Cardio check up

Gavin met with his cardiologist for his surgical follow up and it couldn't have gone better. He has bounced right back from his surgery and it is such a relief that we don't look at him with the haunting thought, "Is his conduit failing right now?" His heart is repaired and we can rest for a few years now. While anything can happen and Gavin is the example of that, the direct danger is gone now and we can now focus on him and how he is developing into this amazing, loving child. He was such a big great big brother today, showing Owen how all the tests are done. He loved that Dumbo was playing while Owen had his echo today. Gavin returns for an echo in six months, a big change from what we are used to. Dr. Tim asked if I was going to be alright not seeing them every few weeks or 3 months. We will be alright, although they are all awesome up there, our family would like to plan fun outings rather than our afternoons around echos. While this seems like a lot to go through, I am always reminded that we have it extremely easy compared to what other families and little children are going through. Gavin has healed really well from his surgery and we are all looking forward to a few months off from the doctors office. Thank you all so much for your continued prayers and support with Gavin and his journey.

2 Week post op

Happy New Year! Gavin had his surgery a little over 2 weeks ago and it's really hard to believe that is behind us now. No longer do we have to look at him wondering if his stents are holding up, if he's going to through a blood clot, if he's in congestive heart failure. He had his 2 week post op follow up January 2nd, both his chest x-ray and his incision both look great. His chest tube stitches came out December 24th, a few days later than expected due to the fact that they didn't look ready. All and all, Gavin has been a trooper. He still complains of pain from time to time, he is at least at the age where he can tell us he is uncomfortable. He still makes us nervous, that's for sure and surgery or no surgery I'm certain that is a fact of parenthood. His next cardio appointment is January 30th. Time will tell when he needs another surgery, but we have been given hopes that it may not occur until adolescents. We did have to take him to Mott on New Year's Eve/Day. Over the course of a week, he had been breaking out in hives/welts/severe rashes and I thought it may have been the Motrin or pain meds but out of nowhere they developed but seemed to go away with time or the Benadryl. Well New Year's Eve, his feet swelled up so bad they were completely stiff, red, hard as bricks. Weird, I know. They said it was a virus, which every parent loved to hear, it's viral and must run it's course, with the help of allergy medicine to help with the random welts and swelling. We are truly blessed and fortunate to share such great news and a wonderful recovery story, so many times it doesn't turn out that way. We thank you for your continued prayers and support. Love the Aikey's

Discharged

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!

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.

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.

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
Xoxo

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 go.as 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!

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!

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.

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.