Thursday AM Update

 
He looks GREAT! His weight is down to 11.6k from his dry weight of 11.4 (25.5lb-25.1lb) so they backed of Lasix(diuretic) from every 6hrs to every 12. They never started the second diuretic. 


He is taking 1oz/hr by continueous feed. They will try PO feeding(mouth feeding) after he is extubated, waiting  4 hrs after extubation to feed him, just incase they have to reintubate.  

He's been sprinting on the vent this morning and they are going to sprint again at 1pm and if his blood gases are good they will extubate around 3pm. They have to wait 6 hours after his last feed, so they stopped his feed this morning at 9:30am while we were back there.  

Decreased his blood pressure med. Miliranone, may remove it after extubation.

White cell count down to 6.4

Abdomen ultrasound later today to check for possible clots, they are always possible after all the internal trama he has experienced. 

They will check to see how his blood clotting, he's been given plasma because his blood has been thin.

Removing his adevan after his extubation.  

All and all hie looks fantastic! His swelling is down significantly.  You can see creases in his eye lids. :)
We are going to have a good day, I can feel it :)
xoxo's

Wednesday Night Update

Our little rockstar is practically breathing on his own. He is still vented but during the whining process he has shown great progress, they have turned it down and he is doing well. The plan is to start whining in the early morning hours. Whining consists of turning it all the way down, allowing him to breath on his own for an hour, should he skip a couple of breaths or not respond very well anytime during that hour, the machine will take over or fill in the gaps for him.  All goes well, he will be extubated tomorrow, FINGERS CROSSED. 

He is moving quite a bit, which is good and scary at the same time. Man oh man we don't need him to knock out the tube. His arms are restrained a little to try to keep that from happening. He responds very well to us when we are talking and touching him, so it's best that we back off a little bit. He just moves to much.  A few times we saw him tonight it looked as though he had tears pooling in the corner of his eyes. Ofcourse they were closed but it was so sad. Sometimes he whinces an a tear look alike comes out. They are trying to reasure me that it's not tears but drainage. I sure hope its not, that simply breaks our heart to think of such a thing as him being in pain an not being able to let us know or respond. :( I guess his stats would indicates some discomfort.

Doctors rounds are between 7 and 9am each morning so we will have more updates after them.
Thank you to all of you for your concerns and your prayers!

Please continue to pray for his recovery but also please extend a prayer to all of the children an families in that ward.  There is so much hurt and sorrow walking those halls it can be so depressing and it sometimes make us feel guilty for having a happy moment while so many are hurting at that very same moment. 

Update 3

Last night was uneventful, nothing scary happened.   So as I always say, Uneventful is good! 

He still has excess water weight, about 2 lbs more than his dry weight.  His eyes are less swollen and his color is much better.  He is on Milredone for his blood pressure and to help his right ventricle rest.
Liver enzymes DROPPED! From 4500 to about 2000, int he opposite (and right) direction that the doc anticipated.  He is still intubated and will be for a couple of days. They have lowered is sedation because they want him to be a little responsive, but obviously not enough for him to mess with everything. They also want to observe his neurological responses for possible damage, which is always a possibility.   They may start weening him from the intubation and start sprinting tomorrow, which mean that for short periods, he will be breathing on his own. little by little.  My little chubba wabba may start to eat today too, however through a pump feet/ NG tube.  We are taking a teaspoon every hour and slowly increasing it. On Lasix/ diaretic every 6 hours now, they want to get the water off.  They are also adding another diuretic for help with the fluid.  His lung from yesterday looks good. I guess it has to perk up a bit.  They are going to try to clear his lungs of any fluid and keep them clear to prevent pneumonia.  White blood count is 7.6, i don't know what that means but I wrote it down so I thought I would type it out for ya. 

All and all, today is a day of rest, watching him, allowing is body to heal.

Update 2 Post Stent

Great News! They tapped into the fluid that was trapped around his lungs and they pulled out 25cc (almost 1 oz) of clear fluid and that was all. The right lung popped up.  There is no need for a chest tube!!!!!!! Thank you Jesus! One less thing Gavin has to be put through, less chance of infection.  I couldn't be happier.

Our little man is very puffy and is expected to be bigger tomorrow.  Discolored and intubated (not breathing for himself), sedated, but no chest tube. :)

There is always a reason to smile!

Update1 Post Cath

He had is his Echo at 2:30 and came out at 5pm. The doctors found that his conduit that was placed last year had split inside, creating a flap that was creating a pseudo aneurysm. The flap was creating pressure and a very tight channel for the blood to flow into the pulmonary artery.  They successfully placed a stent pushing the flap back to the wall of the conduit to allow the blood to flow properly and the pressure and stress on the Right Ventricle.  The stent also allows the blood to flow through the aneurysm into the conduit if needed. The stent is a very temporary solution to Gavin's heart problem. 

Along with his Right Ventricle Heat Failure, he is in Acute Liver Failure, due to his RV not working properly.  His liver functions were 4500 last night (normal is 20-40) and are expected to be higher tomorrow just because that's how the liver works. 

Having open heart surgery with any heart failure leads to a more difficult recovery. Having open heart surgery while in liver failure is not a good way to go into surgery either.  Both of which make for a very difficult recovery. 

He currently is intubated from the stent procedure.  He will need a chest tube tonight because they found fluid around the lungs, it may be blood so they are taking a sample out to see what they are dealing with.  The fluid whatever it may be is causing the right lung to collapse. 

If we are talking numbers here. Pressure in the heart after the stent has dropped about 50% estimating, point is they docs are optimistic that the stent is doing what it should. Now we just have to weight for his liver to start acting right. He will be sedated for some time, remaining intubated.

I must say that seeing my little man all hooked up like this brings back so many strong emotions and new emotions too.  The best way to describe him is to picture him as he was a newborn all hooked up and picture him 4 times bigger with all the same tubes. 

We are asking for prayers that they successfully drain the fluid and that he is not leaking blood into that area.  We ask that you pray his liver enzymes take a dramatic drop in numbers and it rebounds beautifully soon!
Also, pray that his right ventricle relaxes and recovers so that it too is strong enough for surgery, when ever that may be. Lastly (well all that I can think of right now) is PRAY that he does not contract ANY infections anywhere in his body! Please that is sooo important.

"Could be worse"

Powered up my ipod today for the 1st time in so long and the 1st song to come on was the very beginning of "Our God" How fitting, "Our God is greater, Our God is stronger, God you are HIGHER than any other, Our God is HEALER AWESOME AND POWER Our God!"


 
My wonderful friend Megan sent me a few passages from her devotion today:
our sovereign Lord, my confidence since my youth~ Psalms 71:5
so don't fear, for I am with you, do not be dismayed, for I am your God. ~ Isaiah 41:10
Blessed is the man who trusts in the Lord, whose confidence is in him ~ Jeremiah 17:7
Trust in him at all times, O people; pour out your hearts to him, for God is your refuge! Psalms 62:8
May the God of hope fill you with joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit ! Romans 15:13

I just updated Gavin's blog Sunday night after his 1st birthday party, kind of kicking myself for slacking a bit in the updating however he has been doing so great there really wasn't news to tell. Well all things changed...

He had been under the weather since his birthday Friday, April 29th. The previous week he had become picking eating and sleeping often, sleeping in until 10-11,( you know I wasn't complaining) Waking up with puffy eyes, but over all happy go lucky Gavin. Sunday was his bday party. Needless to say everyone partied but him. He was so pitiful, he slept the entire time. We took him the a local ER, they said he was slightly dehydrated. He had plenty to drink Saturday and Sunday, yet no urination. They weren't alarmed. (DON'T ASK MY WHY) Cold hands and feet, clammy skin, sweaty, pale and SLEEPY. Discharged Monday morning around 2:30am we went home and went to bed.



Monday afternoon, I thought that nothing added up. No fever, no pee, no crying, no eating, no dirty diapers, just sleep and sweat and cold and no fever. "What is wrong with him?" I asked, while staring at him on the floor, looking so pitiful, sleeping still. Something dawned on me, it was like a light bulb went off. I heard, "He has Congestive Heart Failure" No, seriously? 1 year after his surgery? His anniversary is this Friday, can that be possible. I read my handbook given to us by U of M, it was clear as could be. Gavin was a checklist of symptoms. He had 95% of the symptoms. Daddy and I took him to U of M ER.

I can not explain the comfort and happiness we felt being there. Yes, it was sad and we were scared but so relieved to be here where we knew we would get answers and he would get the care he needed.
The little guy was retaining fluid, yet he was intravascular dehydrated. They gave him a chest xray and stomach xray( to check for obstruction of the bowl ), tired to take blood labs but he was so dehydrated and swollen that his vein were disappearing, once poked here or there he wasn't giving up any blood. I've never seen nurses struggle so much to get drops of blood from a someone. His poor little limbs, hands and feet were so puffy/swollen.  He came back and they gave him an echo. Gavin layed there as still as can be for an 80min echo. There was the answer. He had stenosis( narrowing) of the pulmonary arteries, his Right ventricle was dilated, not pumping well at all, working extremely hard.



Echo in the U of M ER. Answers to so many questions. A 12month old does not sit stil for a min. He didnt move for over an hour while they looked at his heart. We are so proud of you Gavin.

After  evaluation a heart cath is ordered for sometime this afternoon (Tuesday) to look at the conduit that is now to narrow/ tight for his body. This is not a defect of the conduit, it's just how is body has healed.  There is obstruction in the bottom of the conduit, the valve and it happens. They are hoping by the cath, that a balloon or stint will open the narrowing and to investigate the pulmonary arteries and take pressure readings and intervine if needed there.

Surgery is definitely in his near future. Closer than we all had prepared for.  The news was scary and it still. I immediately fell relieved that we were here. Some people don't believe that God can talk to you. I hasn't happened to my allot but I can say that I am confident that he spoke to me yesterday. No, it's not rumbling voice that I hear telling me what's wrong with my son, in a deep voice, but more like a clear statement, direct and to the point. After asking to myself, "What is wrong with him?" It clicked, I clearly heard, He has Congestive Heart Failure. Complete clairity. No hesitation, no questions. just answers. I got my handbook, read the symptoms, called U of M, made plans to have a cardiac nurse call back, I immediately started packing, with out thinking. We decided we just need to go, they are going to send us up there anyway and even if they said to just see, we were still driving out there regardless, so here we arel. Waiting for news weather or not he's going to need surgery this week ?

I thank God that we came and he received these test. His condition since we've been here less than 24 hrs has rapidly decreased. God led us here! His Will, will be done. 

Is it wrong to pray that his "Will" is to heal and allow us to keep Gavin longer? It feels like it's wrong. Our faith is in him, Our God, Our Healer.

Our baby boy is "1"

Gavin turned "1" on April 29th. Friday was a day of recollection and I am sure this Friday, May 6th, marking 1 year from his first open heart surgery will be the same.  I'm sure most parents can relate, the day he was born was one of the happiest and scariest times of our lives. What a mix of emotions that day and days that followed brought us.  I still don't think we have processed it all. At times, thinking of everything feels quite overwhelming. The first month of Gavin's was a whirlwind of emotions, crazy emotions.

This year has been simply amazing in the recovery, growth and development of Gavin. He is right on key with his milestones. His weight and height are right in line with where they are suppose to be. Needless to say, Gavin has completely made up for the time he wouldn't eat. This little boy eats everything! He is extremely healthy, active and very bright. He currently weights 24 lbs and is 30 inches tall. Although he hasn't taken his first steps, we can tell they are just around the corner. Gavin has been pulling himself up and standing "look mom no hanging" for the past 2 weeks. We will be chasing after our little daredevil soon enough. 

Gavin has his 1 year sedated echo scheduled for June 9th. He never did have a 4th swallow study. We have however, taken it upon ourselves to greatly reduce the thicker we use to, well nothing. He seems to be doing really well with the normal consistency of his formula, juice and food. 

Happy Birthday to our sweet baby boy! We love you so much and we couldn't be more proud of how far you've come.