Sunday, February 17, 2013

Baths

My kids are sweet. They really are. And unbeknownst to me they cleaned their bathroom and made it super nice so I could have a 'spa' by taking a bath. The only problem is I hate baths. I think they're gross. But they were so happy to bless me with this surprise how could I turn it down?

So I did what every good mother would do. I bleached the heck out of the tub, filled it with as many bubbles as I could find, lit every single one of the 17 candles they put in there (ok maybe it was only three), and called them in to see how much mommy appreciated it. Then I sent them away so I could get in. Or so they thought. I'm really just sitting on the back of the toilet typing this on my phone.

No I'm not. 

I do love my kids and am thankful they love me and want to please and bless me even when I stink at showing them my love. Right now I better put my phone aside before I dunk it accidentally into this bubble bath. Plus I've been in here for about 2.5 minutes and I think that's plenty.

Saturday, February 16, 2013

What do I know?

Where have I even stood but the shore along Your ocean?

I never think about how small we are. And by 'we' I mean our planet. But this morning (we're talking FIRST THING as Ben came home from work and I'm still rubbing the crusties out of my eyes) as Ben was explaining to me fission and fusion and atomic bombs vs. hydrogen bombs [all of which I remember ABSOLUTELY everything you said, hon....] I got the vision of being pulled far far back into outer space and looking at the earth. I forget that we're just sitting in outer space. Just floating ever so small surrounded by endlessness. 

Disclaimer: I am by NO MEANS anything near a scientist. I don't even really like science so bear with my probably technically incorrect words. I'm just trying to give you a picture, not give you a degree in chemistry.. or physical science... or biology... or whatever it would be. What's the study of space again? JUST KIDDING. 

Our universe is limitless. I can barely fathom our oceans let alone our galaxy, our solar system, or beyond. Don't worry, I'm bringing us back to earth - our feet planted on the ground (because of gravity- I just learned that this morning. JUST KIDDING again.) So I'm thinking if the biggest thing on this earth that I can imagine is the ocean; if I can be out to sea and not see anything but more ocean for days on end; if even the 'tiny' waves at the beach scare me beyond all reason, what do I know? 

Clearly I have a brain. I say this not because I'm super smart.... (hush) but because I'm a human so by default I've got one. And I am capable of knowing a lot. We are all (Questionable. Maybe not all...) capable of knowing so much. But how much do we know that really matters? If (and I'm sure I will diverge with a lot of you at this point) but if I believe that we have a Creator of the universe, our solar system, our galaxy, our planet, our oceans, and me- and He is the same Creator, then how can I question? Or complain? Or grow impatient? I can't even fathom our physical planet. Does anyone know how deep the ocean is? Or all that is down there? Has anyone ever counted the stars? 

THERE IS SO MUCH WE DON'T KNOW. 

And not only do I believe that we have a Creator but I believe that He is intimately acquainted with me. He loves me. And If I can't fathom all that I see around me there is no way I can fathom His love for me. Or His plan. Or what He is capable of. If I stood on the shore of the ocean I would not be able to see the other side or take it all in. It appears endless even though I know it has an end.

Sometimes my life seems like that ocean- the future, my pain, healing that has yet to be done, uncertainties, fears, etc. And instead of believing that God created that ocean and that He knows and holds all that is within, I say "No way. You don't understand. I can't. Why haven't you changed this yet?" And He says "When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, Nor will the flame burn you."- Isaiah 43:2

I have only beheld the tiniest tiniest glimpse of God. And I dare question? He is larger than the ocean or the universe. And He loves me. Himself and His love for me are not like the ocean - they have no end. And the best part is that I am who He wants to glory in. The stars? Big deal. The planets? Big deal. The ocean? Big deal.

ME. 

It doesn't always feel like it, no. It doesn't always appear like it. But those things are like the ocean. They DO have an end. And if I travelled across the ocean I dare say I would not be the same.     

    

Wednesday, February 13, 2013

Language and Adult Content.

This post may not be appropriate for all viewers. Viewer discretion is advised because I'm not sure how well I'll be able to hold my tongue. So, if you are a child- stop now. Go tell your mommy I have lost my mind and don't look back. 

I'll start with the good news. We are home!! We got home Monday evening. Hematology gave the go ahead to pull the central line over the weekend and by Sunday Theodore was back to baseline everything. Monday came and almost went with us still in the hospital waiting for his blood thinner prescription, but thanks to his great nurse that day (Thank you, Tamieka!) she was able to figure out a way to get us home sooner. She even went down to the pharmacy herself to pick it up for us. 

Of course the usual chaos ensued at home of unpacking and organizing and cleaning and blah blah blah. Thankfully Ben had cleaned the house for our return so that part was a great welcome home. I will never understand the emotional highs and lo's of getting back from the hospital. Everyone is so amped and excited which causes for bickering and crying and stress.... but things have finally evened out and we are adjusting

UNTIL...... (this is the unrated part.)


hurt
my 
toe.

My effing already hurt toe.

I'm not sure if I have ever mentioned my toe before because it's been a while since I hurt it - because I protect it like it's super fragile gold. I am always on the lookout of any danger constantly saying "Watch the toe!" Long story short: I majorly hurt my toe when Ruthie was born. From that point on it has been my weakest link. I have dislocated it several times, broken it, chipped the bone and have a bone cyst. I can't jump without shoes on. I can't get a regular foot massage. You can barely look at the thing without hurting it. Last night, I hit it HARD on Theodore's wooden rocker. Each time it get hurts, as dumb as it is, it is truly incapacitating. Excruciating pain goes through my entire foot. I have to crawl ever so carefully around the house. You can't even jostle my leg without sending shooting pain through it. It is a nightmare. 

How in the world that damn rocker picked that one toe I will never know. There's an entire foot it could have hit! That's quite a bit of real estate, but it chose the one spot that would leave me writhing. 

Seriously?

It was 10pm so Ben was at work, the kids were all asleep (except Theodore which meant standing as long as I could on the other leg coaxing him to sleep only to not quite get him there and have to sit.... starting the entire process over again.) I crawled up the steps on my hands and knees last night once the nurse got here. Iced and ib'd up and it's almost bearable.  I've been prescribed vicodin and other such meds for it before but nothing quite touches it completely.

I'm not going to lie: I have seriously considered amputating the thing. My plan was to get it cut off, put it on a necklace and wear it all the time as a trophy of my victory over that damn toe. It can not keep me down!!

Except that it does. Every single time I hurt it. And it keeps me down for at least a week, usually more. I'm stuck with just letting it heal awkwardly on its own over time so that I can damage it again at some point and start the whole awful process from the beginning again. I really think one day it just might come off by itself; break the already weak bone clean through, if it isn't already, and then it will just be hanging on by skin and some other stuff that I'm sure isn't that important. At which point I will take a pair of snips and just get rid of it myself.

Ben came home this morning with a coffee, an ice pack, and some tape. He buddy taped my toe, put me in a boot to protect it, and carried me downstairs. Good man. I wish he was super human and could go without sleep. 

I really wonder how in the world my life could get more difficult. Of course I wondered that yesterday and BAM. Oh yeah.. I guess that's how. 

Maybe there is an end in sight.

I'm trying not to let this steal the joy away from being home but the only thing I can think is "Ouch!" We will survive. I'm sure. We have up til now. In the meantime I'm hoping to make as few trips across the house as possible and keep my feet up- literally. School and housework will just have to wait. Again. 

*I held my tongue pretty well.  

 

   

Friday, February 8, 2013

2.5 inches

That is the size of his clot. 2 1/2 inches! This miraculous clot that appeared in a day and a half is like an enormous slug stuck inside his vein. And, apparently, it's covering multiple veins. Awesome.


This little man does nothing half way. The ICU team spoke with hematology yesterday and were told to leave the central line (what caused the clot in the first place) in for 5 days because the chance of dislodging the clot while removing the line and causing an embolism was too great. How he even got the clot is a mystery since he was on preventative blood thinners for that very reason in the first place. So his dose has been upped from preventative to treatment. Whether or not hematology will want to look further into what is causing this is unsure right now. All we know is that it's rare for someone his age to get clots at all, and even more rare that we were actively preventing it when it happened.

Thankfully today little man is much happier. I've seen several smiles and his normal happy self has been appearing today. Yay! Finally! The past few days I've started like this


 
and ended like this
 
 

 
 
Buttons are overrated. And, although I don't have a picture, I can assure you that my mother in law is just as fragged as I am. So today, thus far, has been a nice break from the uncontrollable inconsolable mess we've had on our hands.
 
And Theodore, as fussy as he is or isn't, is most undoubtedly a male.
 
 
 
Always aware of what's important.
 
We've had some ups and downs but right now it looks like we're in an upswing. The flu is no longer his biggest trial and as long as this clot doesn't give us any funny business (like say, dislodge and travel to his lungs) we're hoping to get out early to mid week next week. But, seriously, pray that his clot doesn't dislodge.
 
 
 



Wednesday, February 6, 2013

Spoke. Too. Soon.

I have done it again. Timeless times I have told myself to keep my mouth shut. Just keep your mouth shut, Amanda. It's not that hard.. you wouldn't think. I think I need to start listening to myself a little better.

The very day (THE VERY DAY) I wrote that last post guess what happened. You don't even need to guess. You already know I bet. Yup, Theodore got taken to the hospital. He started with a low grade fever so we started his meds, alternating every three hours because we don't play games with him. What did the fever do? It kept climbing. And he got more and more miserable as the hours went by. By 8pm his fever was 104.4. Just two hours early it had 'only' been 102.8. So we did what every body would do.

We packed his stuff, our clothes, the kids clothes and set off for the hospital. A trip to our local hospital always means a transport to Hopkins so we dropped the kiddos at my parents and got the works started. Not long after getting there we were told that he was going to Hopkins (duh) and they were going to try to get an IV.

Hold up.

You can NEVER get an IV. I know he needs fluids (by this point he hadn't had a wet diaper in many hours) but there are other ways we can do it. Well, they tried anyway. And they failed. Then the doctor comes in and tells me that he's been on the phone with Hopkins and they both fear that he might be septic so it's imperative we get a line. He would try with an ultrasound but if that failed they would have to do an IO. That, my friends, is a needle to the center of your bone.

So he tries with the ultrasound. Twice. And he fails.

Which leads us to an IO. Did I mention that's a needle to the center of your bone????

All this time and all we've been through and he has avoided an IO. Just add it to the books, I guess.

They had called for the helicopter which went up for us but came right back down because of weather. And because the ground transport team from Hopkins couldn't leave right away they had to send a different team. A less ideal team. But to make a long story short, we made it to Hopkins. I won't say unscathed because that would be a bold faced lie, but we made it..... alive. Barely.

As soon as he got to the PICU he was looking pretty rough. They decided to give him a central line (in the opposite leg than the one the central line caused a clot in last time) and get him doped up and on meds.

It all worked quite quickly and within 24 hours he was looking much much better. This week we have been able to wean him off medicines and vent settings. And despite not being able to find an infection *anywhere he has been improving.

Until today.

He seems to be getting good oxygen and doing well in that respect, but he was getting increasingly aggravated as the day went on until he became absolutely inconsolable. We're talking thrashing from side to side, arching his back, refuting all your efforts, crying, etc... We had just gotten him down to his home vent settings when all hell broke loose.

We left the hospital tonight with vent settings up, a shot of midaz, a shot of fentanyl and the doc in the room pushing some white miracle drug to keep him calm. Also, talk of most likely starting the drug drip again with a secondary drug on top of it. All the work that was done has just been undone and now it seems we are almost worse off than before. Not to mention that although they have already done one ultrasound of both legs because of swelling to be able to rule out clotting, they are redoing it tonight because one leg is going purple on and off and also becoming taut with the swelling.

It has been a long day. A long day on top of a long week. I just want them to keep the boy knocked out so he can get some rest and we can all regroup in the morning. JUST KEEP THE BOY CALM. Thankfully we had a super nurse who was familiar with him and really pushed for us. She was great.

I'm not too sure what tomorrow will hold. Hopefully better things. My heart breaks when I know there is something clearly wrong but we can't figure out what it is. For now I am off to bed. I can barely type.



*All the cultures came back negative for infection but some bloodwork showed clear signs of infection. Go figure. Rambo can never do it easy. However, last night the lab called and said a test came back positive for flu. Which is weird because the other hospitals test said negative and also because viral panels usually come back quickly... so they say... and this was several days later. Who knows....

Saturday, February 2, 2013

The Mommy Syndrome

It's supernatural really.

It's how everyone in the house gets sick and mommy makes it through less blasted than the rest.

It's quick recoveries.

It's a blessing and a curse simultaneously.

The past few weeks have been quite up and down in this house. One day everyone is fine, the next someone has a fever. A cough has been about the only persistent thing. It starts with one victim then moves onto the next and by the time it's made it's rounds, something new has come in. 

It's cray cray.

Thankfully, everyone has kept their spirits high. And today is actually a great day. There have been no fevers in days and the kids are well. The problem the past few days has been Ben. 

Who does that surprise??? 

Poor guy doesn't have a fever but is on the cusp of pnemonia. As well as his ears and sinuses being infected. We got a double antibiotic from the doctor yesterday and he finally got his first night's sleep in about 4 days. 
He's m i s e r a b l e.

And where does all this leave mommy? Doing what mommy does best - taking care of everyone. If you have a fever or pnemonia YOU DON'T TOUCH THEODORE. It's an abomination. That immediately has taken Ben out of the equation. The kids have also had minimal contact because of their stuff, but thankfully they are now back in the picture to help. And somehow, mommy, who was fighting sickness for a day and a half has miraculously come out the other side better rather than worse (the blessing part) and is taking care of everyone as well as the normal stuff that needs to be done (the curse part.) But I must say that I prefer it that way. I honestly do not envy Ben. Plus, we're women... we can handle it. :)

Although, I do think I'm going to have a serious talk with *Pudge about this crazy weather. 20 degrees to 70 degrees to snow? Honestly. I don't think that's helping anyone around here. Could you please pick something and stick with it? 

Still, Theodore has managed to be able to stay away from the doctors and hasn't needed any extra medicine... yet. I'm hoping for the best. Today, we will all enjoy feeling good (except Ben) and have the hap -hap- happiest Saturday since... well, since the last Saturday we felt well.



*Pudge controls the weather. - Lilo and Stitch