10 years

2013 marks the 10 year anniversary of my service in AmeriCorps. What an amazing 10 months it was! So every so often I'll post a tid bit from the past. If you don't like it too bad. I want to do it :)

This first one is actually a poem I wrote in a English 101. Looking back on a seemingly small but important event.

Red Wings
I opened the box and my eyes lit up
Boots of my very own, Red Winds were their name.
Brand new rubber soled,
With seven inches of leather.
I slipped them on with glee,
They fit just perfectly.

I laced them up good and tight.
They were still a little stiff,
But the day had just begun.
The hike wasn't too long
Only a mile or so, but I could tell
There boots might not do too well.

When we stopped to get ready to work
I took some time to re-lace my boot.
Not so tight this time
I hoped it would help.
There was still a long day ahead
And I was far from a bed.

We worked all morning and afternoon,
I tried to put up a fight.
To forget about the seams
That had rubber their nasty little faces into my foot.
The burning and aching almost made me cry.
Sometimes during the day I thought I would die.

After work we all came home.
I took off my boots with a sigh.
Next off go the socks
Followed by a terrible stench.
I pulled my left foot into my lap
And I saw something and gave it a tap.

That was it, the trial of my day,
A big fat blister on my toe.
I put some ice on it
To ease the pain.
I thought about cutting off the toe.
That would end my woe.

Six weeks went by in a flash.
The blister was a fadded memory.
It was time to leave,
This place we called home.
Now my boots were broken in,
And they were like second skin.


---By the way I still own these boots and love how they feel. 

The New Normal

Well Rayne and I survived another trip to Birmingham on Tuesday. It wasn't too bad, I think. I'm still adjusting to some of the news and we are still waiting for lab results to come back.

In general Rayne is doing okay. She is almost back up to 23lbs (she had lost a little weight during this last illness), and she is just shy of 33inches. Both stats are on the growth chart!! Wahoo!!! Rayne was also healthy for her appointment which was surprising for the Pulmonologist. He asked what I did and I told him Rayne just finished an antibiotic a few days before. The doctor laughed, smiled and said "Well that makes sense". I teased back that she'll probably be sick in less than a week, that's just how it works.

Which brings us to the main point of our story. Given Rayne's first round of lab work, her reaction to the Pneumonia vaccine, and the fact that this last cold didn't go away until she had a steroid and an antibiotic she definitely has an immune disorder. How bad it is we have to see how the repeat lab work comes back.

Now when most people hear immune system issues they think autoimmune disorders. Autoimmune disorders attack cells that are supposed to be in the body leaving nothing to attack the bad cells that invade the body. Making the body weaker and unable to handle illness well. Rayne has the opposite problem an Under reactive immune system.

Under reactive immune systems don't activate when a virus or infection invade the body. The virus or infection can sit and incubate for days or weeks before the immune system kicks in. But of course by then it's too late to kill the virus without the help of antibiotics and in Rayne's case steroids too. The other down side to the under reactive immune system is that it may not react to a vaccination properly. So if if Rayne is to get a vaccine it may not protect her from getting the illness.

What does this mean for our little family you may ask? Well it means we have to be a bit germ-a phobic.... urg. Fred and I have always been great believers that kids need dirt. That kids need to play outside, that it's okay if there is a little dirt under their nails every so often, that the house doesn't have to wiped top to bottom every week with bleach, bussed restaurant tables are clean enough, and if a kid at church as a runny nose it's okay to play with them. Well we have to change our way of thinking. Yes Rayne can still play outside but hands have to be washed/ and or sanitized a lot more. We have to work on keeping the house and pets cleaner. Wipeing down the places we sit and eat when we go out. The biggest things is we have to minimize Rayne's exposure to illness. Fred and I have to do the best to stay healthy, and not pass on anything we may pick up. We have to be careful about the kids play with Rayne and if they have runny noses or lots of coughing we have to try and keep her away. Pretty much we just have to act like parents of a newborn, but with an active toddler. Yup no challenge there...

What this means for our friends and family. Be prepared to have us come behind you to clean, to ask you to wash your hands, to see if you have any hand sanitizer, or not stay very long if you or your child is sick. Oh and we may smell "weird" because of the essential oils we use to try to keep everything at bay. We don't do any of this to be offensive but we have to do everything we can. As it is Rayne will probably be starting a low dose of daily antibiotics to help boost her immune system. But the more she is on antibiotics the more resistant she will become. Amoxicillin  is already non effective, and she has a long life to live yet.

In the next week or so the lab results should be back and we will know if anything else needs to be done. As for now this is our new normal.

pH Probe- So old.

This is an old copy for some new friends to see. 

Looking back it is almost surreal. I hardly know what happened when; if it wasn’t for the record keeping I’d probably be clueless. But I’m getting ahead of myself.

walking around at night

Monday we drove down to Birmingham, it was a nice sunny day. After admission and check in we were ready for the pH probe. Anyone who knows Rayne, should know she HATES medical professionals. I swear she can smell it in people. And then they whip out a stethoscope oh by golly you have a screaming baby. By the time we got up to the GI Lab Rayne was already pretty upset. First she had to have arm braces put on that kept her from bending her elbows to get to her face. Next she was strapped down to the table. As much as she kicks and screams I would rather have her strapped down than try to hold her. The probe was then fed through her nose and down her esophagus stopping right above the sphincter. A quick x-ray to verify position, and an adjustment of the probe it was securely taped down. The test had begun. The short lived upside was Rayne could now it. It had been nearly 4 hours.
It was a short lived upside because of the arm braces. Rayne could not hold her bottle; it was too short for her to get at. And of course being the stubborn child she is me feeding her was out of the question. So during the 45 minutes that she was allowed to eat Rayne managed a mere 1.5oz of milk. Yes I said 45 minutes allowed to eat. That precious 45 minutes would only come every four hours until the test was done. And those would be the only time she could eat or drink.  As if having a tube down your nose isn’t tough enough, arm braces and eating restrictions are now in the mix. Poor baby.
Oh and then there was the record keeping. I had to track when every eating time started and ended. Also what time she was sitting/standing up while she was awake, laying down while awake (all clothing and diaper changes), and the same ideas for sleeping, what time she would burp, cough, vomit or have pain. If the paperwork was not with you it can be very hard to remember when things happened.
In between eating times we’d go for walks in the main lobby. There was people playing Christmas music most of the day, wonderful decorations. And of course the stairs, the nice long stair case that was about three stories high. That was a lot of fun to watch Rayne go up and down them. Remember she couldn’t bend her arms. So it was something to see.  She would get tired after about 30-45 minutes of play. So we head up to our room.
Even though we were on the fourth floor our windows looked at the tops of other buildings L But with a TV/DVD combo Veggie Tales were easy to fill in the time gaps. It also gave time for mommy cuddles too. During meal times we could take of one arm brace to let her eat but we had to watch like hawks to make sure that the probe didn’t get pulled at.

I swear the pack weighed as much as she did.

The overnight… well that just stunk. Rayne is used to getting bottles to go to sleep and when she stirs in pain we would give her a bottle to help soothe her. If you had reflux in the middle of the night wouldn’t you want something to drink?? But I couldn’t give her anything. So we walked….walked… and we sang as we walked… and walked (anyone get the random reference?).  In total I spent around 3 and 3.5 hours walking the halls of the hospital keeping Rayne calm and sleeping as much as possible. Finally around 5:30 is when I laid down to sleep, with Rayne propped up in my arms. I woke up around 8 and Rayne woke up about 8:30 am, Rayne was done!!!! She was hungry, tired, sore, and probably angry. She screamed and cried until it was time to eat at 9:30. Once she got her milk she was happier. Then eggs, cherrios, and strawberries were gobbled up. In the middle of breakfast we got a call from the lab. They had someone coming in for a test at 11am. It would take over two hours. So they had decided that they were going to come early to take the probe out. YAY!!!!!!!!!!!!!!!!!!!!!
Probe was out and we were discharged by 11am.
Dr. King (the Gastroenterologist) did stop by a couple of times. And unless for some odd reason Rayne’s test comes back with a perfectly neutral pH level of 7 he will be sending her in for surgery since we don’t have another other medical options. But this test lets us know what to expect of the surgery. If Rayne’s levels are BELOW 4 (highly acidic) a lot of the time then surgery will be a practical cure. If she is in the 4-5 Surgery is still call for but we can only expect it to be say 80% effective. So she may need mild meds to help out. But either way it would be a great improvement from the current situation.
The other reason for the test is for the surgeon. Dr. King believes that surgery (especially this one) is more of an art than a procedure. So he only likes to use the best available, who requires this test. In the long run I’d rather suffer for a day and get the best then just take any ‘just let me cut’ doctor.
Having mom there was awesome. A complete life saver, I didn’t have a clue what to expect this time around so she helped me figure out where everything was and who we needed to ask for certain things.  So during surgery if I’m there by myself well I’ll know what to do. She was there to let me know I could do this oh and she put up with me snapping at her when I was just past exhausted.
During our stay as hard as it was I felt so blessed the entire time. At check in the girl in front of me was 17 and battling Cystic Fibrosis. In our wing there was a little girl 7 years old that was brought down that day in near critical condition with Juvenile Diabetes. She also had a 5 week old little brother that had the flu. That poor mom was having a very hard day. Then of course the next wing over was for restricted access cancer patients. Sure life can be hard with Rayne but boy are we blessed. She is such a wonderful little girl with a great spirit and attitude. Heavenly Father has entrusted me with His daughter and I have to treat her like the princess that she is.

Update: Rayne passed and did not need surgery a scope showed another issue entirely. 

The Long Of It

I hate it when I go to Birmingham when it’s raining. The only other trip it was raining was that first trip down. On that time we found out about all the tests that we would be doing. And what was in store for our little one. All subsequent trips weren’t the easiest in the world but the sun was shining which made it a little easier. Tuesday though was awful. There were tornado warnings and flood warnings, I just knew this wasn’t going to be a good day.

After my surgery on October 17^th Rayne started to get sick. Not too bad at first but it slowly go worse. There was a lot of vomiting, crying and doctors involved in the process. It was a virus that reeked havoc on our little girl and left her with a paralyzed stomach. Paralyzed stomach is often temporary after a virus and just means that the body says “I’m taking a break. Don’t bug me” So Rayne was on a liquid diet for just about a week and then she started to eat. And I mean eat! She would eat almost as much as I would at a meal. Almost a week this lasted and Rayne put on two pounds. Then she stopped.

Honestly we expected it to happen eventually. It was just so much food we thought that maybe she was just trying to catch up. But she started to get really fussy and acting like her reflux was bothering her. Rayne didn’t want to lay down, she would arch her back pick at and pat her chest all day. The oddest quirk was that when I would snap up her sleepers at the top most snap she would fuss. We made sure that all doses of meds were given on time everyday (Prilosec twice a day, Axid three times a day, Pepicd once a day). We even through in some extra doses of Carafate which coats everything and is more about comfort than suppression. This didn’t help. I called the nurse at the Gastrointestinal doctor and she said to try giving the Carafate an hour after her other meds. It could be coating enough that her meds aren’t absorbing. We gave it a week. We were a little better but if a dose of anything was missed heaven help us all. There was no way around it Rayne needed to see the doctor.

Tuesday it rained, and rained, and rained. Our appointment wasn’t until 4 so I closely watched the weather reports and decided to pack enough things for us to stay overnight. Besides the weather I didn’t know what the doctor was going to do. If we needed to stay to run a test I wanted to be ready. It’s a 90min drive each way I didn’t want to have to come back for a test if I didn’t have to. The whole drive I just knew something drastic was going to happen that day and as I started to pass car accidents requiring tow trucks and ambulances I started praying really hard that an accident wasn’t it. We made it to the doctors safe and sound though.

Rayne weighed in at 18 pounds 2 ounces 28.5 inches long! Later I found out she made that chart with that, 1%. WAHOO!! Once the Doctor King got into the room I could tell he knew what his next move was. Sometimes I hate that feeling, because well it’s not always an easy thing the doctor is about tell you to do. Then came the words, “I think it’s time for a Fundoplication.” I had heard this word before and I knew it was a surgical procedure where part of the stomach was wrapped around the esophagus to help the sphincter close properly.

The reason we have to do surgery is that there is no other medical option. Rayne is maxed out on all of her meds. With this much medication she shouldn’t need the Carafate five times a day, a month ago we didn’t have to. Something has changed, what no one knows, but medicine isn’t going to cut it anymore. There is no point to Rayne suffering until she ‘grows out of it’ because that often takes years. Anywhere from 3-6 years. Not only is that hard on baby but mommy and daddy. Giving meds 8 times a day doesn’t get any easier as a child gets bigger. Also Rayne is still classified as failure to thrive. Which is not uncommon for kids with sever reflux because the meds can block nutrient absorption and they don’t want to eat much because it hurts. So it made sense.

Then Doctor King said, “That’s not the bad news. The bad news is you have to do one last test before the surgeon I want to do it will. It is called a pH probe.” He then went on to explain that I would take Rayne to the hospital have her admitted and she would have a probe fed down her nose through the esophagus and it will sit right at the top of the stomach. The probe stays in for 23 hours. It measures exactly how much, how often and how long acid gets out of her stomach. This is for a definitive diagnosis and the surgeon wants it because he’s not one to cut someone open just for the heck of it. And as I’ve read about it, this test can also help with some of the decisions the surgeon has to make. It’s no fun to have something down your nose and to make it even more awful Rayne has to be off her suppression meds for FIVE days before the procedure. Thankfully we can still use the Carafate every four hours but still, it’s going to be a long week. We are trying to get the test set up to happen in Huntsville because it would be so much easier on us, but we will see.

After the pH probe it will take a few days for the information to be complied and then we will make an appointment with the surgeon and set up the surgery. The surgery itself is an hour or less but will require a two to three day stay in the Children’s Hospital in Birmingham. They have to watch for complications and in infants it is not uncommon to put in some kind of feeding tube, since they have no desire to eat. But we will get more information about that when we meet with the surgeon.

Right now we are in a holding pattern because of the holidays. Most offices were closed so nothing has been scheduled and we have no idea how quickly this will happen. It could be all be said and done by Christmas or surgery may not happen until January or February for all we know.

So for now Rayne isn’t eating a lot. What she eats she keeps down; thankfully she was never one to spit up because of reflux. Only when she’s sick do we have problems with things coming up. And the doctor told us to give her whatever she wants to eat. If she wants all pasta let her have it. It’s an acid absorber, but more importantly it will keep her happy. Fruits and vegetables can be hard to digest so if she doesn’t want them don’t force it. Just keep her from losing weight and hydrated. Also if she wants to sleep sitting up or on top of us, just do whatever we feel is right and keep her as comfortable as possible.

You can also check out these link for more information
http://www.youtube.com/watch?v=J8ATpSWQrIE
http://www.youtube.com/watch?v=9bnIuKiHdDE