Our Time at Mayo Clinic

I'm not sure where to begin the story of the events that led up to my daughter being seen at Mayo Clinic in Minnesota for a third opinion. Jaycee has experienced more health scares and illnesses to properly be summarized in a short paragraph. If you are my friend in real life or follow my blog on Facebook, you have some sort of perspective on her situation. If not, may I suggest you read the following posts for some background:

Living in ICU

Your Worst Thing

The Two Versions of a Hospital Stay

or for the full story, check out my book Badges of Motherhood. 

The recent frustrations with Jaycee's health began in the fall of last year. Jaycee had a couple of hospital admissions close together. One was for a fairly bad pneumonia. When discharged to home, she didn't bounce back. Her recovery was long, slow, and stressful. In January of this year, she ended up in the hospital back-to-back. By the second admission, they discovered she had RSV and an "atypical" pneumonia. Again, her recovery was long and slow. There were other illnesses besides these that didn't require the hospital, but intense home interventions were needed to keep her breathing stable.

By spring, Jaycee met with a couple of her specialists who were concerned with her respiratory infections. Numerous immunology tests were completed for the third time in her life. Nothing spectacular was found. Again. At the end of the tests and appointments, the best recommendation was for Jaycee to start monthly asthmatic shots though nothing in her blood work indicated it would be helpful.

When my husband and I received the call regarding Jaycee's tests and recommendation, we were exacerbated. There was no answer for the respiratory infections. We were given little hope that things would improve because we were given no rhyme nor reason why she was getting sick repeatedly and recovering so slowly.

"Sometimes, I think we should just take Jaycee to Mayo Clinic," I said to my husband after the call.

My husband asked, "Well, why don't we?"

"I don't know how you get into Mayo Clinic. Is she bad enough to go? We've already had a second opinion. Does she need a third?"

My husband responded, "It's worth checking into. What have we got to lose?"

Thus we began a quick look online to discover that anyone can call Mayo Clinic and request an appointment. The next day that's what I did. There were two paths to receiving appointments. We could pick a specialist to see and discuss Jaycee's problems and concerns. This would be quicker option. Another route would be to see a diagnostic team. We opted to schedule with a Pulmonologist knowing she could be referred to a diagnostic team if deemed appropriate.

Some weeks later, we made the nearly 9 hour drive to Minnesota. When we took our first steps inside Mayo Clinic, we were in awe of the look and feel of the hospital. Mayo Clinic is known for helping the most complex cases, and there seemed to be a dose of hope somehow contained in the building. Our nerves grew as we waited for Jaycee's time with the Pulmonologist and a Respiratory Therapist. We discussed Jaycee's medical issues for 90 minutes. We were relieved to hear they were more than interested in evaluating Jaycee with a team of other doctors at a subsequent appointment.

"We've seen many sick children like your daughter. We will figure this out," the Pulmonologist promised. It was a confident statement, especially when others have tried and failed.

Roughly six weeks later, my mom and I arrived at Mayo with Jaycee for a comprehensive evaluation. Over the next 4 days, we met with several doctors and hospital personnel for clinic appointments or tests. Everyone was interested in helping Jaycee get to a healthier state with her lungs. Most of the team members devoted ample time to her appointments, which is something I rarely encounter anymore. Jaycee had many tests completed, but the team was always considerate of Jaycee's tolerance and stress. Jaycee wasn't the only one they were concerned about.

During one of the appointments, a professional looked at Jaycee's long list of illnesses and surgeries. She stopped and asked me, "How have you coped with all of these hospital admissions?"

Only a couple of people in my daughter's medical team have ever asked me that question. I felt this place saw the complete picture. This wasn't about pneumonias, medications, and hospital admissions. It is really about giving Jaycee a better life. In turn, it would change my life, my husband's life, and my son's life. Her illnesses affect us all in different ways. I felt someone "got" it.

Jaycee drawing some pictures waiting to be called back. 

Between our appointments, we had time to explore the hospital. We marveled at some amazing statues and art scattered all over their campus. As we walked hallways and tunnels to get to the parking garage, we passed a series of paintings by Andy Warhol. At times, I didn't know if I was in a hospital or a museum. The waiting areas weren't sterile boring areas with lines of chairs. It was more like a hotel lobby and, therefore, more relaxing.

In the main lobby, a piano was often being played by a skilled musician. Once, there was a beautiful voice belting out a hymnal that drenched the listeners in an overwhelming sense of peace. For a second, I forgot we were in a hospital and would soon be hearing news about my daughter's future health.

The entire town had a special feeling about it. I am guessing that most people visiting Rochester are there for Mayo Clinic. People in wheelchairs, wearing bandages, or carrying Mayo papers around were commonplace outside the hospital. There was an air of understanding in the whole town that many people were here searching for answers or enduring some health battle. You think it would feel depressing, but it was actually the opposite. It reminded me of our time at Give Kids the World Village on Jaycee's Make-A-Wish trip. It was a community of people who understood your journey even if they knew nothing about it.

Then the long awaited moment happened. The team at Mayo explained to me while my daughter suddenly turns blue when she's sick. They described why she gets repeated respiratory infections and why she doesn't recover quickly. I don't want to get into the technicalities of it all here, but there were three new problems identified with her lungs/airways. It was a relief and a disappointment all rolled into one conversation. We have seen multiple specialists over the years, and none of them have provided these exact answers. Before this trip, I had decided we probably wouldn't receive answers again, but, much to my surprise, they came with thorough explanations and pictures. Everything suddenly made sense. There are options available to treat her new diagnoses, but there's no magic fix. The best thing for her is to stay well, which seems like an impossible feat given her history.

As we have settled back into our routine at home, I am left with a mix of emotions. The path to Mayo began with a spur of the moment conversation between my husband and I. It was a discussion that seemed God inspired because it was so random. Because of that, I want to believe that our trip to Mayo Clinic will lead to better things for Jaycee. I am grateful for answers and hopeful they can help my child.

For now, Jaycee will start new treatments, await medical equipment approval from our insurance, and pray those lungs keep breathing well every day.

Dear DS Clinic-Here's Why I Won't Be Back

Dear Down syndrome clinic,

Thank you for the reminder to schedule Jaycee's appointment this year, but I regret to inform you that I won't be coming back. I have been bringing my daughter to your clinic for the last 3 or 4 years. We initially switched to your clinic because we were at a loss with our daughter's health. The referrals you made to specialists in your hospital have been enormously helpful, and for that, I'm grateful.

But last year our visit to the clinic was not helpful. The only person who had anything positive to say was the speech-language pathologist (SLP) who was impressed with Jaycee's ability to communicate with her speech generating device. Maybe the fact that I'm an SLP caused this person to be a little more intrigued by Jaycee's communication and attempts at verbal speech. Whatever the case, the SLP interaction went well, but not much else did.

Our individual meetings with the occupational therapist (OT) and physical therapist (PT) consisted of them watching Jaycee make certain movements or do certain tasks. I was asked several questions. The bottom line from both therapists was that Jaycee's muscle tone was very low, and both appeared concerned by the things Jaycee couldn't do. From my perspective, she's been "really behind" her entire life, so I don't anticipate that magically changing as a preteen. I didn't hear anything real positive from either person.

Both suggested that we needed to seek private therapy to help her- aside from her school therapy she already received. I explained how her muscles have been affected by her hospital stays and illnesses. She use to bounce back from being in a hospital bed for a week, but now she needs quite a bit of recovery time. In addition, we have done private therapy off and on in the past that resulted with minor improvements and varying amounts of co-pays with our health insurance. Private therapy is not cheap. When someone suggests it needs to be done for Jaycee, I understand where they are coming from but last year we were paying off a large medical bill. We weren't looking to add to it.

My biggest problem during the 3 hour appointment was the nutritionist. I know I'm overweight, and I know my child is overweight. I blame much of my own weight gain on the stressful events that have occurred with Jaycee. I have had to cope with her diagnoses and her intense medical care and scares on my own, and I often turned to caffeine and food for comfort. In the past, I haven't always fed Jaycee the best. I know I can improve. However, I didn't need the hour long lecture on weight gain, nutrition information, and food facts. The plate demonstration, I felt, was a bit over the top. I have a Master's Degree, and I felt like at some point the whole thing became a little insulting.

When I tried to explain that part of the problem was the regular use of oral steroids (5 times last year prior to the appointment), frequent illnesses that often include multiple treatments a day for weeks, and a few hospital stays, they were immediately dismissed. I get that the bigger issue is me and what I'm feeding her but to downplay all of Jaycee's health issues that affect her everyday life (and mine) was off putting. It is something to consider. Her biggest health issue isn't her Down syndrome, constipation, and slow metabolism. She doesn't fit in the normal Down syndrome box. Her respiratory status is a major factor in everything we do or don't do. Sometimes, she (and I) are home bound for days and weeks at a time juggling treatments and medicines. Getting her to exercise in the middle of that is not a priority nor even a possibility with her labored breathing. In those times, I often feel like I'm in survival mode as the strain of monitoring her breathing weighs heavily on me.

After an hour, the nutritionist finally exited the room, and it was the doctor's turn to reiterate what the others had said. She, too, continued the lecture on my daughter's weight and how it was detrimental. She, too, was not concerned with how her frequent illnesses contribute to it. At that point, I gave up. I knew my role was to be quiet, accept the handouts, and agree to work on her weight.

Before the day ended, we met with a behavioral specialist. This was the person I was excited to speak with because his advice has always been helpful. At first, the conversation was driven by the topic of the day (her weight) and her lack of interest in exercise. He did provide some helpful ways to try to change that aspect. Then, I finally got to discuss the main concerns I wanted to bring up for this appointment- my daughter's increasing refusals, fears, and displays of anxiety related to all things medical. This concern of mine was something that I did need assistance with because it impacts every trip to the specialty appointments. This was my one priority I wanted to discuss that day with the team, yet it was given very little time. Jaycee's anxiety and behaviors have led me to avoid taking her to routine appointments by myself. I can't do them alone. If this would have been listened to, perhaps, you might also understand why private therapy in a hospital setting (which would be my only option given where I live) would be emotionally draining for Jaycee and I due to the fear she has associated to such places.

When the clinic appointment finished, I felt drained as I made the 3 hour drive home. I started to replay some things in my mind, and self-doubt started to creep in. I shed some tears later that night and again the next few days. I felt frustrated by the appointment, the focus on my child's weight, and my parenting that seemed to come into play. I felt like a crummy mother, and I felt that one problem with Jaycee had been singled out with little praise for anything else I do as her mom. I didn't like how I felt after the appointment. I have enough to deal with in her life as her caregiver who helps her daily with her bi-pap, nebulizer treatments, airway clearance, medicines, and homework.

When I read the letter to ask me to schedule a visit, I decided I wasn't going to add to my stress this year. I have made some recent changes with our diet, but I feel like it probably wouldn't be enough to make the nutritionist or the doctor happy. I feel like we are in a good place, but I don't know if it will be good enough. Thanks to a suggestion from my Aunt Sandra, I found a way to get Jaycee to exercise in the past year without much resistance. Headphones and an iPod with her favorite songs did the trick! Still, I doubt I'll hear any accolades. I'm sure no one would want to hear about Jaycee's 4 hospital admissions since our last visit, 4 oral steroid courses this year, and the long battle to get proper foot braces that allowed her to walk without pain. I feel that the focus will be the faults. For those reasons, I will not be back to your clinic. Maybe next year, I will feel differently. But for now, I'll let the six other specialists Jaycee sees be enough. They monitor her weight as well, and I'm aware of the goals we need to achieve.

I hope if I do come back that I will feel acknowledged. I hope that my daughter can be viewed as an INDIVIDUAL with Down syndrome who certainly doesn't fit every characteristic. I also hope my own concerns can be discussed more at length.

Sincerely,
Jaycee's Mom

My Issues with the Health Care System

I am grateful for all the medical care my child has received over the years. Without the knowledge of doctors and access to care, Jaycee would not be here.

I have been to many specialty appointments with Jaycee over the years. She has spent time in a couple of different emergency rooms and a few different hospitals for illnesses and surgeries. We have gotten to know our area's health care system well. Prior to Jaycee, I didn't have much experience with doctors or hospitals. In the past 10 years, I have had more experience with this system than I would like to have.

There are three things that really aggravate me about the health care system here where I live in America. If you are familiar with doctors and hospitals, you will probably identify with some of these.

1. Results from tests, labs, and x-rays are not quickly communicated to patients.
If there is a true emergency, the results of different tests are easy to get. Results come quickly in the hospital and can be obtained easily by asking a nurse or doctor. When tests or labs are done outpatient, the results are very slow to be communicated to patients. I find this very frustrating!

The doctor that orders labs for Jaycee is not present when we hold her down for the blood draw, deal with her fists of fury, and listen to her cries as she is often poked again and again to find a vein. If we go through all of that for blood work, then I want to know what the results are! We went through a considerable amount of pain to get them.

When I don't hear back from the doctors regarding labs and tests, I get worried.
-Did the doctor forget about them?
-Maybe they didn't call because they are normal.
-Maybe the labs are bad and no one remembered to follow up on them. Maybe there's something wrong and we will never know.
-Maybe the lab never ran the sample.

Because my mind can supply many scenarios, I would appreciate a call whether the labs are good or bad. I am grateful for the rare doctors that do call me within a couple of days. They get a gold star from me.

One of the things that I do like is the access to online medical records from our Children's hospital. I can go online and now obtain lab results a day later. I no longer have to wait for a nurse-though I still feel like they should call. I can make sure there is follow up when I see a lab that is out of normal range. I love that sometimes I have to point a particular bad lab out to the office, since the follow through just was not there. All these years later, it still amazes me how many labs and test results aren't communicated to the patient or their family when it's their insurance and co-payments paying for it.

2. The wait time in waiting rooms is sometimes ridiculous.
Doctors have waiting rooms for one reason- for us to wait. Some specialists we see are consistently on time. Others, I just dread going to because I know the wait is going to be so long. I don't understand why patients must have to wait and wait. I don't understand if the doctors are over-scheduled, if there was an emergency that pulled the doctor away, or if the doctor just showed up late. I don't mind waiting 15-20 minutes as that seems to be the standard minimum wait time for appointments. But long waits every time at an office signal to me that something is wrong with the doctor or the scheduler. I wish my time was valued as much as the doctor's time. Usually, there is no apology or an explanation for the delay. It's just expected that we wait for the doctor. I have spent more time in a waiting room with Jaycee than I ever wanted.

3. The wait to get into specialists is sometimes too long.
Picture this: You are told something may be wrong with your child. It's nothing life or death, but it is a diagnosis that may have life long consequences. Now imagine that you are told to wait 8-12 months to get in to a doctor to confirm a diagnosis. That's nice, right? That's the worst scenario we have had. But there are other less worse situations. Sometimes a test result comes back that requires us to see a specialist, but the wait is 4-6 weeks. That's 4-6 weeks I have spent googling the possible problem and playing out every scenario in my head. In time, I have learned that this too is standard. If it's not life-threatening then we are expected to wait until there is an opening. Just because the possible problem might be life changing for us, it doesn't mean we are a high priority to be seen.


I have other issues with the health care system like how ridiculous some things cost, but that's for another post another time.

What about you? What's your top 3 annoyances with the health care system?

5 Ways I am Messing Up as a Parent

Parenting advice is easy to find. You don't even have to look for it sometimes; it finds you.

With my daughter, I have always felt the amount of advice we have gotten was quadruple the norm. Part of that is because there are simply more professionals involved in her care. She sees a genetics team, GI doctor, Pulmonologist, Cardiologist, ENT, ophthalmologist, and audiologist. She has also a team of therapists and teachers at her school.

Many appointments with professionals over the years have resulted in some advice and recommendations. Of course, part of their job is to provide guidance and educate me in how to best help Jaycee, but sometimes I just can't do everything they ask. When you have a child who has many developmental and medical needs, life becomes a balancing act. For this reason, I can't follow every rule and piece of advice I am given.

These are just 5 areas I mess up as a parent.


1. I give my child juice.  Insert screams from the medical community... Doctor after doctor and the dentist have all lectured me on the incredible dangers of juice. I have been told to dilute juice if I do give it to Jaycee. Yes, I do dilute it sometimes but who dilutes juice for their 10 year old? She rarely has soda after all. But, I do have a feeling of guilt every time I pour her a glass now. The guilt is helpful.

2. My child watches way too much television. Jaycee lacks independent play skills. Occasionally, she will briefly play with her brother. But she rarely plays on her own. We have surrounded her with books, dolls, puzzles, play-doh, and everything in between. Still, if we shut off her devices, she generally just stares into space or follows me around the house. Her interest in movies has been a blessing when she's doing her twice daily nebulizer and vest therapy treatments. It also comes in handy when she's sick and confined to a bed for days. But, I do let her watch way too much tv. Go ahead and shake your head at me- I deserve it.

3. My child sleeps with stuffed animals. (Gasp!) Some of you may wonder why that is a problem. Well, let me tell you. Jaycee has asthma. It is advised that you not allow stuffed animals in the bed when sleeping because of dust mites. I follow many asthma protocols. Our house windows are shut 363 out of the 365 days a year because fresh air is filled with scary pollen, dust, and other allergens that could infiltrate our home. We rarely if ever have fresh flowers in our house for the same reason. We are neurotic about keeping Jaycee away from smoke. No one in our family smokes cigarettes but the dangers of smoke can come from bonfires, charcoal grills, or a neighbor burning leaves/shrub. These are just of a few of the things we do to help prevent her asthma from flaring up. With all of her diagnoses, we have dozens and dozens of guidelines to follow. Some things have to give. Stuffed animals and dolls in the bed are one of them. She wants these friends in her bed, and I am not going to deprive her of that too.

4. My child is overweight. Prepare your lecture; I have heard it before. I don't like my child being overweight; I don't like that I am overweight. I hate it actually. A few of Jaycee's doctors scrutinize how much weight Jaycee has gained between each visit. I understand their concern, and I realize this is an issue. I feel like an awful parent every time. But, I think I am in a more complex situation than they realize. Let's go back a few years. Jaycee was a healthy weight when she entered preschool at age 3. During the preschool years, her weight started to stack on. She was hospitalized 7 times during her three years of preschool and was sick a few more times but treated at home. Oral steroids became a common medication during those years. She ate and ate while on them. I would tell her no at some point and she would cry while signing "eat." I didn't know what to do; no one prepared me for her appetite and how to respond to it. During those years, her lung issues really became a problem and her asthma symptoms weren't controlled well by medication. She wheezed in cool weather. She wheezed in hot weather. I was afraid to take her outside most of the time because I was afraid of triggering an asthma event. Hence, exercise was limited to what we could do in the house. I purchased an indoor trampoline, a large therapy ball, and other games to play indoors. Getting her to comply with them was another story. Getting her to comply with outdoor activities is hard too. What does she like to do at a playground? Swing and not run and climb to get real activity. I know, I know, I am making excuses. I realize that. But, with Jaycee it is simply not an issue of I am feeding her too much. Her medications affect her weight. Her hospital admissions and illnesses affect it. Her almost 2 hours of sitting doing nebulizer and vest therapy treatments impact it. Her Down syndrome, which generally means a slower metabolism, is part of the problem. The fact that she eats extremely fast and doesn't seem to feel full is a problem. I still feed my 10 year old on a toddler plate so her portions will be smaller. Almost every meal, she wants more than what I give her. I restrict her diet for acid reflux precautions already (no eating 2 hours before bed, limited tomato based foods, little/no chocolate, etc.). What can I say? I am a terrible parent. Don't worry though, because I will be reminded of that at her next specialty appointment.

5. I do not care if my child does her homework. Sorry Mrs. Tolley! After your child has a couple of scary illnesses that almost take their life, your priorities change. That happened for me in 2013 when we weren't sure if Jaycee was going to survive after being intubated and in respiratory failure. Then a similar event happened again in 2015. It became clear that life is just not guaranteed for sweet Jaycee. After experiencing some things like that, it is difficult to fight your way through doing homework with your child. When Jaycee throws a fit and refuses to do her homework, I give up. I have learned to pick my battles and completing homework is not a battle I am willing to pick after a long day. Jaycee is not given a free pass; she will be put in time out or have movie time taken away, but I will not stress myself out to get her homework done. In all honesty, Jaycee's teacher has been good about understanding my point of view on this subject.




It is clear that I can do better in some areas. When these areas are brought up by professionals, I do confess my faults. They try to convince me to change my ways probably seeing me as a rebellious mother.

But, I will say that sometimes I am not given enough credit by these same people. Where are the doctors when I am setting alarms to wake up in the middle of the night to give her a breathing treatment? Where are they when I do her 50 minute medicine regime twice a day no matter where we are or what we have on the schedule? Where are they when I have a taught my child a skill to be more independent? Where are they when we are sitting on the couch simply loving each other? No, I don't get high fives and "Good job!" for those things.

For all the way I mess up as a parent, I can assure you there are plenty of things I am doing well. Now, who wants to celebrate the things I am doing well with a tall glass of 100% undiluted apple juice?

My Thoughts While I Wait in a Waiting Room

Over the past ten years, I cannot count the number of hours I have spent waiting for appointments with my daughter.

Physical therapy, cardiology, well checks, ENT, audiology, pulmonary, genetics...you get it. Lots of opportunities to wait.

Most places I know what my wait time for Jaycee and I will be based on previous patterns. Pulmonary usually runs on time. The eye center requires me to pack for an hour of sitting and waiting. And God help us if we are sent to the outpatient lab!

You would think I would be great at waiting by now, and most of the time I can handle it. But a few weeks ago, I waited for over an hour with my daughter to see one of her doctors. During this long and unexpected wait, my mind began to wander.

These are things I fantasize about doing while I wait in an uncomfortable office chair for my daughter's name to be called:

-What would happen if I asked for a discount based upon my long wait? I am not at all satisfied with her care so why do I have to pay the full price for sub par treatment? What if they agreed? In a restaurant, you might get something off for poor service if you complain. Why not here? No, I doubt this idea will ever work.

-What if I told the doctor after his assessment of my child how ridiculous it is to wait and wait every time I see him? I think about telling him how rude and unprofessional it is to keep people waiting like his time is more precious than mine. I would love for him to sit with my daughter with special needs asking to go home every 5 minutes in his waiting room. Perhaps he would want my advice on how to more effectively schedule patients since his current method doesn't work. Even though I could give great advice, I doubt he would want it!

-Perhaps I should start tidying up his waiting room. I hate staring at those cobwebs in the corner and the magazines could be alphabetized. Perhaps my cleanliness will freak them out and they will call us back so my odd behavior will stop. This one might have potential!

-I dream about walking out after a long wait and never coming back to this provider of care. Maybe I would even give an eloquent speech before exiting that will express the feelings of others waiting too. Maybe they will applaud me as I walk out. But, I would probably be charged a fee for not canceling 24 hours prior to the appointment time.

-Perhaps I could start up a conversation with the others around me. Maybe we could all walk out together teaching that doctor a lesson. Maybe he would run out into the parking lot begging for forgiveness.  Maybe not...

-I envision myself inviting the doctor over for dinner. When he arrives, I escort him to the living room until dinner is ready. I make him sit there alone while I disappear into the kitchen delaying the meal as long as possible. I will smile as I announce, "You may come to the table now," an hour later than he planned.  Who am I kidding? He would probably show up two hours late anyway ruining my plans!

And as I dream and scheme, I hear my daughter's name being called. I am brought back to reality and stand up feeling like I have won the lottery as we walk past those poor folks sitting there reading old magazines and looking bored.

Today, I didn't have to start cleaning the office to get called back but maybe next time.

Jaycee waiting for an appointment

Cheating

The first time I cheated I wasn't sure what I was doing. My daughter was about 2 years old or so, and I was unhappy in my relationship with her doctor (#1). I toyed around with the thought of changing doctors.

Doctor #1 was really great. She was a woman and a mother, which made her compassionate and understanding. She spent time talking to me and listening to me. Even if I was overreacting about something, she had a nice way of telling me to calm down. Because Jaycee was a "sick" baby, if I called to get an appointment for an illness, they would work her in no matter what. The staff was nice. But there were some problems.

Doctor #1 was a 40 minute drive from my house. It wasn't uncommon for us to go to the doctor two or more times a month when she was a baby. The distance was difficult when I needed to get her seen right away but also had to schedule around my work and other appointments. The distance was the major problem with Doctor #1, especially as time went on.

Doctor #1 went to electronic medical records after I started going there. Due to the nature of the records and the things required for every visit, I grew weary of the same questions I was asked every time. What medications is she on? What kind of formula? How many wet diapers does she have a day? Is she doing this or that? Yes, these were important. But, if I'm there three weeks in a row, not much is going to change. I didn't like having to list off the medicines and doses, etc. every time. I got tired of going over and over all of this stuff. I also felt that instead of just going over my concerns and speaking to me, the nurse spent most of her time with her back to me firing questions off so she could type them in. All of this sent me looking for some one new.

So I decided to try a local nurse practitioner ("Doctor 2") that was only 6 miles from my house. I took Jaycee a few times to see if Dr. #2 was comfortable with Jaycee's extensive health history and to determine if I liked the care she would receive from him. I was in limbo between Dr. #1 and Dr. #2, not sure who to commit to. After a few trips to Dr. #2, he asked me if she was now in his care. I told him if he felt comfortable then I would get her records sent to him and continue on. From then on, Jaycee and I have been with Dr. #2.

The problem was that I never told Dr. #1. A couple of months went by and Dr. #1's office called to schedule an appointment. It was during that awkward phone call that I "broke up" with Dr. #1. I told her receptionist how much I appreciated her and liked her but the distance was getting hard. It was lame. It wasn't very mature, but our relationship was finally over. No more cheating.

Six months ago, I found myself cheating again. Out of frustration of Jaycee being admitted in the hospital for 6 months in a row, I took my friend's advice and sought out a second opinion on her lungs. Jaycee had been seeing Pulmonary doctor #1 for about 6 years. She is very friendly and knowledgeable. I had no beef with her either but I couldn't stop one thought. What if there was someone else who knew something that could make her healthier?

I decided to cheat again. I didn't tell Pulmonary #1 what I was doing. I really didn't expect anything new to change as a result of seeing Pulmonary #2,so I thought I would tell Pulm #1 if some how this new doctor found or did something different. So, off I went a few months ago seeing new doctors, running tests, making adjustments to her medicines all without telling Pulmonary #1. It turned out that Pulmonary #2 had new ideas and new information for me.

A couple of weeks ago, I told Pulmonary #1 in person what I had done, what changes I made, and that I was seeing someone new (Pulmonary #2). She was fine with it because she admitted that Jaycee was so complex that this may bring about new information. In short, she was fine with bringing another person into our relationship. But, I needed to pick one to call the shots and be the lead.

The past few weeks I have been weighing the pros and cons on these two pulmonologists. #1 is 2 hours away. #2 is 3.5 hours away. #2 is too far away to go when she's sick, so #1 will be taking care of her in the hospital. Both are nice, understanding, and listen to my concerns. #2 works with a group of people that are highly interested in sleep apnea. #2 treats her more aggressively with medications. #1 is more conservative in her treatment.

In the end, a decision must be made. I know what I need to do, but I'm reluctant to do it. Change is hard. Hopefully all the cheating will be worth it in the end. And I hope I'll never have the need to cheat again.