Newly diagnosed and need answers?

When my son was diagnosed with Hemiplegia, I was very grateful to have Google! He was born not too long after Google took over as “THEE” search engine and pushed AOL and Yahoo to the side. It was on Google that I found the ultimate support resource for parents with hemiplegic kids. It’s called CHASA and this acronym stands for Children’s Hemiplegia and Stroke Association.

CHASA was started by a mom who needed support and answers after her daughter was diagnosed and there were no parent resources on the web or in the form of a non-profit association that could bring the awareness and support that children with hemiplegia required. This woman most likely didn’t realize years ago that she would be such an integral and important part to each and every newly diagnosed family that would find the help and answers they seek after diagnosis on CHASA. She is a powerhouse and I’m so grateful for all her hard work and dedication to CHASA and her daughter is graduating from college this year!

A few years ago, the CHASA support group transitioned from a List-Serve type forum and switched to Facebook which had a far greater reach and the amount of members joining our private CHASA groups surged. There are CHASA groups for different age levels, for homeschooling, for additional diagnosis like Epilepsy, regional groups for your closest metro, etc. Since my son’s diagnosis, we were just handed a diagnosis and that was about it. No doctor, not his neurologist or primary care doctor could tell me what to expect with my child. Some obvious things like possible speech impairment and delayed walking were addressed, but no mention of swallowing issues, sensory issues, sleeplessness, chronic constipation, highly susceptibility to respiratory infections, ADHD, and the multitude of complications that arise from traumatic brain injury. CHASA is where parents, new and veterans alike of the hemiplegia journey congregate and compare notes about chronic issues, suggested therapies, new inventions, recommend hospitals and doctors, or simply to vent about the grief and frustrations of parenting a special needs child. It is a magnificent and an all-encompassing resource for information and support and without CHASA, I would have been lost in this complicated journey that we embarked on to help our son rehabilitate from his massive stroke.

This summer will be the second time that we attend the CHASA national retreat which will be hosted in Kentucky this year. We attended in 2009 when my son was two, so he doesn’t remember it and is very excited to go spend a few days with kids just like him. I attended in 2009 in Alabama for my own piece of mind and I got to meet and attend presentations where former CHASA kids were now teens and adults and I knew my boy would be okay. The comfort and relief that retreat brought me was exactly what I needed at the time. This year we made it a priority to attend because my son is now 9 years old and his disabilities are more pronounced and making friends is very difficult for him. He is very shy, but I believe that around kids just like him, he will break the ice more easily and be himself. He is the sweetest kid, a goof ball, and super observant. You wouldn’t suspect that only half of his brain works, he’s a smart ass to boot!

Sadly, everyday CHASA welcomes a new family with yet another child who survived a stroke and are searching for comfort and help. I’m just glad that CHASA and its large group of parents are there to support all the new and existing families 24/7.

Please checkout CHASA on its website: www.chasa.org

On Facebook, search for “CHASA” or “Children’s Hemiplegia and Stroke Association”

My awesome and brave son, my hemihero! (Part #3)

Here is the “big” finale to Lucas’ harrowing birth story and the beginning of the long journey we embarked on called Hemiplegia.

Where we last left off, Lucas escaped the NICU seemingly fine after the first 8 days of his life, of which 4 were on a ventilator and a miracle drug saved his life. My hubby and I could finally breathe a collective sigh of relief and fall in love with our little boy. I look back and I’m glad that I didn’t know that there was anything wrong with our new baby, it would have been too much to process and the grief, stress, and anxiety that would have hit me like a runaway train, would have been so overwhelming.

Lucas seemed fine, but then he was also very cranky. My other two children were pretty easy going babies and we chalked up Lucas’ orneriness to colic perhaps? He also didn’t sleep much and we found that very odd for a newborn and he had trouble breastfeeding. I soon gave up on that and he would also have a hard time with the bottle. In my new mom brain, I didn’t even imagine that these were all signs that something was wrong. I remember being sleep deprived and frustrated with a baby that was doing the opposite of my other two kids. That should have been a flashing billboard of abnormality, but again denial is a stronger emotion then acceptance.

The early weeks of his life were spent consoling him and of course getting to know our little guy. At 10 weeks old, my hubby and I were attending a convention in Las Vegas and brought the baby along because my mother-in-law was living there at the time.

We left Lucas with her for one day and when we went to pick him up that night, she said she had noticed that his right hand was fisted and didn’t open up like the other hand. I thought she was overreacting and being a worrywart granny because newborns can’t control their hands well and are still learning more coordinated movements. Yet, now we know that Lucas’ “Mim” was absolutely correct that something was wrong and that was the first clear sign of hemiparesis.

At 5 months old, he seemed to be hitting all the milestones like smiling, cooing, rolling over, etc. We had a follow up with the hospital NICU and Lucas was seen by an occupational therapist. She evaluated him and I brought up the hand issue and she replied by saying, “Yes, he definitely has some kind of palsy.”

Wait! What did she just say? Palsy, isn’t that term part of other bigger issues? I had heard that word, but never really cared to learn more because it wasn’t part of my world. As soon as the visit was over, I grabbed the fairly new invention of a smart phone and googled “palsy”. There was Erb’s Palsy, Bell ’s Palsy, and Cerebral Palsy, but what the heck did these conditions have to do with my baby? We found a top neurologist at our local children’s hospital and it was an 8 week wait to just get an initial visit even with super awesome PPO insurance. Those 8 weeks of wondering what was wrong with my baby were disconcerting to say the least.

Finally the day came for Lucas’ first of many visits to a neurologist and she confirmed that he definitely had some paralysis, but we needed an MRI/MRA to confirm. Another month went by to get that done and then it came, the results that would change everything. The MRI showed a massive stroke that basically wiped out his entire mid left brain. Imagine cutting a honeydew melon in half and taking one half and then scooping most of the melon out, only leaving some of the flesh in the front and rear sections, but everything else was scooped out to the rind. Not much left is there? That is what happened to Lucas’ brain and this part controlled movement. We were flabbergasted because he was kicking and moving all his arms and legs and didn’t seem like a child that suffered a massive stroke. We were told lots of things that day like neuroplasticity would help the brain rewire, need to start therapy, blah blah blah. It all became a blur because now I had to go home and research this diagnosis.

He was diagnosed with right-side hemiplegia, but what did that mean and was that the same as hemiparesis and what was an infarct, a CVA, an ischemic stroke, and did he also have cerebral palsy? The doctor basically diagnosed and confirmed one thing, but that was it. We were told to just take note of his progress and keep up with therapy. No further details, no future outlook of possible side effects of paralysis that would severely affect Lucas’ development and life.

Where was the instruction manual to all of this, your baby has hemiplegia, now what?

Luckily for me, there were other parents who already walked the path we were embarking on and they would become and still are the ultimate resource of in-depth experience and knowledge of what to expect with having a little stroke survivor.

My awesome and brave son, my hemi-hero! (Part #2)

Ah, Happy New Year! Hope 2016 brings us all more health, love, and success!

Lucas had some setbacks with his epilepsy in 2015, mainly a definitive diagnosis of ESES (Electrical Status Epilepticus during Sleep) that has really switched things up for us, but that is a whole other post for my readers to look forward to.

So to continue to Part #2 of Lucas’ story and why he’s my Hemi-Hero, without further ado…

Where was I? Oh, yes, back at the fact that I knew that something was not right with my baby boy.

He was born screaming, almost as if he was in dire pain. Being a veteran mom, I knew his screams were not typical of a newborn, especially because he wouldn’t stop crying. My first two kids did not cry when they were born, they kind of just came out and looked at me and said, “Hey mom, I’m the stranger that has been living inside your body these past 9 months, nice to meet you!”

Lucas was 8 pounds and 7 ounces and his APGAR scores were 9’s, he was a week shy of the 40 week mark, so basically full-term and the OB and the nurse on-call didn’t suspect anything was wrong. I noticed his nail beds and lips would not “pink up” in the usual time a newborn would and he rotated between blood curdling screams and almost falling asleep, but it seems like he was passing out. In my mother’s heart, I knew this baby was suffering. We spent about 2 hours in the labor & delivery room recovering and then they moved us to a suite. He still seemed to struggle, so I asked the nurse to take him to the nursery to be checked out further by the neonatologist.

My hubby and I passed out a while after and were awoken at 4 a.m. by the nurse and told that we shouldn’t panic, but our boy was in the NICU and had been placed on CPAP. While on the machine, he also stopped breathing twice and that was who the “Code Blue” was for. We rushed to the NICU and that was the first time I saw him in the incubator hooked up to all sorts of machines, needles, and wires.

That first day of his life, he only kept deteriorating and they didn’t know why, but suspected a few things. Tests were performed, labs were drawn, and we had to await the results. Later in the day, we were told that he was the sickest of all the babies in the NICU and they were doing their best for him. By now he was on a ventilator and with each passing hour they had to keep turning up the oxygen levels, little did I know that was really bad news. I thank God that I was naïve to what was really going on at the time because my anxiety and freak-out mode would have increased 100 fold!

At just about 24 hours old, the doctor took us into a separate room to discuss what was going on. It’s the room where they give you the really bad news and I felt like we were on an episode of “ER” or “Grey’s Anatomy”, it was surreal. They told us that Lucas had Persistent Pulmonary Hypertension of the Newborn (PPHN), Patent Ductus Arteriosus (PDA), and a Patent Foramen Ovale (PFO). The PDA and PFO were considered “congenital defects”, which is a fancy way to say he was born with these issues. He was currently on his way to 90% oxygen and was too critical to move to the children’s hospital NICU where he may need to get onto an ECMO machine. They wanted to give him pulmonary Surfactant which was usually used in preemies to help them breathe and was not usually effective in full-term babies. Lucas had a 50/50 shot of this medicine working, if it didn’t I don’t think he would have been here with us today. Within 30 minutes of the drug coating his lungs, it began working. We prayed to God and our angels in heaven to help our boy and his oxygen level was able to be reduced to 30% within 30 minutes of administering the treatment. At 100% oxygen, babies can have serious brain damage and are at high risk for going blind and deaf, thankfully I was only told that by a nurse after the fact. My hubby and I were able to breathe a momentary sigh of relief because this medicine was working and we had some hope that Lucas would pull-through.

He remained on the ventilator for 4 more days, each day his oxygen was being reduced, his blood gases were coming into range, jaundice was treated, respiratory rate and blood pressure were stabilizing, and his echocardiograms showed that the PDA was finally closing on its own without the need for surgery. He spent 8 days in the NICU that felt like a sad and scary eternity, but I know that other parents have spent way longer holding vigil for their children in the NICU and it’s an experience we all want to forget and just bring our babies home.

Upon discharge, they said everything had resolved and they expected there would be no long term damage, little they did or we know that these doctors would be so wrong.