Tag Archives: medical care

Feeding Clinic Ahead

After music therapy, Charlie and I went strawberry picking.

After music therapy, Charlie and I went strawberry picking.

During Charlie’s music therapy appointment today, I received the call. The voice on the other end inquired if it would be possible to bring Charlie to the feeding clinic tomorrow. It was short notice but I didn’t turn down the opportunity.

Tomorrow, Charlie will be seen by a gastroenterologist and a feeding expert. Hopefully, we can get some answers or ideas.

Charlie’s feeding progress is stuck on a plateau. With therapy, her oral aversion and speech sounds have improved significantly. However, her intake of solids is rather lacking. At the age of two, she continues to be (hydrolyzed protein) formula dependent.

I can’t figure it out. Her regular health professionals are out of ideas. Her developmental pediatrician provided the referral for the consultation with the gastroenterologist and feeding expert.

Is her poor feeds due to the silent gag that showed up on her swallow study back in September? Is her stomach bothering her? Why does she not tolerate milk? Is it an allergy? Why does she continue to spit up at the age of two? Is her poor solid feeds CP related? Why is her motility very slow?

I don’t expect all of these questions to be answered tomorrow. I will be lucky if even one of them is answered. What I hope is that ideas are offered, suggestions are made, or a plan is devised. I hate this feeling of being stuck and not knowing what to do next.

Her speech is slowly coming along. Now, it’s time for progress in feeding.

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I’m Not A Doctor But I Play One When I Call The Pediatrician’s Office

For a couple of hours last night, Charlie screamed in pain. Other than when she was rehospitalized, I had not heard her scream in pain and it terrified me. She didn’t pull at her ears, touch her head, gnaw on her hand, rub anywhere on her body, nor provide any clues to what the problem was. There was no fever.  She simply screamed hysterically.

I spoke with the on call doctor last night. I explained how Charlie had behaved unusually through out the day and it culminated in the screaming. We discussed if and when she needed to be seen in the ED. The doctor suggested ways to remedy the pain and get her through the night. She explained that it is a tough situation to figure out without examining Charlie. Furthermore, she recommended that Charlie be seen in the office the next day (today).

This morning, I called for an appointment. The office staff asked, “What does the child have?” I answered, “She’s been screaming in pain. I don’t know the source.” The office staff suggested, “It is her ears then?” Frustrated, I took a deep breath and said, “I don’t know. It could be her ears, her stomach, or any other number of things. My baby is in pain and I need help figuring it out.”

“Ma,am, what do you think the problem is?” was the response. Was this a mind game? If I knew, I wouldn’t need help figuring it out and fixing it. The office staff once again suggested that it was the ears. I relented, “Fine, it’s the ears.” At this point, I would say anything to end the conversation that was going nowhere.

She provided me with an appointment time for this afternoon and I promptly hung up. I’m not a doctor but I’m expected to be one to schedule an appointment.


Physicians Please Listen: Five Common Problems With A Medical Home

Despite the beautiful weather, Charlie is spending the day indoors resting and recuperating. This means I’ve had more time than usual to read the articles in my Twitter feed. For some reason, today’s reoccurring theme has been the importance of a medical home.

In short, a medical home is a primary care provider that a patient regularly sees for his or her medical needs. Ideally, the medical home system has more benefits than visiting urgent care as needed. But, as a consumer, I have experienced discouraging obstacles in the use of the medical home model. They are as follows:

1) Terrible Office Staff: There is nothing more frustrating than dealing with lousy office staff. I am annoyed when I have to ensure the office staff does as the doctor ordered. I’ve dealt with  schedulers that have lost orders (and not let anyone know), staff that fail to schedule follow ups as promised, lab and test results that make it to the office but not to the doctor, my child becoming lost in a hospital system, and all kinds of appointment scheduling snafus.

I am paying very high co pays and deductibles for a service. Please manage your own staff. There is nothing I would like to do less when I’m not feeling well or, even worse, when my child is ill. I am more likely to follow up with a doctor or practice that simplifies my life rather than complicates things.

2) Difficult Office Policies or Procedures: If my toddler gets sick, I call her pediatrician and am immediately greeted with a request to hold. After five minutes on hold (sometimes it’s longer), my request for a sick appointment is noted and I am told a triage nurse will call me back. One to three hours later, a triage nurse calls me back. A)She refers to my girl child as a “he” and B) the nurse has no idea that my toddler has special needs. These mistakes inform me the nurse hasn’t even looked at my toddler’s chart as triage is performed.

After I explain the situation and if I’m lucky, I get an appointment for later that day. I spend most of my day dealing with the office when my child gets sick.  If I were the parent of a kid without special needs, I wouldn’t go through all of this. I would just take my toddler to urgent care and get on with my day.

3) Rotating Doctors: I adore my toddler’s pediatrician. She is part of a large practice. I understand the rest of the practice is as capable of caring for my toddler. However, our usual pediatrician knows my toddler well. I don’t have to rehash her complicated medical history each time she has an appointment. The pediatrician also knows what is “normal” for my toddler and is able to distinguish if and when there is a problem. Those are the key reasons I choose to consistently use the pediatrician over urgent care.

But, the importance of continuity is dismissed. Unless I ask (sometimes insist) on the specific pediatrician when she’s available, the schedulers will randomize which doctor an appointment is scheduled with. To me, that is no different than seeing a random doctor at urgent care.  Any doctor has access to my toddlers information, the entire health system can access her electronic records at any time.

4) Insurance Coverage: There have been a few occasions when I have had to change primary care providers due to changes in which insurance is accepted or which insurance coverage we carry. Insurance changes make it nearly impossible to maintain a long term doctor-patient relationship.

5) The Practice Over Schedules or Takes On Too Many Patients: For my toddler, I have to schedule well visits at least three months in advance. If I don’t, I’m out of luck or at the mercy of the cancellation waiting list.

Frequently, I receive a recorded message that the office is closed when I call the office (during office hours). That is the default message when all the lines are in use. Once I do get through, I am placed on the usual five minute hold.

These types of things are aggravating and I can’t blame other parents for choosing the more convenient urgent care option. Although, I agree with physicians that argue the importance of a medical home, I believe it is time to rethink things. If patients are opting for urgent care as opposed to a regular care provider, remove the obstacles that make urgent care facilities an inviting alternative.


March For Babies Kick Off

March For BabiesI know it’s spring when I see all the purple in my Facebook feed. My friends flood my Facebook and Twitter feeds with solicitations for support of their March of Dimes March for Babies teams… and I love it.

Last night was the Northern Shenandoah Valley March For Babies Kickoff. The team captains were prepped and, as this year’s ambassador family for our walk, I told our story to a room full of people.

A year ago, I was struggling to write our story. Now, it flows freely from my lips as I tell it to a room full of people. I suppose it is a sign that I am moving forward. I’m sorry to say, this may be the beginning of the end to the unflattering videos and pictures of me in tears that circulate the web via different organizations’ websites.

Although, I am happy to report that Team Charlie Allene is more than half way to our goal of $1000. If you’d like to help us reach our goal (or blow it out of the water), you can donate on our team page by clicking here. Every little bit is greatly appreciated and goes to a wonderful cause.

Charlie would not have survived if it weren’t for the work of March of Dimes. Her life was saved by research funded by March of Dimes. For example, she received pulmonary surfactant while she was in the NICU.

Not only was Charlie’s life saved, but Charlie’s dad and I received assistance as well. March of Dimes NICU Family Support Program provided support and comfort to us during Charlie’s three month NICU stay. We were given a NICU themed baby book, offered NICU themed classes, and the NICU support specialist held my hand and empowered me during Charlie’s journey.

We were helped during our time of heartbreak, desperation, and need. It’s our turn to help other babies and their families. Please help babies and support our team.

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One of the first days Charlie and I spent together.

Created with Nokia Smart Cam

Charlie, Charlie’s Dad, and I told our story at last night’s March For Babies Kick Off.


The Cost Of It All

Financial cost is a topic that I frequently see discussed on medical ethics blogs and rarely discussed on the preemie parent blogs. Although, it is a regular topic of conversation on the closed preemie boards. An exception to this generalization is the Love That Max post titled How Much Do Therapies Cost For Your Child With Special Needs.

I can tell you from our experience it is expensive to have a preemie and/or a special needs child. Even though our household has a respectable income and we have “good” insurance coverage for Charlie, our budget is tight.

Where do these expenses come from? Therapist co pays (if covered at all), specialist co pays, re hospitalizations, diagnostic test co pays, lab co pays,  special formula (not covered by insurance), orthotic co pays, medicines with $50 co pays, dietitian (not covered by insurance), and other special equipment (such as therapeutic equipment). That is in addition to all regular expenses involved with raising a child.

Charlie is priceless to me and I would take on even more cost if I had to for her. So, like other preemie moms, I learned to fight automatic denials,  have become an expert in Charlie’s insurance coverage, and am sure to document everything. My husband and I make our clothes last longer, go without vacations or date nights (we haven’t been out on our own together since Charlie has been home from the NICU), and shop at outlet stores. Also, I am learning about health programs that are available as she grows older.

As lousy as it is to be forced to fight for the coverage we pay for or have to pay completely out of pocket for things, I consider us lucky. I have met many preemie moms that have lost their homes or been forced to declare bankruptcy. I have even met a parent that had to take their child overseas to receive affordable treatment.

I am not sure what the answer is but our health care system is broken. Even though we did everything we were “supposed” to do, I feel like the system failed us. We are not alone. The majority of people in this country are one medical catastrophe away from financial ruin. I want to know how this is a good thing for our country.

It is time there is pragmatic talk about agreeable solutions. Even with insurance, the American dream frequently dies with the birth of a micro preemie.

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Prematurity Awareness Month Post: What Do Those Tubes and Wires In The NICU Do?

NICU babies often have many tubes and wires attached to their tiny bodies. I was lucky enough to have a kind and informative NICU nurse explain the purpose of my baby’s life lines. The following is a description of some of the tubes and wires my baby had in the NICU as I remember it explained to me.

I am not a medical expert and encourage NICU parents to ask their baby’s health care team members any questions they may have concerning care. An excellent resource concerning NICU equipment can be found at this link.

NICU Preemie Tubes and Wires


The Voice of Reason: How To Find The Right Pediatrician For You

Finding a good doctor is important for anyone. It is imperative  when one has a special needs baby. Before Charlie was born, I was only concerned with selecting a well educated, highly trained, and vastly experienced doctor (that takes my insurance). However, I have discovered there is more to consider when choosing a doctor. Fortunately, things fell into place when we found Charlie’s pediatrician. For all the NICU parents getting ready to bring your babies home, this post is for you. These are several factors I’ve found (sometimes the hard way) to be important when choosing a doctor.

First, excellent communication is crucial. In the past, Charlie had a few doctors with whom I communicated poorly. One spoke to me like I was an idiot and another was out right frightening with a harsh bed side manner. I adore Charlie’s pediatrician because she is able to translate medical jargon and will speak to me on my level. I feel that she is very receptive to my concerns and listens well. I feel comfortable asking questions or for a further explanation. Likewise, it is important the doctor communicates well with other specialists, therapists, or nurses as needed.

Additionally, you may want to select a doctor that practices at your hospital of choice. If your baby had to be readmitted, which hospital would you prefer? Is the doctor familiar with community resources? Does your doctor have realistic knowledge of the surrounding health care community? When Charlie had severe GI issues, she needed an immediate scan and to be seen quickly by a gastroenterologist. We lived in a densely populated area where it would have been weeks if the doctor had simply written the order for a scan and given the referral. However, Charlie’s doctor was savvy enough to help us circumvent the obstacles in order to get her cared for immediately.

Third, the doctor’s availability should be assessed. Are the office hours convenient? If you want to speak on the phone with the doctor, will they do that? What is the plan if something should happen after hours? Is it hard to get an appointment? Is the doctor always booked up? Is the location convenient? Charlie had a huge number of appointments her first year. They were exhausting and stressful enough without the added worry of challenging logistics.

Fourth, how well does (or will) your doctor know your baby? Charlie sees the same pediatrician each time. She recognizes Charlie on sight. With out checking the chart, the doctor is familiar with her issues and can spot her progress. This attribute is priceless in Charlie’s medical care. Minor changes (many of which are uncharted) can be the first sign of a big problem. The better a doctor knows your baby the quicker irregularities can be spotted.

Plus, it is helpful to have a doctor that shares your expectations as to what is appropriate for your baby. Charlie is developmentally delayed. It was a waste of time for us to see the doctor that gave her exercises that exceeded her skill level. However, I do not want a doctor that will give up on her either.  Is your doctor on target with your baby’s abilities? Are the goals and course of treatments reasonable in your opinion? Not too easy or too hard?

Finally, do you trust the doctor? Are options explained when decisions need to be made? Do you feel comfortable discussing ideas, needs, questions, or concerns?

This list is not all inclusive. These are a few things I’ve managed to figure out with experience. I am grateful for Charlie’s pediatrician. Through out the chaos of Charlie’s first year, she has been the voice of reason that has kept Charlie healthy and encouraged her to thrive.  She has set the bar pretty high for other doctors to follow.

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Another Anniversary or How Charlie Lost Her PEEP

Today is Charlie’s CPAP removal anniversary. Last year, Charlie was taken off of CPAP and put on a high flow nasal cannula. There are so many things I remember about that day.  Mostly, I remember the emotions of excitement, joy, and even a little anger.

The day before she was removed from CPAP, I had spoken with a neonatalogist. He provided a time estimate for Charlie’s progress. He said that it would be about a week before an attempt was made to move Charlie to a nasal cannula. He wanted to be sure that she continued to gain weight and not waste calories on breathing. I left that evening with a plan to return late the next night for a short visit.

My husband and I avoided the other babies’ weekend visitors by visiting at odd hours. We had more privacy and the nurses were more available when we visited during off times. That Saturday, we arrived late in the evening to a nearly empty NICU.

After performing the scrubbing and sanitizing ritual, I marched up to Charlie’s isolette and threw back the blanket covering it. Her CPAPless face was peering back at me. Surprised, I jumped back. “They must have moved around the babies again”, I muttered to my husband. On a few past occasions, they had shuffled the babies around and did not mention it until I could not find my baby.

I looked around for a nurse to guide me to my baby’s new location. No one came hurrying over to show me where my baby was. Confused, I looked at the name plate on the wall and the charts. It was our name. However, I was sure this was not our baby. Our baby wore a CPAP mask and hat. I started to panic.

My husband placed his hand on my shoulder and quietly said, “I think she got her CPAP mask off today.” Finally, I realized that the mystery baby laying in front of me WAS Charlie. I put my head in my hands and started sobbing.

Up until then, it was too much to hope that she would make any forward progress. For two months, I had become accustomed to the simple wish for minimal backsliding. I was so used to complications that I had not dared to dream of the possibility of Charlie improving.

That evening was the first time that I felt there could be an end to Charlie’s NICU stay. It was the moment that it occurred to me that “this too will end”.  I felt a mix of relief and happiness. I was overwhelmed.

The float nurse made her way over to us. I asked her why nothing was mentioned to us concerning the cannula. She explained that often parents are not told that they are going to try such measures. Sometimes it is done to spare parents disappointment if the attempt fails and other times it is just an oversight.

Hearing the explanation made me angry. Who are these people who determine that I need to be treated like a child? Why do they get to decide what I can and can not handle? If the doctor forgets to mention something this big, what else are they not telling me? I did not feel as if I was a participant in Charlie’s care (something that NICU parents are constantly reminded to be). I felt like I was being pandered to or pacified.

Although the anger affected my future trust with some of Charlie’s health care team, I did not let it ruin our evening. We held Charlie, doted over her, and took pictures. That night was the beginning of the end. Ten days later, Charlie was transfered to a different NICU as a feeder-grower.

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One of the nurses put the bow in Charlie’s hair. This is how I found her in the isolette.


Guilt

In my conversations with other NICU moms, guilt is a theme that makes a regular appearance. While the emotion is the same, the reasons each person experiences it vary. I have heard other moms say that they feel guilty that their bodies failed. Another mom in the NICU told me that she felt guilty for folding a load of laundry while on ordered bed rest. Similarly to these moms, I have my own and different sources of guilt.

My initial guilt stems from ignoring my instinct. At twenty weeks, I started seeing spots. I was alarmed by the leap my usually low blood pressure made when the opposite was expected. My instincts were screaming that something was not quite right. I feel guilty that I listened to other people when they dismissed my concerns as “part of being pregnant”. I feel guilty for allowing myself to believe when I was told that “everything is fine”.

I wish I would have listened more to myself and less to others.  However, this guilt was a painful lesson that served me later. I refused to “wait and see”  as advised when Charlie started displaying motor problems and sought intervention. This bit of guilt serves a purpose. Because of this, I am finding it possible to slowly let go of it.

The rest of my guilt emerges from the NICU. I felt guilty for falling to pieces when Charlie was born. I felt guilty for mourning, for being angry, for the days when all I could do was cry in front of her isolette, for all the jealousy I felt, and the resentment I harbored. I felt guilty for feeling those things because I thought I was better than that. I felt guilty for being so petty and small. I found out later that all of those feelings are normal and part of the process. That bit of knowledge made it easier for me to work through that guilt.

Then, there is the guilt I have yet to reason with. I feel guilty that my baby survived the NICU. There was a baby that passed while Charlie was in the NICU. As I watched those sobbing parents prepare to say good bye, I knew that it was purely luck that it was not me preparing to lose Charlie. On occasion, I meet other NICU parents who were not as fortunate as we were and I feel guilty. Because I know we were lucky, I feel guilty when I grow tired, weary, sad, frustrated, and angry about our lot.  This is the remaining aspect of guilt that I have trouble with. I am not sure what the answer is to relieve it.

With the passing of time, reading, and talking to other NICU moms, I have been able to come to terms with a large portion of my guilty feelings. I hope with more time, reflection, and discussion that I will one day be free of the remaining guilt. It is a heavy burden to needlessly carry around.


Taking Care of Mama

When I discovered that I was pregnant with Charlie, my husband I had been trying to have a baby for several months. Each month, I would take a pregnancy test and the results were negative. Around Christmas that year, I herniated another disc (I have a history of extensive spine issues). We were in the midst of planning surgery to correct the issue when I decided it would be prudent to test for pregnancy. We were shocked when the results were positive. The surgery had to be delayed.

I did not think it was possible but things quickly became further complicated. Due to preeclampsia, it was not long before I found myself the mother of a micro preemie. From my admission to the high risk unit and on, I have been so wrapped up in her care that I have not had the chance to revisit a surgery plan. I know that surgery is impending but I continue to procrastinate. I have a few concerns that fall into a similar catagory.

Today was a day where I could not put off one of those things. Charlie was well behaved while the doctor examined me and the lab took samples. Secretly, I think she was glad that she was not the one being poked and prodded. When the doctor returned with my lab results, she started her statement with, “The lab work has shown that you…”. I panicked during that pause. She finished by explaining that she suspects a kidney stone. I breathed a sigh of relief and said, “Is that all? For a moment, I was afraid you were going to say that I was pregnant.” The doctor laughed. Little did she know that it was only recently that my nightmares about being pregnant have ceased.

On the drive home, I decided that it was time that I start addressing the neglected health issues. This afternoon, I made the appointments that have been on my “to do” list for a while. It will take time (maybe even a year) to finish everything. However, I feel like I accomplished something today merely by deciding to get started. My best motivation is the realization that taking care of myself is an important part to taking care of Charlie.

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