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Brayden is home.

Last night was rough for Brayden.  Very little sleep fo him (as well as Jeremy), as they camped out in the ICU.  First they had trouble managing Brayden's pain.  It seems as though Brayden does not react well to morphine.  He gets more upset and agitated after the doses of morphine were given.  He was switched to Tylenol with codeine sometime in the night.  After the morphine wore off and the codeine set in, Brayden was doing a bit better.  But he was gagging and vomiting constantly throughout the night.  The extra secretions, pain, swelling and crying caused him to keep vomiting...then they would suction out his mouth over and over again.

By the morning, Brayden was doing much better.  The tylenol with codeine was working and Brayden was not gagging/vomiting as much.  They wanted to watch him for the day to see if he could go home.  Brayden made it through the day with only a couple of vomits, couple of seizures and a few times of dsat while he was sleeping (which he does at home).  After talking with the ICU team (who talked to the neurology team, keto and ENT), they decided he could go home.  The discharge crew came by to make sure we had suction, oxygen, monitor, etc. at home...and those prescriptions for amoxicillin and codeine.

Now, Brayden is resting comfortably in his own bed.  He looks exhausted so hopefully he will get a good night sleep tonight. And I will being sleeping in his room tonight...there to suction at a moments notice.

Surgery Done

Brayden had his adenoids and tonsils removed today.  The surgery was done at Children's in DC.
He was admitted directly to the ICU to monitor his breathing (since we have had a problem in the past); apnea; and seizures, in part due to the ketogenic diet that limits IV fluids and certain medications.

The surgery was quick.  The tonsils were completely removed; the top of the adenoids were removed but the ENT left the bottom part due to him being hypotonic and help keep things a little supported.

The wait for the surgery was not quick.  As we waited in the pre-op room, they discovered that Brayden was not scheduled for the ICU.  Anesthesia, as well as the ENT, would not let him have the surgery unless he was going to be in the ICU for the night.  We waited as they scrambled to get things arranged.  First, there was no room in the ICU, then they could not get through to insurance to have the ICU approved.  All of this should have been arranged last week...thus the purpose of the pre-op appointments.  A couple of hours passed and we were still not sure if he was going to have the surgery or not.  Brayden was happy, in a great mood and even had a nap in daddy's lap.

Finally everything was set up for the surgery, anesthesia, ketogenic and ICU, so they rolled him off.  Surgery was done in about 40 minutes, a brief stop in the PACU and then he was taken directly to the ICU.

Brayden is in the ICU.  They are still working on managing his pain.  A respiratory therapist is right there watching and suctioning his secretions.  The neurology team stopped by to check on his ketogenic diet and try to figure out his seizure medications (hard to do on ketogenic diet and not all are available via IV).

Brayden handled the surgery pretty well.  They did warn us that after the surgery he may have still been intubated.  When we walked in the ICU we did not know what to find; but he is only on oxygen by nasal cannula (not at all intubated) so that was great to see and know he handled being intubated for the surgery.  He stills seems to be in pain despite the doses of morphine.   They will watch him through the night and tomorrow as the swelling continues.  If all goes well, he still could go home tomorrow late afternoon.  For now, lets pray his pain is controlled and he sleeps (and for Jeremy to get a little shut-eye since he does the nights at the hospital). 

Thank you for your prayers, emails, texts and calls.

Christmas Wishes

Thanksgiving decorations are still on the table and we are all preparing for Christmas.  As many of you embark on crazy Christmas shopping, gearing up for Black Friday, making those lists...consider this.
Write a letter to Santa. 

This year Macy's has a mailbox that is just for letters to Santa.

For each letter, Macy's will donate $1 to the Make-a-Wish foundation.  You do not have to donate money, just a little time for a letter.  Have your kids write a letter.  Stamp the letter, drop it off at Macy's and Macy's will take all those letters to the post office for Santa.

Write on your own or use Macy's online tool.

If you do not have time to stop by Macy's or do not have one near you, just send them to us and we will be happy take them to Macy's.  Carter, Luke and Brayden would love to drop them off at Santa's mailbox. 

Make-a-Wish granted our wish, please help others have their wishes come true too.  Just write a letter to Santa.  For more information, you can check out Macy's Believe (has lots of fun Christmas activities on the site) or Make-a-Wish.

If you would like to send your the letters for us to drop off, please email me (efcarrie at aol dot com) for our address.

Time for Thanksgiving

It is Thanksgiving morning.  The house is quiet.  Just Brayden and I home.  Jeremy has the boys for their first Thanksgiving hunt (I think they are hunting ducks or geese?).  I am busy cleaning up around the house.  I usually have the TV or radio on as I do things around the house.  This morning it is just quiet.

My head swirls with preparing not for Thanksgiving dinner but for next week.

Brayden is going to Children's for surgery to have his adenoids and tonsils removed on Monday.  We had two pre-op appointments this week.  One for blood work and check-up.  The other for anesthesia.  Our anesthesia meeting was long, too long, two hours too long.  We talked with the NP for a while and then with the anesthesiologist. 

The procedure to have the adenoids and tonsils removed is routine and, for most kids, outpatient.  With all of Brayden's medical needs and medications, we seemed to overwhelm the plans for pre and post surgery.  Brayden is hooked up to his feeding tube for over 20 hours a day, on a ketogenic diet.  He also takes over 10 medications.  With the rule of clear fluids then no fluids X amount of hours before a surgery, we have a hard time doing that for him.  He cannot be put on pedialyte too long because of the ketogenic diet.  Then the total quantity of his medications and flush are too many fluids before a surgery.

During the appointment they considered bringing him in the night before so that he could be on IV fluids and medications.  Then they found that Brayden's surgery is tentatively scheduled for 12:30 p.m. which means we can do his essential medications (seizure meds) that morning.  The ketogenic team is putting together a plan for Brayden's fluids.

The anesthesiologist and the ENT have decided to tentatively schedule Brayden to go to the ICU after the surgery since he struggles with sleep apnea and seizures, which could be aggravated by the procedure.  The swelling that happens after the surgery  can cause be a brief problem for apnea.

While all of these things are put in place to protect Brayden and trying best to prevent any complications, it feels like too much.  They say, "the procedure is routine and he should handle it fine" then come back in the room to say, "we have put in for a bed in the ICU after the surgery"...not something that seems simple and routine to me.

This is the first time Brayden will have a surgery, since his respiratory problems and stay in the ICU back in the spring.  He did have the Botox in August, which was a total of 20 minutes from when I handed him over to when they paged me for his recovery...anesthesia barely counts that as a procedure.

The plan at this point is to have prep phone call on Sunday night with strict instructions from the keto and anesthesia team for his fluids and his medications.  Also to find out the official surgery time.  Monday, we arrive two hours before the procedure.  He goes in the surgery that should take about 45 minutes.  Then Brayden maybe put in the ICU for observation for 23 hours.  If all goes well, he could go home but we were told he could possibly have one more night in the hospital.

The good thing is since Brayden only takes fluids by his feeding tube, we do not have to struggle with eating.  he also has an incredible pain tolerance.

So on this Thanksgiving morning, I am working around the house like when we go on vacation.  Laundry done, fridge cleaned out, all the boys activities/needs situated and bags packed.  And I cannot forget those comfort items and things to pass the time.

But this afternoon, there will be eating.  Eating the dinner just so I can have the dessert.  Gobble, gobble.

 Crafts done by Brayden with the crew at school.

The sweet moments

Brayden was not settling down one evening.  I asked Luke to help calm him so I could get Brayden's things ready for bed (it is a process that takes a while).  Luke climbed into bed with him and watched a movie, immediately Brayden was content.  I came in to see Brayden stroking Luke's hand with his.  Brayden was so peaceful.

Grandma Sommerfeld

Jeremy's Grandma Sommerfeld is now rejoicing in heaven.  She lived an amazing life.  A beautiful Godly woman.  If I could just pick a couple of words to describe her it would be content and peace.  She was content with whatever God handed her way, not a complaint or even a whimper.  She was always so peaceful, never showing anger or frustration (of course some of that happened in the last couple of years as the "filter" faded away but it was still so endearing no matter what she said).  She always seemed at peace with her life, at any stage.  Also, watching Jeremy's mom take care of Grandma over the years...such a picture of love...always making sure her mom was taken care of, a part of countless family events, driving her back and forth, and catering to Grandma's needs, that became more and more over the last few years.  
Grandma Sommerfeld spoke so fondly of her beloved family.  Always embracing with a hug and a sweet gentle kiss on the cheek.

In our family, the one who got the most of those hugs and kisses was Luke.  Some how, from very early on, he clicked with her.  He always wanted to go to lunch with her after church.  Never leaving to get in the car until he gave her a hug good-bye.  I asked him once about his connection with Grandma...he told me it was because they both had white hair.  Even this past week he made her a card.  It took him two tries to get it just the way he wanted.  He drew a picture of him giving her a flower.  Grandma's hair was done with a white crayon to have curls; his was with the same white crayon, straight hair.

I quickly scanned through some pictures and I found an abundance of those moments with Luke and Grandma.  Precious.

Since Brayden came along, we were never quite sure how much Grandma understood about his medical needs and disabilities.  I guess she didn't really need to know, he was another one of her great-grandchildren to love.  One Thanksgiving, Grandma was not able to move much nor was Brayden.  Both of them were parked in a room.  No one else in the room.  I glanced in to check on Brayden and I saw Grandma gently place her hand on Brayden's hand.  Melt my heart and tears in my eyes.  She loved him just the way he was. 

Grandma Sommerfeld will be missed.  I am so thankful I had the opportunity to be a part of her life and that my children had her as a great-grandmother.  She is leaving her legacy as a woman who loved the Lord (she oozed the grace of God) and she loved her family.

Port Discovery for Brayden

Last week the boys had a couple of days off from school.  So we headed to the inner harbor of Baltimore to visit Port Discovery Children's Museum. I thought it would be a good experience for Brayden.  Art and crafts, water room, play-doh, etc. 

Well, he only liked for about an hour...then he fussed and fussed until we left.  Walking around outside in the beautiful weather calmed him down.

FWD

I often say how blessed we are to live in this area for Brayden.  We have access to countless doctors and specialists that are the best at what they do.  The amount of hospitals, speciality centers, research centers, university hospitals...in this area is mind boggling.  We do not have to drive hours to get care.  We have many options right here (although it may still take hours with traffic).

We do not have to worry about food, shelter, clothing, safety, medical treatment, etc.

I know that if Brayden was born in many other parts of this world, he would not have lived long.  I cannot imagine as a mother not being able to provide for my child...not being able to even provide the basics of food, clothing and shelter.  We do live in an amazing area and country.

Right now there is a campaign to help Africa.  Those who are struggling to stay alive.  Mothers who cannot care for their children.  It is mind-boggling to think about all these people suffering and dying.



A note from my brother who has been leading this from the inside at US AID.

Dear friends and family -
People ask me all the time what I do at work and its always difficult to explain.
But over the last two months, I've been working many late nights and weekends leading a public awareness campaign for people in East Africa (Kenya, Somalia, and Ethiopia - also called the Horn of Africa). The campaign is called FWD - and we are asking people to help spread awareness about a crisis that is currently taking place.

Right now in the Horn of Africa people are suffering from the worst drought in 60 years, the worst famine in 20, and non-stop violence. The result of this is that 13.3 million people have had to flee their homes, 750,000 are likely to die in the next 3 months, and more than 30,000 children have already died. Just as a point of reference - this disaster is 5 times the size of the Haiti earthquake.

I've heard countless stories of families leaving their homes to find food - only to die along the way. My co-workers have spoken with mothers who left their houses with two or three children - only to arrive at refugee camps with one child. The mothers were to weak to carry all of their children so they had to choose which child would live, and which would die along side of the road. No mother should ever have to choose which of her children can live, simply because she doesn't have food.

I'm guessing like most Americans, you've never heard about it. In fact 60% of Americans have no idea this crisis is even going on.

Today is the most important day of the FWD campaign. Today is FWD Day. On this day, we are asking 13.3 million Americans to take an action for the 13.3 million people impacted by this crisis. We've got a lot of exciting things lined up the day - the part that I'm the most excited about is our Celebrity videos being featured on youtube.com home page. You can also check them out at youtube.com/fwd.

I'm sending this e-mail to you, to tell you that you can help. You can help save a life today. There are several things that you can do.

1. Forward this  to everyone you know. The more people know, the most people will feel completed to act.
2. Text "Give" to 777444 to donate $10 to relief efforts. Your $10 will literally save a life. It can provide food for a child for 10 days or it can provide a months supply of water.
3. Visit our website, www.usaid.gov/FWD to learn more about the crisis. You can also donate online from the site.
4. Finally, but more importantly pray. Pray for the people impacted by the crisis - pray that God will move in the Horn of Africa.

This is by far the most important project I've ever worked on in my career and I appreciate your support as we work to save lives.

Date and Venue

Brayden is scheduled to have surgery on Nov 28.  He will be having his tonsils and adenoids removed.

We are not having the procedure done at Inova Fairfax.  He will be downtown at Children's.  While Fairfax is much easier for us, having it done at Children's became a better choice (to complicated to explain).

Brayden will go in for surgery that morning and plan to stay one night in the hospital for observation.  It is typically an out-patient procedure but for Brayden, since he is anything and everything but typical, we get 23 hours of observation (that is what I was told by the pre-op nurse).

Screamer

That might be Brayden's new nickname at school.  He has been screaming his way through his hours and days at school.

No clue as to why.  He has been doing fine with us.  Yes he fusses and cries sometimes for us but at school he is consistently crying and screaming.  This is his 3rd year at school, almost all the same people in the classroom, same room, same routine and activities.  The past couple of years he did really well at school...this year is a different story.

I have discussed things with his teacher several times and his nurse (who accompanies him to school).  They are trying little things here and there to help him.  But no one is really sure what is triggering him to become so upset.  And then he gets really upset...past the point of no return...he gets so upset that he is inconsolable.

This week, a behavior specialist was called in to help.  Jeremy and I both got a good chuckle with the thought of a behavior specialist called in for Brayden...a child that cannot talk or walk has behavior issues.  Really the specialist was brought in to help with fresh ideas and maybe a new perspective on Brayden.

He sample school picture came home this week.  I did not know it was school picture day (his brothers had football that night and he was wearing a football t-shirt in support) and clearly he was not pleased. Although Jeremy is calling this his football face.  But hey, he wasn't screaming for the photo...that happened before and after.

Brayden made it through Halloween

Yes, we dressed up Brayden for Halloween.  I justified it because it was a hat (Yoda head) and a warm jacket/blanket (the Yoda wrap), all to keep him warm for the cold Halloween night.  His chair decorated once again with the pumpkin lights.  He did not seem to mind the trick or treating until he was tired.  For all the family fun check out the family blog.

But honestly, he is the cutest Yoda ever.