November-

November is Prematurity awareness month. I have stopped trying to do 30 days worth of awareness because I don't have time any more. I guess life use to be a lot less hectic. But I will try and give a few facts and figures and of course, the gift that keeps on giving, just life in our house.

This month has already started off with a bang and with Prematurity at the head front. Sometimes I forget that people don't know that the issues we have all stem from one big thing.

Prematurity.

For the last few months we have been on a medication called Lamictal. It is a anti seizure drug with many uses. We have a very conservative neurologist and he wanted to try it with Tyler. We started with 5mg. Which was a VERY conservative dose. We were to up it every 2 weeks and I always upped it on a weekend so that we could watch for the common rash that can occur. The common rash, is a life threatening rash. You know.. no big deal... ugh! I was worried. But as we went up there was nothing. Not even a spot.

We got up to 25mg 2 times a day. We had a mix up with the pharmacy and with on call doctors and our neurologist and with nurses calling back and it was a big mess. But right after we got back from our vacation we had run out of meds and had some issues getting more. After a run around we had 3 kinds called in. I kept giving him the 25 mg's as we had been until the first of November.

We had noticed a few marks on his body when we moved from lamotrigine ( the generic) to 25mg of actual lamictal, and I took him in. The pediatrician said he felt it was just dry skin and eczema. So we treated it as that. Then I upped the script over the weekend to what the neurologist had actually written on the script. He upped it to 125 mg 2 times a day. And watched for the rash again on Sunday. A few more spots were there so I added more eczema cream. Monday I sent him to school

Monday afternoon the school nurse called and said he had a rash. I kinda of rolled my eyes, but went and got him. She was right and he had a rash. We took him right over to the peds office. And we decided that we would rather talk to the neurologist.

Our neurologist was so upset that he wrote the wrong script. it wasn't that big of a deal and I wasn't horribly mad but he wanted us to be admitted. He was worried it would progress faster and he wouldn't be able to breathe and it would be a bad deal. He also didn't want us in the ER. He called and got us a bed and they called us when the bed was ready. ( I must say, that is MUCH nicer than siting in the ER waiting.)

So we were admitted to Cardon's Children's hospital. I am glad that we were not having to go clear into PCH. We have done all our brain surgeries at Cardon's children ( formerly knowns and Banner Desert Children's hospital) and they have a brand new hospital that is only about 5 years old. We were on the oncology floor so that we didn't catch anything extra. 

Tyler was fine with being at the hospital. He was a good sport. Grayson did really well, but as soon as Dallas got there he was ready to leave and wanted to get out of there. He doesn't really like it and has anxiety about hospitals. 

I stayed like we normally have me do. I made the arrangements for Grayson for the next day and got everyone set up and then we waited. Tyler needed a IV. That is the WORST part of the entire stay. The poor kid. The nurse needed a blood draw with the levels of both our seizure meds and we also needed a IV or a route for meds incase he stopped breathing or had a seizure. 

The blood draw went ok but as they were trying to tape everything for the IV they pulled out the IV and had to re poke. Tyler was crying, I was crying. I was sobbing. He was sobbing. Then we had to splint his arm up so he wouldn't pull everything out. 

We got his normal meds in and we got him to go to sleep and he did a great job of staying asleep. He woke up around 3am and wanted to watch a movie but quickly went back to sleep. I even had a nice little corner to sleep in.

The next day we were able to go home. We were taken off the drug for a few more weeks where we will start again really slowly. We will see the doctor before we start and will probably have a few more appointments with blood draws to see how we are doing.

Having a kiddo that has seizures is scary. Having the drugs going through their body to help them is scary. All because the gift of prematurity is the gift that can keep on giving. Prematurity is not just having a little baby. It is truly is not worth having a baby before it is suppose to be here.

"Insta"post

If you follow on Instagram or on Facebook these might be repeats but still, my kids are awesome so why not share a million. Plus these include photos of the Hospital so for pete's sake... deal!

Before we went into the hospital Ty needed a hair cut ( Oh yes.. it was THAT bad that we didn't take a picture. Poor kid hates it so so so badly.) Our cute little respite girl made a hat for him to practice wearing before the "big day" of an EEG. I won't lie, he didn't love wearing the hat, but the hat was a genius idea.



I researched some other toys that we could possibly use for a distraction while in the hospital but used it to bribe and he had to sit and watch it be on the shelf. But Grayson's toy was for the taking and he got a airplane. We all sat and played airplanes before we had a large birthday party for the mom.



We did have a great birthday party for 2 days but was ready to switch up the gears of party mode and get this stay over with. I was not looking forward to it. But was trying to not have a freak out, meltdown that usually accompanies the hospital.



No I am not 38 but the boys all had to help me blow out candles. We got a lot of spit on it too. We lit that sucker like 5 times.


After many blessings we started the Tuesday morning. Ty did awesome by the way. He did such a good job of letting them put all that stuff on his head.



After dad and brother left we had a dance party and a "throw the snacks against the window party." I feel so sad for the residents and students who had the luxury of watching us the next morning.



And this is what helped with the distraction..... STUFFY




But being at the hospital had one weird perk. Their food rocked.. PCH is the best hospital food EVER



That is RIGHT prime rib for the liking!! It was rare and Great!

But not all food was created equal and Ty like the brownies for dinner


The day 2 was a different story. We were playing every game we could think of. We were so bored. Finally we just succumb to the iPad.


On a random walk through the gift shop I ran across this BEAUTY



And the brother gets in on the Stuffy action




And to try and process the meds in Ty's system we sent him out during the monsoon



And the beauty of the week.. the planes shoes we scored.





And after the failed attempt of church, my frustration was out of control. I was over with the week so I figured why not scrub the floor, so that I didn't eat 400 pounds of cookies



The holiday plans at the movies

Please?

I came home from work tonight, tired and so sick of MEAN people only to find my inbox full and comments on other sites about how rude I am and yet it was totally misunderstood.

I commented on a persons blog about how I didn't understand how they didn't qualify for a specific medicaid waiver. Their son is on a trach. This waiver is for technology (trach) dependant kids.

I was not in any way saying that I felt this mother had LIED to others about their dire need to make ends meet with a medically fragile child. I was in no way ASKING or DEMANDING that she "prove" to me or any one else. I was HONESTLY shocked that they didn't qualify. The state only requires that the child have no assets. As a three year old, he definitely doesn't have a porshe.

The comment was taken that I was being rude. I was not being rude. When I was attacked about my comment ( 23 comments later) I defended myself. I was also told I left "rude anonymous " comments on another women's blog. I did leave a comment on a blog AFTER she made fun of short buses and I spent the night in tears over it and I told her I thought it was rude. That was over 2 months ago. 2 months.

Yet she still bashed me on this other women's site.

I received 57 emails total of women telling me I was rude, I purposely hurt my child, didn't have enough faith to "cure" him of his ailments.

I was told I didn't understand how this family could possibly have medical debt.

I was told I was uncompassionate and a horrible person.

I cried.

I am NOT a mean person. I am not a rude person. I have learned to stand up for myself and fight for my child.

I try so hard to help as many people as I can.

I would NEVER ever purposely hurt Tyler. EVER. I did not cause the blunt trauma to his shunt to cause it to break. I did not WANT to have a sick child. I didn't do anything to try and have a child with a disability so that people would feel sorry for me. I do not hurt him. I LOVE him and only want what is best for him.

I don't care if you don't like me. But PLEASE don't' ever think that I would HONESTLY think a mother isn't doing all she can to help her child. If you really think that, then you don't know me.

Please don't talk about me to other people if you are not willing to privately email me and tell me your concerns even after I have emailed and apologized to you.

Please..

Taking things out of Context

A little over 3 years ago I was 25 weeks and 3 days pregnant. I was in labor. We were poor. Dallas and I had just gotten laid off from the same company. We had gotten to keep our insurance till October 1st. Tyler came and we had no idea how we were going to afford it.

We had purchased a small insurance plan from the University of Utah because I was a student there. The plan was just to cover my prenatal visits. It didn't cover catastrophic deliveries like we had.

Tyler was born. He was not breathing. He needed more care than Alta View could give. He was life flighted to LDS hospital. The life flight was really expensive. Like 10 grand grand for a 3 minute flight. He was on a ventilator. He was in a level 3 NICU. One on one nursing care.

I had a c section. I had blood clots under it. I had to have one on one nursing care to get the giant wound to close. I then went on a Wound vacuum. All the while we had no insurance.

In October Tyler was life flighted AGAIN to PCMC. He was treated for Hydrocephalus. He had his first of several brain surgeries. He was still on a ventilator. He still had one on one nursing.

In November I had surgery to close the wound that was caused as a result of the emergency birth. Ty was still in the NICU. He had endured eye surgery and was finally of a ventilator. He was still in a Level 3 NICU. He was sick. We were still unemployed.

The bills kept coming in.

Ty got medicaid finally. We got 30 dollars a month because he was considered institutionalized. The medicaid was for one year. It only covered Tyler.

In December we finally get our baby home. 93 days in a level 3 nursery. 3 months of bills. Open heart surgery, brain surgery and eye surgery in those 93 days. Countless brain scans, ultrasounds, meds, TPN, ventalators, cpap and oxygen. Diapers were being used, wipes, binkies, hand sanitizer, blankets etc. All things we paid for.

In February we were back in for surgery. A skull reconstruction. A neurosurgeon, pediatric anesthesiologist, pediatric radiologist and nursing care. This included a 3 day PICU stay and a 3 day Infant unit stay. Meds, diapers etc were all charged to US!

April we were in the ER at Cottonwood hospital then transported AGAIN to PCMC. Emergency brain surgery for Tyler. This included CT scans, tests to figure out what was wrong, a stay at the hospital. Meds, diapers and we were back on oxygen.

We had a month of CT scans, ER visits, Daily doc visits because he was crying all the time. We had meds we filled, appointments to go to and our own doctor appointments to attend to because of the stress we were under.

May we had yet another brain surgery. Including more scans, xrays, docs, anesthesia, radiologists and another stay at the hospital.

From the day we were sent home we had weekly weight checks, visits and a myriad of other follow up appointments. All bill to us in some way. Things medicaid didn't pay for. Things that we couldn't pay for.

Ty loses his medicaid. We still have speciality formula to buy. He is still underweight. We make to much money for help. We still get all the above. We can't pay for it. We know that. We do the best we can.

Tyler then has to have Brain surgery again. A total skull reconstruction. Another PICU stay. Another hospital bill. Another set of bills to come to us.

We get synagis for 2 years. That is 3 grand a shot. Ty gets 2 of them a month. We have 3 specialist visits a month. We pay out of pocket for Physical therapy because early intervention said we didn't qualify. We paid co pays for 3 visits a week for several months. We have gas to pay to get to these specialist.

We got pneumonia 2 times.

We moved to a new state. We had to wait to move Tyler and I till we were cleared to move by our neurosurgeon.

This doesn't include all the other things that come with having a sick kid. We didn't make a lot of money in Utah. We chose to not pay the bills from the docs and hospitals. We hired a lawyer because of the debt we incurred. We were filing for bankruptcy. We made to much money. We were stuck paying of the bills. WE ARE STILL STUCK WITH THE BILLS.

We still do care for Tyler. We still pay out of pocket for things.

I don't have a problem with people getting donations from other people. I don't have a problem with fundraisers happening to help get things paid for. I don't mind. I have participated. My sister had fundraisers for a kidney transplant. We have had to get help from others.

I don't mind people blogging about their experience. ( um.. Hi! I have a blog) A lot of the time I can finally relate to someone. I get hate mail. I get comments that I am Negative. I get emails stating I have not done enough for my son.

I get taken out of context and when asking if someone has seen or tried for a waiver for medicaid I get people saying I don't get what it is like to have a sick kid. I get people telling me I am insensitive. I get people saying that I am mean.

I might be walking in your shoes. I do walk in my own and you don't walk in them. I read and try to understand where you are coming from. I am sorry it was taken in the wrong way. I don't think you are not doing all you can. I welcome new treatments, insurance advice and other things. I am sorry you thought I was being rude.

I won't be donating. I won't be giving them money. I will pray for them. Their lack of compassion for others and knowing that sometimes what they say are being construed as rude or uncompassionate amazes me. I hope they realize that a comment or a suggestions or even a small amount of misunderstanding is not meant as you are not doing what you can. Why won't I donate? I want to. I do want to. I won't because compassion is not always returned. Instead things are taken out of context and mean things from your readers are thrown at me when they have not seen or heard my whole story either.

The week.

Yes there were frequent updates and that is good. Why is that good? I hate that all you people who I read don't update but once a week. So start typing so I can stalk and read you.


My most interesting stuff happened at the end of the week. However, I LOVE getting packages ( Hint to anyone who wants to send me stuff!!) and have now become a frequent stop by all of the mail carriers in the area. I have received packages this week from EBay, Overstock, some random electronic place ( yeah not mine) and another from amazon. So yep we are friends with them all. To bad they doorbell ditch!!

So what did I get? Amazon I ordered a few new books. I have enjoyed a series from a lady named Beverly Lewis. She writes about an Amish community and I am on the last of a 3 part series. I really like them

Got one from Jodi Picoult and can't wait ti try it. And of course a Baby Einstein. It is a puzzle shape book. And I have currently found the triangle and square in the kitchen. Not where it is suppose to be.

EBAY!! I love that thing. Now, you can't laugh at my purchase. ( Well you can but be nice) I won a auction for the re-release of .......... Richard Simmons "Sweating to the Oldies." 20 year anniversary on DVD. Why you ask... I needed a workout video that I can do with Ty. I need to start moving so I can have a lower risk of early delivery ( when I decide to have a baby.. I mean WE decide to have a baby) Man it brings back memories... Miss Barnes !!!!!

Overstock brought me my bed set. Love it. Better than I thought it would be. The bed skirt was a queen and not a king so they are sending me a new one. But everything else is great and I love it.

The rest of the stuff was Dallas' and I am sure he enjoyed every bit of it.

The rest of week was kinda blah till Friday. Friday was SOOOO funny.

Dallas has a issue with is neck. A bulging disc or something like that. You can read about it on his blog and what they do for it. Anyway he had another procedure done to help it feel better. He has done this before and this time was a little different. It early early. (For those that don't know us or him we do NOT do early early. ) He was way more out of it. They came to get me to try and get him to wake up. The started asking him questions. Random ones and he would try to answer and then fall asleep. It was so funny to watch.

As they sat there they asked me to help him get dressed. He had on a hospital gown and I went to untie it in the back. Got it off and started to help him take it off. He grabbed my arm and said "ok baby, now it is your turn to take something off!" I snickered and you could hear giggles from behind the sound proof curtain. He then put his hand on my cheek and said "I love you baby" he was so "not" Dallas. It was SOOOOO funny .

As they started asking him questions again they asked him how big his baby was. He said 1.5 oz. I corrected him and he looked at me kinda sternly and said " I guess it depends on who you ask"

He was so funny. He told me he wanted toast for breakfast but couldn't stay awake long enough. He finally got enough sleep to function and was back to Dallas. He was so funny.


I also was able to clean the kitchen from top to bottom, the front room from ceiling to floor and part of the outside with Dallas. Ty spent the day in and out and LOVED it. We had to take a shopping trip to walmart where I was able to get Ty's glasses fixed and get new pillows for the bed and off course groceries. Ty loves the store. Every cashier comes out to see him and the bakery and deli people always gives him cookies.He wore his glasses so he was nice and perky and looking all over.

Today I worked and Dallas was so kind to let me sleep in. It was so nice of him. Ty decided to be super clumsy and fell a lot today and got owies ( or BOO BOO's) but took them in stride. Dallas and Ty surprised me at work and Ty wanted to get down. I set him down by a register and he WALKED over to the soda case and opened it. I was so excited to see him walk that he got a soda!!

Anyway.. that is the story of us this week. If you made it to the end I hope you laughed like we did. Good night and hope you all have a wonderful week!!