Monday, October 16, 2006

Daddy's Home!!!!

Daddy arrived home last night around 5pm. Yippeee!!!!!!!!!!!!!!!! We were so glad to see him walk in our room and give us hugs and kissess. The first order of business was for daddy to hold Little Bug. We proped up pillows for the ventulator to sit on and daddy got to snuggle away for awhile (that is until daddy just about fell asleep from jet lag!!!) We stayed together in the sleeping room and we hoped that they were going to do the bronchoscopy today, but it was pushed off until possibly tomorrow. Connor did pretty well over night and this morning they even changed some of the settings on his ventulator so that he would get more of a drive to breathe on his own. They are weaning off of some of his sedation meds, but it's a fine balancing act to get and keep him at the right place where he is comfortable and not aggitated. His fever began rising again around noon today and at about 3:30 it topped out at 104.5!!!!!!!!!!!! He is now getting cooled off with ice packs and cool wash cloths!!! Poor little guy just needs a break. They sent more blood off to the lab, but no results as of yet. Randy and I also met with the neurologist this afternoon to discuss last weeks episodes with seizures. They are going to be keeping a close eye on things to see if they can determine if the seizures may be related to his fevers or to his narcotic wean. We will hopefully know more in the next few days.

Our plan is to go home this evening and get a good nights sleep in our own bed. It is so hard to leave Connor behind, but it is becoming essential for our own mental status to get out of here. Randy and I feel a significant urgency to make a plan of attack on how we are going to handle the coming days, weeks and months of caring for our sick little boy. We pray that the Lord would give us clarity and creativity as we try to devise a plan. If I know Randy, and I think I do, he'll have the dry white marker board out with many colors of dry earse markers to put our plan into action!!!!! HA HA

At the moment we are waiting to see if Connor's fever will come down before we leave. Tomorrow should be the day that they choose to do the bronchoscopy. We will keep posted as to the details when they are available.

Lovebug Hugs,
Lori, Randy and Little Bug

35 comments:

Teresa Denessen & Gang said...

YEAH!!!!!!! So glad Randy you are home & back with your family. We know it's got to be tough to be away. Praise the Lord for a safe return. How funny Lori about the whiteboard with dry erase markers!!! You made me belly laugh. I can just see Randy now writing out a plan..... We will be praying for clarity & decision making for the doctor's on how to proceed to get little bug all the way better! And also for a Miracle for little bug....God is still in the miracle working business...Sometimes our human eyes just can't see it yet. Give Connor many lovebug hugs for us all. God bless each of You. Auntie Teresa & family

Susie - Maggie's Mom said...

I'm glad that the two of you are going to get some rest at home. We are praying for little bugs temp. to come down and for you to come up with a plan for the upcoming days, weeks, months. One day at a time, sometimes one hour at a time. Wishing there was something we could do for you. Your friends, Geoff and Susie Devries.

Bug said...

Im so glad your home Randy!!! And Im gllad you guys are headed home for some rest, you have to be ontop of things while your there and it takes alot out of you. I hope Connors fever comes down so they can do the bronchoscopy, I pray that all goes good and he continues to lower his settings and get soff that vent! Always thinking of you guys Love SHiela

Anonymous said...

Lori--I can "hear" the renewed 'fight' in your voice, with your partner being home.... what a blessing our mates are huh?! Jesus will keep and sustain ALL of you...He's got all 4 of you right in the palm of His hand, keep abiding there! You're in my prayers lots throughout every day! Much love, Camille Smith (jesscam1@juno.com)

Anonymous said...

Welcome home Randy!

Jon and Cheryl Maulin

Cookie said...

Glad to hear Randy is home safe and sound. Will be saying an extra prayer or three for littlebug today.

Pam Newman said...

Lori and Randy,

I have not posted on your site before but have been following Connor's blog for a long time. We are friends of the Emerys.

Have you considered a prayer event at Childrens? We did that for little Brent. A bunch of us got together in the lobby, joined hands and prayed for Brent. It turned out that was really at the low point in Brent's experience - things starting turning around after that.

You never know when you've hit the bottom of the valley, but prayer can pull us up out of it. We'd certainly be happy to come down and participate. Probably a lot of your bloggers would as well.

Jackie said...

Glad to hear that Randy is home! Prayers are being sent your way.

Jackie, Scott and Trevor

Anonymous said...

Over 50,000 visitors to your blog!!!!! Wow Little Bug, you have definately touched alot of people's lives in a big way. So many people are praying for you every single day. You are in inspiration to all of us. Get well soon Little Bug!

Anonymous said...

You sound so much better now that Randy is back. What strength we gain from our Godly husbands. I hope you 2 are getting a chance to re-connect a little.
Love
Tammy

Anonymous said...

Thoughts and Prayers!

Jon and Cheryl

Rebecca said...

Lori, Randy, and Little Bug,

I visit your blog often and I am always amazed by the great strength you share as a family and all that Connor overcomes. He is one tough boy and I keep in my thoughts and prayers often.

I would like to add your blog to the Gifts website as a personal link. There are currently several blogs there. I think that your experience could be helpful to other families who are new in the journey of having a child with DS that also has heart or other fragile health needs.

http://giftsds.segullah.org/down_syndrome_links.htm

I think it would make a nice addition to our list. Please let me know if this is acceptable by emailing me at: rebecca_phong[at]segullah.org

I won't add you unless you approve, but I am certainly hopeful that you may consider it.

Anonymous said...

Hello Connor and family,

You don't know us, but we are cousins of Wyndi, Izabell's mom. We read your blog every day and are amazed at your awesome family and your incredible faith. Our prayers are with each of you every single day.

Betty in New Mexico

Izabell said...

lori and randy

we hope you got some sort of rest. so happy your together aain. we are praying for connor every day and have recuited family :) love wyndi izabell and steven

mum2brady said...

So glad that Randy is back - we are praying for Connor constantly. Sending many many prayers and cyber hugs your way. Praying today gives you some answers and that Connor can heal and recover....

Susie - Maggie's Mom said...

Randy & Lori, I am praying that everything is going ok, the silence has me a bit worried. I'm hoping that you are just busy and Connor is feeling better.
Constant prayers for all of you! Susie & Geoff.

Kristine and Abbie said...

It has been several days since a post and I, too, am a bit concerned...I pray that you are simply taking some time with each other and taking some deep breathes...

Praying for you up in Bellingham,

Kristine and Abbie

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