tag:blogger.com,1999:blog-22230797084862248122024-03-14T02:18:06.450-04:00Gavin's JourneyGavin was born with a complex heart defect called, Truncus Arteriosus. This is Gavin's story from birth on, his good days, great days and not very healthy days too. Here we are able to tell his story and our family's experience to a large audience and while keeping family and friends updated we hope to extend hope through our faith to family's facing similar circumstances.The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.comBlogger64125tag:blogger.com,1999:blog-2223079708486224812.post-20135428453792669312013-02-04T21:35:00.001-05:002013-02-04T21:35:48.703-05:00Cardio 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-52659596437735304322013-01-04T16:12:00.002-05:002013-01-04T16:12:52.941-05:002 Week post opHappy 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-81640462243287411152012-12-17T16:17:00.001-05:002012-12-17T16:18:30.509-05:00DischargedWe 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!
The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-69209302588219328462012-12-15T22:34:00.000-05:002012-12-15T22:34:05.512-05:00One less tubeGavin 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 morningThe Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-48713213603796984792012-12-14T17:29:00.000-05:002012-12-15T08:08:08.764-05:00Lines 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.
HeThe Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-44119648154331710322012-12-14T01:07:00.001-05:002012-12-14T01:07:21.734-05:00Moving forwardGavin 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-82292627146969459812012-12-13T23:29:00.001-05:002012-12-14T01:16:53.957-05:00
Post op.
The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-64117005800092275272012-12-13T21:39:00.001-05:002012-12-13T23:30:22.827-05:00Prep picThe Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-36286470417357837092012-12-13T17:53:00.001-05:002012-12-14T01:22:43.268-05:00Surgery updateOur 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-9208383585840847942012-12-12T21:28:00.001-05:002012-12-12T21:28:31.415-05:00Surgery tomorrowGavin 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!
The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-23918331728895284902012-12-04T09:06:00.003-05:002012-12-04T09:06:54.099-05:00Update 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-7195123491027386812012-10-30T12:10:00.000-04:002012-10-30T12:13:32.274-04:00Surgery 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-80579545190663833642012-08-09T21:49:00.001-04:002012-08-09T21:55:42.865-04:00Echo 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. The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-40418550945218411352012-05-07T11:59:00.000-04:002012-05-07T11:59:18.708-04:00Happy 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-3516112744147882632011-12-23T07:38:00.000-05:002011-12-23T07:38:33.816-05:00Echo Results
Gavin is looking out of his patient room from the 11 floor (Peds Cardiac Floor) of the new CS Mott Children's Hospital.
RecapThursday, 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-10088029653939165752011-07-31T01:27:00.002-04:002011-08-03T23:27:17.528-04:00Echo resultsJuly 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com1tag:blogger.com,1999:blog-2223079708486224812.post-8480165333778612562011-06-23T22:46:00.000-04:002011-06-23T22:46:12.655-04:00Echo review~ and other newsToday 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com1tag:blogger.com,1999:blog-2223079708486224812.post-9727715593372674962011-06-13T09:15:00.002-04:002011-06-13T09:18:22.019-04:00No 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-36894564424868361912011-05-19T23:25:00.001-04:002011-06-13T09:18:43.270-04:00Follow Up Cardiologist ApptToday 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.
The surgical team has been adamant with putting off surgery as long as possible. They don't likeThe Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com2tag:blogger.com,1999:blog-2223079708486224812.post-20483170657210615892011-05-12T15:27:00.000-04:002011-05-13T16:28:19.955-04:00We'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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-57880041536509010032011-05-10T20:44:00.001-04:002011-05-10T20:48:17.200-04:00Not 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 theThe Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-14872805756212916072011-05-09T23:25:00.001-04:002011-05-09T23:26:52.683-04:00There'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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com1tag:blogger.com,1999:blog-2223079708486224812.post-71614461230656632372011-05-09T14:18:00.001-04:002011-06-13T09:19:30.166-04:00May 10thAnother 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-3290313129591022982011-05-08T23:08:00.001-04:002011-05-08T23:14:12.117-04:00Mother's DayHappy 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com0tag:blogger.com,1999:blog-2223079708486224812.post-52631816908508930782011-05-07T14:19:00.000-04:002011-05-07T14:19:10.398-04:00Sat 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 The Aikeyshttp://www.blogger.com/profile/13552624463736136534noreply@blogger.com1