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.

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.

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. 

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.