Thursday, January 30, 2014

What started this whole mess!!

Friday, October 11th, 2013 around 7:30pm our lives changed. We had started watching a movie as a family and had turned on the oven to preheat, we were going to have some frozen pizzas for dinner. Marty, my husband, was on the couch with our youngest and felt a discomfort in his right shoulder, so he decided to readjust his position. The next thing I knew, he was kneeling on the floor, gasping for air. After a few minutes of calming him down and trying to assess what was the cause of this and what “this” was, we all dressed and climbed into the car for a trip to the emergency room. I knew some of what was going on was a panic attack, which was in response to the not being able to breathe. OK, I get that part, but why was he having trouble breathing? Years earlier, around 12-15, Marty had a “BLEB” (bubble/blister of lung tissue, like a weak spot on a balloon or inner tube) pop on his lung that caused a pain similar to pulled muscle, just more intense. My first assumption this night was that was the case again, just the pain was making it difficult to breathe.
The car ride was difficult for him, the pain increased with the position in the car and vibrations of the road. We got to the Emergency room and they sprang to attention because he was having chest pain. We knew it was not heart related but they have to check that out first because of the possible complications. Again, fine let's go. So, they take him back and then ask me to fill out a slip of paper that just asks for his name and age. I sit with the kids in the waiting room and start trying to decide what to do with them. I made a call and got a church member to come get them. Got a chance to go back talk to Marty for a minute, tell him what the plans are for the kids and bring them back to see him for a minute before sending off.
All the immediate heart tests are negative and the staff have calmed down. Now we wait for a chest x-ray. The Doctor thinks he can go to x-ray, he seems healthy enough..... he's been given some pain killers and aspirin as well they had him on oxygen. Soon after getting back from x-ray the Doctor comes in to tell us, the lung is partially collapsed and it will require a chest tube to be inserted. He will also get an admission to the hospital as long as the chest tube is in. The chest tube will stay in maybe a day or 2 for the lung to heal up, the lung Surgeon will tell us more the next day. The process of getting information and then waiting for it to happen is frustrating. They give you the information, then take 1-2 hours to do the action. I got to sit/ stand in the room and watch the whole procedure, interesting and I'm not squeamish when it comes to other peoples blood, only my own. We then sit around waiting for another 1-2 hours before they come to take him to a room. We live only 10 minutes from the hospital, we entered the Emergency room before 8pm, yet it was going on 2am before he was settled in a room for the night.
I finally leave him settled in for the night and go pick up and kids. I then need to stop and get gas, find a drive thru for myself and get the boys home and to bed. Up the next morning and packing things for Marty, he's texting me a list and adding more! I get things loaded up and we're off to see him. He already has a visitor, another church member that I had called the night before, and seems to be doing well. They had taken him down for a CT scan of the chest and lungs, the lung Surgeon is supposed to be in later to talk. The boys take off with a church member to hang out with a friend and we continue to entertain visitors for church while waiting for the Surgeon.
Early afternoon, the Surgeon comes in. Yes, it's a BLEB that has popped and caused the hole in the lung. Bad news, the CT shows more that could cause more damage and he wants to do surgery to remove them. So, we now schedule surgery for Monday morning. They are going to remove these BLEBS and rough up the surface of the lung to make it stick better to the chest wall, this will help keep air out while it all heals. Think of 2 pieces of bread and spreading jelly on them, now stick them together so an air pocket can't form between them from the little holes in the bread. A new chest tube will be placed as well. After surgery he will be in ICU for at-least 1 day. Then it will be another 3-5 days in the hospital.
Wait, um did my world just stop spinning??? Yeap, life was just turned upside down. Marty, my rock, my dear husband who is almost always by my side is going to have a major surgery and be in the hospital.
No time to take that all in, at-least no time to let it slow me down. You see, I'm the one everyone depends on. I now need to go make the phone calls while Marty gets some rest. I have to find some lunch, it's almost 2:30 and the cafeteria closes for the day at 2:30. I grab a quick bite, no phone signal so can't make calls yet, so I rush myself. Then outside to call my mom, his mom and his sister. Give the church secretary a call so she can pass the word around there.
Back in to check on him and think about what to do with the kids. What is the polite amount of time to leave your kids with friends without over stepping? What's the best way to ask if someone will help by taking them for a few hours? Are they really willing to keep them longer or are they just saying it to be nice and should I know that? On top of that, I keep thinking of how strong I need to show I am for the kids. If I freak out, the kids will not handle this as well, they need a strong parent to feel safe and protected. I also am the person that never lets anyone see me break. (More on that in a different post!)
I go pick up and kids and grab some dinner. We take it back to the hospital room to have dinner as a family. We all watch some TV with Dad, like most nights, then head for home around 9pm. The next morning, the boys get a ride to church and I am to go have church with Marty, we're going to watch a sermon online. Andy forgets his bag of supplies, the boys are going to spend the afternoon with another church friend, so I now have to run by the church. Of course most folks who see me want to know how things are and whats going on, I talk for a few and get going to the hospital. We have a calm day and I again head out to get the kids and dinner, only to find they are still out eating a late lunch with friends and we make arrangements for someone else to drop them off at the hospital later. So I grab dinner for just the 2 of us and spend some more time alone with my husband. I haven't had this much time alone with him in years! The kids arrive via church visitors and again we leave around 9pm.
Monday morning arrives early, we are up and at the hospital by 6:15am. Our deacon and youth/children's pastor arrive in time visit and pray before we all to head down to pre-op. The boys and deacon to the waiting room, pastor and I with Marty. Short wait time, all the pre-op questions and last check in with the surgeon, it's now time for a last prayer before he goes into the Operating room. Now we head back out to join the rest in the waiting room. We all head down and get some breakfast. Then back to the waiting room. The surgery takes about 2 hours and the Surgeon comes out afterwards to give me a short consult. “It's done, he's doing good. They've got him in recovery and soon he'll be moved to ICU. They'll let you know when you can see him.” And that's about it. This Surgeon is a man of few words, really!
The boys and I were supposed to go to a Pumpkin farm with friends from church but it's rainy and cold out. I call them, the kids can just stay in and play together for the day. So I send the boys off with the pastor, he'll drop them off, and continue to wait for Marty to get out of surgery with our deacon. BTW, our deacon is great and we love him like an uncle. He also co-teaches the boys Sunday School class, so they know him well too!
While the surgery takes about 2 hours, the recovery and moving to the ICU, took another 2 hours! I send our deacon off after we finally get to see Marty. I then go grab lunch and make the phone calls. Marty's parents and sister are going to fly down the next day and stay through Friday. They are going to stay in a hotel, so I don't have to worry about the house being clean. I still have to make all the update calls to them and the rest. I also need to find out what time to go get the kids and what/where everyone was eating for dinner. “Some laundry needs to be done,” that thought flashes through my head as I am dialing the phone, along with the rest of the list that never seems to end.
Tuesday dawns and we again head for the hospital. Today we have brought along things to do because we are planning on staying all day, no going to visit friends. Besides, family is coming. It's a long day, they move Marty out of ICU to a regular room in the late morning, his family sends text messages to let us know they have landed and are dealing with getting a rental car, going to check in to the hotel and grab some food before coming to the hospital. They don't get there until almost 4pm. We all visit for the next 2 hours. They are tired and hungry so they head off before valet parking closes at 6pm. I run out and grab some dinner for us, then the boys and I go home for the night. Wednesday brings more of the same except the family take the boys down for a late breakfast, then they go back to the hotel for lunch and a nap. The Surgeon comes in and removes the chest tube. Marty's level of discomfort seems to be related to the pressure of the tube stuck in his side??? I guess that might be uncomfortable! His family gets back later as the boys and I are heading out for dinner at church.
Thursday brings a new day. Marty has been trying to prove he's well enough for a discharge. See, he has been on the Pastor search committee at church and there is a special meeting that Thursday evening in regards to that search. Once Marty's family arrives and the talk turns to this subject, it begins to spark disagreement. Comments are made that are not polite, some tears are shed and his family steps out for a moment. I make plans to leave, I don't want to continue this and cause any more issues. They step back in and ask to take the boys out for lunch and shopping. Off they all go. The conversation continues, just now through the phone and text messaging between Marty and his family.
Marty also does get the discharge order. But can't seem to find a supplier to get the walker to the hospital. We finally agree to have it delivered to the house and get out!! Drop off the prescriptions on the way home. Get him settled and the walker arrives! Then off to pick up the medications, pain level is high from the travel home. I'm back home in a flash with the medications, he is relaxed. The boys will be returned around 5:30pm, we need to leave around 6pm for the meeting. We're cutting it close but we make it. It's a great evening and Marty is happy.
That night we manage to get him up the stairs to the bedroom. After packing in the pillows around him to make him comfortable, I'm left with a limited space to sleep. Neither of us gets much rest. The next morning I get him settled downstairs and he tells me that his family is coming for brunch, he told them I would cook it! I panic for a minute and then start planning. Pancakes- got enough supplies, little bite-size sausages- got enough those. The the boys decide they want waffles! Ok, still can do. So, got the brunch stated and had a great time. They had a plane to catch so, off they went.
Marty needed a nap, he had decided that he was not going upstairs anymore, so the couch was made comfy for him. I took the boys and went to the pumpkin patch, we did the trip in under 2 hours since I didn't want to leave Marty alone too long. Made dinner that night and started our new lives of Marty's recovery. It was slow going, and he good days and bad. We never seem to leave the house except to take him to a doctor's appointment or church.
Andy had an appointment 2 weeks later at Scottish Rite, it didn't go as planned. It was with Neurosurgery, a Doctor I had never met before but the previous Dr. had left the practice and I didn't care for him anyway. This doctor decided to “tap” Andy's shunt, stick a needle in the reservoir for drawing cultures or checking pressure levels. He didn't like the pressure level, so he wanted us to go to the hospital and get further evaluation and testing done. That is another story, but we ended up staying in the hospital for 2 nights that we didn't need to! In the mean time, I got Ryan doing the cooking and feeding of his dad. Folks from church were great and offered to take Ryan, but he was needed to take care of Marty who couldn't stand long enough to cook, yet.
So we got to talking about how between Marty's hospital bills and now Andy's, our out-of-pocket maximums would now be met and that hernia that he had been dealing with for the last couple of years should be addressed. He was already on short term disability and this way he wouldn't have another stretch of missed work. So we talked with the lung surgeon and got the go ahead from him. Met the general surgeon and scheduled the surgery, 2 weeks after Andy's hospital stay. It was supposed to be a spinal block with a little sleep juice, no full anesthesia, and day surgery. Ended up with the spinal taking longer to wear off and pain that was difficult to control that first night, so he spent the night.
So now I have had one of my guys in the hospital every other Friday night over the last 4 weeks. I'm ready for a break at this point. We make it through the next 3 weeks and break the streak. Marty is now focused on his hernia recovery and the lung recovery is almost complete. In the mean time, the short term disability insurance has only been covering about ½ of his normal wages since we have to pay his employer for our portion of the health insurance. Now the insurance company has decided that Marty should be recovered enough to return to work, unless he has the Surgeon fill out a form. We take it to the Surgeon, he fills it out, we fax it in. Then we wait. About 1 week goes by and we receive a check with a note, “It has been calculated that you should be able to return to work on Dec 20th. This is the wages for the Dates of November 28th through December 19th. Your case has now been closed and should your situation change, please contact us.” That's it! BTW, the form the Doc filled out, “Estimate date return to work- January 15th.” The letter stating the same came 2 days later with an added line that they would require addition statements from a Doctor if we disagree with their decision. “A note from a Doctor would not be enough proof.” So starts the phone calls, they keep asking for more notes from the doctor's office, they keep sending it to them. So far, I guess the doctor didn't write enough notes to satisfy them. We even got copies of all the records and faxed them in ourselves since they said they didn't get them all. Since faxing in the records, we have heard nothing.
Marty's side a week after the lung surgery.
The other hat that dropped during this whole adventure, Marty's employer informed him that he needed to get his Texas nursing license. Now, we knew that it was needed and dropped the ball on that before all this happened. At the same time, he is completely legal to work under his North Carolina license which is still good until October of 2014. So we start working on it, they then make it clear he can not return to work until he receives the license. That is a problem. The Texas board of nursing can be very slow at issuing the licenses. We sent the paperwork and the fee in November. They cashed the check and sent an email, they had changed the application and he needed to fill out the new one and mail it in. BTW the old form had the wrong fee, we had over paid by $20 but they have a no refund policy! He does that, and nothing. As time gets closer to him returning to work, he sends an email back and gets an automated response, “out of office until January 6th.”
Because of the disability insurance no longer paying, we push up the Doctors appointment and ask for a release to work. He gets a release back to work for January 7th, just 2 months after having the hernia repair and 3 months after having lung surgery. So he takes the release and copies of the email into work on Fri before the 7th, “Anything else I can do, is this enough proof that the Texas license is coming?” Everything looks good and it's all accepted. He meets with his direct supervisor and plan his schedule. Then Monday the 6th arrives with a phone call, “We've changed our mind. You need the full license. You can not return to work.” So, they have changed their mind. Then on Tuesday, they call and tell him that they have decided to give his position away, but they will find a position for him when he returns. Ok, still a chance to return to work, but maybe time to start looking for a new job. Maybe one that respects their employees and understands when health problems arise out of the blue?
  The latest, we received a certified letter from them. “Since you did not get your Texas license, we are going to accept that as your resignation. We are terminating your employment as of January 20th, 2014 and any benefits you have, i.e. health insurance, will end January 31st, 2014. You'll be receiving COBRA information in the mail at a later date.” Again, UMMM WHAT???? So, now because the nursing board hasn't issued the license, he quit? Yet, “We are terminating....” says, they decided. While we already got the idea that he needed to look for another job, we thought we still had a chance if the license came through before another job did.
Now it is late January and the bills are piling up. I have started to ask others for help.... big stretch for me. We are surviving, but I have applied and are now receiving food stamps to help. Not sure where we stand on receiving Medicaid yet, but it's also been applied for. Was told that are car (only 1 car for the family) is worth too much money to qualify for the “traditional” assistance funds. There are some hoops I go jump through to fight that, but is it worth it? Marty has been filling out applications everywhere, and had 1 interview and couple of phone calls, another interview is scheduled for next week. We'll see how it all works out.