Friday, August 29, 2008

Follow up to the ER visit

We ended up spending most of the day at the hospital yesterday for testing that Dr Davison ordered. I had an ultrasound on my thyroid. The results came back good, actually. Even though the nodule on my thyroid has grown (since a previous CT scan back in May,06), the endocrinologist was not concerned about their size. They actually would need to be larger than a centimeter to be large enough to take action on. Also, all of my thyroid lab tests came back normal/within range. They are suspecting some type of viral infection considering all of they adenopathy issues that I've had. I came back negative for mono, which is good, my cytomegalovirus and epstein-barr should be back Tuesday.

I have an appointment set up in a week or two with the ENT at Carle to have the adenopathy and hoarseness examined.

My PFTs were still pretty depressed, but that goes hand-in-hand with viral infections. We'll trust that where I'm at now isn't my new baseline (surely), as I'm only 9 points (out of 100) away from being eligible for the lung transplant list, but we won't go there for now.

He put me on tetracycline for 14 days to combat any type of bacterial infection that could be lingering. Coupled with the inhaled tobraymycin that I'm currently taking, I can pretty much count on destroying all my normal flora. Hey, that's what yogurt is good for, right?

Pretty in Pink


My little movie star!

Sunday, August 24, 2008

Another round in the ER

I'm requesting your prayers as we've had some new complications come up in regards to my health. On Friday, I was feeling very lethargic/light-headed and ill. I ended up calling my doctor and was talking to my nurse regarding some other things (I'm going to be doing another drug research project for the CF Institute in Chicago). I happened to ask Kristin, my nurse, what my INR (the test to see how the comadin, the drug used to thin my blood to dissipate the blood clots) was. She said on Monday it was 3.8, which is pretty high. I called Dr Egner's office and told his nurse that I had cut myself on Tuesday changing the oil on my car and I had bled for 24 hours. She told me to come in and get my INR rechecked immediately on Friday, and it was now 4.4, which is critically high. They took me off the coumadin until Monday to allow my levels to lower. With an INR too high, internal bleeding can occur.

On Friday and into Saturday, the left side of my neck started to ache pretty bad. I also completely lost my voice. It wasn't in the back or on the side of my neck, it was the front next to my esophagus. By Saturday afternoon, it was starting to creep up under my jaw line. Considering all the complications with blood clots that I've had recently, Jennifer and I talked about it and we thought we should at least run over to Convenient Care to get it checked out.

We went to CC and the doc there said that if it was muscular, like I slept on it wrong, it wouldn't affect my voice box. He conferred with another MD, who worked in the ER, and they both recommended that we go to the ER to get some testing and lab work done.

We dropped Mady off at the Angelo's again (thank you!!), and returned to the ER. Dr Davis was my physician this time and we really liked him a lot. He was a Cardinals fan (the game was on) so that definitely helped. He ordered a CT scan to see what was going on. He said that sometimes blood clots can get infected, or there might be some type of abscess that he would send me to the OR to get removed. They really didn't know, it was perplexing to a lot of people. Although she wasn't working on my side of the ER, Lindy and her husband Adam stopped by to hang out with us while I was there.

After about 30 minutes, the CT scan came back with the news that I had a couple of enlarged and infected lymph nodes. There's not a lot that they can do for this, although they did give me a couple of IV shots of Morphine (never turn down pain medications) and ended up sending us home with a prescription of vicatin. Dr Davis also said that the CT scan indicated a nodule on my thyroid that we have to go back this week and get an ultrasound done to see if there's anything that would happen to be malignant. The good news is is that it's small, so it's early and I'm not having any thyroid hormonal issues at this time. They told us to keep watch on my neck that night and return if anything changes at all.

We left at about 6:30 and picked up Mady from the Potter's (the Angelo's had gone there for dinner) and went home.

This time around was a little easier for my regarding my fears. I see the Lord getting increase in my life. I've been battling nightmares since the last time that I came in to the ER. Not so much the fear of dying, but the fear of leaving my wife and daughter with no husband and daddy. It's almost too much for me to bear. I've really had to surrender this all the God, as he is the the Great Physician. His timing is perfect and his healing touch is available should he decide to touch my body.

I also saw a tremendous increase in Jenn's faith. She's definitely the glue of the family that keeps us all together. She's awesome at juggling responsibilities and taking care of me and Mady. Her composure in the ER was like a rock. I love her so much.

Wednesday, August 20, 2008

Are we on to something or was this just random...?

Update: Today (Thursday) we have officially had two good run-ins with the potty chair. Hopefully we might be on to something here?! The first time she went and sat down on her chair with her diaper on. Mark realized what was going on and went to take the diaper off. He said it was extremely warm (nice, huh?! ha!) but he took it off anyway. She sat right back down and continued going. The second time was before bed and she went on her own. I think I'm going to have to get some pullups or something? Jeesh... i don't even know what to buy! We'll see....

We had an exciting evening in the Bettinger house tonight. Madalyn went potty in her potty chair for the first time! Mark and I danced around the house making a huge deal out of what she had accomplished secretly hoping it would help her to do it again in the future :) Here's the story:

A few months ago, around 15 months, Mady started to tell me when she was going "potty" in her diaper by saying "bubbles." Whenever I heard this I would ask her if she wanted to sit on her potty. For about 2 days she loved to sit on it but then she began to cry when I asked her to sit down. I put the chair away as I didn't want it causing any problems for future potty training (as she was crying every time we'd go by it). She never did "go" but that's alright! She still tells me when she's going to the bathroom by announcing "bubbles."

Yesterday I saw her walking around with a curious look on her face and she was holding the front of her diaper. I asked her if she wanted to go sit on the potty (not expecting anything) and she shook her head yes. I took of the diaper and sat her on the normal toilet and she was laughing and kicking her legs but nothing. That's okay , no big deal. Tonight, after dinner, I told her that we were going to take a bath and I said "but before we get into the tub I want you to sit on your chair to see if you can go potty." She shook her head yes and bolted for her chair when I took her diaper off. I borrowed this particular chair from a friend and it actually plays a little tune when the motion sensor is set off. Mady, unfortunately, knows how to set the sensor off with her hand so that she can hear the music. So, as I was getting her bath ready she was sitting on her chair playing with the sensor making the music play. I didn't think too much about it. I picked her up and put her in the tub and looked down to see that she had actually gone potty.

I made sure she knew we were proud of her and she asked to call "ma-ma" or grandma. She proudly said "pee-pee potty" on the phone to my mom. We'll see if this is going to turn into something good or if it's just a random event. No matter what, I'm proud of that little pumpkin, that's for sure!!!!

Wednesday, August 13, 2008

Post Hospitalization Reflections

As many of you know, we've had quite a week of ups and downs. I've been very fortunate to have been covered by the hand of God himself, who has kept me and restored me. For those of you that have no idea what I'm talking about, I'll go into ridiculous in depth analysis. Partly so that you can know how to pray for us and partly for me...this will serve as a reminder that life is fragile for those times when I'm feeling pompous and arrogant again...

About 2 weeks ago, I started feeling a little "crummy." Crummy is a good word for "not sleeping well, waking up coughing, feeling cold and listless." It's the word I usually reserve for my health when I'm essentially not up to par. Considering the fact that we were scheduled to go through the procedures for IVF (In Vitro fertilization) on Monday, August 11th, my pulmonologist, Dr Davisson and I decided to have a quick round of IV antibiotic therapy to get me back up to baseline. He put in a PICC line (an IV that goes into my veins at my elbow and travels all the way to the superior vena cava, where the vessel is large enough to withstand the caustic affects of mega dose antibiotic therapy).

Things went well until Wednesday, August 6th. I started having trouble flushing my lines with saline after each dose (6 doses daily...measured in grams, not mg's). I spoke to Dr Davisson regarding this and I told him that I was having a nagging pain at the base of my clavicle. We set up a time that day for me to go to the procedure center to have the dye-contrast ultrasound done on the vein to check for leaks/blood clots. Upon having the procedure done, Dr Sapp decided that the PICC had malfunctioned and we placed a new one. During the procedure, I told him several times that the new one didn't feel right and that now there was a pain in my shoulder. I've had dozens of these PICCs and I know how they should feel. This one didn't feel right. He told me that it looked fine on the monitor, that there were no blood clots and that there wasn't anything that he could do for me. And so he sent me home.

Thursday night after work, as we were getting dinner on the table, I pulled up my sleeve as my arm continued to feel very uncomfortable and sore all through the night and all day. To my dismay, a bright red streak was streaming up my cephalic vein on the bicep. I called Dr Davisson's office and Morgan, the nurse, immediately sent me to the Emergency Room, fearing cellulitis, blood clots or infection.

On the way over, Jenn called Nicole, who's husband, Paul works in the ER, and we're good friends with. Nicole told us that Paul was working that night and that she would call him. We dropped Mady off at our good friends, Brock and Liz, as we figured we would probably have a long night in front of us. They ended up keeping Mady till the next morning, for which we were very grateful.

We got to the ER, parked and got admitted. The waiting room was pretty full, so we got a little discouraged, knowing that the wait would be long and arduous. No sooner had we sat down, than Paul comes out of the doors and quietly motions us to the back. He said there weren't any empty rooms, but that at least we were getting seen. He put us on the bed in the hallway and took my vitals.

They ordered the full panel of normal labs, including blood cultures (which came back positive for coag-negative staph, but all parties involved, including myself agree that it was just normal skin flora...the phlebotomist didn't do a good job sterilizing my arm before the draw). Dr Weir ended up ordering a sonogram on my upper torso to look for blood clots. They gave me a couple of vicatin to take as the sonogram would require a lot of pressure on my sore arm. About an hour later, she showed up and at that time, I was ushered to a real room.

It took her about 45 minutes to do the scan, and at least the Bears were playing on preseason football. I did realize that at the end, she told me that she had to check "one other place again" which happened to be my jugular area. I noticed it, but I've never had a predisposition or hereditary history of blood clots, so I didn't dwell on it too much. It was more of a nuisance that it was taking so long. We just wanted to go home...

After about an hour, David, our nurse (Paul had since gotten off work) and Dr Lavizzo came in. Introductions were made as this was the first time that we had met the hospitalist, Dr Lavizzo. He got to the point quite quick, by stating that I had 5 blood clots (axillary, subclavian, jugular veins and 2 other superficial ones that they weren't as concerned about). We talked for a while and it was at this point, that Dr Lavizzo told us that he was going to recommend coumadin blood thinners, coupled with Lovenox abdominal injections to take care of the blood clots. He then told us that the IVF procedure on Monday would be highly recommended that we cancel as bleeding would now be a key factor. This really upset Jennifer and I. We were really set on the procedure and were looking forward to it being over. Jenn had already been on hormone injections herself for a couple of weeks. At this point, we started to realize that the Lord was doing something, and that for whatever reason, he was moving and working in our life.

About 30 minutes later, Jenn and I were sitting on the bed and she asked me, "Hey the last time you got admitted, did they take you up in this bed, or did they come down with a hospital bed?" I don't remember much of this conversation, but I turned to her and said, "I don't know, I've never been here before." She looked at me, and was like, "Yes you have." My blank stare back at her made her immediately run for our nurse. Several nurses, including Lindy, a good friend of ours from church came in and started asking me all kinds of questions. I was able to state my birthdate, wife's name, day of the week, on and on, but I still didn't remember being in the hospital at Carle. Even now as I write this, it's a little cloudy.

They came in and had me eat 4 aspirins and started talking about the possibility that a blood clot went into my brain and caused a mini-stroke (also called a TIA - transient ischemic attack). My blood pressure went up to about 190/110 and I got really cold. My legs were literally shaking uncontrollably. Jenn put all kinds of covers on and I just couldn't warm up. My pulse sky rocketed and I became very scared. I remember sitting there and thinking about the possibilities of what could happen. I remember thinking about what would happen to my family, or the college ministry that we head up. I was thinking about would Jenn know who to call regarding insurance, or who would be there for my daughter. All of these thoughts continued to roll through my mind at that time. It was really the first time when my health and its outcome was literally out of my hands. I've had all kinds of health issues, but I always knew what the outcome would be. Even if I had a bout of hemoptysis (coughing up blood) I knew that I would just get some antibiotics to clear the infection and that I would be fine. This time around, was a little different. They said that I had a panic attack...

My first response was that I was a Christian, and that Christians don't have panic attacks! They said, no, I'm human, and that they do, and that they were going to give me an IV dose of adavant to settle me down. Well, they gave me a dose, and sure enough, it settled me down. Unfortunately, it was at this time that I noticed my cheeks, lips and tongue had gone numb...there was something very wrong. We met with the neurologist, and he ran the full set of tests, and he didn't think much of it. Within 3-4 days, I regained feeling, although foods and drinks still taste spicy to me, even a week later.

My head was still really foggy for about 2 hours. I simply couldn't clear my head. It was like I was talking into a trash can. I couldn't wake up, and I felt weird pains all over my head. They gave me an injection into my stomach of lovenox, which is a fast acting blood thinner. Other than that, they monitored my vitals and told us that there wasn't much that they could do.

Nicole, Paul's wife came in and ended up staying with Jenn until early the next morning. She was a real blessing to us (along with Paul and Lindy) as they provided support. It was very reassuring to have the support group around us. Jenn's mom came up "later" in the morning as well and ended up taking Mady for the day and night to help us out. She was a real blessing too. By this time, my folks had been contacted and Pastor Ron came in around 12:30 am to pray for us once I'd been moved to the hospital room. We'd made countless phone calls and we knew that there was a strong prayer support team out there praying for my recovery.

We only slept about 3 hours that night and by the time daylight came around, we were already getting overloaded with questions and our schedule for the upcoming day. Dr Davisson came in and we talked for about 30 minutes. He told us that we probably wouldn't have to wait 6 months for the IVF, that it could be done in 6 weeks or so, I would just go off the coumadin for about 5 days before hand. It was good to see him. He really helped settle us down. He was able to explain things better, especially to Jenn, than the nurses in the ER had explained them. Jenn and her mom went and got Mady from the Angelo's and brought her in. It was SOOOO good to see her. She sat on my lap for about half an hour and played with the balloons that well wishers had given us. She was so beautiful. About 2pm I had a TEE (transesophogeal echocardiogram) done. They give me versed to knock me out and then they slide a probe down my esophagus to do a tracing of my heart in 3D. They were looking for any holes/clots or abnormalities. After this, they took me down to MRI to have a brain scan done, again looking for any clots. We found out on Monday that these both came back negative.

We had several visitors throughout the day (my mom, the Thompsons, Eric Schwalmm, Ruthie from Christie Clinic, Lindy, Jenn's mom) and many phone calls. By about 6 or 7, they decided to let me go home. We packed up and headed home. It seemed so surreal, that it was over. I definitely looked at life a little different as we headed home.

You gain an appreciation for the finer things in life. Especially family and relationships. You look at trees, the sky and the beauty of creation in a different way. I look at my wife in her eyes differently. You hug your daughter a little bit longer. You stay on the phone with your folks a little bit longer. You slow down. You don't drive as fast. You sip your coffee differently.

Even though it's been almost a week now, I still look at life differently. Funny thing is, I never thought about work. I didn't worry about a project that I have to do or how much vacation/sick time I was going to have to take. Work never came in to the picture. (Obviously it has now.) At the time, that was the last thing on my mind, which is weird because throughout the week, it's the first thing on my mind usually.

It's funny how the things that really matter, REALLY matter are evident in situations like this. I'm very thankful for this wake up call. I'm very thankful for a new lease on life. Lord, I want to serve you with all that I am, all that I can be. Thank you for keeping me safe, Lord. Thank you for healing me (even though I can't play softball for the rest of the season, which is ok, I'm not that good anyways). Thank you for postponing our IVF procedure. Not sure why, but thank you anyways. Thank you for friends and family that care. Thank you especially for a beautiful wife that never left my side and never left her faith. It was hard for her Lord, but she's a rock and she learned faith too this past week. Thank you for my beautiful daughter that will have to wait a little longer for a "bro-dur or a thith-ter". Thank you Lord for increasing my faith. I surrender all to you...

Thursday, August 7, 2008

To do or not to do... That is the question!!!

I'm trying to decide if I want to cut my hair... Actually, I take that back. I want to cut my hair but I'm trying to decide on a style. I really like the inverted bob look. What do ya think? Could I pull it off? I want something trendy and easy to do. Here is what I'm thinking... (I found this randomly on the web). I'm thinking about getting it done in a couple of weeks.... *I would probably go a little longer in the back, I think?!

My newest toys!!!!

I've gotten a couple of new "toys" in the last week and it's been so much fun :)

This past Saturday my mom drove to Champaign and surprised me with a Cricut Expression. It's basically a small computer like machine that will cut out any font or any type of die cut that you have a cartridge for. They are super useful in crafting and scrapbooking. I LOVE IT!!! I have the smaller one but the Expression does a ton more things and cuts things even bigger than 5 inches, which is what the smaller machine does. My mom totally blessed me with it and I wanted to say THANKS again!

Yesterday I was able to get a new cell phone. My contract was up in July so I was due for a new phone. We decided to get rid of our home phone (we can still receive calls but it costs us to make calls) so now we are using our cell phones "full time." I was going to go with the Envy2 but the letters were just too small and too close together. I ended up going with the Voyager and I love it. The touch screen is especially nice. The price was even nicer... it was on sale and with a credit that we had through Verizon, it only cost us $3 and some change! Sweet! Mark is out at the Verizon store now getting his new phone :)