Tuesday, November 03, 2009

So Long Make a Wish Trip...Dear Son in the ICU on a Ventilator

We were scheduled to leave for Florida for Dear Son's Make a Wish trip next Monday... but now that won't happen.

On Saturday evening, Dad picked up Dear Son around 7:30 to take him overnight. He works 12 hour days so that is when he picks him up. Around 10 p.m. Dear Son broke out in a fever (he had been totally fine all day Saturday) so he called me and said that he had a fever. He said he was going to give him some Tylenol and I told him to watch the fever since Dear Son can deteriorate fast meaning his breathing can get very labored. I asked him to call me at midnight when Dear Son gets his meds if things get worse. I talked to Dad the next morning and Dear Son still had the fever so I told him to give him the "adult" dose of Tylenol. (Dad had given 500 mg. and the bottle said you could give up to 1000 mg. which he did.) Dad had difficulty controlling the fever with Tylenol and around 3:30 in the afternoon he called me and said that it was too early to give more Tylenol but the fever wasn't going down. He was bringing him back home to my house.

By 6 p.m. I had arrived home and Dear Son still had a fever. His breathing wasn't great but it wasn't terribly hard yet. His fever was around 101.4, I really don't remember right now but I knew he had to be seen to figure out the source of the fever. Dad wanted to take him to a local ER but I wanted to take him to Big Academic Medical Center since I knew if things headed south, they could treat it and it would save a trip from the local ER transferring him to Big Academic Medical Center. I paged his pediatric neurologist (who functions like our pediatrician) and he said to take him to the ER immediately.

We arrived at the ER and they took his history. Some time later (I don't have a lot of time right now so I'll try to give you the abridged version.) the Supervisor of the Physicians (that's how he referred to himself) came in and checked him out. He said the physical exam shows sepsis and they are treating him as such until they have more information (they took blood work). He asked if I wanted to donate Dear Son's organs (I said no.) and asked me if thing proceeded what decisions have I made (meaning do I want a Do Not Resusitate) and I said that no, I could never do that. The ICU doc came down and assessed him and they asked me the same questions. How depressing...

Around 2 a.m they transferred him to the ICU. The fever continued to go up and they couldn't get control of it. They put him on an In-rebreather at 12 liters of oxygen and had started him on Vancomycin and Zosyn. Neither appeared to be working. Dear Son has an allergic reaction of sorts to Vanco-he gets Red Man Syndrome. It's not a "true" allergic reaction but it means they have to run the Vanco very slow and give him Benadryl which they did. Of course, being the Dream Mom Super Organizer that I am, I have his allergies or reactions to Vancomycin and Zofran documented on his Emergency Information Sheet.

In desperation yesterday (my words), the ICU Attending told me that she contacted Infectious Diseases. She said that they may have to vent Dear Son but she wanted them to come and look at him to see if they were missing anything. She said that they can't get control of his fever. They had been giving him Tylenol and Motrin to get it down and it wasn't working. (As an FYI, I had taken Dear Son on 10/26/09 and gotten his seasonal flu shot and pneumonia vaccine at Big Academic Medical Center but couldn't get the swine flu injectable vaccine because they ran out.) They had previously contacted Dear Son's Pulmonary Doc (She's the Head of Pediatric Pumonary.) there and informed her what was going on and had gotten instructions for the chest pt vest and nebulizer schedule. They had been giving Dear Son nebulizer treatments as soon as we got to the ER so this was just a more schedule. As Dear Son deteriorated, they called her again to see if she could come see him right away. The ICU doc said that they were going to turn the In-rebreather up to the maximum setting to help Dear Son. By now he was on 18 liters of oxygen which is the maximum for that (Some places the max is 15 liters from what I understand but here it's 18 liters.).

Eventually, the Big Wig at Infectious Diseases thinks he's figured it all out. He's really nice and it's a good conversation. He thinks it's a viral pneumonia and they put Dear Son on the Bi-Pap machine at 100%. Dear Son does better and we are all happy. Once he gets some rest from breathing too hard, they'll try to reduce it to 60% over time. His fever begins to come down and we are now one happy family.

During the day, Dear Son had been crying out repeatedly, which was stressing me out and I couldn't figure out what was wrong. I asked if there was something for pain for him but eventually, when I saw his fingers moving, I figured out it was seizures (fevers can raise the seizure threshold) and I used his VNS magnet and they stopped. He didn't cry anymore and things were good.

I left the hospital last night after Dad arrived to get some sleep at home. I have to work today and then I would come after work and be there the rest of the week.

That was yesterday. I had a good night's sleep and Dear Son appeared to be on the mend.

In the last hour, things have dramatically changed. His fever began to spike in the morning and his breathing deteriorated. I just got a call that they had to put him on a ventilator asap and put a central line in. Things are not looking good.

I need to cancel work and get back down there. I don't know when I can update you again. Please pray for Dear Son. I don't know if this post makes sense or if I included everything but I don't have time to proof it right now.

55 comments:

J said...

my thoughts and prayers are with you, dear son, and dear son's dad today. Hoping everything turns around soon and he's back home with you.

Daisy said...

Harley and I are linking paws and sending our very strongest purrs for you and dear son.

twigletmac said...

I normally lurk but just wanted to say that my thoughts and prayers are with you, Dear Son and his dad.

Mitzi said...

Prayers are on the way for all of you.

Olive said...

Praying now...

Anne in NY said...

Thinking of all of you, with love and prayers.

jbbzmom said...

Dreammom, I have been thinking about you lately but haven't had a chance to check in. I am so sorry to hear what is happening. You and your family have been in my prayers since first we "met" but today you will get a few extra as well.

deb said...

Dream Mom, I am so sorry this has happened to Dear Son. My thoughts and prayers are with you, Dear Son and Dear Son's Dad.
Deb

Anonymous said...

Please know that we are praying hard for your Dear Son, and for you and his dad as well.

canucker said...

{{{{{Dream Mom}}}}} My heart is breaking for you... no words...

canucker

Fat Doctor said...

God be with you all during this terrifying episode.

Heather said...

My thoughts and prayers are with you, Dear Son, his father and the doctors working with DS!

Michelle said...

God please.

whatever to us said...

In our thoughts and prayers...

Louise said...

My thoughts are with you all...

fishofdeath said...

I'm not really the praying type, but my thoughts are with all of you at this time.

Lois Grebowski said...

just checking in... I am praying for everyone from dear son, you and your ex-husband, as well as his medical team.

sending hugs and healing thoughts your way.

Anonymous said...

Healing thoughts and prayers for Dear Son, for you and for Dad.

Kathleen

jankat said...

My prayers are with you and your son.

Neurotic Illini Fan said...

Holding you and Dear Son in my prayers.

Sara said...

I'm very, very sorry. I hope things turn around.

Mary said...

I'm praying for DS fervently, and will continue til he's home again. I know this is very hard for you, but have faith.

God bless,
Mary

momomom said...

I'm so sorry.

Anonymous said...

Praying for Dear Son and you and his dad.

Poppy Q said...

Dream Mom we are thinking of you and dear son. Big hugs.

JSmith5780 said...

Positive thoughts and prayers for you all.

Anonymous said...

Many prayers and thoughts for you and Dear Dad. I am lifting up prayers to heaven that Dear Son will be healed.

The Keeper said...

Oh, man... thinking of you and your son and how much the universe must be weeping right now. I'm so sorry.

Summer said...

Thinking of you now...hoping for a turn-around.

Liz said...

My thoughts and prayers are with you right now.

Anonymous said...

I am usually a lurker, but in this case, I wanted to say:I hope Dear Son turns it around. You guys are in my prayers.

Ashley's Mom said...

constant thoughts and prayers...

deb said...

Still praying for all of you....

Anonymous said...

I'm so sorry to hear this has happened. Sending my thoughts and best wishes your way.

Lori x

Lois Grebowski said...

I keep coming back just to check on you. I've got tons of folks praying for y'all... Big hugs...

deb said...

Back again...
Thinking, praying, praying, thinking, praying praying praying...
Sending loving thoughts to all of you.

deb

deb said...

And a thank you to Lois G.....
She reminded me to pray for the medical team.

Praying, praying, praying...

Banana Anne said...

I have never commented on here before, but now is the time to do it. I am definitely keeping you all in my prayers. Oh ALLAH, please bless Dear Son and his family. Please comfort them during this time, and please let Dear Son be healed and back home soon. Please keep him and his family always safe in Your loving care, Oh Most Merciful, O Most Compassionate, O Protecting Friend, O Loving. Ameen.

Erica said...

Thinking of you.

Jan's Funny Farm said...

We're terribly saddened to read this. Our thoughts and prayers are with you and your dear son.

theharrisfamily4 said...

Praying for you all during this time.

Megan said...

My prayers are with you.

Billie said...

Oh my. I am so sorry and will be keeping your family in my thoughts.

Anonymous said...

Continuing to hold you all in prayer

Rambling Round said...

So very sorry, Dream Mom. Your description of his illness sounds so much like the course of the H1N1flu. Hope that whatever it is, DS will respond to treatment and prayer. God bless.

Jaymie G said...

Checking in today to let you know that I'm still thinking of you all and praying for your peace.

deb said...

Continuing fervent prayers and loving thoughts to everyone.

Michelle said...

Hey fellow prayer warriors. Got a quick email, Dear Son is hanging in there. DM, THANK YOU for writing. Looking forward to the morning update. I admit, I was worried. Ok, still worried. But your email was a HUGE relief. Love and prayers to you guys.

Dream Mom said...

Thanks, everyone for all of your prayers and wonderful comments and support. Dear Son is still on the ventilator and had a few set backs today but is hanging in there. I'll update the blog in the morning with his diagnosis and an update but I am pretty tired right now and need to get some rest.

Anonymous said...

I too normally lurk and have been following your blog for some time. I just wanted to let you know that my thoughts and prayers are with you and your family.

Anonymous said...

Holding you all in my heart.

Anonymous said...

I am so sorry to hear this terrible news.

But, Dream Mom (and you truly are one), I would urge you to reconsider your decision not to donate organs when the sorrowful time comes. I myself was just yesterday filling out papers for donation -- I have a vestibular abnormality that a lot can be learned from, so I am specifically donating my temporal lobe. I WANT science and medicine to learn from my condition. And on the rest of the form, I am saying to absolutely take all other usable organs for donation. I would be honored if those organs were used to give someone else life and health.

I would never consider not donating my organs. I think it is the highest use of them upon my untimely death or anyone else's.

I wish you only the best in this difficult time. Your love and devotion to your son are unsurpassed.

Michelle said...

the suggestion to donate his organs three or four days ago, when he clearly was not dead, was improper. This is such a personal choice, and I could never fault DM for hesitating, if that is what she does should the question legitimately arise LATER. Dear Son has already given so much to the understanding and knowledge of his disease. To ask more of either of them right now seems unbearably unfair. and too early. I am guessing THAT was the issue, and it stood out to me as terribly cruel considering the suddenness of the illness, had to take her breath away to be considering that so quickly.
The child is on a vent, IF this question arises, his body could be maintained well after his death, and give his mother and father time to discuss this when they know the outcome will not be good. Right now, he is alive, and fighting. All of their energy has to go into believing he can win this battle. Just my 2 cents.

Dream Mom said...

Anon-I so appreciate your heartfelt suggestion with regards to organ donation. While the doctor probably was premature in asking me about that, organ donation saves lives.

That being said, I will never do it with Dear Son. The main reason is that he has had some sixty hospitalizations in his life and we've been through all of them together. He's been poked and prodded and suffered with seizures, illnesses and multiple disabilites. When he dies, that will be it. There will be no more of anything-no cutting, no poking, not prodding, no nothing. I do not expect you to understand this as this is just my own experience after doing this for 17 years. I love my Dear Son and that is where I stand on this issue. I ask that you have compassion for our journey and my decision.

Catherine said...

Oh, no, Dream Mom. I am saying some prayers for you Dear Son and all loved ones there.

I am so sorry about all of this. The timing is so terrible. The H1N1 shot disaster just should not have happened. I have been telling folks that for most of us it is not a matter of deciding to get the vaccine or not; it's being able to get it as it is in such short supply. DearSon should have been first in line for this.

I am praying for a full recovery for Dear Son, off the ventilator so that things can go back to where they were, and the MAW trip rescheduled. I don't feel that you are ready yet to winding down the journey, and pray that the timing for that comes in your rhythm.

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