Wednesday, March 28, 2012

What's the deal with sea monkeys?

Are those not the weirdest creatures? Seriously. They can be in a dried egg for like, ever and then come alive in water. Plus they are incredibly tiny - who even found these things??? And why have they been to outerspace? 

These are all questions that plague my mind. But then I realize that I don't care at all. I just know they are in my kitchen and I have one excited kid. If memory serves me correctly (Iron Chef anyone???) I never had sea monkeys when I was a kid. I don't feel like I missed out on anything I just don't want to kill these miniscule fish things that you can't even see because of lack of experience. But if they can go to space and be fine then I think we have real problems if I kill them following the instructions. That'd be a real "Are you serious, Clark?" moment if there ever was one.

Now on to things that actually matter. 

I'm not sure if my disappointment was clear in the last post about nursing or not. But we went from 98 hours of extra nursing a week down to 14 in an instant. That's a pretty significant difference. It was like a new life was laid out before us and then snatched away. I have to admit to feeling (at least a little) bitter disappointment. I'm ashamed to say.

But then I decided to pull up my bootstraps' bootstraps and live what I believe. Do I really believe that all things work together for my good? Do I really believe that God withholds no good thing from me? And, in turn, if I believe that then that means anything other than what He has planned is actually to my detriment - whether I like it (or understand it) or not. 

"Ouch" I say again sitting on my butt on the floor.

It wasn't easy! That's for sure. And I have to again admit to fighting that disappointment in what seemed like a cruel test from God. So I stand up, say, "Yes, I do believe" and accept what He has given. 

Today we get a phone call. They are adding 7 more hours. Now we have 21 total weekly hours (not including our nightly 8 hours)  that we can use WHENEVER we want. That's three days with 7 hours of nursing. Or 7 days of nursing starting at 9pm instead of midnight. However we want to use those 21 hours we can. I love how God blesses even when we doubt. I love that His grace is sufficient.


YOU DANCE OVER ME WHILE I AM UNAWARE. YOU SING ALL AROUND AND I NEVER HEAR THE SOUND. 

Always working in the background (and foreground). Always supplying our needs and wants. 

Now, to those who paid any attention, I snuck in three (well, two, because one is REALLY obvious) movie lines. If you can point them out and tell me what movie they are from then you get 10 points. Happy hunting!! 

Tuesday, March 27, 2012

HALLELUJER! HALLELUJER!!

We got a call this morning that our appeal for more nursing hours was approved!!!! 14 hours a day!!!!! Our lives are seriously about to change. I am still slightly in shock and am finding it hard to imagine what I'm going to do with all that time.

A big big thank you to all those who put in work to make that happen. To the few we told about this process, thank you for praying and and supporting us.

I can't believe this is happening!! Ahhhh!! I'm going to go pinch myself again just to be sure this isn't some cruel dream. 

Corrected: I just got a phone call 2 hours after the original one. It was most definitely a dream. It was miswritten somewhere apparently. We are only getting an extra 2 hours per day - 14 additional hours a week. 

Completely bummed. I would have erased this post but it was already read by some. Boo for us.  

Monday, March 26, 2012

Got his hurr did.

  Once upon a time
a little boy got his first approved haircut.
 
 
And he loved every minute of it.


Can't you tell?


He actually did a very good job.
But it was definitely tricky. 


 And he was not happy with her.
 

Or me.

The end.


The doctor will be happy to know that the mullet is gone. (I only had two pictures of the back of his head post cut but they were both blurry. I'll get some better ones in the next few days.) It was so sad to take off his bottom curls :( But on the bright side, his head does look smaller so that's a plus. Also on the bright side, he is FINALLY starting to feel better so his mood had much improved today. Mommy didn't have to run away after all.

 

Saturday, March 24, 2012

Eyes like creamy jade.

My eyes feel like mush. As does my brain. I guess that's what reading 700 pages worth of medical records will do to you. Okay... TECHNICALLY I've only read a little over 300 because the first 400 were lab results. Unfortunately, they mean nothing to me because I have no idea how to decipher them. It only took me about 22 pages to realize that these were going to go on for a while. I've read all of his surgical procedures and notes, almost all of the consults from when he was newborn, and am now working my way through his xray findings. All 300 million of them.

I've come up with a headache and a long list of words to look up. And I'm not even half way through yet. 

I must admit to being slightly addicted to these since yesterday. I find them fascinating, though. There is a lot of stuff that we didn't know and that the doctors didn't tell us. Maybe it wasn't a big deal but I like knowing all the nitty gritty details. For instance, during his first surgery they had to pack ice around his head. I still couldn't decipher why they had to do that (considering he didn't need it for his second surgery- and I'm not a doctor) but it's interesting. They also said that the valves they created worked "fairly competently". I guess you can't ask for too much. Haha. I also found out that somewhere early on they changed his diagnosis from 'Complete AV Canal Defect' to 'Transitional AV Canal Defect.' We were never told that. In fact I had never heard the second term until the day before his almost third surgery when one of the cardiologists said it in passing. To my understanding (that being what I've googled) there is not a major difference except that the Ventricular Septal Defect is..... who am I kidding? You don't care. This is what I've come to.  


I really do know that no one else on earth cares this much about his information, but as I said earlier, it's fascinating to me at the moment. I've got another 1100 pages to get through so Ben has a lot of uninteresting info coming his way. 


In possibly but probably not more interesting news I just want to say that I feel justified. After talking about my new scarf knot and then realizing that portion of the post probably put most people to sleep, I had a lady stop me in the grocery store that same night. Why? Because she was trying to figure out how I tied my scarf! So there, all you nay-sayers! I told her that she made my day. Of course, then the cashier guy asked me if it was even cold enough outside to be wearing one....  but whatever. Boys are stupid.


My pretty pedicured feet and I are now going to go try and soothe Rambo for the millionth time today.


   

Friday, March 23, 2012

A few things.

One.) Rambo is sick again. Nothing new lately. He has some kind of acute pnemonia so he is back on antibiotics with the hope of keeping him home. It's been a pretty rough week but his fever has broken (for the second time... hopefully for good). His heart rate and breathing have slowed thankfully, but he is just starting to have labored breathing. He's doing a lot of sleeping and we hope that means lots of healing as well. 

The thought of going back to the hospital is looming over me. I'm trying to accept it with open arms, but I can assure you that I am just as tired of thinking about it as you are of hearing about it.

Two.) Bumper stickers are in!!!!
 Check out Rambo's Heart for more info on getting one or some! Do it!

Three.) Thanks to my wonderful friend who also happens to be my neighbor, I am getting a pedicure today! Woot! Not that any of you care, but my little toes are going to thank me. I can't wait!

Four.) Just as pointless as number three, but, I'm going with it: I found a new way to tie my scarf and that makes me happy. It's the little things.

Five.) Rambo will be having a surgical procedure on April 11. This will be to drain possible fluid from his ears and put tubes in if need be. They will also be doing a hearing test so we can find out the full extent of hearing loss/impairment if any. We have to be at the hospital at 6am- help me, Lord. It should be an outpatient procedure. Please pray everything goes well so we can go home the same day. Theodore has not had surgery since March of last year so I'm a little nervous. 

And finally.) We received the disc of medical records today. Over 1800 pages!!! I, obviously, have not looked through it all as of yet, but I have the hope that it is exactly what we were looking for. So thankful I didn't have to spend around $1400 for that. God is good.

Enjoy the sunshine today, all. I believe over my way we are supposed to get rain tomorrow. Grow, flowers, grow!! 

Thursday, March 22, 2012

The time has come.

It's unfortunate, but true. 

This boy needs a haircut. It pains me to say it. And it's not just because his doctor mentions it EVERY time we go there, but he really does need one. He had his first haircut before he was 2 weeks old. Then they kept coming over the next several months. His hair has gone from brown to RED to strawberry blonde and curly. And it is still just starting to grow in in certain places the razor visited. 

I am loathe to do it.

If he were a girl I could pull it up in these super cute pony tails, or put a little clip in the front. But, alas, the curly hair was saved for my son. Figures. 

So, without (too much) further ado, and before I chicken out, he will have his first official hair cut. How we will implement this is a whole other issue considering the fact that he can't sit up stable on his own yet. Which means, mistakes could occur easily. I'm hoping to take off just enough to keep his head from looking larger than it already is, but not too much to take away the curl. Good luck, right? 

I'll try to get the hair cut documented via camera so you can see the disaster first hand. It should be interesting, to say the least.
 
On a side note, one of his doctors actually called him 'obese' yesterday. That's a first. 

  

Saturday, March 17, 2012

Warning: Picture Heavy

I really should be doing something productive this Saturday morning, but I just can't bring myself to do it. I'm sure I'll pay for it later when it's 11pm and I'm tired and wanting sleep but my house is a mess.... oh well.

Instead I am giving you some fun pictures from this week. Enjoy!

New pals. Goose is thinking "I own you."

LOVE that look.

"Ugh, Ruth, I just want your brownie."

Yes- that's the kitchen. He's made it.
"Okay... I love you too not just your brownie."
I want to go to there.
"It's my ball and you can't have it."

We had an early day at Hopkins yesterday visiting the cardiologist. 5:30 am is not my favorite wake up time, but we survived with only a few coffee malfunctions and forgetting the suction machine which we had to go back for. (Thankfully we had only gotten a couple minutes away from the house when we realized.) So the results of his echo were... drum roll please.... not outstandingly good or bad. "Pretty good... for him." according to the doctor. Basically the same which means: There is still some VSD, leakage and obstruction of the mitral valve but pressures were good in all chambers. Because of all of his other issues and his past, the cardiologist wants to see him for an echo every 6 months as opposed to once a year. I am most definitely okay with that. We still won't know for a long time if he'll need any more surgeries for his heart, but we always hope the answer to that is no. As for the abnormal color changes he has been having they are most likely vascular - he goes purple with obstruction and really red with dilation. They should clear up as he grows and his muscle tone gets better. In other words, nothing to worry about at this point. Yay.

We also visited the medical records building to see if we could get any information. We were passed through several people until we finally reached the lady in charge. She was able to help us out a little and although I don't know exactly what I will be getting, or how thorough it will be, she agreed to waive the charge for a disc of information. I am thankful for that. I still think that it's all wrong, but I am just getting tired of fighting at every turn. 

I won't grow weary of doing good, I'll fight the good fight of faith. But, boy, it would be nice if ONE thing could be easy. 

I hope you enjoyed the pictures. Happy Saturday to all!

Thursday, March 15, 2012

sdrawkcab-backwards

After these many many months, I have come to the conclusion that the medical community has stupid stupid rules. I'm actually extremely frustrated, but trying to smile through gritted teeth as I choose my words carefully.

Medical records.

Those two words have become my nightmare. 

All I want are Rambo's medical records. Getting ahold of someone in the medical record department of the hospital would be a good start but when I call I'm put on hold until they say that I have reached the maximum hold time allowed and need to leave a message. 

Really?

We have been passively trying to obtain his records for awhile but it kept getting put on the back burner - as though we need one more thing, right? But we recently decided that, yes, we think it's important to have them for many reasons. One of which is that we just plain want them. So I get in touch with my contact person who has never ever ever ever before said anything about them costing a thing. She calls back: It's $.76 a page! A page!!! Do you know how many pages he has?? I don't because nobody in the stinking medical records office will answer their phone!!! But I am positive there are many many many hundreds of them. 

So here's where I get really.... confused... and maybe one of you out there can clarify how in the world this makes sense: Why can a random person at the health department (with my permission, of course), the Infant and Toddler Program (why do they need it??), his long list of doctors, and apparently anyone else in the entire world who has some title in front of their names obtain a FREE copy of them all, but I have to pay thousands of dollars?? THEY ARE MINE. And, of course, those individuals can't disclose them to me because....... I don't know the stuff already? Oh wait, no, it's because..... they aren't ours? No, wait, that doesn't make sense either..... 

That's because it's all so incredibly skewed. Why is it so difficult to get what is mine?? Everyone else seems to be able to with no problem. One answer offered to me (by someone who already has them- "Yes, they are yours, but you are paying for the ink and paper."  My response "Did YOU pay for the ink and paper?" 

As far as I am aware they are not yet doing electronic records where I could pay per disc or something. Still paying which is dumb, but maybe less. But, again, I wouldn't know because NO ONE WILL ANSWER THE PHONE! 

Okay... I'm just being a broken record now, but this has been my life and frustration for the past several days. I have tried every route I can think of to get them at no cost and come up short every turn. No one who has them is willing to give them to me because of the potential of what could possibly happen. (I DO get that, by the way, I'm not trying to lessen that but at some point you have to say that the law just plain doesn't make sense. And really, who's gonna tell? I'm not going to say a word!!)

My rant is done. On here anyway. It shall continue in my head until there is resolution, I'm sure.

If anyone has any good suggestions or can give me any additional info, I'm game. 

Monday, March 12, 2012

Here's where I am with all this.

Correction - this is where I was and where I'm trying to be.

This past week at the hospital, I felt like Rambo:

 

(minus the adorable-ness factor) All tangled up.


Stuck.
Nowhere to go.

I was living inside of this mess that was so clearly where I didn't want to be.

I was trapped in my circumstances.

I was letting the worst get the best of me.

Just in case you didn't get the drift when I told you all a few posts ago that I hated you. (haha)

I was not happy.

It was inconvenient.

It was lonely.

It was bor-ing. Seriously.

Plus I had to eat hospital food - AGAIN. 

My attitude was horrendous. I tried to smile and breathe, and take it all in and be grateful it wasn't a worse situation, but I stunk at it. 

And then....

(I really hate the "And then..." 's)

I was convicted like hitting a brick wall. 
God has this way of working with me that usually consists of me stewing in my mire and muck for a while and then suddenly ending up on my butt.

And it always seems so simple.

The answer is always 'Yes.'

My reluctance is so great when I should be releasing instead.

See, I'm really good at the "Poor me"
and "It's so hard"
and "Not again"
and "Nobody knows"
and "Why"

Excuses.

And I fight the "Yes, Lord."
and "It is well."
and "I'm Yours."

and "Rambo is Yours."

The circumstances, whatever they are, are already God's. I have to let myself be His as well. Or I will end up in this dirty grimy place. Release myself. Ask for His perspective and help. Be like Rambo in those pictures. Don't fight against the tubes that entangle me. Once Theodore is in that position he knows it's not worth fighting against. Actually, he gets surprisingly still and content just waiting (most of the time... he is a baby....)He knows he needs help getting out; that he can't do it on his own. 

Just like Rambo, I can't help the things that trap me but I can choose how I will face them. 

Maybe next time I'll look more like this:


    
Still caught up, but smiling
and content
and relaxed.
Waiting for my Father to help me.
Letting Him help me.

There will always be excuses, but those don't bring abundant life.
Or peace.

"You are worried and upset about many things, but only One thing is needed." Luke 10:41-42 

You probably noticed the new header at the top. This is the final (hopefully) time. :)
Also, just in case you were wondering, those photos are not posed. Just Rambo in his natural state. 

Saturday, March 10, 2012

Better late than never.

We're home. We've actually been home since Wednesday night but this is the very first time I've had a chance to sit down at the computer since then. 

After Rambo got pnemonia suddenly he had a series of ups and downs. He'd have a good night and then the next night would be awful. He was so dehydrated, he had diarrhea, he was fussy. And then the stuff in his lungs started moving around which is good but always causes the desating and plugs while he (and we) try to get them out.

Still chewing on cords.
He put himself to sleep like this.
Still doing his splits... and getting his IV'd foot stuck outside the crib.

Pretty much the only form of entertainment he had. He loved 2 videos. That was it. Do you know how many times I watched those 2 videos???
Not the best quality pictues... they are all from my cell phone...

Anyway, all of that mess extended our stay by one more night. BUT now he is happy and home and busy busy busy. I try to remember what a normal 15 month old would be doing - walking, chatting, etc. And although Rambo is only in the 8 month range developmentally I sometimes feel like he has the energy of a 15 month old. He almost made it into the kitchen today. I think I've had to replug his oxygen 15 times in 2 days because he scoots and rolls so far that it pulls it out. I don't even worry with his pulsox most of the time because he gets the cord wrapped around himself with each roll so that I would literally be fixing it every 30 seconds.

I think several posts ago I told you about how he had a bluish undertone, and thankfully with antibiotics that has gone away for the most part, but there are still times both of his arms will go purple. The doctors response: "Huh." And we went to the hospital looking like this:


Red arms and legs with a white belly and chest (it's a little hard to see in the photo. Cell phones.. grrrrrr.) Again, the doctors' response: "Huh." One of his docs at the hospital asked what his other docs were saying. And that's as far as it went. No one looked into it more. It was just left at that.

He did have an echo done at the hospital because he missed his outpatient visit. However, a cardiologist would not come see us. In fact, we asked several times and they said he needed to go to the outpatient center and see his regular cardiologist. Which is a bunch of crap if you ask me because every single cardiologist there knows him. I don't say that lightly. In his 4 month stay he met every single one of them. They did comment that the echo looked pretty much the same but would say no more. And I suppose its a good sign that they didn't have something drastic to tell us. But it was stressed to us to see his cardiologist as soon as possible. And after trying to make the appointment (which I couldn't get for another month) and telling them who he was the doctor called back and said she could see us this Friday. Maybe she is just good at fitting us in because of the awkward circumstances... or maybe there really was something to see. We haven't seen her in about 8 months and a lot could happen in that time. Plus, with the color weirdness and stuff it makes me wonder. In any case, there wasn't anything there that was imminent and that is good. 

I feel like I'm having a little more trouble adjusting to being home again. Getting into the swing of things is coming, but very very slowly. Theodore is being very helpful though by just being overall happy. That makes a HUGE difference. And my dearest wonderful mom stuck some easy frozen dinners in our freezer so I wouldn't have to think about food; my sister-in-law brought us a ham dinner. And THANK YOU THANK YOU THANK YOU to everyone else who keeps helping and supporting us. It's wonderful to know that we are not forgotten even though we are home for the most part. You know that just because we aren't in the hospital, our life is still very different and difficult- and it's going to be that way for a while. So thank you :)

Don't forget to keep checking out Rambo's Heart on a regular basis. Big changes are coming soon!!

Saturday, March 3, 2012

Another day, another dollar.

Rambo now has some form of pneumonia. I knew our hopes of going home today were too good to be true. After having a night of perfection he had an early morning meltdown. His oxygen had to be turned way up and they are aggressively treating it with nebs and IV meds.... If they can ever get an IV in. 3 attempts and no success. So, because Rambo has gotten us stuck here for at least another day these are the forms of entertainment that I am accepting: magazines of any sort, any type of puzzle activity things, a dance routine in the middle of the room, kidnapping me would be nice, candy and any other kind of junk food, entertaining comments via Facebook or text and anything else to keep me occupied. Please refrain from phone calls- not helpful and I really don't have too much to say- and also books- I don't have the desire or energy to actually put thought into reading something. Maybe I will see you all again if we ever make it out of here. Enjoy your Saturday all you free people. I hate you.

Friday, March 2, 2012

Cue the pee.

I said, "Cue the pee!" It only took until about 4 this morning for his body to process what I was saying. But it finally did. His urine must have run off with his right testicle for awhile. The urine returned but the testicle is still missing. Efforts to locate it are in full swing. Every time we come here at least two doctors look for it and then ask us if we knew it wasn't there. This time we cut them off at the pass as Ben said, "We just call it Waldo." Maybe next time I'll get freaked out and ask them how something like that can disappear when it was just there. Just to fool them. That could be fun. Anyway, as I was originally saying, his pee finally took the hint. He is having a better day today. His oxygen is almost back to normal and his heart rate is down. He is still having diarrhea but he is at least hydrated now. He's working a little harder to breathe but that could be due to the fact that because he is 'sat-ing' well we aren't turning his oxygen up. He has been awake a little longer than he was yesterday but they said he sounds just as crackly as he did yesterday. He still needs to be able to tolerate his feeds but we are slowly checking off the things to be done so we can get home. I still have the hope of being home this weekend. Thanks to several people (you know who you are) I don't have to worry about coffee or food for the rest of my stay. So, yes, I suppose you could say that money magically appeared in my purse :) I love you all!! Rambo is gnawing on his cords so I better go get him before he causes an electrical shortage of some sort.

Thursday, March 1, 2012

Dichotomy

This picture speaks adorable and miserable at the same time. Poor buddy :( Now if he would just pee!!

BUGGER!!!!

Remind me to never write a post with my iPad again. It doesn't save it. Everything I just wrote- gone. So now you get the boring abridged version. Hopkins. RSV. Dehydrated. Not tolerating feeds. High heart rate. Fever. Not urinating. Diarrhea. IV fluids. Continuous pedialyte. I'm tired and craving anything homemade. Hoping that coins will magically appear in my purse tomorrow morning so I can get a coffee. It can happen, right?? Adorable picture to follow... I hope.