Thursday, December 23, 2010

Aching hearts

Two weeks ago I experienced one of the most agonizing days I've ever had. My 24 year old daughter, 12 weeks pregnant, underwent a procedure on her heart to draw fluid from the pericardial sac. She had been diagnosed with pericardial effusion. An accumulation of excess fluid around the heart. My emotions are still on edge, but in writing this and seeing it in black and white, I am hoping to ease my mind. While my heart is full of praise to God, for allowing my child and future grandchild, to survive this ordeal, I still struggle with the "what if's" that continue to go through my head.

Paige's pregnancy has been a roller coaster from the beginning. It started with a small panic when she unexpectedly discovered (very early) she was pregnant. She'd had a recent x-ray and was worried that it may have harmed a baby she wasn't aware she was carrying. An early ultrasound (to be on the safe side), ordered by her very attentive OB, Dr. Carl Dobson, showed the baby was growing and it's tiny heart was beating soundly. The ultrasound also showed a small subchorionic hemorrhage. Another couple of weeks of panic, until they determined that it was a small spot and had she not found out so early that she was pregnant, probably would have absorbed and she wouldn't have even known it was there.

What turned out to be a tiny, unremarkable problem caused a chain of events that eventually led to the discovery of the problem with Paige's heart. Because of the hemorrhage, Dr. Dobson wanted to see Paige more than usual to keep an eye out for bleeding or growth in the hemorrhage. Paige who has always been very thin, started to show and gain a significant amount of weight by 8 weeks. Her face, hands, legs and ankles started to swell notably. She asked Dr. Dobson about it and he talked to her about reducing her sodium and drinking lots of water with lemon as a natural diuretic. By her next visit, she had gained 8 lbs in two weeks, she was having shortness of breath and periods of time where her heart felt as though it were racing. She couldn't lay flat without struggling to breathe and was having difficulty sleeping. Dr. Dobson referred her to a high risk pregnancy group, to work in conjunction with him, and get an outside opinion on what might be happening. He thought that a surge in progesterone might be what was causing the swelling but since it was so early he thought it necessary to rule out any other issues. I am so thankful that he is not one of those Dr.'s with a huge ego and is not afraid to say, "I'd like to get another perspective on this one."

The Maternal Fetal Group is based in Nashville and affiliated with Centennial Hospital. They specialize in high risk pregnancies and they also have an office in Bowling Green. Within a few days, Dr. Dobson's office made an appointment for Paige, in Bowling Green, with Dr. Lenzi. They performed an ultrasound, again showing that sweet baby's heart beating, and growing. Dr. Lenzi, took a family history and talked to Paige for a long time, about how she was feeling. She agreed that her swelling could be caused by her body reacting to a surge of progesterone but said she would like to rule out the worst case scenarios first. (I am so thankful for good Dr's!!) Dr. Lenzi definitely wanted to check her heart, lungs, and kidneys, along with some other possible vitamin deficiencies. Paige agreed to the treatment but explained, that with her job, she needed to condense these appointments so as not to miss more work than necessary. Dr. Lenzi's office made an appointment with a cardiologist for a consult and echocardiogram, wrote an order for blood work and a 24 hour urine catch to check for protein in her kidneys. The plan was to see the cardiologist the next day, perform the 24 hour urine catch on Sunday, so that she could take it to the lab on Monday and have her blood drawn for the other tests, allowing enough time for most of the results to be sent to Dr. Dobson's office by Monday afternoon, when Paige was scheduled to see him again. Sounds easy enough doesn't it? Two Dr.'s understanding and listening to their patient. Shouldn't that be the way it always is?

The cardiologist they referred her too was Dr. Tullio Emanuele. The appointment turned out to be the start of a nightmare. This Dr. has the worst bedside manner of any Dr. I have ever had the misfortune to see. (and belive me when I say this, as many health issues I've had, I've seen alot of them!!) Paige was a new patient so they performed an EKG, took her blood pressure, which was normal, and weighed her at 140 pounds, all standard procedure for that office. When Paige first realized she was pregnant she weighed about 124, in 12 weeks she had already gained 16 pounds. Dr. Emanuelle made his appearance, and asked Paige what her problems were. She explained about her swelling, her shortness of breath, and racing heart feelings. He continued to question her, but it appeared to both of us that he was trying to figure out why she had been sent to him. He asked her repeatedly about whether or not she had ever done any strenuous activity, be it in school or on her own. When she told him she danced ballet from the age of 5 through 18, and that she and Jason walked alot with their very active puppy since marriage. He replied he didn't think that was too strenuous. He kept looking from her to me, to her file and back again. His manner was distant and uncaring. He said he would order an echo and would see her in a few days. I told him that the echo was supposed to be performed at this appointment. Dr. Lenzi ordered the echo and consult with him for the same day. I explained that the days Paige was missing at work were causing some additional stress, and since the plan was to have everything done by her next appointment with Dr. Dobson, we needed to get the echo done as scheduled. This did not go over well, to say the least. Dr. Emanuele informed me that "he" was the one who would order the echo and it could not be done today because the tech had a full schedule. I insisted again that the appointment was supposed to already have been made. He continued to look from Paige, to me, to her file and back. I then asked if the EKG was normal. He answered quite sharply, "No, it's not." In my mind, this was all the more reason to go ahead with the echo today, . He left the room going to check again to see where the misunderstanding was and came back adamant that the echo would not be done until another day and we would need to make an appointment. As we walked out of the exam room, he basically left us standing outside the exam room door and went in the opposite direction from which we came. Paige was near tears and said, "I really don't like him!" I found the tech that perfomed the EKG and asked her to show us out. While trying to make the echo appointment, we explained to the woman behind the desk that we had expected to have it done today, and since that was not going to happen would it be possible to have it done Monday and be able to see the Dr. immediately after. She was trying to get it worked out when Dr. Emanuele walked by, behind her. She turned to ask him if he could see us immediately after the echo on Monday, and he angrily shook his head, waved his hands and said "WE'VE BEEN THROUGH THIS!". Although by this time I was seething, I quite calmly said, "we are talking about Monday", to which he turned and walked off. I asked the girl if he was always that way, to which she replied "oh, it's not you"! I apologized and explained to the girl that I was not blaming her for anything. I didn't intend to be pushy, but it's my daughter we are talking about, and her health and stress level was my first concern. At first it did not appear that she was going to be able to get us in on Monday. I looked at Paige and said, OK, let's just step back and regroup and see if we can get in somewhere else. Amazingly, about the time I said this, the girl was able to work out the echo, and Dr. appointment all before noon on Monday. As we left the building, Paige really started to cry and said, "Mom, I really don't want to see him again!"

My husband had an injury several years earlier and saw a wonderful thoracic surgeon by the name of Dr. Paul Moore. I thought he might be willing to guide us, as to what to do. I told her we would try to see if Dr. Moore could see her or at least see if he knew who else we could turn to. I said "Let's not cancel this appointment yet, because I think it needs to be done as soon as possible, but if we can get in somewhere earlier we'll do it."

This is when God took over. We went to Dr. Moore's office and just laid it out there, to the nurse behind the desk. Bless her heart, I'm sure she thought I was an overbearing, over reacting mother, but she was very sweet and said that Dr. Moore was out of town, and that he was a surgeon not a cardiologist and probably couldn't help her. I asked if someone could just guide us to another Dr. that might show a little more compassion and concern in a relatively short amount of time. She said I'll let you talk to Don. Don worked for Dr. Moore back at the time my husband saw him and we had recently seen him attending the same church we do. Don Johnson has a business card that identifies him as a Cardiology Nurse Liason. It fails to identify him as God's angel. He listened to our story, assured us that Dr. Emanuele was a fine cardiologist, "but", he said, "sometimes personalities just don't jive." (That's putting it in as nice a way as I can imagine!) Paige told him that she really would rather not go back to his office. He then immediately got on the phone. While listening and asking questions about our predicament, reassuring us that he thought he could help, and a couple of "I'll call you right backs" he worked a miracle. Within a few minutes he was walking us down stairs to OutPatient Services where Paige had an appointment for an echo. He told us that it had been worked out that cardiologist, Dr. Beth Bryant would be willing to read the echo and see Paige on Monday for a consult before her appointment with Dr. Dobson. No issues, no negativity, no procrastinating. Don left us with a smile and a "Good luck, I'll see ya'll." Paige, feeling much calmer and more relieved, called and cancelled her Monday appointment with Dr. Emanuele. The relief on my child's face let me know that we had done the right thing. What a day this had been! At this point my emotions had run the gamut. I was finally feeling somewhat relieved that things were working out and Paige was smiling! Isn't it amazing what a child's smile can do to a mother's heart. Unfortunately these feelings would soon change and I was not to see that smile again for several days.

The tech that performed the echocardiogram was the second angel on earth we ran into that day. I will always remember her. She was a gorgeous little red head named Lori. She was friendly, polite, calm, and compassionate to our story. As she started the ultrasound she asked Paige if she was in any pain or experiencing shortness of breath right then. Paige said no pain, just pressure, and it was difficult to breathe when she was laying down. Lori talked calmly and reassuringly throughout the test. When she finished she asked us to wait, told Paige to go ahead and dress but she needed to check to make sure the pictures turned out. I thought that was odd, but said nothing to Paige. Why would she tell her to dress if there was a possiblity she may have to redo some of the pictures? When she came back she told us what she saw and that she had called Don and he would be in to see us in a minute. What Lori said made my heart take a nose dive. I watched her looking at and talking to my baby, I watched her expressions, I looked at her eyes and I heard her voice. I saw great concern in a face of calm. I kept waiting for the "but don't worry." Those three words were not spoken. The reason Paige's EKG was not normal, was because she had fluid around her heart. Alot of fluid. Normally a person has about 1mm of fluid in the pericardium, Paige had 3cm. Lori said if she were to guess it would be about 2 liters. She also said, "I don't think you should wait through the weekend. You need to have something done and Don is working on that now." Within minutes Don came in and explained more about what was happening to Paige and what he was trying to do. The other cardiologist, Dr. Beth Bryant, who was not on call, but happened to be in the hospital, was going to come and talk to her. This was serious and needed attention. Immediately.

As I write, my heart is pounding and my eyes are tearing remembering this moment. Paige was scared, starting to cry, worrying about the baby, while I sat, knowing I had to stay strong and in control, but wanting to cry and worrying about my baby. I had to do something so I took action and made calls to Jason(my son in law), my husband, and my oldest daughter, Ashley. By the time Dr. Bryant came in and started talking to us, wheels were already in motion to send Paige to Nashville. She said that her normal blood pressure and lack of chest pain made this difficult to understand. She said until she saw the echo, she would not have believed how serious Paige's condition was. Paige was walking around and functioning while most people would have been in the hospital barely able to sit up. Dr. Bryant gently explained that there were not any available cardiologists in Bowling Green, who wanted to perform the procedure she would need, due to her pregnancy. Everyone thought it would be better to have a cardilogy team and OB team work together. It was decided that she would be sent to Centennial Hospital in Nashville, ER to ER. The rest of the family arrived and she was admitted to the ER, just long enough to get her ready for transport. I did not realize then, that my baby would be put in an ambulance, lights on and sirens blaring for the 70 mile drive.

The EMS team graciously allowed Jason to ride with them. I know that's his place now and that is how it should be, but my heart kept saying that's MY baby. I didn't know if I would be able to stand to let them leave without me by her side. I knew her condition was serious and the realization began to hit me, HARD. The "what ifs" started and I cannot describe the pain they caused. While the EMS team were preparing Paige for the trip, Clyde and Ashley went to retrieve the cars so that we would not be far behind the ambulance, I sat in the waiting room alone. Don Johnson came from the ER to let me know she was almost ready, he sat in the empty chair beside me and looked straight ahead. I still had not cried. I asked about the baby, if anyone had checked it to give Paige some peace of mind. He looked at me and said, "You need to understand that right now, with the fetus at 12 weeks, it will not be viable without it's mother. They will only be concerned with Paige and saving her life." I remember thinking, he just called that sweet child, soon to be my grandchild, a fetus, To us, it's Paige and Jason's baby. I knew Paige would be devestated. I nodded my head in understanding because while I knew it, hearing it made it seem so much more real. He told me when the others got back we could go in and be with her until she left which would be just a few minutes. Everything was quickly becoming a blur. When we kissed her goodbye, I felt like I was going to burst. She was crying and scared and I was telling her, we'd meet her at the hospital, and she was going to be fine. She looked at me and said are you saying that because you believe it, or to make me feel better? Her question jerked me into the realization that I had to keep my faith! I told her that I believed it. It wasn't a lie, the "what ifs" were just that and I believe that God hears and answers prayers. He definitely heard mine, loud and clear. Paige is at home now, still recovering, and still looking forward to her baby's birth in June.

I have cried. Not the screaming all out boo hooing that I know will come. Most likely it will come out of the blue. It will probably be ugly. Hopefully I will be alone and able to get it out without causing anyone else to be upset.

There were many more moments the 3 nights and 4 days in the hospital. Like the morning I slipped into her room at 5:00am. Clyde and I had spent a couple of nights in chairs in the CCU waiting room, I suddenly felt refreshed as I saw her sleeping peacefully. Her swelling down, looking more like herself than she had in weeks, and seeing her devoted husband sound asleep in the floor beside her bed. Those moments are for another days writing. The wonderful nurses and doctors at Centennial Hospital, will all get their due as I will never be able to say enough about their excellent care of her.

As my sweet Ashley reminds me often, God is good all the time, All the time, God is good!

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