May Medical Update


There seems to be so much going on in our lives right now that I haven't had a chance to update on just Clara and her health.  There are some concerns, but nothing major and I'm thankful every day that we have managed to stay out of the hospital since our second departure.  To clarify, we have managed to avoid any unplanned trips.  We did have two trips this month but they were outpatient appointments.

The first was on my birthday.  Clara finally had a swallow study that the pulmonogist had been talking about performing since her first bout with pneumonia back in January. It was never completed during either of her stays because she was never completely over her congestion and lung issues and the doctors were adamant about having her well for the swallow study as well as the bronchoscopy, which was scheduled for the following week.

At the swallow study the radiology technician strapped Clara down in a chair and, of course, Clara immediately objected.  However, she was also hungry because I had intentionally delayed her scheduled feeding just so she would perform during this study.

The technician let us use Clara's bottle, but she filled it with a barium mixture so that it would show up on the x-ray.  Once I put the bottle to Clara's mouth she ceased crying and took it without hesitation.  I watched the xray screen in disbelief.  There were her little muscles and bones--the structure of Clara--moving on the screen like a cartoon as the liquid ran down her throat.  It was unreal to my eyes, but also amazing.  But, while my jaw was dropping at the scene before me, within seconds the technician stopped Clara and declared that she was already aspirating.  She explained that having seen her aspirate that quickly she didn't need to see anymore to know it was a problem. She added a thickening agent to the bottle and shook it up.  It looked like a vanilla shake and Clara didn't object to the consistency, which was good.  This time, the liquid stayed on a digestive path, traveling as nature intended down her esophagus.

After also offering Clara pudding with the barium added, and noting that Clara had what appeared to be a shortened epiglottis, the technician allowed us to leave, directing me to purchase a thickening solution to add to all of Clara's bottles from that time forward.

Then on the 15th we arrived to the hospital early for the bronchoscopy.  Having thoroughly researched this procedure I was not nervous in the least and was only anxious to finally know the results, as this was the other procedure that the doctors kept discussing while we were in the hospital, yet she was never well enough to complete it.

My baby girl did impressively well for this procedure, considering she hadn't had a bottle since 11 the previous evening and the doctor hadn't scheduled her procedure until 8 am.  We had to be at the hospital at 6:45 am, and I was so proud of us for arriving on time considering we couldn't have brother to day care until 6:30 am, the time at which the facility opens.  

Mom accompanied us and Clara was in a wonderful mood, playing, laughing and entertaining.  While we waited they gave her some medicine that they warned would make her a little loopy prior to administering the anesthesia.  About 10 minutes after receiving it she stopped with her shenanigans and suddenly looked lost.  Moments later a nurse arrived to take her back.  I placed her on the adult-size hospital bed and she stayed in place, another sign that the medicine was working.  I watched as she was wheeled away and then Mom and I returned to the waiting room.

It seemed like I had just gotten comfortable, browsing a magazine I brought with me to help pass the time when we were summoned back.  The pulmonologist who had performed the procedure was there waiting for us.  Her total time with him could not have been more than 15 minutes and was probably more like 10.  He showed us some pictures he had taken, and while he didn't find any problems in her lungs, which were the suspect that had brought us here, he had found an issue with her larynx.  He diagnosed Clara as having layngomalacia, a condition given a word I didn't think I would ever remember but am quite adept at explaining now. 

Laryngomalacia is a softening of the tissue that surrounds the larynx.  In the photos I thought it looked like a grub worm, as it was curled up and pale.  The doctor informed us that it was supposed to be more springy and shaped like a banana.  Basically, the laryngeal structure above her voice box is floppy, not allowing for adequate protection over her airways.  This is caused by low muscle tone--a term I will hear over and over again during every stage of Clara's life, I have no doubt.

Finally, we had an answer for why Clara was aspirating and an answer as to why she had a bad battle with pnuemonia only months before.

For now, she will remain on the thick-it, she will remain on her medications--nizatidine, flovent, claritin and albuterol--and she will have another swallow study in 3 months to see if her condition is improving, as it does in most infant cases between 18 and 20 months of age.  If it isn't improving and continues to cause problems even with the addition of the thick-it, we could be looking at a future with stomach tubes.  I don't like that scenario, but all I can do is wait. And at least we have tools available to us to ease the problem, mainly being the thick-it, but I'm sure the medications help as well. 

The good news is she feels better than she has in months and with that comes happiness.  She's happy and it's obvious because she is progressing after a lull of making absolutely no progress due to her illness.  At 15 months old, Clara is finally able to get into the sitting position on her own (she's been sitting for months, but I had to put her there) and she is army crawling, and that gets her where she needs to go.  She is also competitive with her brother, racing him for toys and not giving them up so easily when he tries to take them away.  Most beautiful is her sense of humor.  She and I have shared some laughs.

We have our ups and downs, but our ups make all the downs entirely worth the fight.  And this little girl is a good fighter.





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A Place I Remember


One day last week one of my co-workers, a young gent in his mid-20s, was laughing about a client's address, gushing it couldn't possibly be real.  The address was from a small town and the steet name was Kenny's Trucks Drive.  I searched it on Google Maps and to our amazement, the address was real.  My co-worker then started ranting about the type of people who would name a street Kenny's Trucks Drive and speculated on how redneck this person Kenny might be.  I laughed and told him I thought it was cute.
 
What my young co-worker has yet to realize is that it doesn't matter where we live, we will always find people we refer to as "rednecks" living among us.  I assume his primary reason for finding such hick folk despicable is based on a view of them as close-minded and judgemental individulals, but what he isn't seeing is how close-minded and judgemental he is being toward Kenny and his truck.
 
Over the weekend I had cause to visit the small town where I grew up.  As I was passing through I thought of Kenny's Trucks Drive, and I thought about the days when the small town was my home, and I remembered how easy it seemed to hop in the car and drive out to the lake--to swing, to swim, to fish, to do nothing.  The days seemed to go by slower back then.  Perhaps it was because I was younger.  Or, it might have been because there was less traffic.  I'm really not sure.  It might be worth a study. But, at that moment I sure did miss it and the closeness of fresh air and carefree days.  
 
Eighteen years ago you could not have convinced me that I would one day miss that small town where people talked about what their neighbors were doing--the good and the bad--and no one was immune.  At the local grocer a person couldn't walk out without having seen at least one person they knew. And in five minutes, or less, you could enter one side of town and then be departing on the other. 
 
With those simple annoyances aside (except the entering and leaving--hello, less traffic) I would love to be able to play in the front yard with the children and not have to worry that a predator might drive by to scope out his next victim.  And how wonderful would it be to say on a whim, "Kids, get in the car. We're going to the lake. To do nothing."  And what a treasure ti would be if time could pass by just a little slower as it does seem to do in a small town.
 
All I'm saying is, I wouldn't mind living on Kenny's Trucks Drive--so long as Kenny minded his own. 

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I'm screaming over here


Last night as I was perusing Facebook a meme caught my eye.  It was a photo of a dog, and it asked for an answer as to why it is such that when a dog bites a child it is immediately put down, but when a pedophile hurts a child they get another chance.  I can't remember the exact wording and I tried to find it before paraphrasing it, but I can't even remember who posted it.  Bascially, the meme is likening a pedophile to an animal, and as I see it, this is an appropriate comparison.  Any person who would harm a child does not deserve another chance to hurt another child. 
 
While technically my ex may not be a pedophile, he is a sicko and he did hurt my child.  He hurt all of us.  Right now he is fighting to gain unsupervised visitation of our children and I'm fighting to keep it supervised.  He is going to prison, eventually.  It just depends on when he is finally willing to plead guilty, as he is, and as the courts, DA, his attorney, my attorney and everyone else knows he is.  It's a legal game that is draining my bank account. 

Every three weeks I have to meet him in court to revisit his request to have unsupervised visitiation.  At this last status conference my attorney wasn't present, but if she had been I may very well have lost my right to protect them. The judge told me: "That case (criminal case) has nothing to do with this (the paternity case)."  It was at that moment I decided I needed to hire a different attorney, which I have done. 
 
Next week will hopefully bring about change.  On Monday, my new attorney will hopefully shut down this whole mess of me having to be in court every three weeks, losing time off work that I don't have, and squashing the notion that a sexual deviant has any right to have unsupervised visitation when he hasn't even been assessed by a psychiatrist, has not received any type of treatment and still has a pending felony case. 

On Wednesday, the DA is offering him a plea offer in his felony case, in which I have been subpoenaed to appear as a witness should he not accept.  Yes, more leave from work I don't have.  But I hold out hope this may finally be coming to an end.  For now.
 
Because actually, it will never be over.  He will be released from prison, and probably much sooner than I would like.  I have been sentenced to fearing for the safety of my children, or at least Clara, for the rest of our lives. 
 
Most devastating to me in this past month was finding out that my state is not in compliance with the Federal Sex Offender Registration Act.  All states were required to be compliant by 2011 and to date only 17 are compliant.  Federal SORNA would require that he register as a sex offender once he is released from prison because of a conviction of video voyeurism against a minor.  Oklahoma has not yet adopted that law into its statutes. There is not a statute that outlines the punishment for video voyeurism (or Peeping Tom as Oklahoma calls it) against a minor in this state. 
 
Not only would the registration requirement strengthen my battle to protect the children from future overnight visitation or any sort of custody arrangement, it would protect future victims.  I want parents to see this man coming from a mile away.  He is what he is.  He won't change, especially when he doesn't seem to realize the seriousness of his crime.
 
My daughter has a disability.  I think I've said it before--she is at twice the risk of abuse.  I am screaming to everyone that can hear me, this man will always be a danger in her life. What more can I do to ensure her ptotection? What would you do if you were her mom?

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Time Enough


After experiencing the return of warmer weather I had forgotten that only weeks before we were still battling the tight clenches of a long and brutal winter.  My body has an aversion to colder weather so it has graciously adapted to the warmth of the sun these last few weeks--and with the distractions of yard work, margaritas and flip flops it has forgotten to look back. 
 
Then came the thunder.  We didn't have our usual April showers this year, which usually carry into early May.  Wicked weather and tornados have been noticeably absent from our Spring schedule.  So when the rain and thunder rolled in yesterday afternoon their march was met with welcome by the warm street pavement of the city and, closer to home, by my freshly planted zinnias, eager to sprout from their pots. 
 
When the afternoon rain had passed it left behind an evening chill.  I hadn't dressed myself or the babies appropriately for the end of the day, and so on our ritual closing of the work and school day, between buildings and car, we froze. 
 
When we arrived home I prepared some warm soup for dinner.  After dinner I realized we were in need of a few grocery and toiletry items. I put Clara down for a nap.  For myself and Lukas I dug out some warmer clothes, now burried beneath patterned shorts and colorful tank tops.  Skylar didn't want to join us so she agreed to stay home and watch the baby while Lukas and I ventured out.
 
As we stepped out of the car into the parking lot of Neighborhood Market there was a light mist that filled the air. Instead of setting Lukas to the ground to walk as I usually do, because I carry Clara, I held him close to me and we giggled as our faces met.  A strong odor of cigarette smoke had drifted toward us and I imagined the source finding comfort in the warm inhalations of nicotine and tar. It felt as if we had traveled in time to another season and if you had told me it was October you could have fooled me. 
 
As I carried Lukas I realized that he and I rarely had alone time anymore.  It seemed so long ago that he had been the baby--that it had been he and I that were inseparable. And once we were inside I also realized a year or more has passed since that front seat of the shopping cart, where he now sat, had been his.  He was usually delegated to the rear.  I could see he was enjoying my complete focus, so as we shopped for the few items we needed we took our time and talked and enjoyed the company.
 
While there was nothing extraordinary about our venture to the grocery store, the weather had created a moment to treasure.  As a single mother I wish I had the opportunity to travel in time more often. I'll admit it--as a mom I am greedy.  I wish I could go back and pick up evenings lost due to work and household duties. I wish I could have an hour or two to spend with each of my children individually every evening.  I spend too much time worried about lost time. But what last night gave me was the realization that while I don't have it in my power to recreate the lost moments, I do have it within me to treasure the moments as they are given to me, however simple they may be. 
 
I am thankful that today I can hold onto these thoughts and hopefully carry them over into another evening. 

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One Year


"You should wake up," my mother informed me.  I don't know how deeply I had been asleep as I hadn't had a decent sleep in over a week.  Every night our sleep was repeatedly interrupted as nurses checked numbers and therapists suctioned Clara's nasal passages and throat every two to three hours.  Most nights Clara lived in fear of the next person who would enter our room to declare war on her nose.  I remember wishing desperately that I could help her understand they were trying to help her as she cried and fought with her entire body.  Sometimes I had to be the person to hold her down.  I wanted to scream at them to stop, but logic told me to allow them get her better.

That evening Mom had offered to sleep in the chair next to Clara's bed so I could get a more peaceful sleep.  That was the idea, but it didn't pan out so well. I sluggishly lifted myself from the comfort of the couch on the other side of the room as my eyes adjusted to the low light and blurry figures. I wasn't wearing my contacts.

It was 4 am and the room was filled with medical staff: doctors, resident doctors, nurses, respiratory therapists.  I remained calm as they worked and watched over Clara, discussing options and ideas.  I knew she was struggling with her oxygen levels.

The room was mostly silent as everyone watched the oxygen monitor.  The number dropped dramatically each time she fell into a deep slumber.  The main doctor, who had settled into one of our chairs as he studied the situation, asked me if I was seeing something maybe they had overlooked.  He was desperate for clues that would lead to an answer.  Why was she getting worse?  I was overcome with a feeling of dread.
A panic was building up inside of me.  Was I going to lose my baby?  Were these doctors giving up?

It was about two hours later, after Clara had been transferred to the PICU that I finally let it out as I looked at my surroundings and realized my family was being torn apart.  Lxkas couldn't stay with us in PICU.  I had to stay with Clara and I was afraid I was losing her.  After a short but needed cry I got a hold of myself and we trudged on--for two more weeks.

We had only been a little over a week in to what would become a three and a half week stay.   I was afraid we were going to celebrate her first birthday there, but 5 days prior she had finally been off oxygen for over 24 hours and she got to come home.  Never have I felt a greater relief than the day we walked out the front doors of that hospital with Clara in my arms.

This journey with her lungs isn't over.  We have follow up tests with the pulmonary specialist.  Unanswered questions linger.

I find myself wondering about her oxygen levels when she breaths loud.  I find myself living in fear that she may go back.  These days we live with a lot of demons, but we also live with gratitude because everyone is back home.  We are together.

I knew before she was born she would keep me on my toes.  I even wrote it here.
Happy 1st birthday, Clara.  We'll keep fighting and we'll keep winning.



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January Blog Hop


Down syndrome Blogs


Since I haven't participated in a blog hop in a while, and being that I am tied down to the hospital and I have some time on my hands, it seemed a good time to jump back in.  This month Meriah is requesting a truth, a tip and a photo.

I have a truth to share that no parent of a child with Down syndrome wants to come face to face with.  It is true that our children are more susceptible to severe respiratory infections, including pneumonia.  I am witness to this fact because we have been battling pneumonia, RSV and mycoplasma for over two weeks in the Children's Hospital.  Because I'm not a clinician I probably shouldn't even attempt to explain in laymen's terms why this is, but, remembering every child is different, even our children with Ds, it could have to do with the anatomical structure of the trachea and esophagus. or it could stem from a suppressed immune system that can be the result of a variety of factors.  If you understand medical terminology you can read more here:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074212/

So, my tip is related to this truth.  If you find your little one in the hospital with a severe respiratory infection my best advice to you is to be patient.  You will probably be there a while.  While children without disabilities may be looking at a quick in and out when they find themselves in a similar condition, a child with Down syndrome is going to heal slowly, and some days it may not look like you've made any progress.  It can be frustrating.  Find people you trust to watch your child during the day if you work, and to give you breaks during the evening so you can run home and take care of other responsibilities.  But just take it a day at a time.  Pushing doctors for answers isn't going to make anything happen any quicker.  Patience.

The last 2+ weeks have been good practice in patience for me.  So, here we are.  Still.  But, having just come out of PICU, she is definitely better.



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Yes, we are.


"You're still here?"
I can't count the times I've heard that question this week.  
It was a week ago Friday when I decided that Clara might need a little help in her journey to feeling well.  I had picked her up from daycare and the workers there had reported to me that she had been lethargic most of the day and wasn't taking her bottles.  
At the urgent care they saw us right away.  Everything happened so quickly, and before I knew it we were riding by ambulance across the street to the hospital.  "She just needs a little help," I thought.  "This will be one night."
Here we are, our 9th night here.  Because she is connected to oxygen she doesn't look as sick as she is.  She doesn't look like she has pneumonia.  She doesn't look like a child who's health would rapidly decline if she was taken home this very moment.  But she is sick with pneumonia and it would be dangerous for us to leave.
She plays, she eats, she takes her bottles--but she only does these things because of the extra oxygen being provided by tubing connected to her sweet little nose.  The amount of oxygen she needs varies drastically from day to day.
The doctors are baffled.  The nurses wonder why this child is still here, and they are the ones that know us and see us after their days off and ask, "You're still here?"  I jokingly reply that we sold the house because we live here now.
I don't remember what it feels like to have a home; to be able to wander from room to room; to have privacy.  
I hold tears back.  I am overwhelmed with worry.  I pray.  
She has to get better.

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