Wednesday, April 22, 2009

History.....

I have been asked recently by a few moms that are new to our blog if I would go over the history of Rhett and what he has been through thus far. I know many of you are long time readers and have been through this with us for the long haul, so just bare with me here okay?

Sure. Thanks.

Anyhow. Rhett came into the world with a bang on Oct 7, 2005. He fell out into the nurses arms and then my OB came in 5 min later. He finished delivering the placenta then went down to the ER and had a heart attack.

Seriously. I couldn't make this stuff up.

Rhett was a tiny little thing complete with Chicken Legs and all. He was 34 weeks gestation, and weighed 4lbs 14 oz. They brought him to me and as he layed in my arms tasting the air with his teeny tongue, I looked into his cute little almond shaped eyes, and knew that he had Down syndrome.

After holding him for a bit, I had a deep sense that something was wrong so I quickly handed him off to the nurse to take him down and get his bath. Andy went with him and came in around 2 am to report that nothing was wrong. However after he left Rhett started having trouble. (I figure he was just showing off for dad.)

They took him up to the NICU and started running tests on him. They found that he had an issue with his blood where he was making too many red blood cells and his blood was too thick. It was like pumping oil through his body. They had to go in and slowly take the blood out of his body, then thin it out with saline solution, and then put the thinner blood back in.

His EKG also showed that the right side of his heart was enlarged.

Long NICU story short, they discovered that not only did he have a heart condition that would require open heart surgery, but he also did indeed have Down syndrome.

No our world wasn't crushed or anything. He was too flippin cute for us not to be totally and utterly head over heels in love with him.

They told us all the bad things that could happen, Blah blah blah. He won't eat, he will struggle developmentally.

BUT they didn't tell us how awesome he would be and how much of a fighter/tornado/crazy and wild toddler he would be.

Funny how they leave out the good stuff.

Anyhow, at 4 months old Rhett had open heart surgery. He was still a peanut. Only 7lbs, and he had a rough go with the surgery. Rhett likes to write his only rules, and I think he has some little creed somewhere that states that he has to give us a heart attack at least once a year, if not more.

He actually ended up with 3 different heart defects that they didn't find out until they had him opened up in the operating room. He had a complete balanced AV Canal, PDA, and Pulmonary Stenosis. They fixed him all up as best they could, but he still struggles with his Mitral valve leaking. They weren't able to reconstruct it as well as they would have liked, so he may end up with an artificial valve in the future.

Rhett put a twist to the end of the surgery by fighting them to stay on the heart lung bypass machine. But they finally convinced him to come off of it if they promised to leave his chest open for a few days.

That would be one of those, give mom and dad a heart attack incidents.

He was in the PICU for about a month or so and then we were able to bring him home.

Things went well for the first year after his heart surgery. He was able to come off of oxygen during the day, and finally put some chunk on his little body.

Funny how a working heart will do that.

Then in January of 2007 he got really sick. We took him up to PCMC, and they found that he had a hernia where his intestines went up into his chest.

Awesome.

We took him in for surgery and he did well. They tucked him into the ICU for the night for observation and the next day we had a major incident that set us back for a while. A really long while.

But I can't talk about that for certain reasons, just know that it was a horrible incident and has affected our lives from that point on.

The rest of that year was filled with all sorts of crap from all different directions, not only health wise, but emotionally as well.

We spent time in PCMC off and on through out the year for various health issues. Mostly due to issues with his lungs due to Pulmonary Hypertension and problems resulting from the incident earlier in the year.

So 2008 came and it was to be a year filled with more hospital stays and surgeries than ever before.

In March he had surgery on his airway to take out his tonsils, part of his uvula, reconstruct his palate, and lift up some throat muscles. This surgery affected his ability to swallow thus starting our pathway to NG and G-tubes.

He was hospitalized alot throughout March, April, and May of that year. We were there more than not. In June they did a Nissen on him to stop him from refluxing. A Nissen is where they take his stomach and wrap it around his esophagus so that he can't bring anything up. Which means he can't even throw up when he is sick anymore. They also put in a g-tube through his stomach so that we could feed him. Up to this point, he had had an NG tube which went through his nose and down into his stomach.

Bet you're thinking wow!! That's enough already huh?

Well during all this time we also found out that Rhett had a tethered spinal cord. Which meant that in August he had back surgery.

He has been in the hospital off and on since then for various reasons mostly aspiration pneumonia.

We joke around here that he aspirates on air. If you know him it's true.

The kid has more scars on him from holes that they have put in him than any other kid I know.

We often tell people that if you were to put a bunch of water in him he would leak like a sponge.

I have had a crash course in medical training. I know all about lab results what is normal what isn't, I can place an NG and a G-tube on my own with no help. I routinely monitor oxygen saturation levels, and hook up feeds. I figure how many calories Rhett takes in by mouth each day, then give him the rest of what he needs at night through his G-tube. We deal with oxygen on a nightly, and sometimes daily basis. We have a suction machine, and I do constant suctioning on him, and sometimes deep suction depending on if he is sick or not. I give nebulizer treatments, and I have done chest therapy to break things up in his lungs. We do CPAP at night, although he has had sinus issues the last month, so he hasn't been on that.

I am sure there are many other things I have done, or will do in the future. It's become our new normal. I don't even think twice about it anymore.

I'll admit that it's been hard trying to balance all of our kids, and Rhett's medical needs. But we have done it, and we seem to come out on top.

Finances are a mess, and have been for a while. We lost our 5 bedroom huge home, and now are squished into a tiny 3 bedroom apartment. It just means that we can love each other more now that we are all on top of each other.

See. I know how to be positive.

I could go on and on about everything that has happened, but it would be a book.

Maybe I should write a book.

But I wouldn't change anything about our lives. We are stronger people because of the trials that we have been through. Our relationship with our kids, and mine and Andy's marriage has been strengthened beyond belief.

We appreciate the little things in life.

We have learned to laugh at things.

Like when mom gives Rhett a bad haircut and Rhett ends up with a Fo'Hawk.

That I think is pretty dang cute on him if I do say so myself.




Oh, and the no teeth thing? That's from previous head banging incidents.

Rhett thinks teeth are way over rated.

Nutt Ball.

12 comments:

Ally in Wonderland said...

Rhett's right! Teeth are overrated when he can chow down through a G-tube!!!!

Plus, this way he one-upped his own cuteness factor with that toothless grin. My question is, what is he going to do next????

Larky Lady said...

Wow, how much can a kid go through? I know you feel lucky to have him, but he is lucky to have you too! You seem like an awesome mother. That must have been so hard with all the medical issues.

Lund7 said...

Wow! That little guy has been through more than anyone his age should have to!! You must be some amazing parents to stay strong through it all! I haven't been following your blog for long so I appreciate the re-cap of his health issues. Should make us all appreciate our healthy children more. My little guy with DS has been pretty healthy and we feel very blessed. Stop by my blog sometime! Blessings...

Lynda
http://lund7.blogspot.com

Jake & Stephanie Ellinger said...

I LOVE the fohawk! Could that little guy get any cuter?

Anonymous said...

Wow! I have read your blog for awhile now, and I think that your family is amazing! I enjoy your updates and Rhett is absolutely adorable (as are the rest of the family)! Thank you for sharing your story.

Anonymous said...

Awesome kids, awesome mom, and awesome dad! :)You guys have a great story.

T.

Anonymous said...

Pam... you are an inspiration, it brings things into perspective..with all that you and your family have been thru, you are positive and strong. I have never met you, but I stand in awe of your strenght.

Susie

little.birdy said...

I adore your family's spirit. Thank you so much for sharing!

Michelle said...

Pam, I have a special love for your family. You were one of the first blogs I followed shortly after Preslie was born...you have opened my eyes to so much...thankyou. It was good to hear Rhetts story, he is such a sweet boy...thank you for sharing. I pray you guys will continue to be blessed despite your struggles and that you will always have peace and love. We have learned some pretty hard lessons this past year, but we are all so much better for each one of them. Sure I would LOVE to have more then one bathroom and 2 bedrooms for the 5 of us, but like you said we love each other even more, except when the children run screaming through the living room again and again and again...:)
I do have a question for you, if you don't mind me asking. How did you know about Rhetts tethered spine? Preslie has the deep crease that far surpasses her bum and goes up her back an inch or 2. I looked up sacral dimples and one photo looked just like hers...her PT is checking into it, but thought you might have some insight??
love to your family...always!

MJMILLS said...

So, about the book!?!??!?! heehee

Avenues of Awareness said...

I really enjoyed stumbling onto your blog today. Thanks for the history.

Good luck with Rhett.

I was curious, when they worked with his blood in the NICU was he on ECMO? Or was it a different type of pump.

L.Bird said...

I happened upon you pages and ended here.

I heard once that when a NICU parent watches their child run around the bases they smile and think, "You little stinker - you scared us to death." This is my wish for you.

Oh, and yes - please do write that book so the rest of us can grow strong.

Linda Bird, Grandmother of a NICU graduate.

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