Monday, December 17, 2012


We are on our way home. Gavins echo was great and yesterdays chest xray was also great. Follow up in two weeks. Chest tube stitch out on Dec. 21st. Cardio appt in 6wks. Gavin is active and is smiling again. For open heart surgery 5 days ago he sure is doing great.
I cant wait see Owen!

Saturday, December 15, 2012

One less tube

Gavin had his chest tube removed today around 11am. I can't even imagine what it felt like to have that thing stuck up there. Lets be completely honest here, I can't imagine any of the pain or discomfort he has been in and is in.  After the tube was removed, they took him off morphine this evening and are supplementing with other pain meds.

He is scheduled For an echo and EKG Monday morning. Tomorrow will involve more walking and hopefully eating.

Friday, December 14, 2012

Lines are out.

Today Gavin has reached all of his goals. He had the ART Line (arterial line sewn into his skin under his left wrist) that was used to get his blood gas tests. Testing the o2 and carbon dioxide levels in his blood was removed. They removed his CVL( central venous line) that was sewn into his neck :( they used to administer meds. His foley has also been removed. All done before 11:00am.

He just got back from his first walk down the hall, less that 24hrs after surgery.  
He should be moved to the cardio floor once there is room. No hurry. 
Next plan is to have his chest tube removed sometime in the couple of days. He is still on a morphine drip and will probably ween down tomorrow. 

Keep cruisen little Munchie! 

Moving forward

Gavin was extubated (taken of vent) at 9:25pm after coming back from surgery at 5:30pm. He has been in and out of conciousness. Imnot sure he is feeling pain or not. He is pretty congested after contracting a cold these last few days. Watching he doesn't develops pnemonia, we are going to have to work all that stuff out.  He is on one liter of o2 but other than morphine he is regulating his blood pressure himself. He does get  lasix but that's to get the excess fluid from surgery off and allows his heart not to work to heart.

Looking at my sweet beautiful boy, I am so great full for the the gift God has given us. Yet again I am completely humbled and broken for the families here who havent been given such wonderful news and results.  

Dear God, please comfort these familes tonight and always. Hold them in your loving arms.  Cover them with overwhelming  peace.  Please easy the pain and suffering of your precious children and rain down a shower of your healing love. Please allow Gavin to continue to progress and recovery. ward off all infections and complications and manage his pain. In your glorious name I pray. Amen.

Thursday, December 13, 2012

Post op. 

Prep pic

Surgery update

Our god is great! Gavin is heading to recovery.his surgery was last and they didn't take him till 1:30. The surgeon placed an 18mm conduit in place of the old one.. The size of conduit they placed may give him adolescence before the next surgery. That size is placed in some adults.  The valve my deteriorate before the conduit needs to be addressed and that maybe done thru the cath.

Gavin's been fast tracked to be off the vent this evening, which is AMAZING. The surgeon said she never had to stop his heart, AMAZING! We will see him around 7. Thank you for your prayers and support! More to come

Wednesday, December 12, 2012

Surgery tomorrow

Gavin is scheduled for surgery at 12:30 on December 13th. He will be checked in at 11:30 and meet with anestesia. They will give him a check up, making sure his lungs are clear. He does have a cold right now but we are expecting surgery to planned. The surgery is booked for 4 hrs and it may not take that long andcould run over. We shall see. We will keep you posted tomorrow. Love to all!

Tuesday, December 4, 2012

Update on an Update

Late time I posted, Gavin was scheduled for surgery November 27th.  Everything was a go, that is until he fractured his arm the night before surgery. We were in Ann Arbor that night at a hotel in preparation for the next morning, with plans of a nice dinner together and swimming fun. We did have a very nice dinner, Gavin was his usual charmer with everyone he sees, the fun stopped there. While changing for the pool, mommy flipped Gavin onto his back on the bed and he arm fell underneath him, fracturing it.  We made our usual trip up to the ER at Mott, only this time we were less than 5 mins away. The splited it and later placed him in his SWEET candycane cast 2 days later. 

His surgery was then scheduled for December 18th.  Yesterday the date was moved up to December 13th. Ortho feels he will be well enough to have surgery and his surgeon wants to make sure he is really not in pain from his elbow, meaning it hasn't completely healed, before surgery. 

His cast comes off Dec 11th and heart surgery is Dec 13th.  We will keep you posted!

Tuesday, October 30, 2012

Surgery coming up

Gavin went in for an early echo appointment Monday October 29th.  His pressure in the conduit and right ventricle to pulmonary artery has increase to 70-75, all since his last appointment in August where it was only 60-65.  The doctor said it is time to move forward with the replacement of the conduit.  Our little munchie is being scheduled for open heart surgery November 26th. 

We can't say this is a shock, we have known this day was coming since June of 2011, that was the purpose of the echos being scheduled every 3 months.  The pressure has been on a constant incline and over the past 2months it has spiked a little. There is no magic number that causes them to say "its surgery time" But if they were following a number plan than 75 is when they would say that it's time to start thinking about surgery.  

Justin and I felt that something wasn't right with Gavin these past few weeks. He has been in and out of the ER a couple of times in October with respitory issues.  Over all he has been ok but just a little out of sorts.  I called the cardiologist last friday because I felt something wasn't right with Gavin and he got us an echo for the following monday, which is when he found that his pressure had spiked and that scheduling the surgery was the next step.  I'm so thankful we didn't wait until his Nov 15 appt. his pressure would be that much worse and scheduling wouldnt be a month in advance but more like weeks. 

The doc wants to give Gavin's system time to rid it's self of whatever respitory issue he is having, the steroids he's on along with the antibiotics. 

So here we go! We are all being really positive, afterall...God is Great! Faith is abundant and hope is overflowing. I have prayed and prayed and prayed and then more praying over the last year that God would just speak to us like he did when Gavin was in heart failure, that when the time had come for something to be done that we would have plenty of time to prepare mentally, financially, scheduling wise, just please God tell us before its to late or before he gets to sick and God is so faithful and true! The overwhelming sick feeling in the pit of my stomach that I was experiencing last friday when I say munchie and how he just looked sick.  I sat with that feeling that just wouldn't go away for anything, led me to calling the cardiologist eventhough Gavin's ER followup was with his peds that afternoon.  Gosh, had I not called........

Now we just have to study up on how to prepare Gavin for this. This is so new to us. Little munchie knows when we pull up to the hospital now, he knows the route, he knows of the docs and the boo boos that sometimes follow.  Please pray that out Gavin is not fearful and that he is peaceful in all the days to come.

Thursday, August 9, 2012

Echo Results 8/2012

Eating a sucker and watching Lion King on the big orange screen!
Gavin's echo appointment went well today. As expected, not a huge change from 3 months ago however there is a consistent pattern of change over the last 6 months. The change is a slight increase of pressure through the conduit and although his doctor doesn't expect a spike in pressure he doesn't expect it to plateau.  Gavin's right ventricle looks beautiful!  We did ask today if there was any damage expected from the severe heart failure of 2011 and Dr said sometime there is damage to the ventricle and it's weakened, also damage to the liver and kidneys, but Gavin is A-OK! Yay God!

The plan is to bring him back in three months for an echo as he has been coming in ever three months since June 2011.  The doctor says if he had to guess, he would expect to have to do "something" aka  replacement of the conduit aka open heart surgery in 6-12 months. Now he DID NOT say Gavin WILL have surgery in 6-12 month that is for mommy and daddy who are extremely anxious about there little guy and who is constantly reminded of how fast he feel apart in April of 2011, Dr is trying to give us as much direct information as possible.  His basis for that statement is coming from  the slight increase over the last 9 months and projecting outward 6-12 months, putting Mr G at a replacement point.

Over all Gavin is in excellent health!  The stents have been a miracle and no surprises in the future, hopefully and faithfully!

God has been so good.  Justin and I have all the faith that when the time comes He will tell us and we go from there.  

One echo appointment down for August, one more to go, Owens'  coming up on the 30th.

Monday, May 7, 2012

Happy Birthday little guy!

Last week was full of milestones and anniversaries. 

Gavin turned "2" on April 29th. We had a birthday party for him at our home this year. What an exciting day! He had a great time playing with family. Gavin had a smile on his face the entire time, you could tell enjoyed every one's company.  Last year during his big 1st birthday party he had a horrible time. He was in heart failure and liver failure and all without us knowing.  As you all know, we too him to Mott the following day and from there he was fixed.  

So of course we were celebrating but also keeping in mind that it could all happen again. He is so healthy right now. Justin and I are constantly looking at him, examining him, wondering if this is normal or that is normal. Asking each other," does he look puffy to you?" 

He is still monitored closely by his cardiologist.  Anticipating his next surgery.  
April 12th was his last echo.  He is such a cooperative little guy, we didn't have to sedate him. He laid there watching the Lion King with mommy while the performed the echo. 

The results were over all okay.  His pressure in his right ventricle increased to 52 which was a 7 point increase from his last echo 3 months prior.  We feel that was pretty significant however the cardiologist is not alarmed.  Dr. Cotts said once the number reaches the 70's than surgery will be in the conversation.  His next appointment is in July, early August.