Update (6/22)

Sorry that it took so long for another update. I wanted to to say first of all how grateful we are for all of your help and support! We could not have made it through the past 3 weeks without our families, church family and friends.

I wish I has good news to report, but unfortunately God's timing is not our own. After spending 16 days in 3 different hospital rooms and visiting with 2 specialists, we left feeling more discouraged than ever. We found out this past Thursday that Maegan was going to be discharged because insurance wasn't convinced that she needed to stay under the care of a hospital. This was extremely frustrating to hear because she was in the exact same condition she was in when we left Nacogdoches (6/11). With God's strength, physical therapy, and modern medicine, Maegan was able to ride in our car and spend the night in a non-hospital bed.

The next day, we went to see the absolute best neuromuscular specialist in Texas. After about an hour with this doctor, he gives us the news we had been dreading the most. He told us that although something was undoubtedly wrong with her, it was beyond anything he would be able to treat. He ordered one more blood test and said that the results may or may not reveal anything else. We got back into town late that night and have been laying low and resting.

Although Maegan is out of the hospital, she is by no means healed. We are confused and frustrated and have absolutely no answers. In fact, we know less now than we did before seeing the specialist. Every doctor and specialist we have seen so far agrees that something is definitely wrong, however no one can seem to find it. We have been told that it can be anything from an active infection that is attacking her nerves and muscles to an autoimmune disease that is affecting her muscles. Maegan is able to get out of bed and move around but (for now) has to use a walker to get anywhere. I am going to have to go back to work this week and I'm trying to get everything ready so that I can leave Maegan and try not to worry about her too much.

We are still not out of the woods as far as needs, although our small group has been awesome! While we were in our luxury suite in Houston, a few of the wives came over and cleaned our house! The prayers that have been lifted up for Meagan have been heard. God is slowly taking away everything that we are leaning on so that we have no choice but to trust Him completely.

Sometimes if you pray for patience, God gives you tough situations to grow your patience instead of just handing it over. In the same light, we feel as if God is giving us situations to learn to trust Him instead of giving us an easy way out. Please continue to pray that we find the right doctor(s) so that we can find out exactly what is wrong with Maegan.

Keep praying expecting God to do something incredible.
-Philip & Maegan

Matthew 21:22

"If you believe, you will receive whatever you ask for in prayer."

Done. For Now.

Well, we have reached the end. We are sitting around watching TV and waiting on all of the paperwork to fall into place.

We are ready to leave.

I am ready to find out what is wrong with my wife.

We are ready to go home.

We miss our friends and church family in Nacogdoches.




...and I miss my guitars.

Back to Square 1...well, sort of...

It looks like our fears have come true.

Maegan's doctors cannot justify keeping her in the hospital any longer. They tell us that the insurance 'Nazis' are auditing her charts. Because most of the treatments she is receiving are considered outpatient procedures, they are telling us that we are to be discharged sometime tomorrow.

The specialist helped us a lot, but basically her hands are tied. The only way Maegan can be seen by her is through the hospital. Her clinic is not covered by our insurance and so everything would have to be out of pocket. The good news is that she was able to refer us to and get an appointment with an equally qualified specialist just right down the road. We will be staying in a hotel tomorrow night and the appointment is this Friday at 1.

This is definitely bittersweet. We are sooooo ready to get out of this hospital and get home. But on the other hand we are getting an appointment with the exact same specialist our Nacogdoches neurologist recommended over a month ago. Maegan is still in no shape to try to travel by car, but we no longer have a choice.

Basically this entire week has come full circle and wound up being nothing more than waste of time. She is in the same condition she was in when we left Nacogdoches, she has been started back on almost the exact same medicines, and we are going to the same outpatient specialist we already had an appointment with over a month ago (did I mention that yet?).

The communication has been broken down since we got here. We haven't known what was going on, the doctors haven't been talking to the specialists, the nurses can't get in touch with the doctors...frustrating all the way around.

All in all, we know that God has brought us here for some reason. We don't know that reason yet, but we can trust that God is bringing us through this and as long as we continue to be faithful, the blessings will continue to flow.

Keep praying knowing that God to do something awesome,
-Philip & Maegan

2 Steps Forward...

This hospital almost put us in cardiac arrest today.



Communication is important. We met with the neuromuscular specialist today and spent about 30 minutes getting her all caught up on Maegan's progress of the past year. She immediately recognized what was going on and plans to order tests. She tells us that we can expect to be out of here in about 5 days.



Rewind 2 days. The attending doctor who has been over Maegan's stay says that the pneumonia is under control and from her end sees us being discharged by this Wednesday. Although this is great news, this doctor does not know nor understand the severity of her muscle disorder. Apparently, this discharge time is the word that gets spread around to all of the resident doctors and nurses.



This afternoon we get word that they are coming to pick Maegan up for an EMG at 2:00. Two hours later we are still waiting and Maegan gets sick to her stomach. While she is indisposed, the hospital staff brings by a stretcher to take her to have the test done. After waiting 5 minutes, they tell me they must leave and send another stretcher. Apparently in a hospital this size, there is a strict scheduling system. No problem. The transport tells me someone else will be by in 10 minutes. Again, no problem. 2 minutes later, Maegan is feeling better and we wait patiently.



The bad news comes about 20 minutes later from our nurse. We are told that since we weren't ready to leave when they first came by, the tech (who is contracted) left and won't return until next Monday. Apparently, word never got to the specialist and by the time the nurse called about coming over, they said it was too late. We have been waiting for this moment for over a year now and we are told that it's not gonna happen.

On top of this our specialist seems to think that Maegan is being discharged tomorrow and we can just hop in the car and head back next week sometime. Even though Maegan is in the EXACT SAME CONDITION that she was when we left Nacogdoches. The only thing that has improved is her pneumonia and that could have easily been treated without spending 5 days in this hospital.

Rest assured that we will be meeting with both doctors tomorrow in an effort to bridge the communication gap.

Happy Early Birthday to Me!

So my parents are awesome.

A couple of days ago, I dropped my laptop on the cold, hard hospital room floor. Although I could get it to work long enough to get my last post up, it just is giving me too many problems. It was over 4 years old and had definitely served it's purpose.

Upon hearing of the poor lappy's fate, my mom and dad (not wanting to miss a single post) hooked me and Maegan up with a shiny new laptop.

(tech stuff)
Toshiba Satellite, Intel Centrino Core 2 Duo @ 2.00ghz, 3 gigs of ram, 320gb hd, wireless a/g/n, and Vista Home Premium
(end tech stuff)

My parents have been super supportive since the beginning and I know we can count on them to be a solid rock on which we can lean whenever things are too tough to handle.


And that's why my parents are awesome.
-Philip

The Methodist Hospital, Houston TX - 1st Update (long)

I want to say thank you for checking this blog every day. Ever since Meagan went back to the hospital, this sleepy little blog has been getting over 50 hits a day. That may not sound impressive to you, but that's a 5,000% increase in traffic, thank you very much.

Sorry I couldn't get this together any sooner. It seems as if any time Maegan is not sleeping, then she is undergoing tests or being evaluated by doctors. Whenever she finally does get to sleep, the tapping sounds of me typing in our small, quiet room are not exactly conducive to a restful environment.

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D-Day

The transfer happened much sooner than I thought it would. We were told that everything was official this past Thursday morning (6/11), but we would have to wait until a room came available. Later that afternoon, our good friends Geoff and Katie Gregory came by to hang out and help us get ready. My awesome wife, despite of her condition, had made me a list of everything that we would need and I was able to be packed, with the car gassed up in just a little over 2 hours. By this point, it was already past 5pm and we were not expecting anything to happen until the next day. However, we got the call around 6:30 that the move was happening within the hour. Go time.

AmeriCare paramedics got up to the room and had Maegan loaded a little after 8 and had her in the Ambulance by 9. I left just as they were loading her up to avoid ramming my car into the ambulance to try and get her there sooner. That never works. I arrive around 11:30 and head through the maze of halls to the ER. Maegan rolled in about 10 minutes later and the nurses inform us that we are in the Jones Tower. It just so happens that this tower is on the complete opposite side of the complex. Fantastic. Luckily the paramedics knew where to go because I would have wound up hugging my teddy bear and crying in a corner. This place is stinkin' huge.

We get up to the 10th floor and they wheel Maegan in to this large corner room. The first thing we notice is that there is another patient sleeping just behind a thin curtain. Now Maegan and I aren't selfish people, but when you are sick the last thing you want is someone who is just as sick as you sharing your bathroom. So I get selfish and as it turns out all you have to do is ask, however, the floor is entirely full and we won't get a private room until someone leaves. We decide to tough it out and go through all of the talking with the nurse and doctor that has to happen before they let you sleep.

After about an hour of this, a man arrives with a stretcher and loads up Maegan. All we know is that we are heading down a floor. I'm guessing this is the point at which we are being transferred to our nice quiet, private room.

I could not have been more wrong.

The elevator door opens and we are greeted by the sounds of sick patients, phones ringing, nurses running around, and I'm pretty sure I even saw a marching band. They wheel her around the corner and into a room about half the size of the room from which we had just come. I looked in and noticed a curtain had been drawn in the middle of this room. It looks like a double room but we were told private. Is this too good to be true? I get a real bed tonight? But then reality sat in and sure enough, Maegan got moved from a quiet Presidential Suite on the 10th floor, to a walk-in closet with a roommate on the 9th. It was looking like a long night was ahead of us.

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Day 1

Around 2am (6/12), the nurse comes in and begins asking all of the same questions we have already answered about 7 million times. After the collecting of blood and interrogations had ceased, it was after 4am and we were exhausted. We (or at least I) got to sleep for about 30 minutes at a time until someone else came by to stick a needle or check her blood pressure.

At 7am, they came and wheeled Maegan away to have some x-rays done. Before we had left Nacogdoches, Maegan had been experiencing a lot of chest pain and a little fever. With no sleep and temperatures over 101, she was not in great shape. After the team of doctors came in and evaluated her, she finally got a little rest. Her temperature remained high and she just felt sick every time she woke up.

The neurologist came in a little while later and evaluated Maegan. He asked a lot of questions of how everything got started and how her muscles are doing now. This almost sounds bad, but it was good that he accidentally made Maegan's arm muscle spasm. He got to see first hand a small glimpse into the pain that she has been dealing with. He said that she is scheduled to see a neuro-muscular specialist this Monday. Good news: we are finally getting in! Bad news: 3 days of waiting/pain/discomfort/nausea for Maegan.

Around 3:00pm the nurse came and told us that our private room was ready. Hallelujah! They moved her and we were finally able to breathe easy. A little while later they brought in a speech pathologist to check and make sure she was swallowing ok. Everything checked out and Maegan was finally able to rest for a good long while.

Some more bad news came a little later when the nurse brought in some IV antibiotics. The x-ray from that morning revealed that she has pneumonia. She is now extremely frustrated because she has taken a step backwards, medically. Instead of just having to deal with the muscle weakness and spasms, she has non-stop nausea, chest pain and fever. At least we got to sleep at a descent time and got to rest for most of the night.

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Day 2

This morning (6/13), they carried Maegan down for a CT scan of her chest. The doctors wanted to check and make sure she does not have a pulmonary embolism. *As of this evening (8:30pm) we have not heard any report and can only assume that a PE is not present. Because of her nausea and the size of her small veins, (the injected dye they use to show up on the scan blew her vein) we had to wait in the CT holding room for over 2 hours. Finally, an IV special ops team came and scoped out a descent vein on her arm. She was in and out in about 10 minutes.

Just as she was finally back in bed, 2 physical therapists came by and wanted to get her moving. Because my wife is a trooper, she fought off pain, exhaustion and nausea and did everything they asked. They had her sitting up on the edge of her bed under her own power, but the force of the bed on her thigh caused more cramping and spasms. I made her lay down (or else she would have kept fighting) and they left her with some exercises to do while stuck in bed. It was at that point that I realized that she has more or less been stuck in bed for over 2 weeks. Reality check:

She is 22 years old.

It has become a task for her to role over on her side or even raise her head up to take medicine or drink water. She has been in a wheelchair for a couple of months now but was still able to walk under her own power. Now, she can't even begin to stand on her own much less get around the room.

This is the girl who can ignore pain if it's getting in the way of her goal. This is the girl who was the first in her family to graduate college (she did it in 4 years and graduated magna cum laude). This is the girl who fought fever and fatigue to go and work in the speech and hearing clinic. This is the girl who put up with me through college and still wanted to marry me. This is not the girl who wants to spend the rest of her life bedridden and drugged up.

That's not gonna happen.

By God's grace and healing, she is going to walk out of here under her own strength. She will return home knowing that even though she may not ever be able 100%, she will return to a normal lifestyle. This is not going to stop her from living life to the fullest. God is bringing us through this for a reason and He will bring us out.

Keep on praying knowing that God will answer.
-Philip & Maegan

Update 6/10

After 2 long and frustrating days, we can finally rest. Although we don't have a specialist scheduled, both doctors have assured Maegan that she will not be sent home unless she gets better. That may not sound like much, but when your life is in the hands of 2 human doctors, frustrations, stress, uncertainty, and tears abound.

I'll type the whole story later. Too tired to think straight.

Keep the prayers going expecting God to do something awesome.
-Philip

Frustated

Today has already been the longest day and it's not even noon. The neurologist put Maegan on a new muscle relaxer to try and get her muscle pain/tension/spasms under control. She said it help her feel rest when she was laying down, but the moment she tried to stand, her legs went crazy all over again.

She has already had a visit from a urologist, a sonogram done on her kidneys, and is scheduled for a cystoscopy at the doctors earliest convenience (either in the next 5 minutes or the next 5 hours). Not knowing an exact time is really causing some unrest for Maegan.

All in all Maegan just isn't resting as well as she needs to be because she is so worried about what is happening next. Frankly, I am too. The doctors seem to want to help but it seems like we are having to fight just to get them to even consider an inpatient transfer to another hospital. I think the doctors understand where we are coming from but it seems as if they want to get her well enough so that I can drive her to a neuromuscular specialist. She is in no condition to try to make it outside of these 4 walls, much less a 3 hour car ride. At least not yet.

After being discharged, the following 24 hours were the worst I have ever seen Maegan struggle through. The medicine didn't help, I couldn't help, and it seemed as if everything that used to bring her comfort was just not adequate anymore. That discharge led to many, many strong emotions about what our time in the hospital is really about. I was never aggressive enough to tell the doctor how I felt about his judgment. To no surprise, we are now doubtful that any doctor (no matter how great their intentions may be) is actually listening to the whole story. Even though we are talking to the doctors about where Maegan needs to go, it just seems like we are having to fight tooth and nail just to make sure she doesn't end up out in the cold again.

Either that or they could just not be telling us everything.

Whichever, it is enough to raise the blood pressure and counteract the very reason why we are here in the first place.

We want- no we need a solution to the problem.



Sorry for venting.

I feel better already.
-Philip

Sunday Update

Well today has been relatively uneventful. The nurses have spent the majority of the day trying to keep Maegan comfortable. However, it seems as if the medicine is wearing off long before the next dosage is allowed. She is also nauseous and has hardly eaten much over the past week.

The theme for this trip is finding the root of the problem. The worst thing that could happen would be for the doctors to do nothing but throw a blanket over entire situation and act like everything will be all hunky dory. It looks like her doctor this time has his head on straight, but once you've been burned by one doctor it's difficult to trust that the next one will actually pull through.

So...this is where you come in. I ask that you simply join us in prayer that we can fully rely that God's plan is in action. Also pray that no matter what we may think is right or wrong, we will realize that He is carrying us through this. And upon that realization, we will let go of everything else and cling to Him.

-God Bless
Philip & Maegan

Hospital Trip: Round 2

Hello from Nacogdoches Memorial.

I have to say that things are looking a little better this time around as far as where we are headed next. Unfortunately, the pain is still uncontrollable and even a little worse for Maegan this go-around.

Maegan got admitted much quicker this time under the care of her Internal Medicine Specialist, Dr. Savage. He has been very understanding and was the first to diagnose her with having a neuromuscular disorder. He admitted her under pain management with the intention of getting her to a specialist in Houston. This is definitely an answered prayer! Instead of going around in circles, we know have a doctor who has a plan and won't send her home with some pills and a hearty "good luck".

It's easy to hear the good news and forget that Maegan is still in terrible pain. When you do pray be sure to thank God for that good news but don't stop there! Pray for pain relief so that she can rest comfortably. Pray that we find a doctor who has the ability to treat the actual disorder and not just cover up the symptoms with pain medication.

Maegan's ER doctor said it best a little earlier this evening: "If someone is standing on your toe, we can give you all the pain meds in the world, but that's not going to get that person off your toe."

Those, my friend, are words that we are living by.

-God Bless
Philip and Maegan

Update on Maegan (Sorry, long post)

For those of you who may not know, my wife Maegan has some sort of a neuro-muscular disorder. Although we do not have a definite diagnosis, the neurologist believes that she has neuromyotonia (also known as Isaac's Syndrome). This has become part of her every day life and we are learning to lean on God because we are so helpless on our own.

So this past Tuesday started off just like any normal Tuesday should. Around 3:30 that afternoon, Maegan called and asked that I come home and help her. Apparently my wife is so tough that she had a migraine headache for 2 days and hadn't once complained. I had no idea! I called her doctor and got some perscriptions filled for the pain and nausea.

With not even enough time passed for the first doses to kick in, Maegan started feeling an extremely painful electric shock through the muscles in her left leg. She equated the pain to the feeling that one gets when sticking a finger in an electrical outlet. Ouch. She ignored the first one, but the second and third were too much to handle. She tried standing and walking, but nothing she attempted would stop the inevitable shock.

It was now after 6:00pm and the doctors were all away from their offices, but I tried anyway. The answering service assured us that we would receive a call back but we couldn't sit around and wait. We went to the ER and had her in a room by 7. After explaining 1000 times that we had no clue why she hurt, she finally got some relief from IV pain medicine. For the next 7 hours we sat in a cold, hard, sterile room and waited to hear back from the doctor about the lab work they had done.

Finally, around 2am the nurse came and told us that they wanted Maegan to stay the night so they could continue to monitor her progress. By the time all of the details were worked out and we were in our cozy little slice of paradise, the clock said 3:30am. Nurses came in a couple of times over the next 3 hours to draw blood and make sure that Meagan wasn't sleeping. Ok, so that last part may not be true. I know they have a job to do...but seriously...can it wait til morning?....digressing....

After an incredibly restful night (sarcasm intended), Maegan's primary care doctor came in around 7:00am. This whole Isaac's Syndrome ordeal has been handled by a totally different doctor and so the details haven't been shared at all. Every time a new nurse or doctor comes into the room we have to start all over again.

The doctor also expressed concern for the potential risk of addiction from the pain meds that they have Maegan on. Although he is right, his advise came at the absolute worst time. She tried to go an extra hour longer without the morphine and wound up with the same unbearable electric pain she experienced that had brought us here in the first place (a 10 on a scale of 0-10). It took the rest of the day to get her muscles under control. The rest of Wednesday was relatively uneventful. We napped a bit and watched a lot of TV.

That evening, Maegan's neurologist came by to check on her. He is the one who presented Isaac's as a strong possibility and got us going in the right direction. He is also pushing to get us into a stronger program at Houston Medical Center. Maegan gave him a recount of the leg pain (which is now turned into back and neck pain) and he decides to change up some meds and see if any progress will be made. Maegan's friend Hannah Wier came and stayed with her so I could get some rest and go back to work.

Today was a lot like Wednesday. I came back up to the room around noon and Maegan was up but feeling nauseous. This has been coming along with the pain every couple of hours since she got here. The nurses have all been taking great care of Maegan and although they may not understand why she is hurting, they sympathise because they can see that she is in pain.

Around 5:00pm they came up and rolled her away to have an MRI done on her back. Fortunately, the results came back clear. This has been the trend for every test done so far and although it is great news, it is frustrating to not know anything new. Every test over the last year has come back perfectly clean and clear and yet there is something definitely wrong with Maegan.

Another one of the frustrating parts of this whole ordeal is the fact that I can't do anything to make it better. I have to say I have gotten pretty good at "makin' it better" for my wife whenever she doesn't feel good, but when it comes to this, the only thing I can do is watch and pray. I believe this is God's way of teaching me to stop getting in the way and trust Him totally. I don't like it, but I just have to get over it. I just can't carry her on my own.

We are both learning to trust God in a deeper way than we ever have before and it has strengthened our relationship in ways that I didn't expect out of our first year of marriage. I feel small and weak, but I can trust that God will carry us all the way through this. Thank you for your prayers, love, encouragement and support!

-God Bless!
Philip and Maegan