Monday, November 09, 2009

The short version

There is no perfect way to start this all up again so I will just start with the unexpected turn that came our way this past July.

On July 29, we were still all unpacking from a week trip to the beach. I was taking the time while the kids slept in to clean the house a bit. But about 9:15 am, I realized that William was sleeping too long and I needed to get him up and get dressed for therapy. So, I went into his room singing his special wake up song but when I approached his crib, I noticed he was in an unusual position... and that he was surrounded by a huge pool of liquid. When I picked him up, he was completely ragdoll limp and I saw that he had severe nystagmus in both eyes. As I carried him into the better lighting of the den, I could tell that he was off color and couldn't tell if he was breathing. But he was hot. Really, really hot.

I prepared to take him to the ER but realized that the situation was too serious for me to drive him. So I called 911. I am surprised that the operator could get any information from me at all. Because as I type this calmly, I was completely panicked at the time. there are no words to adequately describe the fear, panic, grief I was feeling holding my son.

When the ambulance arrived, I had Margaret meet them at the door and let them in. The EMTs took one look at William (didn't even put their bags down) and scooped him up out of my arms and immediately took him to the ambulance to start medical treatment.

At the time it was looking as if William had suffered a seizure. While at the ER and after the docs had given him some anti-seizure meds, William went into respiratory arrest. He was intubated and paralyzed. They ran a CT scan on his brain but found no bleeds or trauma so everyone's best guess was a seizure brought on by a fever due to a viral infection.

William was admitted into the PICU and remained intubated for a few days. On Margaret's birthday, August 1, he was extubated but remained in a comatose state. And then. He started to have trouble maintaining his sats. And breathing. And his heart rate. My husband and I stood by his bedside and cheered for him everytime he took a breath. At the time we just didn't want him to be intubated again. We had no idea how sick he really was.

So, he started breathing again and things stabilized. Until he started showing some ominous neurological signs. His nystagmus returned but was clearly only in one direction (to his right). And even though he had been off all sedatives and most pain meds for a couple of days, he did not wake up. That is when he had a second EEG ordered and following the results another CT scan of his brain.

The CT scan showed that William's right hemisphere had sustained a huge ischemic event and was swollen accross the midline of his brain. William was quickly re-intubated. And that is when the parade of specialists started. Neurology, neurosurgery, hematology/oncology, cardiology, gastroenterology, plastic surgery, pulmonology, genetics, regular 'ole pediatric surgery, etc. MRIs of all kinds on most of his organs and major blood vessels. CT scans of his brain every day for two weeks.

He had a Nissen and G tube placed following a failed swallow study. His surgical site became infected and he nearly died from that. His stomach completely shut down following his exploritory surgery (to find the infection) so he had to have the G-tube removed and replaced by a G-J tube. He is completely j-tube fed.

William spent 55 days in the PICU. Five days on the regular peds floor. And three weeks in a Rehabilitation Center.

What caused it all? A stroke. A massive stroke that, I am told, would have killed most people instantly. The ironic thing is that William's PVL saved his life, most likely. Because William had extra "room" in his brain, it was able to swell so much without killing him. From what I am told, the stroke affected his entire right hemisphere- that none of it was spared the damage. Knowing that, he does show many of the affects you might expect. The left side of his face droops. He neglects his left arm. His vision has taken a huge hit. But then there are some things that might surprise you. He still has the same likes and dislikes. He remembers things, people, events from before his stroke. And even with half of his brain "gone", he is still himself. I can not tell you what a blessing that is.

Today, William has lost a lot of what he worked so hard to gain. But he is getting better every day. When he was released from the PICU, he no longer had any head control or much voluntary movement at all. Now, he has gained a lot of his head control back and is working on making his arms work. His left side is now very affected whereas it used to be his "good" side. He is a hard worker so I have high hopes for his recovery in time.

We still do not know why William had his stroke. And we probably never will.


Erin said...

Lisa, it is so good to "hear" from you again. I have thought so much about you, William, your family over the past few months.

I can imagine how hard it was, emotionally and logistically, to sum up the past few months in one blog post, but I am so grateful you did. There were so many questions and concerns I had, but was never quite sure how to voice them, and you answered them all.

I am so, so incredibly happy that through it all the William "is still himself" and, no, that doesn't surprise me. The brain is such a complex thing and that its plasticity can overcome so much more than we ever thought.

William is such a fighter. I just pray that that was the last time he had to prove it in such a dramatic way.

Hugs and much love to all of you.

Katy said...

I am so glad that you wrote this. Erin had told me that William was in the hospital and I was worried.

There's a lot of good news coming out about stroke victims and vision, so hopefully William will regain some of that lost vision. I'm thrilled to hear that he is still "himself"

Prayers for all of you guys as you work through what I'm sure is a very difficult time.

Julie R said...

You have definitely been through more than your share the last 4 years, Lisa. And I can't even imagine what the last few months have been like for you and D and William.

I think of you often. Prayers and hugs for all of you.

Andrea said...

I've used your blog as a springboard for some of your links to blogs of kids with pvl for probably almost two years. Your son's pictures and descriptions remind me very much of my daughter, who has some of the same diagnoses. I cried when I read your post -- I am so very sorry about this stroke. I wish these kinds of things simply didn't happen to kids. I'm glad William's personality is intact -- that was one of my big concens as well when my daughter began having big seizures last year. I love the picture of your daughter kissing him.


Home Audio Tower Speakers said...

i hope willy get well soon

Angela said...

I was in shock and had tears throughout your post. I had this huge urge to check on my blogging friends this morning and I knew it had been a while since your last posting but truly had no idea what was going on. I am so sorry Lisa. I will keep William in my thoughts and truly hope he gains back strength and continues to make progress. Please keep us posted. ((hugs))