by Sarah | Mar 16, 2009 | All About Kennedy, Cystic Fibrosis
(Part 1 is here)
(Sorry for the delay…my host has been really cruddy the past couple of days and posting this second part has been difficult because it has been SO SLOW.)
So after two months of barky coughing, we finally got Angel into the pulmonologist. She did a thorough exam, listened to our story and ordered x-rays and a bronchoscopy.Â
The following Friday we reported to the PICU at 5:00AM. Angel was prepped for her ‘minor surgery’ and her nose was sprayed with a numbing agent. We were then shooed from the room and into the PICU waiting room where families slept and silence reigned.Â
Hushed undertones of inane conversation crossed the table between us, our hands clenched together belying our internal fears. The lights started flickering on, the sequestered families started waking to decide who would go steal a shower first.
Still we sat quiet, our forced conversation disappeared as we watched the faces that coule be ours depending on what happened face a new day. The strained lines, the forced normality of conversation that had been ours.
The nurse arrived finally with a smile and told us we could go back and see her – that she was awake and feeling ornery. We leapt to our feets and rushed back to the room, scooping our precious Angel into our arms and holding her close and tight.Â
The pulmonologist had her wonderfully calm and warm smile, letting us hold her for a few minutes before she started in on the results.
She showed us images from the camera and told us that Angel’s Adenoids, Aretnoids and larynx were all swollen. Then she showed us this barriers of mucous that lined the path to her lungs. She said that this could mean many things, including Cystic Fibrosis – but she believed it was still the mucous of baby asthma.
She was so reassuring as she sent us off with a schedule card for blood tests and “just as a precaution” a sweat test.Â
We went into the Outpatient Center of the hospital, and the blood work was horrifyingly terrible as it always is when they stick needles into a child’s arm…and then it was time for the sweat test. The tech was so wonderfully sweet and kind as she cleaned our tiny babie’s arms and put on the medicine – followed closely by two electrodes.
We sat for five minutes as the machine buzzed, sending waves of electricity through Angel’s skinny little arm. Then her arm was wrapped up in layers of wrap and we were sent out to play with a little timer set for 20 minutes. By the time we got back to the room, our nerves were raw. Even though we’d been assured that the pulm truly thought it was baby asthma…the thought of the words ‘Cystic Fibrosis’ sent chills down our spine.
The super-nice tech frowned as she peeled off the wrap to reveal the litmus paper on the arm, “Oh my, this little one doesn’t sweat much, does she?” She pondered whether there would be enough sweat to even test…and carried it out of the room. We sat silently, looking up in surprise when she returned and handed us a call-back card. Apparently we had to wait until 4:30 for the results.
I headed home, and Archie to work. Our nerves were wrapped up tight, but we suffered silently until 4:30. I called the number with shaky hands, a deep seated dread filling me. I punched all the numbers and the computers automated voice said the words I’d been longing to hear “Your test results are normal.”Â
I heard nothing else, hanging up and calling Archie in relief. We cheered our escape from such a fate, cried happy tears and went back to our days with lots of planned hugs for Angel. We’d lived through our short journey to answers…our relief was immense….
And short lived.
An hour later Archie had come by and was playing with the kids – and the phone rang. I was surprised to hear the pulmonologist on the other end of the line, “I know the automated system told you to call in, but I didn’t want you to have to wait.”
My heart stopped beating for a full ten seconds as I stammered, “Uh…no…the…the computer said the results were fine.”
“I’m so sorry, but it was wrong. We’ll have to look into why it told you that.”
I met Archie’s eyes across the room, I knew tears were starting to fall, and that I wasn’t breathing.
“I wanted to call you personally because I didn’t want you to panic.”
Too late.
“But the test results showed elevated sweat chloride levels…” The rest of her comments were a blur until she said, “Cystic Fibrosis.”
What had been a short journey into answers was about to get a lot longer – and impossibly more frightening.
by Sarah | Mar 9, 2009 | All About Kennedy, Cystic Fibrosis
Two years ago right after Valentines Day was a rough time for our family. Archie and I had separated – he was living with a friend. I was just starting to experience life as a single mother to three children. It was for sure known that Riley was special needs – she’d been seeing a specialist for months for her FTT. He’d said the words “Russell-Silver Syndrome”, and we were beginning to look into autism. We had just recently started Angel in Early Intervention because of her muscle tone – although we didn’t know the depth of that yet.
The day after Valentines I posted on the mommy forums I visited asking when it was appropriate to call a doctor for a cough. Angel had developed a cough, very light and dry – but it was becoming more barky. My first two kids hadn’t ever had a cough, so I didn’t know what to do.
A few days later I took her in. The ped said it wasn’t in her chest, and not to worry. Three days later the cough was worse. I took her back in and we started with regular breathing treatments (every 4 hours) using albuterol.
For a month we went on that way. Breathing treatments, doctor’s appointments. We tested for Whooping Cough – we treated for asthma…we had no idea what was making our previously happy baby so miserable and coughy…
After a month of coughing without explanation our pediatrician referred us to a pulmonologist. If anyone could find the cause – it would be her.
To be continued….
by Sarah | Jan 21, 2009 | All About Kennedy, All About Me, Crap, Hypotonia
Which is really hypocritical of me because I constantly give Archie grief for blaming himself. It isn’t his fault…and it isn’t my fault…and our brains know this…but our hearts bleed.Â
His heart bleeds because Brandon was the ‘perfect’ child. He was never really sick (a minor bowel issue until 3yo, but otherwise) – Brandon is neurotypical. ARchie is not biologically his father. Our two special needs children are his biological children. He draws the line of coincidence and though his head tells him that it isn’t his fault…his heart aches and bleeds thinking it was somehow his fault – his genes that did it.
For me, it’s an old vice. One that still haunts me…and one that I abused when I was pregnant…not with Brandon, and not with Riley…but with Angel…
I smoked until I was five and a half months pregnant with her. In my (very weak) defense I hadn’t the foggiest idea I WAS pregnant (seriously I REALLY had no idea…both me and my OB were shocked)…but I was, and I did.Â
I had my first cigarette at 11. At 16 I really started smoking – and started hard with reds. I smoked off an on for years. I’ve always had a knack of just deciding one day that I’d quit and that would be it – for months and years at a time. When I started drinking (at 18), I’d almost always have at least one cigarette when I drank – which worked since it was only once every few months. But I was a horrible social smoker…when others smoked, I joined. Working in food service – a LOT of food service workers smoke…so when I started waitressing after Riley was born, I started smoking – like a frickin’ chimney.Â
Truth be told, with all three of my kids I smoked right up until the day I found out I was pregnant. Brandon I stopped as soon as I saw the test – and never looked back, in fact they made me sick. With Riley, I quit before I knew I was pregnant…they just made me nuts, so did alcohol (not that I was ever addicted to that).Â
But when I got pregnant with Angel, I had no idea I was pregnant. I was using three forms of birth control (four if you count the new-parent exhaustion-created near-abstinence). I was working at Bob Evans (yum) and smoking like a chimney with my friends and coworkers.Â
I’ve always felt guilt about it – but pushed it aside as best as I could.Â
But when I hear the doctors say “Something happened neurologically while she was in utero. Something minor, but enough to cause this…” As they have since we first started looking for reasons for her left-sided weakness. Every time I hear “neurological event” and “in utero” – I blame myself.Â
And my heart bleeds.Â
And bleeds…
And tonight…my heart bleeds…and again I blame myself…
by Sarah | Jan 14, 2009 | All About Kennedy, Hypotonia
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Today I have a valid reason for my complaining and picking at my Angel’s faults…so does that make it complaining and picking? I’ll pretend it doesn’t (don’t tell me otherwise if it isn’t…I’m feeling so good about this *G*).
Tomorrow (Thursday) is Angel’s appointment with her new Orthopaedist at the children’s hospital where her pulm is located. I’m excited, and anxious…worried that I’ll be let down again. So, in preparation I’m making a list (of compaints) to present to the doctor. You get the privilege of reading that list ;) Lucky you, right?
So here’s my best compilation, hopefully I won’t forget anything…
- PT notes state her spatial awareness is still off – making her a possible danger to herself.
- PT notes also state she still prefers her right side for balance and strength.
- PT notes lastly state that she demonstrates bilateral hip weakness.
- At home we’ve noticed a visible difference in the length/size of her legs. It used to be minor and you really had to look and get her lying perfectly straight – now we can see it from across the room – and her feet are officially different sizes.
- Could this be causing scoliosis? It’s genetic in the family, I’m worried that this can make it come on sooner and stronger for her. My mother has a hump in her back hers is so severe (mine is more minor – thank goodness for dance).
- Changing her diaper has always been a nightmare, she hates having her legs/hips bent.
- Now pushing her knees to her chest causes complaint/full blown fit. It appears like her hips make her uncomfortable.
- She is showing improvements, but is it compensating improvements or actual improvements?
I’m sure I’m forgetting something…I’ll update as I go…if I remember, or Archie reminds me of something.  Wish us luck tomorrow…we’re going to need it! I was so disappointed in the last ortho, I’m afraid I’m a bit negatively biased ahead of time.
by Sarah | Nov 8, 2008 | All About Molly, Autism, Crap
“Well what does she have?”
“Autism.”
“Oh, she does NOT! I’ve SEEN autism, and that isn’t it.”
This conversation happened on my trip home. It was my grandmother, whom I adore dearly and I hold no ill will toward her for it…but it reminded me of the times the conversation has happened in other situations.
When being told of her diagnosis after 2 years of searching and waiting her (special needs) teacher said, “Really? Well, I’m surprised by that.” Other people look at her and then at me with the huge look of doubt and you can practically hear their thoughts – She looks fine to me.
It takes all of my effort to smile and nod and move on into different conversations. I have to remind myself that these people don’t see her day in and day out. They don’t see her meltdowns (she saves those for us), they don’t see the way disruption in her routine makes things wonky, they don’t see her when she gets off the bus after school so exhausted from working at her therapies in class that she crashes on the couch for two hours.
They see a girl without the typical red flags, that makes eye contact, that smiles (at us) and hides from strangers, that talks and laughs once she’s familiar with the situation.
They expect what the propoganda shows, children ‘locked within themselves’. They expect behaviors and habits they see on news reports and fundraising sites. They expect an autistic version of ‘normal’.
They don’t know the years of therapy she’s been to help her become verbal. They haven’t watched her for 4 years like us, like her doctors. They don’t know that just 6 months ago she COULDN’T express her needs and wants. That six months ago the only calming activity when she got overstimulated was DPPT. That she does have moments where she fits into what they expect to see.
And I am grateful that they can see the child they do now. Thankful for Early Intervention, thankful for Developmental Preschool – that those two services have helped her become what she is today…and I am frustrated that people can’t see beyond the stereotype, that they don’t see that the spectrum is wide, and we happen to be on the higher-functioning end.
Look beyond the label, look beyond the stereotype…see the child and accept her for what she is. And if you’re going to take the time to ask the question, take the time to see the years it may have taken to reach that diagnosis…to see the months of therapy and what they’ve done to help the child…not look and judge because it’s not ‘typical’.
by Sarah | Oct 11, 2008 | All About Molly, Failure to Thrive (FTT), GERD, Russell-Silver Syndrome
Yesterday we covered Riley’s relatively normal pregnancy and childbirth. As I said then; for the first three months everything went smooth – except that she had to sleep propped up in her carseat. She would not sleep lying down at all. Ever.
At three months old, I went back to work. I took a part time evening job waitressing at Bob Evans. The first week of work, things got crazy at home. I would leave and Riley would scream all night until almost 10PM. This was beyond colic, this was intense, pained screaming. Archie blamed it on my return to work the first couple of nights…but then he told me something was wrong.
Archie’s instincts have a way of being right. So, when I had to leave work early (in my first week) to come home because she was so horribly bad off, we determined that we’d call the pediatrician. We were told that if it didn’t improve to make a sick appointment in the morning (it was a Saturday).Â
The next morning we called and made the sick appointment, not wanting to wait until Monday. We took her in and learned that she’d flatlined in her weight gain. In the month since her previous appointment she’d only gained about 3oz.Â
Listening to our descriptions of what was happening the ped suggested that it was likely GERD (reflux), and perscribed Zantac. He told us to try giving her some formula after breastfeeding to weigh down what she was eating (a directive I regret following…but that’s another story). Then he scheduled some tests for us to get a confirmation of the diagnosis.
The next week we were at the children’s hospital with her in the X-ray department having a fluoroscopy performed. I was standing there watching as she swallowed the barium right up. I watched it go down, and stared in shock when it shot back up VERY quick, stopping at her throat before going back down and shooting back up again.
Our diagnosis of silent reflux confirmed, we followed another of the doctor’s directives that I regret….adding cereal to the formula we gave her.Â
Over the next few weeks she went in for weight checks constantly, but her weight gain didn’t rebound. So, under my (supposedly) BF supportive docs suggestion I pumped and switched exclusively to formula w/ cereal added. He said that we would get back to BFing once her weight came back on an even keel.
But the weight never came back, and neither did the breast feeding. Despite the treatments for GERD working in other ways (she would lay down to sleep, the screaming stopped)…her weight couldn’t seem to come back where it was supposed to be.
Eventually it got to the point where her weight was in the -25%. She was at least a pound beneath the lowest line on the growth charts, and we had no idea what to do about it, where to go next.  She was one year old and weighed 15lbs to her 29inches. She was a beanpole – skin and bones. Her hair was thin and practically non-existent.
It was around this time that we ended up switching pediatricians for many reasons. With the new pediatrician came a new look into the weight issues Riley was having. A pair of fresh eyes that would help us try to find an answer.
In came Dr. S. She has been our joy, our savior, and just the best damn pediatrician ever. She started the two year search for answers…
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I’ll continue on Monday with the first stage of our search…from bloodwork, to the specialist and our introduction to Early Intervention!
