Our Journey

On out way home!

2010-04-06T11:31:00.000-05:00

I have been pretty hesitant to write that we have been out of ICU for about a week, and we can come home! He went to breathing on his own since Friday, and has done awesome!!
Everett is doing really good! He will have a feeding tube for a little while.... But thats ok...

So after 70 days of being down here, we are going to be released!!!
Hope to see everyone soon!

Much love

Yippie!

2010-03-25T13:16:00.000-05:00

Greetings Everyone!

Everett is doing 100% better than ever! The VSD closure helped him out so very much and we are soooo pleased and exited with his progress. We still arent out of the woods completly, we still have to get him eating by mouth and just keep on loving him!

Thanks to all for your continued support. We are looking to be out of ICU tomorrow!!! Will keep you up to date on when we are fixing to be back in da UP!!!

Hip Hip Horray!

2010-03-09T10:04:00.000-06:00

OK. Don't want to get to exited, but Everett's surgery went really, really well yesterday. And we have hopes that this did the trick to heal his lungs. He has been really squirmy and they are having to give him more sedation. Its a double edged happiness to see him more lively, because he isn't really focused, or comfortable, but he is a fighter, and that is nice to see. I apologize for the last post, the doctors have been doing an amazing job, and we are endlessly thankfull to have such a great team working with Everett and us. So. Will keep you posted on the next big steps, again he will have to get off of the ventilator, and ween him down off of the sedation. The weather is making this transition a bit easier. With 50 degrees and sunny, there is a lightness in our step. Peace love and joy to all!

A New Day

2010-03-05T09:40:00.001-06:00

Well it has been pretty sunny down here... Which makes everything nice and bright! Everett is heading in for surgery on Monday. Dr. Bove is going to patch up a VSD(shunt, leak between his right and left ventricles) that has been creating problems for him in regards to his breating. There has been to much blood flow to his lungs, and this should fix that!! So we are remaining hopefull that this will help him!! Will keep you posted as to how things are going next week... I know this is what is best for him, although this is the toughest thing I have ever witnessed in my life.... He will get better!

Update

2010-02-26T19:29:00.000-06:00

So things not really going the way we want. He is going in to have another heart catheterization done Mon-Tues to help decide on a new surgical plan as he is still in congestive heart failure because he has too much blood going to his pulmanory artery and then going to his lungs, which makes him breathe too fast and work very hard to breathe off the CO2 in the extra blood flowing through his lungs. So we should have a plan Monday evening- Tuesday morning to fix some remaining issues, hopefully the last plan we'll need.

Off the VENT!!!

2010-02-20T21:21:00.000-06:00

THANK YOU EVERYONE FOR YOUR AMAZING SUPPORT AND ABUNDANT GENEROSITY!!!
Everett had a miraculas day today! He coughed early this morning and his vent tube came right out! A sure sign that he was no longer in need of the support. It was somewhat alarming to recieve the phone call this morning that he had ex-tubated himself, and was a bit startled. But a blessing none the less.... His legs are kicking, and his arms are reaching to now pull out his oxygen tubes.Those will need to stay in for another day or so, while he is still in ICU. We will hopefully be out of ICU this next week! We are so incredibly relieved! He has come so far and we now can feel our trip home will be soon!! Much love and a huge gracious thank you for all of your support during the last few weeks!
The spagetti dinner was an unpresidented success thanks to all the beloved friends and family!! Everett could feel the loving energy each of you sent his way!!

Patience is A virtue

2010-02-13T17:44:00.000-06:00

Everett has been off of the ECMO (life support) machine for 3 days, since Wednesday! Wuoo Whoooo!! What a relief and sure sign that the surgery went as hoped. He is still very sleepily sedated. They started feeding him breastmilk through a feeding tube yesterday. Everetts lungs need to open up a bit more before he can trial off of the ventilator. He has been though so much. During surgery the lungs got quite a beating, the surgeons had to move them out of the way to get to the heart. Fluid built up in the lungs, and they are suctioning quite a bit of blood and mucus out still, as well, he spiked a fever thursay morning early, which means he is fighting off a little flu bug.... Ahhh. The flu is generally occurs from being on the ventilator, little bacteria can grow, and from being on ECMO, his lungs didnt do much work for a week. So that basicly set his healing process back a week. The next big step is getting of the Vent! We are hoping he will be off by mid week, next week. Chris and I are hanging in there. Its been a true test of patience and acceptance. We do feel blessed that we see the sun shining through the clouds!

Post-Surgery

2010-02-04T03:43:00.000-06:00

Everette Surgery was a sucess, It was a long day for Everyone. He did have a post-op stormy course which Dr. Bove did warn us about. He said the first 24 hours after surgery are very critical. He said Everette may get sicker before he gets better. He did come back up to the Pediatric intensive care unit (PICU) on the ECMO machine which alot of children do after this type of surgery . The ECMO machine takes over the work of the heart and the lungs, which means this gives his heart time to rest . His blood flow is bypassed at this time from his heart to let it rest,,and this is where the ECMO machine comes in and flows the blood through the machine and the rest of his body . He seems to be doing much , much better at this posting at 4:30am . He has a heart catherization scheduled for 7:00 am this morning to look at the all the Arteries and Veins , where the where was done yesterday just to make sure everything is in place and ready for his blood flow. His Pacemaker is keeping the heart beating just fine even though there is no flow through it.
Dr. Bove and the whole Cardiac team have very positive thoughts that Everette will be off of the ECMO machine within a few days and pumping blood on his own.

Surgery Date

2010-02-02T13:08:00.000-06:00

Everette's Surgery is scheduled for tommorrow 2/3/10 at 7:30 am they are going to do what is called a double switch operation, which is quite complex of a surgery. He is also going to have a pacemaker placed at this time. They surgery itself is suppose to be about 4 hours long the doctor's said . There is a problem with a Tricuspid valve that is also leaking that the Doctor's hope the surgery will relieve pressure on that valve so it is not quite so bad.

new news

2010-01-28T17:49:00.001-06:00

We just found out that Everetts' surgon Dr. Bove is going to be going over all the data he has on Ev and give us his recomendation for the specifics of the sugery on monday. This is a very tough decision as some things have changed recently, and it is not as cut and dry as we had hoped. I believe that he will likely recomend that we do; the doubble switch, a small "helper" fix on the tricuspid valve, and a pace maker, but that is only my thought on what he may want to do. We wont know for sure until monday. Thank you all who are reading this and keeping us in your thoughts and prayers, we can use all the good energy we can get from the the U.P. Kora and I are doing all we can to keep it together and it helps so much to know that so many people are pullin for our little man. Thank you all!

working on more pics, info update tues morn

2010-01-25T00:10:00.000-06:00

The Plan...

2010-01-24T18:23:00.000-06:00

Here we are in Ann Arbor, Grandmas Terri, And Kay, down here to help Kora, Everette and myself. So far we have had relatively good news, as his 2 VSD's have nearly closed up on their own. The more critical situations with the double switch, pulmonary band adjustment, and probably pace maker will be decided on Monday evening after Everette's heart catheter is complete. I will update this page Tuesday morning after the docs do their rounds and we decide on the specific course of action. Thanks to all of you out there that have supported us through this incredibly tough time. Your help and support have made this devistating situation more manageable for Everette, Kora, and myself. Thank you sooooo much!

Here is a link for you to read on more specifically what Everette has been diagnosed with:
http://www.med.umich.edu/mott/chc/patient_con_cor.html