Kaidence Followers

Hey friends,
It has been a while since I had my link list erased. I still follow my heart friends in my reader. Recently I found out the our sweet heart friend Kaidence isn't doing well. I know that many of you have followed her story from our blog and would like to catch up on her. So I am posting her link under family because she is family now! They are in desperate need of prayers. I believe there is also a fast being held this Sunday. Thanks to all our friends and family who love them as much as we do!
 http://4mykaidence.blogspot.com/

And how are you?

Great!!
So just an update.... Gator has been doing okay, we have been doing his normal troughs. These check the levels of Vanco in his system. The also do a CMP or The Comprehensive Metabolic Panel a test that gives important information about the current status of your kidneys, liver, and electrolyte and acid/base balance as well as blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. We have been watching Gators Creatine levels. It seems those crazy antibiotics are messing with his Kidneys. Gator doesn't seem to be affected too much by all of this business except that he has to stop playing for nurses to take blood. That PICC is a blessing after all because getting this many pokes would be torture. I totally have a sweet/funny story to tell and I won't name names to protect the innocent, and I hope the mommy doesn't mind... It's just too good not to share.

Yesterday we had yet another blood draw. This time Gator had a little friend over! Let's call her "Tiana".... While Gator was having his blood taken, Tiana was worrying about her little friend from the other couch. The nurse was trying her best to get something out of that stubborn PICC and nothing was happening. It was very frustrating to Gator who wanted to play and not be bothered by this situation anymore. Also, he had just finished getting a dressing change due to some irritation that had caused some bleeding under the dressing and it looked pretty "angry". I was seated near Gator boy on the couch and asked Tiana if she would like to come and sit with me so she could see better. I thought for sure most kids would think that was kinda cool and she could see that her friend was in no real danger. It never even registered with me that she would be different from my own children who see these things ALL the time. She came over, hopped up on my lap and looked over... She said "oooooo that looks like it hurts!" then she sat straight up and clamped her mouth shut tightly. Her little cheeks began to bulge and her eyes teared up.. She could hold no more and barfed. Poor little thing. The nurse and I just looked at her, like that was a totally common thing to do. I moved my shoes out of the way, in case there would be a second episode. I covered it with a piece of paper and helped her to the bathroom. We stepped into the room and she made it to the sink. Her whole lunch. Bless her heart. She was probably starving later that day. She just kept saying "I am sorry".... I felt so bad for her. It was my own fault for thinking she had a stomach of steal. She stayed near the toilet the rest of the nurses visit while I cleaned everything up. Then the kids played again after the nurse left like nothing had happened. I love kids... Tiana certainly did not need to say sorry. It was a reminder to me that I should be careful of those sensitive eyes and stomachs.  The best part was, her mom came to pick her up and the first thing she said was "GUESS WHAT?????? I threw up on the carpet" HA!

Well, the nurse was never able to get blood, so we had to do the TPA again. This time I was going to be in charge of removing it before administering the Vanco. For some odd reason I was a little freaked out by that. I had to write myself a note to remind myself to pull the TPS out instead of pushing it into his body with a flush. I did fine. Late last night the nurse came to get the CMP. Somehow we missed the order for the trough so we got to see Dillan again today. Infectious Disease called and said his Creatine was trending up and would chat with Dr Su to see if we could reduce his Lasix in order to preserve his kidney function. One thing I have learned is that this heart business is all about the tuning.... Once you tune one things you have to check all the other things and fiddle here and adjust there. It's all about the TUNING. Well Dr. Su didn't want to mess with his diuretics until he had seen an x-ray to make sure he still wasn't developing any effusions. We are so lucky to have the Riverton location. I only had to drive him over there for his "pictures" instead of all the way down town... AWESOME I tell ya! The x-ray looked awesome, and we lowered his Lasix to once a day instead of 2. Then we will do another trough tomorrow and we see Dr. Su Monday for clinic.

It may not seem like a lot, but between feeding, napping, bathing, diapering, school getting to and from, hair and other crazy mommy things my days fly by. Is tomorrow Saturday already?
Well then,
Happy Conference Saturday!

Catch up with Ry

Oh how she loves to be Seven. It is amazing that I have a child that old. I miss her during her long school days, but she is having fun and learning so much. This week they had Green Ribbon week at school. It is all about safety. Her favorite day was crazy hair day. We wrapped her hair in blue and red perm rods the night before and pulled them out the next morning. I wanted to comb them out and have a pick, but I had to respect the diva and she wanted to wear them like this.

She was BOINGING them all day. When she got home she told me that nobody thought it was crazy they thought it was beautiful! By far better in her mind. We also had crazy sock day and a hat day. She is doing so well in french and can count to 29 without any help. We have a couple of apps on her ipod that make it fun to learn french. She is also reading so well. She can read so many books from our little library I am happy we have them and she is using them. I love children's literature. She is such a helper at home too. I can count on her for emptying the dishwasher, cleaning her room, a laundry folding party, scrubbing the toilets and the tub. This girl is amazing. I give her a list and she loves to cross things off. She doesn't like when I add to the list mid-jobs so I have to put everything on it I need done and when it is over it is over. I thought I had her convinced she should try out for a local play, just to have something she could be involved in, but I think it freaked her out a little and I still have to work on it a little bit. She wants to try tumbling, or rock climbing camp, or swim team, but it will all have to wait till we are more settled. We started plotting together on her Reflections entry. The theme is "Diversity Means?".... We have a couple of ideas that she wants to try. We will have to take pictures of the process.

I just love her.

I forgot to say!!

I forgot to document two things Gator said that had me in giggles...

G-"mom I just love this dinner!"
M-"It's good right?"
G-"Yeah I am totally DIGG'IN it!"

G-"Mom, does this outfit look HOT?" scary outfit that totally doesn't match
M-"uhhh it looks alright" totally trying to be nice
G-"Yeah but do I look HHHHHOOOOOOOT?"
M-too busy covering my laugh to tell him otherwise

Gator Catch up

 

Life at home with Gator has been busy. He was on so many medications needing time for each med  to be distributed, making sure I was cleaning my hands and the tube and taking care of regular house things was a bit tricky.(why I haven't blogged) Here is Gator just a couple of days before we are discharged playing hospital bingo!
The best bingo ever cause everyone gets a prize!

 

We can call into the playroom with a joke and they will tell it on TV to the whole hospital and say the name of the child who gave them the joke. He is listening to his joke... Which happened to be, "If Frosty the snowman and lady Dracula got married, what would they name their child?".........Give up?........ FROSTBITE.....hahahhaha.

 

They can have the playroom bring things down to do. So he painted with his two favorite colors.

 

The whole primary wrote him that get well card, and brought him that fancy monster truck, Monster Mutt Lego's. Awesome. We love our ward family and would not be able to do this without you! His special treat that day is the Coke!

 

Here we are at home.... I wanted to have a little picture to document this for him. He amazes me. We have had so many mini miracles. Like the day we were discharged, I went down to pharmacy to get his oral meds, one medication we didn't already have at home. When the lab tech came back with the hugest bottle of Rifampin I had ever seen I handed over my insurance card. She ran it past her pharmacist and then told be that my insurance doesn't cover this med because of the new way they mix it... Okay, so it would be 156.95$ I must of had a look of complete horror on my face cause she walked over and chatted again. This time she came back with a smile. It looks like there is a waiver from someone upstairs, we can give it to you for 10.00$ can you do that? Totally!!!!. Right then and there my testimony of tithing grew. You can call it whatever you wish, in my heart I know that Heavenly Father was watching over my family in more ways than helping my son to be well and our family to be united. I know that it is because we decided that we would always make tithing our first priority; then have faith that things would fall into place. They did that day!

 

Another mini miracle. I was so scared that I would not be able to keep up with all that was necessary of me as a wife, mother and nurse. Without training other than just the day to day living I am not a nurse. But I have learned (and prayed) that I would know how to take care of Gator so that he would get better. He continues to improve everyday. He is so much back to his self that he hates being home all day and wants to be outside so badly. I let him sit out in the sunshine on the steps as far and his oxygen tubing will let him go. Play cars in the flower bed dirt and unplug for five minutes to visit his favorite big friends, Debbie Girl and Bishop for some chocolate milk and a squeeze/smooch. He loves them far beyond words. He starts talking about visits at 9:30 in the morning and doesn't stop asking until he has had his fix of his friends.

 

Another Mini Miracle. I do not have to change this dressing. Dillan our awesome nurse comes to do that. Gator saw him coming this Monday while we were in the office and closed the blinds and locked the doors. I was on the phone with Comcast disconnecting our services (except Internet of course) I asked Gator to let him in and he told be NO! When I let him in, Gator threw a huge fit with kicking feet and fists. Screaming and crying. I guess it hurts. He was brave after I explained that we have to do it, that it will be fast and it will be over. He has a forgiving heart because he gave Dillan some of his McQueen stickers for his ear beep beep (thermometer). Gator calls the little white part his Airplane.
That funny little bulb is his antibiotic medicines. They hook to his shirt and are distributed through a regulator over an hour of time to his body right through the PICC. He was originally on two antibiotics; Gentamicin and Vancomicin, as of last week he is down to just the Vanco and will need to stay on that for another couple of weeks. We will get some pictures of his shower thing cause it is funny. The trucks bandage you see is not as cool as we thought because it totally sticks to his skin and dries it out. So I bought him some socks that we cut the toe off of and it covers well and breaths so much better. We did have one issue where pushing anything through his line was really hard. We ended up needing TPA, or enzymes that safely break down clots so that the medicine can keep coming. It flushes beautifully now and we are back on track.

 I thought he would be eating better by now, but I am sure it will all come in time. I also thought he would have more energy to run around. He still gets winded and tired. There are so many wonderful things that he is doing. His little popsicle feet are toasty warm and he has the nicest skin tone. I also gave him a haircut because nothing is scroungier(is that a word?) than a little man with rooster-fashion-sleep-hair. I think he feels better about that. I would. Those tubes pull his hair and it feels better to have it trimmed nice and neat.

Munchie and Gator VS Noodles

I must make some mean Ramen noodles cause my kids love the darn things. I am fully aware that they have nearly no nutritional value. I also know they are pretty high on the sodium charts, but hey.... Gator will actually eat them without gagging. Munchie is clearly going to follow in her brothers Ramen path.

We made it HOME!

We made it home yesterday evening. This time it was a good move. There was only little worry on my part if I was capable of handling the PICC. I was afraid of the air bubbles and the schedule that would need to happen. Things are falling into place and if I just follow my notes, schedules and listen for my phone to alarm me to the meds he needs I am gonna make it. I am sure this isn't hard for anyone but me. I am going to get on a routine and try my hardest to not mess up the old routine with the girls. It will be a ton of watch watching. Hehe! Ry's Birthday was a smashing hit. She wanted Zupas for dinner, lucky for us they were also giving out free desert. Plus we got to ride the train home from the hospital after visiting Gator. He got his sister a gift at the gift shop in the hospital. I can't believe I have a 7 year old. Where did the time go?
Everyone seems happy to be together. Today we did odd jobs and scrubbed the house. It is nice to have done. The shed is officially completed on the exterior. I am taking some photos tomorrow in the light. Also, I am looking for cleaning advice. So, should I wash windows now before the winter? Or, should I let the grime stay and build up through the winter and clean in the spring? See my dilemma? I am off to check his Vanco and dream of carpet. I can spot check and vacuum to my hearts content and it still looks dingy. Blehhh!