Summing it all up

So, I know its been a while. There's just been so much going on, and no time to write. Going to try & do a quick run through now.
We just got back from vacation about 2 weeks ago. We took a road trip from AR to TN to RI. Our vaca lasted a total of 3 weeks. It was a lot of fun...felt really nice to unwind & regroup. Of course I had my one drunken night with out with Todd & Ange~ very much needed. We had a hiccup along the way during our time in TN. Ollie got hospitalized for low oxygen levels (what else is knew!) But this time it was scary. His O2 was in the 60s while he was awake. He got tranfered to another hospital & listed in critical condition. He made a pretty quick recovery though, only 3 days in. Tough guy for sure!
Aiden started school this week. He's already saying he doesn't like school & wants to stay home. He hates they make him lay down and take a nap for 2 hours. Aiden can't be still that long! I feel bad and want to keep him home, but its unrealistic to do so...plus he needs to learn to keep still. On the first day I almost got arrested for walking on school grounds! But seriously I was trying to grab Aiden so Ollie could go to the hospital but the arrogant cop wouldn't let me talk. Assface!
Now, Ollie is back in the hospital for, you guessed it, low O2 levels! He's been poked and prodded so many times. Lots of testing. Doctors thought they knew what it was & did a Ct Scan to confirm and it was NORMAL! Well fairly normal, as normal as lung disease is, but they thought it was a certain type of rare lung disease (chILD) & they were going to send him for a lung biopsy on Monday.  His CT results eft the doctors all speechless. So now we go for a less invasive approach, but still to the OR Monday morning. We'll see what those results show. If nothing impressive, he may get out of here Tue or Wed....and he gets his Oxygen! I never thought I would be so happy to get O2! He will go for a sleep study in a few weeks (they've canceled & rescheduled 2x on us now). Depending on what that shows, our next step may be the lung biopsy afterall because although the CT Scan didn't show evidence of chILD, it doesn't mean he doesn't have it, just means its the kind that even more rare. He's got a long journey ahead of him, but damn it, he's so strong & such a fighter! The one thing I'm the most upset about right now is he is no longer allowed to have feeds by mouth with liquid. So no bottles, no sippy cups...and we've worked so hard to accomplish this goal. He just struggles way too much to breath & eat, even on O2. He is allowed to have real food though, so now we are working on that more & he is doing suprisingly well!
Keegan, that boy! Let me tell you, potty training him has been a breeze. Its all about routine with him. Coming back from vacation was enough to shake up the routine & create a new one. He's done so awesome. He's still afraid to poop on the potty, but he eventually does it. I'm so proud of him!
And lastly, my friends that I've made here are so friggen awesome! They really are there when they say they will be. They have been so wonderful to us this past week. Taking the boys & helping out on short notice! Its been fabulous knowing we have people to count on, that military family. I love ours!

Time Out

I have noticed that I have been yelling, A LOT, lately and using time out less. Time to get back to using time out more effectively, because the more I yell, the worse things seem to get and I don't like that.

I told the boys I am all done yelling and they will be sent to time out more often if they don't straighten up. So far the time out chair has been used quite a bit this morning, but seems they've figured out time outs suck and are acting better as far as the fighting goes. Also doesn't help that I threatened to take away the trains the next time they fight over them.

A good day

Today was one of those days where I felt like my life was normal. It was a happy day. The boys slept in late (which I was very happy about since Ollie was up coughing a lot last night). He was the first to wake up at 7:25, followed by Keegy at 7:45 and then Aiden at 9:00! Ollie had therapy 9-11 and Keegan had therapy 930-1200. I did the drop offs and went to the gym. I ran over 2 miles today, which I am pretty happy about considering I haven't ran in a while, just been doing my Biggest Loser Cardio Max DVD. I miss running. I miss the way it makes me think, but clears my mind at the time same, I miss the natural high I feel afterwards. I just hope that things in our live stay semi settled down so I can hit the gym everyday and go for a run and feel human- feel normal! Todd picked the boys up from therapy today, which was wonderful. I didn't feel like I had to rush back from the gym, I was able to take a nice shower, and get dressed in peace. I baked today. I haven't baked in what feels like forever, but maybe its been a week. I've been craving banana bread so I had to make it so Ollie can try it, and Keegan can eat it. I had a bunch of bananas and I just got more GF flour so I figured I'd make 2 different loaves. Its a good thing too because that GF flour, for some reason, makes the bread fall apart. I cut the loaf with regular flour and it cut beautifully. Cut the GF loaf and its just falls apart, so its just stuffed into a zip lock bag. Keegan doesn't care anyways, he smashes it to pieces before eating it. He doesn't know the difference! I think next time I will just keep the loaf whole and cut it as needed. Lesson Learned!! I made chicken parm sandwiches from scratch today, which were amazing. I sat down and played Playdoh with the big kids today while Ollie napped. (I haven't done that in a long time). I let the kids eat "SpaghettiO's" for dinner because that's what Aiden wanted. Of course I had to make Keegan's look just like Aiden's so I'm cooking, and cutting corn penne pasta into little circles....and he took maybe 2 bites and decided he was "dooooh" (AKA DONE). Ah the things I do for these boys! LOL. I love that I got to sneak in quiet time with my amazing husband today, even if it was only for 5 minutes, Keegan and Ollie were napping and Aiden was watching "trains on videos" (AKA- YouTube- TRAINS). But it was great to just spend a few minutes together without the kids crying, screaming, whining, asking for one of us to play trains.... which I did today. I took the time to play trains. I HATE playing trains. Its annoying, and boring and I hate trains, but I did it and it really was a big deal to Aiden, which makes it worth it to me. Later on Ollie and I even went into the room to just watch Aiden play trains, and even that was super cool. It gave me a break, Ollie was entertained just by being in the boy's rooms and Aiden was telling him all about the darn trains while I zoned out. And forget it when Keegan is involved....its trains, trains, trains all day long. Creaky Cranky, Thomas, Percy, James, Edward, Gordon, Diesel, Toby, Bill, Mavis, Emily, Salty, Oliver, Henry... the list goes on and on. I know all the trains....I hear about them all day, they watch Thomas movies, Thomas TV shows, play Thomas the Train....welcome to the Island of Sodor! Okay, enough about trains! LOL!

Seriously though, its been a good day. I was very happy to get the phone call from the pulmonologist office that they received Ollie's medical records from NM finally. Now I just need to wait and give him time to read them to come up with a treatment plan. They just need to hurry up and get this done before we leave for vacation. I can't have them decided when I'm all the way in RI they want to see him the next day to do whatever they need to do!

Tonight & Monday are the only night of the week I look forward to watching TV now that its summer. Love Bites is on tonight and I save all my laundry folding for tonight, so I can stay awake to watch it, otherwise pretty sure I would fall asleep on the cough. So I'm off to pop some popcorn, grab a tall glass of ice cold water and all 3 laundry basket and watch some TV!

Looking forward to more good days like today!

Oh and if anyone has any ideas on how to single handedly put eye drops into a feisty 12 month old's eye and actually get them IN the eye, it would be fabulous if you'd share! On top of it all Ollie has pink eye! (But would we expect anything less? Nope!)

Frustrated

I'm just feeling so frustrated with everything involving Oliver's medical. I came very close to slapping a resident across the face today, and now I get a call from the pulmonologist at 8pm telling me he STILL doesn't have a treatment plan for Oliver and needs his medical records from New Mexico...WHAT??? You have GOT TO BE kidding me. I have requested those damn records 6 times now. I even had the medical home nurse fax over a request and call for the records, and the pulmo still doesn't have them. How the hell is this possible? This can't be happening. I gave him the info to fax over a request for himself because at this point I am just done. This is what is holding up his treatment plan, I'm pissed. I'm about to fly to ALB myself and get the records. I came to AR with what they gave me, the important stuff supposedly but no info on his NICU stay, when he got admitted and they ran test after test after test on him! No MRI results, no echos, nothing...so what the hell did they send me with that was the "important stuff"?? Ah I hate New Mexico more and more! Its just bullshit is what it is and I'm so frustrated!

Genetics

Today we saw the genetics doctor. Getting there was its own adventure, so I will start there.

Leave the house at 7:15 for an 8:00 appointment. It takes 20 minutes to get there I figure with traffic, since I knew where I was going (I pass "the exit" everyday on my way to the hospital and the directions are simple) and that leaves me time to feed Ollie while we are in the waiting room. Awesome plan that didn't go as awesome as I planned. Apparently there are two exits for Cantrell Rd, 20 minutes apart from each other. No one told me this, I was told take Cantrell, take a left at the light and drive 3 miles and its on the left side. Let me tell you, the directions made sense, I did what they said, until I ended up in the ghetto of downtown, I passed the Salvation Army with lines of homeless people outside waiting to maybe eat breakfast. Surely the genetics office can not be in this part of town. So I called up my friend, who got on Google, trying to figure out where the hell I was and where I needed to be. Turns out I was still 20 minutes away from my appointment. No biggie, get back on the highway, get on highway 630 and go from there. Well, the only place I could figure out how to get back on the highway was the exit AFTER 630. So I just got on the highway after the exit I needed to take, took the next exit and by some crazy ass way, I ended up at the hospital, which was great news because the hospital is off of 630 and I knew my way around there. Somehow I managed to find 630 by totally missing the exit I needed and driving around aimlessly! Eventually I made it to my appointment, so upset I was almost 20 minutes late. We waited 4 months for this appointment, and I was so afraid they wouldn't see us (even though I called to tell them I got lost) or that they would rush us out of there since we were late. I get in, check in, sit in the waiting room and almost right away a nurse comes out to get us and I apologize for being late. Her response "Oh I didn't even realize you were late. We are just ready for you now" REALLY?? I can only laugh I guess.

So, anyways, enough about my wonderful adventure there. The genetics doctors were great. We saw two doctors, we had some serious language barrier struggles going on, but we worked through it, I had them write stuff down when I couldn't understand what they were trying to say, and truth be told, they could have spoken clear English and I still wouldn't have understood the words they were trying to say!! LOL. They think they have an idea what's wrong with Ollie. They are running a panel of test and they should take between 1-8 weeks get all of them back. Hopefully in 2 weeks we will be leaning more towards a definitive diagnosis, and do more testing to narrow it down and hopefully in a few months we will have a true diagnosis. We've waited almost a year to find out what's wrong with Ollie, and now that I know its only a few more months until we know, I just feel like I can't wait that much longer...but we've been waiting 10 months, what's another 3??? Its antagonizing is what it is!!! It makes me sick knowing we are so close to knowing. I just want to know. I have heard the question "what will knowing change?" so many times over the last 10 months that I've been saying "I just want to know what is wrong. I want a real diagnosis, not just a bunch of mystery diagnosis that are part of something bigger that no one can figure out" I want the final piece to that puzzle that's going to pull this all together. I want to know if the outcomes the pulmonologist gave us are realistic or knowing that he has a particular syndrome will change those outcomes. Is there a simple treatment for all of this, or is it worse then expected? We won't know until we get that diagnosis. And as much as I don't want to rush my children's lives away, I want these next few months to hurry up so we can know...

Vomit

Yes this post will be about vomit so if you can't handle even reading about vomit, please don't read...

So since Oliver had the Nissen done (where they tighten the esophageal sphincter so he won't reflux anymore, it also prevented him from being able to vomit. So when he starts dry-heaving, its him trying to vomit. He is the cleanest "vomitter" (for lack of a better word). I stick the end of the big 2oz syringe onto the burping tube and insert into his g-tube and that's how he vomits. Nice and clean, right into the syringe. Dump the syringe into the sink, rinse and we are good to go!

Well, today was a different story. I thought for some reason it would be great idea to rock him after he had a 4oz bottle... BIG no, no!! He starts dry-heaving. I plug him up, vomit starts coming into the tube and I didn't think it would be SOOO MUCH! Luckily I have a bottle close by so I grab it and I'm trying to unscrew the cap so I can pour the vomit in it without unplugging him. In the process, I tipped over the syringe and vomit pours all over the floor. I get the bottle open, he finishes vomitting, I put the syringe into the bottle. Unhook little man, and set him on the floor. Thinking its just a 2oz mess to clean up, no biggie, I hop up to grab a towel and a bowl of warm soapy water...and my FOOT KICKED OVER THE BOTTLE.... DAMN IT!!! another oz of vomit on the floor, in an entirely different spot! GROSS!!

I believe I got the stench of puke out of the carpet, but seriously, I just went from making my kiddo the "cleanest vomitter" to the messiest vomitter! At least when Keegan pukes he knows to do it on the floor in the kitchen, or on an area rug. Aiden knows to go to the bathroom....Oliver, through no fault of his own, "pukes" on the living room carpet. Fabulous! LOL

Oliver Danger's Birth Story

**Reader digression is advised**

I remember being 32 weeks pregnant (about to turn 33 weeks) laying on the couch, feeling like I was dying. Todd had taken the boys out to get a new tool box. By the time he came home I was begging him to take me to the hospital. I told him just to drop me off and I'd let him know what was going on later so he didn't have to bring the boys in. It was such a struggle to walk and breath to just get into the hospital.

I get in and get hooked up to the monitors, baby sounds/looks great. Me on the other hand, no so much. They hooked me up to an EKG and I was having a heart attack, or had just had one. I was struggling to breath so badly. They had me hooked up to oxygen and transported me in an ambulance to the OTHER SIDE OF THE HOSPITAL! (way to go New Mexico!) to get a CT Scan or an MRI done. I don't know which one it was but they use that fun iodine contrast, which I told them makes it hard for me to breath, and given the fact that I already couldn't breath made it ever more stellar! But the benefits of the contrast outweighed the risk, blah blah blah.. They said I had a pulmonary embolism and I was lucky they caught it because most of the time people just die from them and they don't find them until the autopsy (Really? Is that what you think I need to hear right now?!?! NO its not!) I know they put a central line in to my heart, "just in case". I think it was after this that Todd got there. I don't remember if I called him or the hospital called him though.

A lot of the details after that are funny. I remember going back into my room and them starting me on blood thinners and a few hours later me all of a sudden feeling like Ollie was trying to come out. The OB checked me and sure enough he was, so in an effort to stop my labor and transport me to a different hospital, and shut off and reverse the blood thinner I could have swore the baby was just going to pop out...and guess what....he did! I don't remember seeing him after he was born, I didn't know what he looked like, if he was alive, breathing, where he was, where they took him or anything. As for me, I remember people screaming, the look of fear on my poor husband's face, hearing things crashing, the feel of the nurse putting her hand over mine and putting it on my central line, whispering (or atleast it seemed like it) "Your job is to hold this in and stay alive", lifting my head and seeing a trail of blood on the floor. The next thing I remember is waking up in the ICU, Todd by my side. He told me Ollie was okay and they were taking him on the plane to the other hospital. What a tough situation to be in, stay with your wife who just bled out before your eyes and died, then came back to life or stay with your 8 week premature baby! I know I stayed in the ICU for maybe a day. I know Karen and Colin drove down from Colorado to stay with Aiden and Keegan until my mom could fly in. I know some guys from Todd's squadron rushed to the house to stay with Aiden and Keegy until Karen and Colin got to the house so Todd could come be with me. These things I know because they were told to me, I don't remember them...but I remember Todd being there.

In the end, I know I bled out so badly that I ended up needing a total and complete blood transfusion, I flat lined for a little while and I needed a hysterectomy to stop to the bleeding and save my life.

One thing I do sort of remember is my transport to the hospital. I had to ride in the ambulance and I felt so sick. I could see out the back window and I could see Todd's truck behind the ambulance following us. I remember the EMT pulling over and buying me gum to chew so I wouldn't throw up all over "his bus". Getting to the hospital and getting into my room I don't remember. I barely remember them wheeling me down to the NICU to see Ollie. I couldn't even tell you details of the first time I saw & held my baby because I don't remember. That hurts, I can't lie.

They say he was breathing room air really fast and barely needed oxygen (which makes me roll my eyes because now the poor thing can barely breath and they are talking about putting him on oxygen, but that's a whole different story). Oliver was transferred to the ICN after a day or two, and at some point during his ICN stay is where I start to remember things, I think it was about 3 days later I can remember things. The first thing I can remember is my nurse being "mean to me" (she really wasn't. she was trying to help me get on my feet) She told me I couldn't see Ollie until I could get up off the bed myself and put myself in the wheel chair and then she would wheel me down to see him. It took me a while to get up but I did it, and I remember it was late at night, around 11pm. He was sleeping so peacefully and looked so tiny, yet so big compared to all the other babies around him. I know I held him and held his hand, like I'm sure I did many times before, but that was the first time I remember doing so....late at night, all alone in the quiet...just me and my baby.