectively that the pressure in her lungs should also go down over a period of time. Once the pressure goes down, she will be able to move forward with a transplant.

She is still tired from the week's events, but it appears she may be in the hospital for quite a while. I know she really enjoys having visitors and seeing friends and family. A few things can help these visits go a little more smoothly. It is a good idea to call Ray's cell phone before coming. He can let you know if she has any tests or procedures, he can also let you know if she is resting or sleeping. Also, Missy is extremely sensitive to smells, especially perfumes. She also prefers a relatively quiet environment. She enjoys quiet conversation, but don' expect her to be belting out karaoke for awhile :)

The whole family appreciates all the continued support and prayers. We are truly blessed to have such a wonderful support network.

A Tuesday Like No Other (from Ray)

As you might imagine, we're still at OSU. After a good night's sleep, Missy's day started pretty roughly. It turned out that, after 120 mg (I think it's mg...) of lasix, they took too much fluid off yesterday, which wreaked havoc on her body. Plus about 10 doctors came through before noon today, from dermatology to physical therapy. The PT consult made her go for a walk, which made her vomit. To top it all off, she was NPO all day (about 18 hours total), so that made matters even worse.

The biggest news from today is that she now has what's called a swan catheter in her neck. They did the procedure (which included another heart catheterization in her leg) without using any general pain killers or anesthetics because they were too nervous that she would stop breathing. So now I'm sitting in her room, watching a screen full of various pressures being measured real time from a scary-looking set of wires sticking out the right side of her neck. Additionally, she's bed-ridden for another 3 hours, and can't elevate her head too much, which is making her breathing very wheezy.

Needless to say, it's been an intensely dramatic day, and there may be more to come. So far, no tests have been ordered for tomorrow, but we'll see what her doctors say in the morning.

Thank you to all who have visited and called. Your thoughts and prayers are priceless to us during this time.

OSU Awaiting Transplant Evaluation

Well, I'm sitting here in my new bed at OSU Heart Hospital awaiting evaluation to begin tomorrow for the transplant. They will be performing a slew of tests tomorrow including a heart catheritization, MRI of the heart, and various blood and hormone tests.

After our arrival here a few hours ago, we are feeling a bit more at ease... but still have a long way to go. The team here has been crazy attentive. I had a small arrhythmia tonight and within 30 seconds the nurse and the doctor were at my bed side discussing it (it is probably just an effect of my potassium and electrolytes being a little low). The staff are excellent and the facilities are really top notch.

I will be able to have visitors at any time - room 6010. However, please keep in mind that I have a bunch of tests this week and may be in and out. Also, tomorrow morning we will be meeting the team of doctors, residents, and nurses that will be with us through this journey. Please pray for their wisdom and guidance that they will know how to give us the best care possible.

This has been such a difficult time for Ray and I, and we would both really appreciate all your thoughts and prayers. We know that God has a plan and we are praying that our faith will remain strong and that He will give us the strength to get through this operation.

Sunday Update (from Ray)

Two posts in one - not bad, huh? :-)

Missy's cardiologist stopped in this morning. She'll be transferred to OSU's heart hospital to begin the battery of evaluations toward transplantation sometime tomorrow. They'll do tons of tests and physical and mental evaluations before three levels of decision makers reviewer her case. If it's approved, she'll be listed on UNOS.

Meanwhile, I have to go to work to fully disclose the situation to my 2 levels of supervisors. It should be an interesting day all around.

Please continue praying that Missy's transition will be a smooth one and that my bosses will continue supporting our situation.

Good Morning (from Ray)

As you've read, this week has been a tough one. From hearing that Missy's best bet is a transplant and processing that information, we've now been in the hospital since late Friday. Missy's BP dropped very low, plus she'd been vomiting, which made matters worse. After a night in the ER, we ended up in one room, then another one where she could be administered an IV to bring her blood pressure back up to normal.

I am pleased to report that she slept soundly all night (save for the poking and prodding around 3:00am) and feels great this morning. Her BP is holding strong with the IV's assistance. One doctor's already been in checking on her, and he's working on a plan to hold her BP up in the normal range.

We're also expecting Missy's cardiologist this morning. We're fully expecting him to tell us that we need to go this week or next to OSU for transplant evaluation. While we know it's a necessary step, the prospect of a transplant is still terrifying, but the alternative is just as terrifying. Please continue to keep us in your prayers - we're going to need them now more than ever!

Heart Scan

Today was my five month heart scan. It seems that my heart has not improved from the medicines. Therefore, there are two options. The more conservative option is to have a defibrillator put in to regulate the heart beat and ensure if my heart would stop, the device would shock it. Along with the defibrillator, there is a procedure (EECP) where they will hook up pumps on my legs that will pump according to my EKG. This procedure has had good results; however, the insurance will not cover it so we will have to pay out of pocket. Also, it is an hour a day, five days a week, for seven weeks.

The other option is for me to go to OSU to be evaluated for a heart transplant.

We have opted to be conservative; however, the transplant may be inevitable. Truthfully, we are having a really tough time dealing with this news. We would really appreciate all your thoughts and prayers. We know that God uses all things for His good so we are trying desperately to remember that His strength will get us through.

Update on Mom

We spent the day at the hospital with Mom today. She is feeling MUCH better but still has quite a bit of pain. The results of the scope came back and she has a bacterial infection as well as her gall bladder is not functioning well. So, they are going to talk to the surgeons to see if they recommend taking out the gall bladder. If so, she will have surgery and have it removed. Hopefully, that will help make her better.

She is eating clear liquids and finally has a little bit of an appetite. It is also encouraging to see her up out of bed a little.

Tomorrow my cardiologist will be performing an echocardiagram. We are praying for good results. I will post more after the appointment tomorrow. :-)

Mom's in the Hospital

The past week or so has been a challenging one. There have been good days and rough days. I have found that mornings usually go well. That has been a blessing because it allows my Dad and I to get out together for a little while and for me to get some exercise. By the afternoon I begin to get tired and the evenings are usually a little rough. I still have a few hours of intense pain at night from my restless legs, but what a blessing that I have been able to sleep through the night after I get asleep. The other real challenge lately has been my stomach. It seems that I can throw up at the drop of a dime these days. That has been tough. Please keep praying that God will continue to heal.

My Mom has been a huge encouragement and strength to me through this difficult time. I have not seen her in a week as she has been sick. She started out with an upset stomach and has also been throwing up for about a week. Yesterday they took her to the emergency room where they have been giving her morphine and anti-nausea medicine. They have ruled out several different causes but have not been able to find what is ailing her. They are going to keep her in the hospital until Monday so they can do a scope into her stomach to see if it is her ulcer causing her all the pain. I would really appreciate all your thoughts and prayers for her.

My next heart scan is Wednesday. Please be in prayer for wisdom for the doctors and healing for the heart.