Echo Results

Gavin is looking out of his patient room from the 11 floor (Peds Cardiac Floor) of the new CS Mott Children's Hospital.

Recap

Thursday, Dec. 22 was Gavin's 3rd echo following his conduit dissection back in April 2011.  Periodically, he is brought it to see how the two stents are holding up in his failed conduit.  They are checking for any movement and structure failure of the stents and the pressure in his right ventricle, since the conduit he has goes from his right ventricle to his pulmonary artery ( RV to PA conduit)
Because of the dissection, it caused an increase in pressure, meaning his RV was working EXTREMELY heard to get his blood through a collapsed conduit which put him in Congestive Heart Failure and Liver Failure.

Results

Over all, the stents have not changed and the pressure has increased slightly from 43ish to about 47ish since his last echo back in July.  Granted, Dr. Cotts does not want to see any change, however, it is not large enough for intervention at this time. THANK GOD for that for so many reasons!!! 

He is being brought back in 4 months for another echo and we will go from there. We ask so many questions that just lead to speculation, for example;

What do the pressures have to make you worried? How long is this reenforced conduit going to last before he has to have it replaced? All of these are at Dr. Cotts best estimate and we have to accepted the fact that we will find out when the time comes. There is no for sure answer. He said he doesn't expect an intervention at our next visit, which we hope not, but we never know. He did say however, should something unexpected happen (which this whole situation was unexpected) the HUGE thing is Gavin is now health where back in May 2010 when he was brought in he was a horrible candidate for heart surgery because of his heart and liver failure. That comment still really bothers me, that he was that sick and we were that close to loosing him. Thank God again his surgeon believed in the Cath docs that the stents would work and it would allow his body to heal.  Oh man, thats so stressful to even think about.

We ask that you please pray for God to allow Gavin to grow bigger and stronger so that when it does come time for Gavin's next open heart surgery, he is big enough to place a really nice sized conduit AND that conduit doesn't dissect so it lasts for many years which could allow his 3rd replacement to be performed through the Cath. Lab.

Echo results

July has been a wonderful month, full of fantastic weather, fun with the family and all in good health. 

 

Gavin had his second echo July 28th and so far so good. There has been no change in the pressure of his right ventricle. The stent  still seems to be doing its job.  Thankfully, they were able to use an anti anxiety medicine rather than fully sedating him, which makes it easier of the little fella. Although, next time I wish they would tell us so we can feed him instead of stopping his intake altogether.  

Echo review~ and other news

Today Gavin had his 2 week follow up from his cath. procedure. He had a groggy echo done, they didn't sedate him, he was way to awake so the just gave him some crazy nasal inhalant to chill him out and it worked.

Good news, wait let me rephrase that... Great news, there were no changes from the echo he received the 2 weeks ago. I'm not clear as to how they measure the pressure from an echo but they got it somehow and the pressure of his right ventricle is 40% which is the same as 2 weeks ago.  He goes back at the end of July for another echo and we should get the clear for our much needed family vacation.

He is definitely in a growth. He measured almost 34 inches long/tall today and still weights 24 lbs. He also started walking yesterday too!! He walked to my beautiful cousin McKenzie, of course, how could he resist her, she is such a doll! He took about 10 steps to her it was so awesome. Even with all of his down time with being sick and whatever other delays there may have been he is doing so well with everything and I just knew he would walk in no time. Although, I am thrilled for him, I am utterly exhausted just thinking about all the joy of following him around, picking him up off the ground, kissing his scraps and bruises and letting him go again and again.

Oh did I mention I probably wont be able to bend over soon enough being that our little Owen is just a growen! ( baby # 2 ) I guess you could call this our official announcement to those that didn't already know. We are expecting our second child late October, Owen Daniel. I am 22 weeks pregnant now and getting bigger by the minute and Gavin is getting faster by second of course. 

We are so glad today was good news. We are hoping the stent continues to do its job for as long as possible and that there are no more surprises in Gavin's future.

No Surgery, just yet!

Gavin was scheduled for his stent procedure and heart surgery (if needed) for June 10th. We took him in for his stent procedure at 7am and by 10:30am we were told the operating room was cancelled and that the cardiologist and surgeon were happy with the stent placement and its effectiveness on his right ventricle pressure so we are holding off on his surgery.  The stent could last anywhere from 6 months to 2 years. I know what a window that leaves us. The surgeon said if Gavin gets 6 months out of it, she will take it! Gavin is going through a huge growth spurt right now (if you have seen him lately you would agree!) and in 6 months she is confident that she could place a good sized conduit which is the main goal to limit the number of surgeries he will have.

Follow Up Cardiologist Appt

Today was Gavin's follow up with his cardiologist. We discussed his surgery date and he had labs done.  His surgery date has been moved from Monday, June 13th, to Friday, June 10th. Apparently, the brainstorming didn't stop with the decision for his surgery that was made a couple of weeks ago.

We're going home!

FINALLY! We are being discharged today.
His lab results are still dropping. His AST are 77 ALT 400'S but we have lab orders to have his blood drawn from outside U of M.  He will be on asprin until his surgery, he has a follow up appointment May 19.

I am so excited to be going home with our little bundle of energy. 

No we didn't paint it during our stay but we thought it was cute! Mom, Dad & Gavin

We will be back soon enough.

Not home yet, but soon we hope.

We didn't get go home today.  He had his echo this morning. We didn't see the images but apparently he doctors didn't get all the information they wanted from that test, so they are going ahead with the CT Scan tomorrow morning.  With the CT they hope to get a clearer image of the pseudo aneurysm and the stent along with the area around the heart and lungs (i guess) The results of the test may move the surgery date up from June 13th.  I don't suspect having to stay in the hospital until that time come.  They are also continuing to watch his liver enzymes. 

Labs. AST in the 280's from 193 yesterday, 2nd day of an increase since we've been here.

         ALT dropped to the 800's since 954 yesterday. BONUS

Weight 10.7 down from 11.1 yesterday. Considering they dry weight they are looking at is the weight he came in at, which he was retaining fluid. So I'm assuming they are going a little under the 11.4. I'm assuming because I can't get a clear answer.  I know they want to keep the fluid off of him but Im not sure why twice a day rather than once when he's already down.

Other than the echo, its been an uneventful day.  I can't speculate when we are going home, since you can tell that has already changed so much since we've been here, which is quite common.

There's that smiling face, we've missed so much!

Mommy and Gavin sat in the courtyard for awhile today.
Yet another beautiful day with my beautiful baby boy!
Daddy went back to work today, we really missed him!

He couldn't be any cutier!
Gavin is laying with the quilt the women's ministry "Quilts of Compassion" dropped
off on Mother's Day. A prayer was said with each stitch and each little knot that was made.
Mommy and Daddy got a purple quilt, Im thinking the purple is for hope, it's so pretty!
I'll be sure to post a pic of it soon.

May 10th

Another great night for Gavin. He has been eating like a champ, it seems as though he hasn't stopped eating since they removed the vent. He is showing his personality more and more.

His liver enzymes, the AST 193 up from 148 his ALT 954 down from 1182. The doc didn't think that was alarming. We will just watch them and if they go up again tomorrow then I think they will look more closely to them. 

Mother's Day

Happy Mother's Day!  Gavin's liver enzymes continue to drop. He is on Lasix once a day. Other than that, today was a day of spending time with my family. 
Gavin gave us a few moments of comedy, letting us all know that he's still a ball of fun and ENERGY! I can not tell you how wonderful it is to see that beautiful smile.
We met a nice couple who attends our church, Metro South. They came to the see us today and set up a skype session for Gavin's dedication.  What a wonderful experience.  We finally dedicated our little baby boy to the Lord. We owe everything to him!  Three people also showed up at Gavin's bedside with prayer blankets, one for Gavin and one for Justin and I. They are so beautiful and soft.  I will post pictures of them soon. 

Tomorrow he is scheduled for an echo and he is to get a CT Scan, time is still to be determined. Most likely, discharge the day after these tests. So we really don't have a definite discharge date, but we are expecting early this week. I can't wait to go home so we can relax and allow our little guy time to relax before his big day in June.  There is no such thing as relaxing in the hospital.

Sat May7th.

Gavin's numbers are great.
Liver AST 1200'S  from 2100's and ALT 220 from 600
His states are great. He is off air. They did put him back on diuretic, his weight went up past his dry weight. to about 11.46, which means he wasn't ready for such an aggressive transition from the diuretic to nothing.
So he is getting it a few times today, overall his swelling has gone down.

He is getting a CTScan and since they don't do them on Sundays, Im assuming he will be here to atleast Monday, possible Tuesday. They are watching his electrolyes, they've been low as well as his phosphates.  So all and all he will be discharged in the next few days. His surgery is schedule for June, we will get a set date upon our discharge.  The surgery is sooner than we all anticipated originally (3-4 years of age) but this is happening for a reason. 

Friday May6th

We've all had a pretty busy day today.  Gavin has been move from PTCU to Moderate Care, it would have been the General floor but there wasn't a bed available. 

His liver enzymes continue to drop significantly! Stopped all diuretics.  Feeding tube is out. He continues to take the bottle.  We will know soon if he is being discharged this weekend.  The plan is to have his surgery scheduled for next month. This will allow Gavin to recover as much as possible before he has his heart surgery. 

He looks so good compared to the last week.  Taking him home is going to be scary but atleast we will all be comfortable.

We will update when we know for sure what is going on. 

May 5th PM Update

Im so sorry I forgot to inform you guys on the liver enzymes earlier.
His AST went from 2283 yesterday to 1359
His ALT went from 3179 yesterday to 2824, docs are pleased with the direction of everything.

He was extubated at 3pm this afternoon and as you can imagine, it was so wonderful to see his beautiful face again.  He is breathing beautifully on his own. They have since taken him off his BP meds and Adevan (spelling). He is receiving a steroid to help prevent his throat from swelling due to the intubation so that medicine does increase his BP but not to alarming levels. He was able to drink from the bottle tonight and he was so excited to see a bottle. He took 6 oz like a champ.

Still no date for his surgery as of yet, there is still debate.
We are very happy with the direction things are going. We should be able to hold him tomorrow.

Our church is having their baby dedication ceremony on Mother's Day. We were scheduled for the 9:30 service but due to is stay at the hospital we are going to miss that. However, we were able to work out skypeing the dedication service from his hospital bed for the 3rd service, We are so happy we aren't going to miss this years ceremony.
Hopefully we will have more good news to share with you tomorrow.

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.  

On with a "New Year"

As you can imagine, the holidays in our house this year were full of excitement. Having Gavin with us made everything all the more special.  The season was full of so many firsts for the little guy.

Off to a great start!

Gavin started the New Year off with a fantastic set of dr's appointments.  January 6th, he met with his cardiologist. What can I say, other than it was sooooo uneventful!!!

Heat Week 2011

Come on! Lets go bowling!

We are hosting our 1st Annual bowling fundraiser during Heart Week 2011, raising funds for research and for the Congenital heart center at Mott Childrens hospital.