Day 3 after surgery and still going strong !!!!!

Dad here for a quick update. As you can tell I like pictures and like the saying goes " a picture is worth a thousand words", so if my calculations are correct this post has at least 5000 words in it !!! Not bad huh!

Ok here goes....Today started out with Littlebug doing very well with all his numbers looking good except that he still had that nasty garden hose in his nose....AUGH

How would you like to have that big tube up your nose....needless to say when the doc's decided to extibate, Daddy and Mommy were very excited....so at about 0830.....

...out came the ventilator tube and finally our Littlebug had some relief......it also helps to have your little buddies around for support too!

If you've ever wondered where we live....well, its here Lot 4 Emergency Parking. We were preparing for a long haul with this suregery so....

.... we asked Grandma and Grandpa Robertson for the use of their motorhome, which they so graciously let us use...Thanks Mom and Dad! But now we are "hoping" that we may not have to use our "home away from home" that long!! And maybe, just maybe, my hope as a Daddy can come true sooner than we all expected and that is to.............


.....be at home with my littlebug all snuggled up, sleeping in Daddy's arms on our couch!!!!???????


Lovebug hugs....Randy Lori and Littlebug

The ventilator has been removed !!!!!!!

Ok...more good news!! This morning the ICU team decided to extibate. So at about 0830 out came that big ole garden hose that was smash up his poor littlebug nose!!!! Yippie...as you can tell Daddy is very happy about that and so is Mom. It didn't take him long to settle into life without the ventilator and his numbers still looked very good. We are so excited that our little guy is doing better and feeling better too. Again thanks for all your prayers...but dont' stop OK !!!!

By the way, if you haven't figured it out yet by my incomplete sentences....this is Dad writing. And I do have some more good news. I sent Lori home!!!! I consider that a great victory!!! Lori has been continually at Connor's side for so long now she just needs a break so finally she's taking one YEAH!!! I hope I can get her to do this more often...time will tell.

I'll try to put up some more pictures soon....but until then

Lovebug hug and kisses......Daddy Mommy and Littlebug

Littlebug is recovering better than expected !!!!

Hello all you bloggers....just a quick update. It's Dad here so you'll have to put up with incomplete sentences and the like but I'll do my best!

Littlebug is doing good. He's still on the ventalator but yesterday they removed all 3 of the chest tubes and the pace maker wires!! YEAH!!! So he's progressing quite nicely. Today was a possible day for extibation otherwise known as removing the garden hose out of his little nose...AUGH, I can hardly wait. It looks so uncomfortable. But we also don't want to rush it and be forced to intibate again otherwise known as craming that garden hose back down his little precious nose OUCH!!!!!!!! So we are hopeful that soon it will come out. He did spike a slight fever but we think is was mostly due to agitation and not infection. And if you are wondering what to pray for it is just that.....NO INFECTIONS....that is what we really don't want at this delicate stage of recovery.

Well my other patient should be getting back about now....Oh you might not have heard? Lori's toe decided to act up the day of Connor's surgery and we ended up in the UW emergency room that very night!!!!!! Talk about multiple EP's (that emergency procedures in pilot lingo). Connor's in ICU, Lori's hobbling around...what next....maybe I should just go check in at Harborview and make it full circle....just kidding.....Lord forgive me I was only kidding. Sometimes the Lord gives you what you ask for so I better be careful!!!!!

Overall things are going good here and Littlebug is getting better. Keep up the prayers and Littlebug sends you all..........

Lots of Lovebug hugs and kisses

Randy Lori and "Littlebug"

Littlebug's BIG DAY 8/23/06.............. Open Heart Surgery!!!

Littlebugs big day started out at 0630 with Daddy n Mommy a little worried and anxious, but still upbeat for a positive outcome because we know our little guy is a fighter!!!


And as always Dad n Mom put our "heart's" and "our verse" in Connor's little hope chest so it would be with him in the operating room tucked close by his side....and we told Herman to open Littlebugs eyes so he could get a glimpse of it if he got scared.


....and then Daddy and Mommy had quite a prayer time with Littlebug. We read lots of encouraging Bible verses and told him he needed to be really strong and courageous for this day and to be a "fighter"and not to be afraid and on and on we went.......until finally.....


.....Littlebug looked up and opened his eyes as if to say..... "OK...OK Mom and Dad, I know ya love me but can we just get on with this patch job and get this ticker of mine all fixed up...I'm tired of waitin!!!"......we just looked at each other and said....I guess its time....


...so at 0833, off we all went... down the long sterile hallways that we have walked before....but with more trepidation this time.....we said goodbye and once again told him to be strong and that Mommy and Daddy will not be far and not to be afraid. The doors closed to the operating room and for a moment time stood still... we hugged and we cried.....in anxious wonder....



....the next few hours were a reflection in our life and hearts of our littlebug and how much we love him........we wondered and waited and prayed.....


.....and prayed we did...every hour on the hour...with our hospital prayer team as well as our pray warriors out there in bloggerland...way to go!!!!!!.....because at about 1415 we got the news that.....


.....Littlebug had done great!!!!!....and to quote the words of his surgeon, Dr. Permutt...Connor's sucesseful surgery was "beyond his wildest dreams"....needless to say Mommy and Daddy were ecstatic...our hearts were lifted high and we thanked the Lord for letting us keep our littlebug!....close to "our" hearts!

Lovebug hugs.....Dad Mom and "all fixed up Littlebug"

BEYOND OUR WILDEST DREAMS !!!!!!!!!!!

Mon and Dad are elated.........Connor came through the surgery as Dr. Purmitt said "Beyond his wildest dreams".....so littlebug came through fantastic!!!!

Let all praise be given to the Lord, Connor is back in his ICU room and he is stable. We just left him moments ago and he is pink like any normal little baby should be. His heart is beating on its own and his lung are still be supported on the ventulator. All his pressures look fantastic and we anticipate a full recovery!!! We still have a long haul with his lungs, but the heart is strong and we will give God the glory!!!!!!!!

We are exhausted from our day of waiting so we will post again tomorrow with pictures!!! Continue praying for these critical first few days as Connor recovers!!!

Lovebug Hugs,
Randy, Lori & Little Bug

Prayer Focus For Surgery Day Tomorrow!!!

The Lord laid it upon our hearts last night to come up with an hourly prayer focus for our army of prayer warriors that will be upholding us tomorrow when Little Bug goes into the operating room. It is our desire that we all be in one accord and that our hearts be in unity as we pray for Connor and the entire medical staff that is responsible for his care. If you wouldn't mind printing this post out so that you can have it close by tomorrow for prayer, that would be great. We ask that you take the first 5 minutes of every hour to say a specific prayer for Connor as we have listed out requests hour by hour. Thank you for your faithfulness and we anticipate God's healing hand to be upon Connor and we hope for a miracle of healing to touch his body. We will update frequently as we get info from the operating room tomorrow. Our family will be here fighting the battle with us for Connor tomorrow, so we are not alone. Below is the hour by hour prayer focus!! Thank you for praying!!!

Please remember this scirpture throughout the day:
"Now to Him who is able to do immeasurably more than we could ever ask or imagine, according to His power that is at work within us...to Him be Glory throughout all generations for evermore!" Ephesians 3:20-21

7AM - The Surgeon (Dr. Lester Purmitt) - Pray for calm and steady hands, for accuracy and for keen wisdom and decision making ablility for every step of the surgery.

8AM - Anethesiologist Team - Pray for accuracy of IV placement and for optimal pain management for Connor so that he doesn't feel any pain, cuts or pokes.

9AM - Connor's Overall Strength - Pray for strength to tolerate the intrusion of surgery and for strength of his spirit to fight the fight of his life and not give up!!! We are not ready to say goodbye to our Little Bug, so we are asking you to pray that God would spare his life and allow him the opportunity to grow into that mighty man of God we all keep talking about.

10AM - Connor's Heart - Pray that the repair would be done without complications and that his heart would respond quickly to the help that the surgery will provide for his body.

11AM - Connor's Lungs - Pray that his lungs would reduce fluid and that they would respond to the heart/lung bypass machine without rejection. Pray that he would quickly come off the artifical means of heart and lung support without having to go on complete life support.

12PM - Connor's Parents - Pray for increased faith to believe in Connor's healing. For strength to withstand the hours of waiting for news reqarding Connor's progress. Pray that hope would rise within us and that we would be joined in unity as we battle for our precious son.

1PM - Operating Room Team - Connor should be close to trialing off the heart/lung bypass machine and he should be ready for pressure tests within his newly repaired heart. Pray for quick response time and wisdom for the docs to see any potential hazards or obstacles that need to be addressed.

2PM - Post Operative Care Team - Pray for his nurse Mari (whom we love!!!) for her alertness to Connor's needs, swiftness in acting upon any complications, and safe administration of any additional critical care.

3PM & On - Connor's Recovery - We are asking God for a miracle in Little Bug's recovery. Zero infections, complete lung strength and healing, complete heart function and heart strength and for an overall quick recovery time.

We are prepared for a long haul tomorrow and beyond, but we also know that God could, in an instant, heal Connor completely. We ask for this miracle to be done on Connor's behalf and if it be the Lord's will to preform this miracle for Connor, we already give him the glory, the praise and the honor for his mighty works. We look forward to sharing Connor's continued story of healing and we will update best we can throughout the day tomorrow.

Pray for a peaceful night for all of us as we prepare for this most important day in Connor's Adventurous Journey!

Lovebug Hugs,
Lori, Randy & Connor

Surgery is upon us.....

The surgery date has been set for Wednesday morning the 23rd. We met with the surgeon and docs today and went over the entire plan for Connor. There is no other road to travel than the narrow road to the operating room. We have been informed of all the many risks and complications that may occur and we are prepared the best we can for Wednesday. Today they placed a central iv line in Little Bugs right juggular vein. When he goes into the OR on Wednesday they will also place an artirial line in his arm or leg. He is basically ready for Wednesday and they are going to keep him fully sedated and paralyzed until surgery and probably for up to 2 weeks after surgery as well. We are home for the evening to sleep and get rest for the upcoming days. We will head back to Children's tomorrow after lunch and spend the rest of the time there with Connor until surgery.

I will post more later but I wanted to get the basic information out as soon as possible.
Lovebug Hugs,
Lori

New Information...

It is 9:30pm on this Sunday evening and Randy & I just got off the phone with the nurse that is responsible for Connor. He has been desaturating the majority of the evening without being able to come out of it on his own. They suspect that he may be accumulating extra fluid around his lungs and they are preparing for more X-rays at the moment. He had been fighting the breathing tube so the doctor's made the decision to use a paralyzing drug to keep him totally inactive and they have upped his sedation medication as well. He is stable at the time being because he isn't fighting all of the equipment and their plan is to keep him this way at least until mid morning Monday after they make a decision about how to proceed.

Randy & I made the heart-wrenching decision to stay at home this evening to allow ourselves a good nights sleep. We are filled with anguish not to be at Little Bug's bedside, but we realize that our fight may very well just be beginning with our precious son. We have got to find strength and rest. This is the very first time that we will be away from him at night and not just right upstairs at the hospital. At the moment, I don't even know how we will sleep as we are riden with worry and fear. We have tear stained cheeks today as we have spent hours away from Connor, but we are trusting in the Lord as well as the sheer reality of our situation that we need to gain strength. We appreciate all of your prayers and encouragement. We are in desparate need of a fresh wind of hope. As I write these words I must say that we are believing for a miracle, but it feels like we're holding on by a thread. Oh God, give us strength and peace this night. Awaken us with your joy in the morning. Provide a new wave of your power and touch our little boy. Rest upon our hearts now like a gentle dove and give us the precious reassurance that we need to fall asleep.

Lovebug Hugs,
Lori

Emergency!!!!!

I'm sorry this will be a quick post, but I wanted to get the information out to you so you could pray. Last night at 8pm Little Bug had a rapid downward spiral. 911 was called and within minutes there were firetrucks, medic's and ambulances in our neighborhood. Connor could hardly breathe and he wasn't getting enough oxygen even though he was getting it straight in his nose and mouth. His naked little body was so so grey and pale it was hard to even look at him. He had the look of panic and intense fear in his little eyes and there was nothing I could do to console him. We strapped him naked into his carseat and then onto an adult sized gerny (sp?) and then into the ambulance. From right outside of our house we took another lights and sirens ride to Children's Hospital. By the time we got to the ER Connor was struggling so badly that his body and clamped down and there were no veins available to draw blood from and he was spiking a temp in the high 104's. It became evident that this was the worst that Connor has ever been and so they rushed to get the breathing tube in place. He is fully sedated at the moment and the ventulator will remain in place until surgery. There are many questions and they now know that Connor cannot wait any longer. They will meet tomorrow AM to discuss the time frame for surgery and we are gathering that it will be this week.

Thankfully Randy's fishing trip got cut short because of boat problems so when he called to let us know that he was on his way home the medics were here and my mom was able to tell him what was going on. He then met up with us at Children's Hospital a couple hours later. My mom followed behind the ambulance and Auntie Maureen met us at the hospital along with our pastor. It was a critical night and the status hasn't changed much except for the fact that Connor is receiving the breathing support he needs. Randy & I finally left his side at 3:30am to get some sleep. There weren't any sleeping rooms available so we slept in the back of my parents CRV. Let me tell you, this was quite an adventure. This morning there has been no change and Randy & I actually came home to pull together the loose ends of life right now. We are trying to prepare for another long haul stay up at Children's. Connor is definately in critical condition and this surgery is going to be a very high risk surgery. We need prayer like never before. Selfishly we would ask very specifically that you all pray that God would spare Little Bug's life and allow him to make it through this surgery with great success. God is bigger than Connor's illnesses and He is a healing God. We trust in Him to preform a miracle on his behalf. Lord, in the midst of this crisis we trust in you. We lean on your word and we have faith to believe you for what only you can do!!!! Amen

Lovebug Hugs,
Lori