Wednesday, March 9, 2011

we are home!

his little mummy arm

in the PICU

Thank you SO MUCH for all your prayers and good wishes and healing energy for Rainer these last few days. We are home and he is fine. We still haven't gotten test results back from his MRI, but what they are telling us is that they think this might be a one-time thing.

Here's what happened: on Sunday Rainer woke up from his nap and he was just staring. He didn't respond to me, couldn't talk, had limited use of his left side, didn't respond to his name, and the corner of his mouth was twitching on the left. I called the oncologist and then Faith and I drove Rainer down to the hospital. In the car, he had more obvious seizure like activity--much more twitching and movement on his left side and a lot of vomiting. I ended up taking him to the closer hospital rather than driving him all the way to Santa Barbara. Unfortunately, at the more local hospital, it seemed he was largely ignored most of the time he was there, and in retrospect, I think he was still seizing most of the time he was there. He was mostly vacant and staring for hours.

Near the end of our stay at the first hospital, Rainer finally got some anti-seizure meds on board. I was totally freaked out and terrified of never having my little boy "back" by this point. It is awful to see your child in such a terribly altered mental state. Finally, we got transferred to our usual hospital in Santa Barbara (by ambulance). Gratefully, when he was being rolled into the PICU at our regular hospital, he opened his eyes and said "I just wish we could go home." It was music to my ears!

Ken will stay home with him today. I am well and truly out of sick days so will go to work.

Thank you again for all the healing energy. It helped so much. You guys are such a wonderful and supportive community. I appreciate every prayer and healing thought.

PS--editing to add that Ken and Dieter were out hiking in the desert this weekend, so were not home when this was all starting.

46 comments:

Daniela B. said...

So gald you are all ok!!My husband suffered a seizure like this too, he could not walk,stand,move his right side or speak for 3 days last year.It has been an awful experience, so I can understand you well.I am so happy everithing is fine now :-)

Andrea said...

Oh, you poor thing. One of my boys had a seizure when he was a baby and it was the most terrifying experience of my life--and it only lasted a few minutes. I can't even begin to imagine what you went through for hours. I hope they're right and it won't happen again. Be well.

Hannah said...

Excellent news to hear that you are all home, again. I really hope it was a one time thing - it sounds like it was a very scary experience.
Continuing to send positive vibes for those test results x

muffinmoon said...

I am so pleased you are home. Lots of kids have these as one-offs. BUT it's so scary when they do happen. He is such a star. Tell him he has a fan club over her in England!

Jennifer said...

I'm so glad he's better and you are home. Take care of yourselves, you are in my thoughts and prayers.

catie said...

this was such good news to read this morning, mary beth. your day at work will feel like a walk in the park after what you have been through. please keep us posted ♥

Laura said...

I am so glad to hear that you & Rainer are home. I can't imagine what you've all been through, seeing your child go through something like this.
I hope the doctors are right & this was a one-time experience.
I hope your day at work passes quickly until you return to your little love.

Jenna said...

*cartwheels* So happy to hear he's home!!! Fingers crossed this was a one time event. Sending you all strength & positive thoughts.

Its_Lily said...

I was thinking about you the past couple of days. You were understandably busy, but whew, the silence was difficult. Verrry happy to hear all is well.

Sara said...

I am so happy to hear that Rainier is home. What an incredibly scary experience for you! You will be in my thoughts in the days ahead and I will be sending healing energy to sweet your liitle guy. much love to your family. xox

Lina said...

So nice to know the little one is home and doing fine. Sending strength thoughts for you guys!

Sara said...

My little brother had the same thing happen - it was terrifying, but it was just that one time, too, and he's a strapping handsome teenager now!

Denise C. said...

Yay! So happy you are back home! I completely & truly understand how it feels to have your child in such a bad state (not responsive). Take things one day at a time.
:)

Julie said...

How scary... so glad to read that you are home! I am continuing to pray for you all.

Maiz Connolly said...

Okay, letting out my breath now. I can't even imagine how scary that must have been for you! Give Rainer some extra love from us.

Luisa said...

Wow that is major so glad to hear that he is responding talking and loved.

Tammie said...

im so glad you have good news to share. what a rough ordeal.

Anonymous said...

So glad that you are home :) You have been in my thoughts. I know you mentioned he was on meds, could it have been med side effect?
I am wishing for the best outcome for your boy and family from Clovis, CA. Lorena.

Kory said...

Oh my goodness, how scary! I am so glad that he is doing better and that you guys are home! I will certainly keep sending happy thoughts and prayers your family's way in hopes that this was indeed a one time thing that you never have to go through again!

Poetic chronicles said...

Oh poor little baby! What terrible moments you've been through! What awesome news to read that Rainer is back home and doing fine!! It's going to be ok now, take care!
Valerie

momma rae said...

oh you sweet mama! how traumatic that must have been for you all. i am so glad that you have your little angel back and that you are all home. what a blessing to know that you are enveloped with so much love and support....even through cyberspace. xo rae

Holly C. said...

I'm sending your precious, sweet Rainer wishes for full and speedy recovery!

Holly

Chris said...

glad he is home and hope it was a one-time thing. how scary!

Joy said...

I'm glad Rainers home and I hope he continues to feel better. ((Hugs)) Mary Beth for all you've been through over the last few days!

Catherine Chastain said...

So glad y'all are home again. Sending good thoughts your way. Hugs.

Rain said...

So glad to hear Rainer is home again. And you too!

taimarie said...

Oh mama, what an ordeal- so glad you are through it and sweet Rainer is home and feeling better. Hugs for you and your boy.

Jen said...

I have been reading your blog for a long time, and the story of your son has always touched my heart- especially since my son shares his same birth day (October 23!)if not the year. I am sooooo relieved that he is back home, and pray that his health will continue to improve, day by day.

Anonymous said...

wonderful news that you are home. i hope rainer heals quickly and feels better soon. sending more positive thoughts your way. take care, angela

Amy said...

I am so glad Rainer is home and well. How frustrated you must have been with your local hospital. I cant even imagine having to wait for hours to get care for such a scary situation. As a nurse myself I am often angry with our healthcare system/ lack of bedside manner in cases like these. So glad you both got to SB for care. I'm sure you are looking forward to the weekend and much needed family/ cuddle time.

jamie said...

Oh, gosh. Bless your heart! I can't even imagine how frightening it must have been. I am so thankful that Ranier is doing okay. ((Hugs))

ames said...

So happy to hear you guys are home and doing better! This actually happened to me when I was little, I think my parents said I seized one or two times and I remember taking meds foro a year or so but they stopped. Scary for my parents no doubt but I turned out fine :)

estrellazul said...

I'm glad he's better now !!!! I'll pray for him

pilgrimama said...

So glad you're home and your baby is feeling better. Hope you can get some rest!
It all sounds like quite the scary experience!

Laura said...

So relieved that you are home....you have all been on my mind these last couple of days.

Take care,
Laura

crunchy peas said...

How frightening for you Mary Beth! I am sorry that you did not receive adequate care at the first hospital. That must've been maddening! Such a helpless feeling. I do pray that his seizure was a one time episode. You have both been through so much. God's peace and loving care to your entire family!

Debs said...

Glad to see you are both home and well. In my prayers. X

linda said...

Oh that's great news! I prayed for him too.

Carol said...

We don't know each other but I've been reading your blog awhile and just wanted you to know my thoughts are with you, and your whole family. So scary.....Feeling a little ache in my Mama heart for you all and what you've gone through.

cagio said...

Your little one is so very strong - as are you. When I saw Faith's post, my heart just ached for you and your family. I am so glad to see you are home. We will continue thinking of you as you wait on the results.

Damara said...

So glad that you're home and that he's doing better! Thinking of you and your family and sending all of my positive thoughts and prayers to you.

CountryGirl said...

So sorry to hear about what's happened. Thinking of you and sending lots of love x

julie said...

So glad to hear you're back home and really hope it won't happen again.
Will be thinking of you.

Kristin said...

Hope things are going well with you and your family-my prayers are with you and your family.

lisarenata said...

Oh MaryBeth, I am so sorry to hear of all that has gone on since I've been away, but glad to know things are looking brighter. Rainer, you and family are in my prayers. He's a little trooper and loved that he was ready to go home. There sure is nothing like being at home.

Michele dJ said...

My heart breaks for you and your family going through this! I can only imagine. Adding my prayers to the chorus. God bless.