26 February 2012

Weekly Wrap Up

After our crazy first day diving the week just had other odd things in store for me. It seemed like every time I turned around something was going wrong.
Liam gets to relax on pillows and watch videos the entire time.

On Tuesday the handle broke off the toilet in the apartment we are staying in. I had to take the tank off and manually flush it that way until a repair guy came two days later.

On Wednesday I definitely started to notice that I had some decibel loss in my hearing stemming from our very first dive and trauma from exposure to continued dives.

On Thursday the hot water tank leaked all over the kitchen floor in the apartment.

On Friday, Liam started coughing again (remember last Friday he was still doing breathing treatments for the nasty dry cough he had in order to get him healthy to dive in the first place). Two hours after Shawn and the kids arrive to visit, Shawn gets a call from work saying he needs to head to Arizona for a mishap investigation (luckily he was able to hold off on it so he could stay the entire weekend).

On Saturday the hot water tank leaked all over the kitchen floor while we were out and left a huge puddle of water again, but even worse than before.  Liam was now running a fever along with a dry cough and I now had a cough too. Rylie got a tick (we have no idea how) on her leg and it instantly turned red and the site just got bigger and redder within the next 24 hours. We're pretty sure she needs to be treated for Lyme Disease.

I just can't believe how our week went. At least we are a third of the way through with this round of HBOT. I'm just praying that Liam and I get well, stay well and there are no more surprises this week.

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20 February 2012

What I had to do

Out of a hundred different scenarios I could have come up with for our first day back at doing HBOT, what happened today was not one I would have ever had on the list.

Our first dive this morning went great for Liam. He was hyper and happy and did perfect. However, I did not. I had awoken this morning with a heaviness in my right ear but thought nothing of it. But just a few short minutes into our dive my ear would not pressurize. I tried everything to get it to release and all it did was crackle louder and start sending pains though out my ear and into my jaw. I figured it would release when we came back up to regular air pressure, but it wasn't even close.

Upon completion of the dive I had the attendant look at it and she said my ear drum was very very red. Almost bloody.

They told me to head to urgent care and have them look at it.  I got a PA who said the same thing. It's very red and bloody. You should go see an ENT.

I went to the ENT where I saw another PA who said that my ear was very red and bloody. Like I didn't know that at this point!

She called the Dr. in to have a look and he said that a blood vessel had burst in my ear canal when my ear didn't pressurize right. That's why the inside of my ear drum was so bloody because the other side of it was literally filled with blood. He dives in his spare time (in actual water) and told me that I might be fine to continue on with Liam as is, it might rupture or I could quit.

Quitting was not an option.

So he volunteered one final solution: Let him puncture my drum and install a tube. There would be no more worries of trying to pressurize it and he could then vacuum out all the blood in my ear preventing me from hearing out of it.


Ummm, I don't think so!

SO GUESS WHAT I DID? I went with that crazy option.

If you know me at all, needles are not my thing. I can handle them usually just fine, but once in a while I can't.

After numbing my ear he used a knife to cut the hole and then filled the hole with the tube and then suctioned out all the blood. I was super sick after that. I didn't realize it until he started telling me things and I couldn't grasp what he was saying. I apparently looked pretty pale at this point and I asked if I could have a moment to let things sink in.

It took about ten.

But after a cold compress, a fan on my face and my feet higher than my heart I got my color back.

I felt so silly.

But I really didn't like the while situation with him cutting my ear drum. I could hear it all and feel it all even though it was 'numb'.  Ewwwwww.

The blessing is that I don't have to worry about missing any dives now that this ear is free of needing to be pressurized.  My other ear started showing signs of fluid build up too but the Dr told me exactly what to do in the chamber to not have a repeat in that ear of a burst blood vessel.

We were able to continue on as planned for the second dive today.

Geeez, The things we do for our kids!

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15 February 2012

Love and other drugs

We don't normally do anything fancy for Valentine's Day. I've been with my husband for 18 years and I would much rather do something else with money than going out to eat or buying flowers that croak after a few days just because it's the 'day of love'. We try to get out on regular dates already so, we focus on the kids on this day and make it fun for them!

The big kids valentines hidden in plain sight.
Liam still has a fever and a nasty cough that sends him into fits of nonstop coughing for upwards of 20 minutes. It's heartbreaking. I got so upset that I finally called after hours for his ped's office and happened to get his pediatrician! She could hear him coughing and said she wanted to see him since we are leaving this weekend. So, I brought him in early on lovie day and we spent all morning there. She was running behind and when she finally got in to see us, Liam wouldn't cooperate. But from what she could tell he sounded clear in his lungs. But because his cough was so dry she had us do a nebulizer treatment. It seemed to soften up his cough some so she sent Liam home with his own brand new machine for Valentines day!  

He didn't like it.
He fought me the entire 10 minutes he had it on. It's gotten only slightly better since then.

At the pharmacy we received an entire box full of nebulizer drugs. Enough to keep him treated every 3-4 hours round the clock until this weekend. I think she means it when she says she wants him better for Sunday.

We rounded out dinner the way we do every year- a heart shaped meatloaf, heart shaped bacon, and a red velvet cake in the shape of what else? A heart.

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13 February 2012

Stem Cells in VLBW/Very Low Birth Weight Babies

      In a new study presented at the Society for Maternal-Fetal Medicine's annual meeting, The Pregnancy Meeting ™, in Dallas, Texas, researchers have reported that early transplantation of human placenta-derived mesenchymal stem cells into the lateral ventricles of neonatal rats with birth-related brain damage is possible, and that the donor cells can survive and migrate in the recipient's brain. The study was designed to have the rat's brain damage mimic brain injury in infants with very low birth weight.

 Here is the article in full.

This is encouraging news! My only concern is where the placental mesenchymal cells are coming from. It doesn't say and if it is from aborted babies then I would not want to be a part of that. But if it is from donated placenta than this would be very exciting news and give hope to the moms who experience what we do that maybe the severe brain injuries in micropreemies will be a thing of the past some day.

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11 February 2012

A guessing game.

What happens when your kid is sick? You want to take care of them right? You want to make them feel better? Kiss their boo boos, tell them it's going to be ok? But I can't do that very well for Liam. Nothing feels worse as his mom than watching him cry, get angry, wipe out from exhaustion and then do it all over again and I have no idea why or how to help.

Being non verbal sucks. He can't tell me what he feels like, what hurts, if he's hungry... I just have to guess.

He's been running a fever since yesterday and it's been pretty steady and is preventing him from really sleeping. He can't get into a deep sleep. He spent all last night fussing and whimpering. He also has this dry cough...a very dry cough. I know how I feel when I have been sick with a cough like that so I assume his abs are sore and his throat is scratchy. But, I don't really know. I'm just guessing!

Oh- And did I mention he's throwing up all over the place?

I'm currently keeping him on a regular dose of Advil and keeping him hydrated with water.  The only silver lining is that he is so dry in his mouth that he is actually enjoying drinking water again.

He has gone all winter with no illnesses. He's been doing great and luckily he has a great immune system so we don't worry too much about germs or therapists coming in and out of the house.

Thursday I took him to Dr. Kid to get our prescription for HBOT (we leave Sunday) and they gave him the rest of his vaccines that were due (did you know they moved the 5 year shots to 4 years??) and within 24 hours he was running this fever.

It was odd too because his feet were freezing on Friday morning. You could feel them through his socks. We even had him in the bed covered in the comforter and they were still cold. We just couldn't get his feet warm.  I knew it was bizarre but I didn't think too much of it. Liam was in a decent mood and him having frozen feet didn't alert my radar that he was coming down with something even though it was really weird.

That afternoon big brother said, "Mom, I think Liam has a fever."  Sure enough, it was almost 101 degrees.

So, I'm upset because he's been so healthy, bothered that he picked something up from the ped's office, or that he's had a fullblown reaction to a vaccine (not likely but still, the way he got sick was bizarre).

I do try to be thankful in all things and appreciate the fact that he is getting sick this weekend versus next when we will be traveling for HBOT.

But I just pray this doesn't last long, because he's miserable and that makes me miserable. And I can't get anything done.

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06 February 2012

Convince me

I've kept fairly quiet about the fact that I will be leaving for 3 1/2 weeks on the 19th. Liam and I are headed just north of Charlotte for another round of hyperbaric oxygen treatments.

Why have I kept quiet? I don't know.

Probably because I haven't been 100% convinced yet to go.

It's not that I don't want to go. I do! I saw the improvements with Liam the last time he went. And his therapists were able to document his improvements themselves. So, I know the hbot helps. I know it promotes healing for the injured areas of his brain. And I want to take him again.  But for several reasons I've been on the edge about whether we should go right now.

*I don't like being away from the family for so long-there is never a good time to go.
*It leaves two homeschoolers at home without the 'teacher' until their dad gets home.
*Schedules have to be altered.

*We don't even have the money to go.

And now I just sound like a whiner.

But I sent off the paperwork today anyway and am just praying my way through these issues. God is bigger than my issues. I'm praying for specific healing for Liam with his motor control in his arms, better language, and some head control because I still believe God is able.

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