Pages

Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, September 30, 2011

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!

Saturday, September 24, 2011

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.
Posted by Picasa

Thursday, September 22, 2011

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.
Posted by Picasa

Monday, September 12, 2011

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.

Saturday, September 10, 2011

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!

Thursday, September 8, 2011

Wednesday, September 7, 2011

A good day

We have had a pretty quiet day playing in the playroom, riding the tractor, having a visit from Sister Francis and Carter R. I had a chat with the doctors this morning, there is really no change from what Dr Mart told me. So the plan is to have a PICC line placed tomorrow, then learn how to take care of it and discharge Friday. We feel lucky to have caught this so early and only had to stay a week, instead of finding it when it had had a chance to get stronger and be here months. Blessing I tell ya!

Tuesday, September 6, 2011

Not really a report

So I caught the Doctor in the hall and we chatted for a minute because he really wanted to go over everything again. But, he said his findings were mostly positive. Gator didn't have any signs of vegetation (clusters of infection) or any clots. That is great news!!!!!! Although it doesn't really tell us much, except somehow he got staph in his blood stream and his body is trying like crazy to fight it off. He was really thirsty today, fasting for his TEE and it was hard. I did it with him and my own tummy was growling. He finally went down at 3:30pm and he was soooo thirsty when he woke up. He wanted an apple juice, some water and then caffeine free diet coke. After his rough day I let him have it. We will have more info tomorrow after the doctors round in the morning. I feel kinda bad it takes so long before I can update, it is super hard now that Gator can tell me he needs me for things. I spent a good majority of the day trying to distract him from his thirst/hunger and the other part of the day trying to get him to wake up and eat... Busy busy busy!

So what's happen'n

Today we have been waiting most of the day to have his TEE, he had to be NPO since 10:30 last night. It is hard for my little guy to wait that long. He's back doing it now, so I really don't have an update yet. Dr Mart is doing his procedure. I had the opportunity to hear his wife speak at a RS meeting once. They have 19 children and most with special needs. I know Gator is in good hands with him.

Monday, September 5, 2011

Munchie says tickle


Gotta love her! She is 10 months old.

Munchie's one year pictures

She never wants to hold still anymore. So getting her One year pictures is a trick.

She is so fun to have, and an absolute joy!

As munchie as ever.

She thinks she should walk and talk... Seriously?

This look is how I felt... Just be done!

Hi!
Posted by Picasa

Almost 7 years old

Later this week Ry Ry turns 7!!!! She is the best big sister and such a help to mommy and daddy.



Love Her!



Posted by Picasa

The TRACTOR!

Daddy keeps up with Gator while he rides the Tractor down the hall.

Bensy (Didi) rides in the bucket.

He can do it no hands too!
Posted by Picasa

So today!

Yesterday I picked up the girls for some mommy time, it is about this time after a few weeks that Ry starts to have a hard time. We had dinner together and went on a little bike ride, followed by popcorn and m&ms in my bed and a movie! Daddy and Gator hung out together last night and this morning.This morning Gator's IV failed and he had to have a new one. I made it up to the hospital around lunch time. I took Gator to the playroom but we only got to stay for a little while until they paged us over the intercom. Infection control wanted to chat with us. It seems Gators culturs have grown out for a third time. We know for sure that it is there now. IC is called in to make sure we are treating it the right way. They have some ideas of what it is but are not 100%. We know it is staph but not sure if it is endovascular or endocarditis. So to begin they have him on some big gun antibiotics: vancomycin, gentomycin, and rifampin. The plan now is to do a TEE or trans esophageal echocardiogram. We hope this will try and find sources of infection and also see if his new conduit if functioning correctly. We will learn how to take care of a PICC line for meds for six weeks and then he most likely will be on antibiotics orally for six months. We will have to ask how this will effect things in the future like school and church! Gator got tomride the tractor a ton today which was really nice for him. He loves to laugh but it hurts. Daddy even took him out on the terrace for some sunshine. If you have to be in a hospital it is nice to have distractions like tractors, playrooms, and sunshiny terraces.

And now!!!

Yesterday night/early morning the boys arrived had test run and an IV placed in order to start antibiotics. He slept pretty good and had a nice day Saturday. Gators hematocrit was low so they did a transfusion and continued to monitor him the rest of the day. He seemed to perk up a little and wanted to ride the tractor. The rest of Saturday was pretty quiet. Sunday they told us nothing had grown out yet and we would most likely go home Monday. He continued to have IV antibiotics and rested all day. We also made it to fast and testimony at the branch. The spirit is amazing there, I am pretty sure that angels attend that meeting. Also the hospital would be Our Saviors first stop. You testimony can either be shattered by Illness or it can grow immensely. I have decided the burden is too great for me and that the only way to go is to rely on Heavenly Father. He in turn can touch everyone else who is either watching over my home babies, or guiding the hands and hearts of the nurses and doctors. Another fun thing, Gator was moved from the ghetto in J pod to O pod which is practically the Hilton!! Who hoo!

Saturday, September 3, 2011

Turned into something

So last night around 7:30 we got a call that said something grew out in Gator's cultures. Off to the hospital we went. Taking every precaution to gather a clean sample. We were hoping his crp and CBC dropped as well. We found out they did and we got to head home then wait for the results of the cultures. Tonight, Daddy and I went on a date and after we called the NP to find out if anything had grown. Great news! We came home from our date to a very uncomfortable little man but willing to hit the sack. I thought he had really over done it today. About 11:30 tonight we got a call that his culture had grown something. Daddy is taking him up tonight and I will spell him in the morning. He has to have IV antibiotics to try and kill that bug.

Friday, September 2, 2011

Munchie is a mess maker

 I think she wasn't sure what to do with all of those tubies. It is taking some time but we are helping her adjust to all the equipment.
 There will be some plants we will need to move for a while... Naughty!
 She is super close to walking, standing in the middle of the room. She just hasn't figured out how to take steps.
She has figured out how to get into mischief!

I would pretty much have to carry my camera around all day in order to catch all her little "Tricks"

My First Grade Super Star



Ry also had her first day of First Grade! She is so amazing to endure all that she has and yet she is excited and happy about her own adventures. Our little smarty pants will be learning French and going to lunch!!! How exciting! She is again one of the tallest in her class, if not the tallest! We are so lucky to have one of Ry's best buddies in her class, Ellie! Plus my little social butterfly is happy to meet new friends.

A little head scratch

We went to the hospital  for a follow up xray to make sure Gator didn't have Plural Effusions. These are common in kids who are post Fontan. The good news it that his Xray looked awesome. After chatting with Annie she was concerned about his fevers. With no other symptoms besides a little cough we decided he better have labs to check his cbc and crp. It took to pokes to collect the darn things. While we waited for those to come back Gator had his last stitch removed the stitch was from a chest tube. His incision is closed with Dura-bond so it doesn't have to have anything removed. The crp came back elevated. They like to see it at 4 his was 16. So we needed to do two more blood draws and a urine sample. It took forever to get that peepee, Gator slept in a wagon while I walked him around the hospital. Finally we collected it. It had to be sterile and that is hard for a little boy on oxygen who has a sternal wound that doesn't like to get on and off the potty very much. But there was no other way to catch it. Then it was off to the lab for two more pokes. It was miserable trying to get the samples. Gator would hide his arms behind his back and beg to "please stop!" The lab tech was so patient and really took time to find just the right vein, everything was pretty much shot. He ended up going to the feet. We don't even want to think about the head now that Gator is big. With mommy singing and talking about his WISH, and the Woody Wood Pecker ride we made it through. I was so relieved to be leaving the hospital. I got everything in the car and Gator all situated. I also went to return the wagon. Then came back and checked Gator's oxygen. His tank was empty, I got out the other tank I got and fixed it all, then went to turn it on and it LEAKED loudly... I undid everything and tried again, still leaking. I told Gator we had to go back into the hospital because something was wrong. He immediately started to cry. He was DONE and I really didn't blame him. I still needed to fix my tank issue to I went to the security booth and told them I was here alone with my little son who had had a rough day in the hospital and would not go back in. I needed help because I wasn't sure how to best fix this issue. The security guard radioed for another to help me. She wasn't really sure what to do so she radioed another, Two more came and then the smarty one came out of the ER with a respiratory therapist(who happen to be wheeling out a tank) I am sure we were a sight with four Security guards and the RT, one crazy momma, and a little boy who was not going back in the darn hospital.... Finally, we trouble shooted all we could and realized we had a gauge issue and we needed to go into the hospital and talk with CTS(Cardio thoracic surgery) Bonnie came down. A face we know and love. She helped us page discharge who was in a meeting and could bring us a tank in a little while. Finally she came down with a tank and we headed home. It was a L O N G day. Our appointment was at 8:15 am and we finally got home at 4:30 pm. Glad it is over! Now we have to wait and find out if anything grows out!