Oil Slick

I tried. Really, I did! I still ended up looking like crap on a cracker.

When Gus was in the hospital for all of his different extended stays, I really tried to pull myself together and not look so much like a slug so the doctors and nurses would not be frightened. I mean really, you know that these fine folks must have been scared when they came into the room with me sitting in the recliner looking like a hobo who hasn’t washed her hair in seven years. Why not wash my hair, you ask? Well, those of you who have had a child in the hospital know that there are not always people available to sit with your child while you jump into the shower. No, friends…there are times that you just tough it out until help arrives and sometimes that can take awhile! Lol!

Pete brought me some waterless shampoo that smelled completely wonderful…but didn’t work at all. In fact, it created more trauma on top of my head. Not pretty…even the nurses agreed that it wasn’t a “good thing”! After that I just gave up. Apparently I gave up too soon though because I had not tried the shampoo that you spray on…I think that would have been much better since it would be easier to control. I think I might have been a little heavy-handed with the other stuff.

Just so you know, I was able to master the quick “in-and-out” shower and was able to pull this feat off when one of the nurses would be in taking vitals. I’m talking super-sonic speed!! Lol!!

The spray on shampoo still would have been nice for touch –ups though. I think it would be great to have a bottle of two for when Pete and I are sailing around the Virgin Islands..you know a lot of people braid their hair so that it doesn’t need to be washed but that’s still kind of gross, right? With dry shampoo you could have clean hair and cool braids….and what about dreadlocks? Is this something you could use with dreadlocks?

I’m thinking it would also be nice to have a bottle for when my entire family has used up all the hot water…right before church. Yes…a bottle would be nice!

Superbug MRSA Shuts Down Schools

So, folks, I just found out that there was a school shut down in Virginia because a student has died due to MRSA. Do you all know what this is?? This is the “staph infection” that a lot of people think is only rampant in hospitals. Apparently, this Superbug is in our schools too!

When Gus was around, we had to be super careful about not catching infections of any type. It was our goal to keep Gus germ-free as long as we could in order for him to be able to get a transplant when the time came. We avoided public places like Walmart and the grocery stores. Church was out of the question because everyone would have wanted to hold him and though these people would never want to harm Gus, they still could have made him sick. Since we had to go to these stores, we were very careful when we came home---washing our hands, showering, etc.

One place we could not avoid though was the hospital. Not only were we there for central line infections and line repairs, but Pete also was just starting the RN program and he was employed at the hospital as a CNA. At work, he would don two, sometimes three, layers of gowns and gloves when he had to work with a patient infected with MRSA. When he came home, his shoes stayed outside and he went immediately to the shower. His clothes were thrown out on the back deck to be washed. We used gloves to pick them up and put them into the washer. Sound like we were over reacting to MRSA?? Nope, it was, and still is, that serious, folks.

Our fear was that Gus would become infected with MRSA through contact with the hospital or through people who work at the hospital. We knew that MRSA was not only in hospitals but around in our communities across the country. However, we didn’t realize to what degree…really, we had the misconception that it was really only found in the hospitals. That’s all that we’ve hear about…how someone has died in the hospital because of a “staph infection”. That’s all we’ve heard about until now….in our schools?? That is so completely scary to me!

Gus never caught MRSA, but he did have quite a few nasty Staph Aureus infections that were true adventures! We were fortunate that he never became infected because death would probably have been swift since his immune system was not top-notch. Of course, since Gus died there is no concern for him catching this Superbug, but I do have three other children that need protection…heck, we ALL need protection from MRSA.

We’re going to be using Staphaseptic on our wounds from now on. I’ve read the information at their website and I’m completely convinced that switching from our Neosporin to Staphaseptic will make a huge difference. I feel that using this product will protect us better than what we are using now.

Of course, good hygiene goes very far in avoiding this Superbug. When you visit the site be sure to watch the video. It’s very informative and shares information about MRSA that is on a level we all can understand. It also shows the steps to take in helping to prevent MRSA.

Please forgive my long-windedness, but this is serious stuff folks!

In our schools?? Sheesh….

Gus and His Pulse Ox

Gus was always fascinated with his little pulse oximeter that the nurses tried to keep on his little toe or finger. I think it was the little red glowing light that caught his attention….and made it so fun to play with and put in his mouth! About a month before Gus was released from the NICU, the docs decided it would be best to discontinue using the pulse oximeter on Gus, since it was not really getting an accurate reading from his mouth! Lol!!

I’m thankful for pulse oximeters, really I am, but it was a good day when we could stop having to battle keeping the little thing on a bored five month old! Lol!!

NaNoWriMo 2007

Are you all getting ready for this year's NaNoWriMo?? I had a blast participating last year and I even completed the rough draft of my first novel. When I say rough draft I mean really rough draft! lol!! All in all though, I am pleased with my novel so far. I wrote about Gus and what he might be seeing and experiencing in Heaven. It was very therapeutic for me to write about Gus and I just hope that one day God will use my words to encourage others. It would be an honor...we'll see...

Intestinal Bleeding

Just came across this feed about Billy Graham being hospitalized due to intestinal bleeding. Poor guy...I wouldn't wish intestinal bleeding on anyone. Pete and I have seen it first hand and it's not fun. Gus had several bleeds and they are scary...thinking about it makes me want to cry. I took a photo of one of Gus' diapers during one of his bleeds in hopes that I would be able to share it with another momma that wasn't sure what the docs meant when they said something like "just come on in when there's a lot of blood..". What?! Uh..ok...a speck of blood in my baby's diaper is a lot!! So, folks, I have a photo of a real intestinal bleed for a reference point...hopefully, you'll never need that kind of reference point.

I would show the photo here, but it is quite disturbing. If you'd like to see it, just let me know...I know that sounds weird, but seeing a photo of a bleed would have helped me tremendously. I wouldn't have worried so much about the specks....

Emergency Air Ambulances

I will never ever forget pulling into the emergency drop off area in front of East Tn Children’s Hospital while a helicopter was landing on the pad on the roof. You’re may be thinking, “so what”…and normally I would agree, but you see, my baby was on that helicopter and he was dying.

I can’t even begin to tell you how thankful I am that we have emergency air ambulance service in our area. If not for these helicopters, Gus would have died just a day after being born. Because he was able to be transported by an air ambulance, he was able to get to a hospital that was better equipped to take care of his extreme needs.

I heard just a few days ago that we will be getting another air ambulance in our region. What a blessing! There will be lives saved in emergency situations and there will be lives saved by being transported for surgeries such as transplants. We are really fortunate to have these services.

Check AirAmbulance.net to see what air ambulance services are available in your area.

***sponsored***

I Miss Medical Supplies

This is Gus on one of the wonderful chux(the blue pad) we used. Those things are great!

When I grow up, I want to be an Ostomy Nurse. Really, I do! When Gus was in the hospital, I got to know the in-house ostomy nurse. I learned a lot from her and enjoyed our talks. In all honesty, I miss all the “things” that come with taking care of someone who is medically fragile. I know that sounds crazy but you just get used to all the symbols, letters and supplies. I really think I could help people who have new stomas and are completely devastated.

I also have a heart for people who have problems with their bowels…this is hard to deal with and if Gus and lived he would certainly have had a lot of bowel issues that would have required supplies like tranquility diapers, chux for his bed, and special wipes. I’m glad there are medical supply companies that ship these items to you….going to Walmart to pick these things up would be near impossible!

***This is a sponsored post.***

One Year Ago...

sticky post...scroll down for current posts!

One year ago today, we laid our son Gus before the Lord. We miss him terribly...I especially miss snuggling his little body against mine and smelling his neck...gee, this list of things I miss could go on and on.

Though he is no longer with us physically, we know that he is with the Lord and is healed. We know that he knows us and loves us...I'm sure that Jesus talks about us to him...I'm sure he's looking forward to seeing us again too! Since prayer is basically conversation with the Lord, I really believe that we are being prayed for in Heaven...we read in James 5:16 that a righteous man's prayers avail much...aren't all those who have gone on to Heaven considered righteous now? It warms my heart to think that Gus is praying for us! Does this mean that I think our loved ones are watching everything we do?? Nope...but I do think it's possible that the Lord would come to Gus and tell him that his parents are grieving and then together they would pray.

I am so looking forward to spending eternity with my sweet little Gus. I will always think of him until we are reunited...but here and now I have a lovely family to take care of and I want to do that with great joy and with the light of the Lord shining through me!

Make video montages at www.OneTrueMedia.com

Please consider organ donation...pray about it, discuss it with your family, research it.

A Baby Bottle and Romance

TeaMouse is having another writing contest! This time the theme is "romance". The following is my entry...

As I approach the one year anniversary of Gus' death, what we fondly like to call his Coronation Ceremony, I have been reminiscing quite a bit. I have a lot of memories from this journey and I'm trying to get them all down on paper.

When I think of romance, I think about a time when Gus was just about a month old and in the NICU. Pete would always go to the NICU in the mornings so he could get the doctors' reports. He had to do this because, at that time, I really couldn't process much. Between being post-partum, having a deathly ill child and being 2 hours from home, I was a complete mess. All I heard was "he's not going to make it..." even when the reports were fairly good! (the head nurse ordered me to stop pumping, start eating chocolate and get some Zoloft...things were much better after that, but that's another story for another time! lol!)

One morning I got a phone call from Pete telling me that I needed to come down to the hospital because the doctors had decided it was time to try to feed Gus with a bottle! I was so excited...I just remember thanking God for this progress. I went down and scrubbed in...sat down and feed my baby for the very first time ever.

Later, it hit me what Pete had done. He very easily could have fed Gus himself and then told me about it later....he could have demanded that I give him a turn feeding Gus...but he didn't. He was so sensitive to my needs and desires and to me, that is true romance.

Pete did this very thing several other times...even on the day that Gus died.

I told him that I needed to hold Gus as he passed and he told me that he wouldn't have it any other way. He could have put his foot down and told me that I "had to share" and that we both should be holding Gus. He knew though...he knew what I needed and he loved me so much that he denied himself the privilege of holding Gus as he died.

That's romance, folks...and I am blessed...

Be sure to go over to TeaMouse's to read the other posts about romance! I think it is so nice of her to host these contests!

Neti Pot Not!

...or let me say, not just yet!

Mom informed me a few days ago that she was going to buy us all neti pots like she had seen on Oprah. Now, hear my heart, I'm sure neti pots are little miraculous snout cleaner-outers and I'm not here to make fun of these things...I really think they work! I just don't think I can have one in my house and use it without laughing myself sick! lol!! And I'm also not sure that I can remain calm and breathe through my mouth as the water is going into my snout...scary!

I first saw a neti pot on a reality tv show when Gus was in the PICU. I quickly called the Nurse Practitioner into the room to watch this guy use his FIL's neti pot. What!? Ewwww....he actually used his FIL's neti pot because he wanted to "bond" with him and he thought it would make the FIL feel special!

Well, this little bit of interesting tv soon turned into a huge search on the internet....because that's what everyone does in the PICU when all the kids are behaving!! Amber, the nurse practitioner, found a lot of interesting things about neti pots and even a few interesting looking ones too. She did such a good job researching that I had to rename her "Nurse Neti Pot" and that is what she has been ever since.

Nurse Neti Pot was there with us on the day that Gus died. I will never forget her diligence and the love she had not only for Gus but for my whole family. I loved joking around with her...she understood that in the PICU there were times you had to joke and laugh so you wouldn't cry. I miss Nurse Neti Pot. I should send her a letter....

This Time Last Year...

This is from Gus' CaringBridge site:

TUESDAY, MAY 23, 2006 09:42 AM, CDT

Gus' teeth have stopped bleeding..we think! lol!! He was given a medicine that is used for oral bleeding and it has seemed to work. He is still quite puffy but is peeing ok. He can't help but be "over-filled" with all the blood products he has to get daily. Pete bought me a step stool so I could get up higher so I can reach over and squeeze Gus...we have to be very careful not to move him so it's best for me to "hover" over him and give him hugs and kisses! lol!!
Pete and I are on our way to a Grand Round...we like to pretend we are doctors! The head of Gus' transplant team is speaking here today and we were told we could come. Dr. Mazareigas is going to be talking about intestinal failure and transplantation....that would be us! lol!! Anyway....I'll be back later with more...

Please consider Organ Donation...

Heavy Heart

For those of you keeping up with my "Grief Journey", I've posted "Heavy Heart" over at Gus' Gang.

Grief is such a strange thing...I think I will always have something to write about where it is concerned....

Time Travel Tuesday

Today I'm going back to my first post and talking about why I started blogging.

I first got involved in blogging type activity when I put together Gus' Caringbridge site. Here's the first post from that site.

SATURDAY, SEPTEMBER 17, 2005 09:01 PM, CDT
Gus is feeling much better today. His legs are not so tender and he is smiling more. He wore his white polo and new blue jeans this morning...and immediately had a leak!! Oh, well, you won't hear us complain about that!!
We are waiting on test results concerning his liver enzymes. The TPN (intravenous nutrition) causes liver damage so we have to keep track of the condition of his liver. It's a trade-off that hopefully/prayerfully will help his bowel adapt and grow. With elevated liver enzymes, Gus is somewhat yellowish...I call him my "Little Yellow Dumpling". He's precious no matter what color he is!!

Gus was in and out of the hospital and there were several times that I was away from my other children. I realized that a good way to stay in touch with them...and a fun way for all of us to communicate...was through blogging. I also realized that there were people out there that were very concerned about the well-being of the children during this hard time. I wanted to share with everyone that even though times were hard that the kids were doing well...I did this by blogging about whay they were learning in school and what they were doing. I blogged about how they were helping Gus and also helping me! Here's my first post from "Up the Hill Gang"

Crawling Through a Blue Whale's Aorta

September 27, 2005

We are currently doing a mini-unit on whales. Did you know that the largest Blue Whales have hearts that are the size of Volkswagon Bugs?? And that a human could crawl through the aorta! That is mind-boggling to me...and suddenly very disgusting! Oh, one more thing, the blue whale is the loudest animal coming in at 188 decibels...jets are 140 decibels and conversation between humans is 60-70 decibels. Interesting....they are big and loud...sounds like my two oldest boys!!!

Pete made a 94 on his Anatomy & Physiology exam...the class average was 68. We are all really impressed with his vast knowledge!! I believe he is studying bones right now.

Leif Erickson was who we talked about today during history. I came across this website that was very interesting... http://www.viking.no/e/people/leif/e-leiv.htm

We are really behind on learning sign language. I think we need to practice more during conversations. I've been signing with Gus when I'm bathing him, changing his diaper etc...but then sometimes I forget! It will just take some getting used to. I've finished the story props for Lunch by Denise Fleming and they are really cute, if may say so myself! Go visit her website. It's neat. http://www.denisefleming.com/

After Gus died I started Gus' Gang.

Welcome

June 5, 2006
Welcome to our new blog! Pete and I hope that you will visit us often and check out what Gus' Gang is doing. We are excited about this ministry and we look forward to encouraging families with chronically ill children. If you know of a family that you think needs to be encouraged by Gus' Gang please let us know!

and here's the second one since the first one wasn't too exciting! lol

Take a look...

June 5, 2006
at sweet Emma Cody!
Emma has set up residence in the East Tennessee Children's Hospital NICU...she's been there since January 2, 2006! She is a micro-preemie and is loved dearly by her family and her nurses. Right now Emma needs prayers for her lungs to heal, for her fundo to work and for protection of her bowels. Please also pray for Emma's big sister, Gracie. Times like these are very hard on siblings...let's shower this precious family with prayers!!
I'm a sucker for sucker pictures!!

Blogging has been very therapeutic for me and I've met a lot of neat people!

Check out other TTT over at Annie's!

10 Days

There are 10 days between now and the anniversary of Gus' death. Gus died last year on May 31st. Grieving has not been a bitter ordeal for me and I'm thankful for that. I know that some people can really struggle with the death of a child. Hear my heart here...I'm not saying that losing Gus has been easy. I am saying that I have not dwelt in that stage of grief where you are trying to place blame somewhere...on someone...something. I have been there but not for long. What is so tricky about grief is that there is no guarantee that I won't revisit that stage!

There's also no guarantee that those "crying spells" will hit you when you are at home, in private. Oh just the opposite is certainly going to happen and always when you least expect it! But, these "crying spells" are good for those who grieve. I embrace them!

So, if you see me crying in front of the shredded cheese section at the grocery store or at the back of the BloodMobile where all the snacks are....let your heart be glad because what you are seeing is my healing.

Wordless Wednesday...The Gus Bus

Ten on Tuesday...Sad Songs

10 Songs that Make Me Sad...well, let's say songs that stir up memories that make me cry!

Held by Natalie Grant
Untitled Hymn (Come to Jesus) by Chris Rice
Wonderful, Merciful Saviour by Susan Ashton
Praise the King by Cindy Morgan
Proud to be an American by Lee Greenwood
The American National Anthem by Francis Scott Key
Luca by Suzanne Vega ok, this one doesn't stir up memories! I have been fortunate enough to have not experienced domestic violence...Pete wanted me to let you all know that!!
Open Arms by Journey (lol!)
Memories by Barbara Streisand ( Hubble: Go get'em Katie.---Katie: See ya Hubble.) I'm crying right now!
Somewhere Over the Rainbow by Israel Kamakawiwo Ole ...and now I'm really crying!

Photo and video editing at www.OneTrueMedia.com

Visit more Ten on Tuesday posts over here!