How about a happy post??

I'm kind of tired of writing depressing things. SO!! Here's the latest with Miracle Max (my dad's name for him), Mr. Max, Maxi-pants (NOT to be confused with Maxi-PAD, thank you very much.), Maxi-bear(mine...I know so cheesy), lil bear, Stinky butt, cutie pants, Maximus the great, tough guy (Jordan's), Wild Thing...I think that covers his daily nicknames, all used within a very short amount of time usually!
Ok, don't even try to tell me this isn't the cutest little face EVER... EVER. :) Well, I do understand if you have kids of your own, but come on, he is pretty stinkin' sweet. This is Max Tuesday, right after that bath that made me so angry, haha. He was pretty cold, like I said, so he's all bundled up. He just looked so cute with his hat on. This was a unknowing sign that he wasn't doing well, because he should have handled that bath better, and it really knocked him out for the rest of the day. His body was totally overworked. But I love the pic.

After "the event" (that's what Dr. Kays refers to his big crash as...) Max just looked really bad, so I like all the previous pictures even more. Two days into ecmo, the lung bybass machine, Max is pretty swollen and red. The body naturally holds onto its fluids while on ecmo, so that's a normal reaction. Today they gave him Lasiks, a diuretic that helps his pass some fluids. He looked SO much better after that. When we walked in this evening for goodnight prayers and kisses, my heart was SO put at ease seeing him a bit deflated. If you can imagine, these pictures are of him looking a lot less swollen than he was! (This first pictures are actually before he "deflated", but we wanted you to see how BIG he got! So, before:
Also "before":
This one is after his Lasiks, and a day to adjust to the machine:
I suppose he's still pretty darn swollen in this one above, but I swear it's a lot better. And, I'm so happy his color is getting back to normal. He was way pale before ecmo (matching his sheets pale) and now he's a nice pinky color. Yes, he still has socks on his hands, because the actual mittens they make for babies are a JOKE to Max, he had those suckers off in two seconds. Something about socks are a bit tougher to pull off. ;)

SO the medical stuff!
Dr. Kays came by this morning and had a conversation with us to clear up details and discuss everything. Basically, he is pretty certain (he never promises 100% on things...makes sense) that Max suffered a pulmonary hemmorage. This means his lungs were just doing so much that some blood vessels got overworked and burst, filling his lungs with blood. I asked why nobody "saw it coming". (I mean, lungs full of blood, wouldn't you see signs??) He said that it happens quickly, and even though they do an x -ray most mornings, it could have been happening that afternoon, and came to a head in the evening. He reassured us that our holding Max didn't cause this, it was a ticking time bomb waiting for a reason to blow. Since there was a pulmonary hemmorage, his lungs are now "injured" or damaged, and need time to heal up. That's what ECMO does, by skipping the lungs so they don't have to work. One other detail- it's possible that Max could have suffered some level of brain damage during the "event", because he was struggling so badly, and the blood saturation levels (how much O2 is flowing evenly in the body) were very low for a period of time. Dr. Kays said he doesn't think Max does have any damage, but said it's possible, so please pray against that just in case!!

We have been guaranteed a minimum of a 10-day stint on ECMO. They were able to ween him off of the Nitrous Oxide (NO2). This is a really good thing because it is just another thing that was helping him, but can do more damage than good sometimes. It's good because it keeps the lungs expanded, but can be bad because it can do damage to the interior of the lungs after a long time on, and we definitely don't need that! His "numbers" are looking ok so far...his oxygen is staying either steady or making little creeps upwards, so he's doing okay there, but would love to see it keep going up! He wasn't letting go of a massive amount of CO2 for a while, but has passed that now, so that's great.

We looked at his new x-rays, and Dr. Kays showed us that Max's lungs have little streaks of airways starting amongst all the blood. So, his lungs are very slowly starting to get rid of that blood; his body just sort of soaks it back up...essentially. This is a teeny step, but a step in the RIGHT direction!

The other new thing was the bronchioscope today. Dr. Kays removed one of Max's tubes (his stomach suction) and inserted a camera to see if there was any large clots of blood stuck in the lungs, and he didn't find anything. That is another small victory; now Max's body just has to keep moving that blood.

Ok, so...explained what happened (pulmonary hemmorage), how he is now (stable but kinda slow going), and what Kays did today...(Lasiks to get rid of fluids and the bronchioscope). Got it all!

We feel a little more encouraged today, especially once he looked a bit more like Max again. We are basically starting over, but who cares. Max is still here, and Dr. Kays was pretty clear that we could have lost him. I asked Dr. Kays if he thought Max would make it, and he said "I'm not gonna let him DIE!?" like I was crazy...haha. So he's feeling good about Max's odds. :) That's pretty much it more the medical stuff...thanks for being patient for two days while we recovered from the blow and got some answers.

NOW...

I know this post is getting long, but I NEED to post a few more random thoughts, most formed upon my time existing between a group home and a hospital...hehehe...

1. Elevators are very truth-telling cubes about people's...scent.
2. Sleep number beds are glorified air mattresses. (ok but im grateful I have a bed. yes.)
3. I am baffled by the efforts people go through to push their open back gown wearing, IV running, sick selves, into an elevator and outside to have a smoke.
4.Said smokers, as well as many others, smoking with their kids AND admitted (sick) kids in the presence!
5. ok, smoking in general. ew.
6. Why do so many people drive in parking garages at LITERALLY 3 miles per hour? I'm not kidding, we checked.
7. Sometimes my stomach gets nervous with Jordan in the parking garage, due to said slow drivers...road rage...
8. WHY rude people park crooked in parking spaces, even when the line are those square lines that give extra buffer between spaces, throwing the entire row of parking spaces into a tizzy...also sending us to the roof to park because so many huge trucks felt they deserved two spaces.
9. Wendy's and Subway are LESS expensive at the hospital than outside...little victories baby!
10. WHY DO WOMEN WANT TO TALK TO ME IN THE MOTHER'S PUMPING ROOM BEHIND A CURTAIN!!!??? can't we just pretend we don't know there's someone THERE???
11. I have not done my hair in a month straight...that's NEVER happened since I was allowed to do my own hair. It feels really frumpy, and kinda great. haha.
12. I am tired of pumping...especially when you're pumping dust. On that note, I have a doctor's appt about that tomorrow.
13. Jordan likes to yell OPEN and CLOSE in a very "open sesame" loud voice at the elevators and automatic doors just to see people's reactions.
14. If you find yourself constipated for 9 days after having a baby, get a huge coffee from Dunkin Donuts. Their slogan is 100% accurate...look it up.
15. We are SOOO homesick!
16. Jordan is lost in a dark pit called Mafia Wars on Facebook. I haven't seen him in a week.
17. There is a 3-year old named Germaine at the house who told me Michael Jackson is dead today....hmmm.
18. Little Germaine also asks me "where your baby at" EVERY day. I say, "at the doctor", and he says, where? I don't argue.
19. Jordan loves Lady Gaga, the singer, and I love to tease him mercilessly about that.
20. Max is so feisty, that they gave him the normal dose of paralytic for his procedure, and he still kicks and fights, so now they have to double up every time. GO MAX!

This last pic, I am quite proud of. I think it's very "professional" looking...and my sweet bear is so cute. I think Misty will appreciate it! :P
GOOD NIGHT ALL! KEEP PRAYING FOR THE KING OF ALL WILD THINGS!!! :)
love,
claire