Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Wednesday, June 30, 2010

Ummm, I'm an RT??!

I've never been so tired in my entire life. Stacy told me I would feel that when I went home, and until now, it hasn't really applied to me. In fact, I probably should have taken tylenol pm a few nights. But, yesterday, we ran into our first live "training exercise," and since then, I feel like a zombie. You were right Stacy, I need a nap!

So, yesterday afternoon while some friends were over visiting, my nurse yells at me to come into the family room...with urgency. I run in there, thinking she's dropped something, kinked a cord, something along those lines...and instead, I come in to find up to his eyebrows. We suction. Nothing. Suction again. Nothing. I flip on the compressor. Stats stay below 90. She grabs a towel roll. I grab the extra trach, lube....I start loosening the trach ties, and we decided to quickly suction one more time to see if we can free up the airway. BAM. A ton of junk came out. Obstructed airway lesson #1. It took a good 20 minutes to get his color back to normal. He stayed a white-gray for quite a while.

I felt like a deer in headlights.....DID THAT JUST HAPPEN??! Although it scared the living crap out of me, I was a little excited. I did it. We did it. There was nothing to prepare me for that. You get the teaching. You read the books. You try to absorb what you can, but until a situation actually comes into play, you can't practice. You can't practice an adrenaline-high. It was exciting to know that in that situation, I didn't panic. I was completely clear headed. Focused. WOW. I'm still almost in disbelief.

I want to thank all of the staff at Mary Bridge PICU for helping me learn all of the necessities. I know I had a bazillion questions, and bugged you and bugged you for training and lingo and hands-on. I was so scared, and I'm sure there's going to be more times like these in our future. Everything you told me was fresh in my head. Thank you for preparing me as best as you could. I am so thankful for you!

Saturday, June 26, 2010

Can you say Awkward?

Yesterday was Joel's first day of scheduled appointments. I was totally excited, because I remembered sitting in the PICU, and having people come in to visit the nurses with their discharged babies. It was neat to see them coming back. I knew that someday very soon it would be my turn. We made it out of the house with no major catastrophies, thought we packed everything.....we forgot diapers, and the carseat attachment for the stroller.....not too bad for our first appointment! Luckily the doctors offices carry diapers, they had sympathy for us and gave us a few for the road...haha.
I was completely unprepared for the stares we got. HOLY COW. Maybe I'm in la-la land here, or just way too comfortable with our new entourage, but I didn't realize how different we looked to the rest of the public. I've never been noticed so much in my entire life, and it made me super self-conscious! I'm not talking a few looks,.....I'm talking long stares, and people looking at me like, "Oh. I feel bad for you." Special-Needs Moms: Does this drive you nuts???? I mean, I know people were having the best of intentions here, but come on, I almost felt like a celebrity. I get it, but I don't. My kid is totally normal except for the extra cords. I guess I'm still in that "new-mom" stage, where I expect some looks at the new baby, and I get excited until I realize why they're looking. It's not just because he's cute....people are almost afraid to look at him or talk to me, and that's so stupid. He deserves all of the gawking that new infants deserve. He's perfect.
It's not that I hate sympathy. It's just that I don't really understand the thinking behind it. I would never think to a person with a trached kid, "I feel bad for you." The trach provides an airway for my child that has respiratory failure. I'm thinking that's a pretty awesome thing. Please do not feel sorry for our family. We are not sad or burdened. We are absolutely ecstatic. Our child is alive and well....he just comes with a few accessories. Don't be afraid to try and hold him when you come over, or tell me how beautiful he is, (and he is ;) and to the perfect strangers out there: if you're curious, feel free to ask me questions, he is something I'm thankful for and proud of. I would LOVE to share the miracles that have happened to this little boy. :)

Tuesday, June 22, 2010

We are the new normal.

I think you know life is going to be different for you when the pharmacist calls you on your cell phone to give you his home phone number. The pediatrician meets you after hours when your kid doesn't have any real symptoms of being sick. This is a big deal. Joel's life is a big deal. I'm not going to lie. We've been home for almost a week, and I'm happy enough that my cheeks hurt most of the day. But underneath all of the happy, I'm nervous. I know I have all of the knowledge that I could possibly absorb. I've memorized every word of my respiratory book. I triple check all of the medicines he's about to get, and I leave post-it notes close by incase I think I'm going to forget something....and yes, it matters that I'm prepared, but things that happen around here aren't always things you can prepare for.
Joel's sub-q port tape got stuck to one of his blankets, and somehow he managed to pull it out in bed. I put a new one back in, but in his bedding was a big puddle of blood. Blood thinners. It's a 30 gauge, I couldn't even imagine that much blood from one tiny needle poke, but it did.
I love being home. I have more things to be thankful than I even remembered while staying at the treehouse. I've planted flowers. I got out my sewing machine during naptime and made Joel a new blanket. I've been in the kitchen for hours and hours and hours....and I can cook without having to have the other kids in the same room as me. The kids are content. Adam is content. I feel like Joel is too....he's sleeping a ton. He's gained a pound since being home...his inline suction was on when he was weighed, so it wasn't completely accurate at today's weighing, but it was close.
Today we ended up in Joel's pediatrician's office after hours. His secretions have been thicker in his lungs, and albuterol really isn't helping much. Ricker called for a tracheal aspirate around 3, and Joel slept almost much that the nurse and I were worried. Dr. Dalan was super nice, and after getting all of his gear set up in the room, realizing we didn't have the right suction catheters...figuring out a solution, etc, we didn't leave his office until almost 7. I'm trying so hard to control fear today. Only God can number our days. God says do not fear.
It's not like I can just run to safeway and grab tylenol. It's a big deal. Everything is a big "scary" deal....or at least it is for the first trip to an unplanned appointment. Is this something I'm just going to get used to?

Saturday, June 19, 2010

There's no place like home :)

We are thoroughly enjoying being home! A lot of adjustments have been made, and I'll post something much more reflective later, but I thought I'd put up a picture from yesterday of Joel outside with me :) It was his second time being outside and he settled down after a few minutes....not sure if he disliked the wind, or just my gardening. HAHA

Wednesday, June 9, 2010

Joel Update

Hello all. It's been a busy week for us here in the PICU.....Joel's doing amazing! He weighed 4.11 kg this morning (a little over 9lbs,) and is slowly continuing to gain weight, which means that he is ventilating at a comfortable rate. He weaned off his oxygen support too!!! He still needs to be on the ventilator for pressure support reasons, but as he gets stronger and gets to a more normal weight that will eventually be weaned also.
Joel's hydrocephalus seems to be under control with his new shunt. One ultrasound this week showed the ventricals getting a little bigger, but the next day they looked unchanged. Neuro wasn't alarmed, but we're keeping a close eye on it, and he's getting head measurements daily.
His amiodarone (heart) was switched to a different med. I don't know how to spell it, but it's a milder medication. The old medication has a long "half-life," so if any issues are going to pop up from it, it will be over the weekend most likely, so I am very thankful that we are having to continue to stay here until early next week. Close monitoring is always a safe bet with Joel.
His issue with breastmilk has resolved. :) I'm so glad too, because all of the milk & colostrom we saved, he's finally able to take. He was behind enough on his feedings that earlier this week he was still getting colostrom from his first week of birth!
Physical Therapy and Speech have seen a lot of improvements as well. Most babies after being intubated for over a month will have oral aversion, and if any, his is minimal. He loves his binky, and this week he's started putting his hands in his mouth, and bringing his hands up to his face...(this is really good for the muscles in the face and throat because it forces the tongue to move to the front of the mouth.) His legs and arms are getting stronger and are moving more, so they aren't as tense and "froggy-legged" as they used to be. He will continue seeing PT and speech once we get home.
Insurance, Medical Supply, & Nursing are finally wrapping up. Medicade is being a pain in the butt,....but could we expect any different? At least I was told to expect this, it makes me all the more determined to fight.
At the moment, Adam and I are "rooming-in" with Joel. We are spending the next 24 hours in his room without the help of an RT. It's one of the final check off's in order to be discharged. So far, no catastrophies! (Thank you Joel!!! He likes to misbehave from time to time during the middle of the night...) Although, we've moved rooms now FOUR times in the last 3 months, and two times in the last week. There are benefits. We have our own bathroom. Our son is the healthiest kid in the PICU....FINALLY. Drawbacks?? We have a new nurse, and we're far away from all of my favorites. Not to sound like a total crab here, but I like my nurses. I don't want anyone new, and after being here this long, it gets frustrating to explain my kid to someone who doesn't know him. Oh well. We will be out soon enough, and until then, I don't have to walk down the hall to pee. :)

Tuesday, June 8, 2010


Needless to say, the last three months have shifted my priorities a bit....Ok, a lot. I'm a part-time mom, a part-time wife, I have only one chore to do a day, and sometimes that doesn't even get done. My entire existance, it seems, has been placed on hold. AND, for the first time in my life, I feel important. Like, really important. And missed. It is very apparent that a household and family can go bananas without a mama. Kids go into shock, the house doesn't look, feel, or smell right, the husband is forced to do all sorts of things he wouldn't normally do...ummmm, SCARY. Am I patting myself on the back here? Ok, maybe, but that's not what this post is about. It's about the man who picked up the slack when I left.

For the last 12 weeks, my husband has gone above and beyond the call of duty. During the week, he's at home, working and taking care of the house and cat...mowing the lawn, and realizing just how fast a big house can need dusting. He's getting recognized, with a nationwide company for his good work & ethics. He has spent hours in the garage, setting up my pottery studio, so that it's ready for me to jump on in when I get home. He's been working on my business website. He's taking care of finances, which are OUT OF CONTROL,.....(and it's just the beginning...) Commuting on his weekends, he's driving back and forth, with a smile and a good attitude. I am amazed at his composure when he comes up after a long day of work and wants to immediately go see Joel. It has to be exhausting walking in his shoes. He's taking special time to do romantic things, and cover my emotional needs, so that our relationship can remain a rock, regardless of circumstance. He has been my 3/4 when I can only be 1/4.

I want you to know how truly grateful I am to have you by my side. To give me piggybacks when I can't take another step. I am your #1 earthly priority, and I say that with pride, because I know you don't take that committment lightly. I am so lucky to have you for my husband, and the father of my children. I promise, you'll have your wife back soon.