Andi-Bean Land

Another busy, but semi-productive day in Andi Bean land.  First, we went for our formality appt. with the ENT Dr. to get her hearing aid referral. For us, a total waste of time and a stupid Oregon law, as all kids under 18 have to see an ENT Dr. and have to get that referral to get hearing aids.  But, once he met with us, we were in/out, and on our way back home for our next appt.  The community nurse from the county health dept. came by to meet us.  She evaluates us and acts as a sort of social worker that puts us in touch with different services from which we might benefit.  She gave me the number of two additional places to call, one of which, if we qualify, might be willing to help us pay for Andi's respite care.  It's yet another call, another waiting game of getting in the system, and another evalation, I'm sure. More hoops, but one that might be worth being a circus performer for, if we qualify.  We received a call back from Developmental Disabilities Service and have someone coming out at the end of November to evaluate us, our situation, and see if we qualify for assistance with her care.  This morning, we also ran into the pediatric social worker at Kaiser we met with yesterday, and she said a referral has been submitted for home health nurse.  I guess I'm awaiting another phone call.  The ENT Dr. said we will be referred back to OHSU for the hearing aid, which is different from where we were told we'd get the hearing aids from.  Is your head spinning?  I know mine is!?!  Trying to keep all these people, phone numbers, who does what, and who is helping us with what is a big ol' chore.  I need to spend a rainy Saturday afternoon organizing all this, in all my copious free time that is...  But, I think one way or other, help is soon on its way!  I still have about four people to call, including the friend of a friend recent graduate from OHSU...

The nurse today said we need to work on balancing Andi's time on each side.  Andi spends most of her time on her back or on her right side.  Because of the g-tube, where the stomach is and the direction it processes food, Andi spends a majority on time on her right side, especially when feeding.  When she lays on her left, the g-tube leaks moreso.  Leakage means less calories for the Bean.  Obviously, less calories means an underweight Bean.  So, we need to work on getting Andi to spend time on both sides -- so she doesn't favor one side over the other, and we need to work on getting her to spend time on her back - concentrating straight ahead of her, centering herself.  When I lay her in her crib - with the mobile above her head, she rolls to one side.  Oh yeah, she's starting to roll -- afterall, Butterball's roll.  So, we have some additional things to work on.  She also suggested I make sure that Andi is medically cleared for tummy time.  Considering her recovery from heart surgery, and the g-tube, she suggested I make sure it's okay that she starts working on it.  She's also not yet strong enough for the bumbo chair we bought, because she can't yet hold her head on her own.  So, I've sent her Dr. an email making sure tummy time is okay for the bean, and also get the ok for us to finally go to the beach.  I've been promising Andi a trip to the beach since her first surgery, and we haven't been out of town since early this year, so I think we're due for a road trip and a change of scenery. 

Butterball ... and thensome!

Our butterball weighed in today at 10 POUNDS, 4.5 OUNCES!!!  Double digits, FINALLY!!!  :0)  She's now 24" long, and her head size increased too.  She's also been taken OFF her OXYGEN, and one of her diuretics!!!  "This is by far the best I've ever seen her." (Dr. C.)  Today has been the BEST day!  Dietary wants us to slowly increase her feeds too! 

Andi's cute face, just got 10x's cuter without that stupid oxygen cannula!

Tomorrow we have to go see a ENT Dr. to get the referral for the hearing aid.  I was told that the hearing aid costs $4000. and my portion of that is $800.  Not bad, considering, but still... OUCH!!!  I'll have to walk out back and yank a few more bills off the ol' money tree.  Yikes.  The community nurse from the county health dept. is coming to see us tomorrow too.  We're hoping she brings us news of help on the way... but, in the meantime, I have a name & number of a friend of a friend whom might entertain working for the Bean. 

Andi's Dad said it earlier, ...'now we can go to the beach!'... so I think in a few weeks we'll be spending the weekend at the beach. YIPPIE!  Just hope this string of good luck continues.  Oddly enough, the social worker at the Dr's office I met with, in conjunction with her Dr., told me I had a cricket on my back.  She flicked it off and I got to see she wasn't joking.  I made the joke about bringing my pets with me wherever I go, and am just hoping that in some culture, having a cricket on you is a sign of good luck.  We could use all the good luck we can muster, and will savior it with glee.

YIPPIE!!!
;0)

Simplifying The Complicated Life

Today I made great progress in my collection of places to call, although I sit here awaiting many call backs.  So far, no real progress has been made in my quest for help.  Next week, a social worker with Multnomah County Health Dept. is coming to meet Andi.  She's one person that gave me about six numbers to call.  It is my hope that her coming here will help me further in finding a solution for us. We're also seeing her pediatrician and the insurance company's social worker next week. The following week, Early Intervention is coming with about four specialists.  Between that and a few people I hope to hear back from, something has got to work out for us.  Hopefully soon we can get working on her hearing aid too.  Getting kinda tired of playing the waiting game and want to move forward.  It just seems that time is critical and sitting here doing nothing is not working for me.  I want more, and I want it quicker.

One place I called is a caregiver agency and the mostly work with the elderly, but do work with kids.  They aren't professional medically trained people, but 'take classes.'  She said they run about $18-20. a hour, whereas, according to this lady, a nurse would cost $50-60. an hour.  She gave me yet another number of a place to call to see if they could help with the cost.  Therefore, we will keep digging.  It must be said that all of this is INSANE!

While working, I've had the TV on in the background  The movie Three Men and A Baby was on earlier.  Now that I've experienced it myself, their first day with the baby and that whole first diaper scene cracked me up!!!  Especially when the diaper fell off and the baby pees.  Absolutely classic.

Tonight is family night.  I'm  making dinner, which is rather therapeutic to me.  Especially since I like to take a weight-watchers recipe and make it fatty.  Frankly, it's yummier that way!  *silently laughing, knowing Lisa will laugh out loud, although visions of my former trainer shaking his head in disapproval frightens me!*  We're going to watch a speck of TV and play Wii games... in addition to entertaining the Bean with books and her activity mat.  Wow, how life has changed for us.  But, I find myself looking forward to it with pride.  Our lives are complicated and stressful, so a simple night at home as a family is the best gift we can award ourselves.

Growing A Butter Bean

This first picture was shot within her first week here.  We were still at St. Vincent's - so it was within her first six days of life.  We didn't know she had choanal atresia and needed surgery on her nose to open it from blockage.  She was fed through an OG tube at that time and the scab under her nose was a burn from the oxygen tube.



Week 1




Almost 20 Weeks

 



Phone Calls Galore

Wonder why I never call you?  I hate the phone.  Being in customer service since I was 16, I burnt out on the phone long ago.  So, in between feeds, meds, diaper changes, calming, work, and critiquing Nate Burkus's outfit du jour, I am supposed to find time to call about eight different places to find out if they offer services that can help us.  We're trying to get into the system.  That's a major PITA.

The Bean is doing well.  I didn't give her any gas med's today and she was a lot less fussy today, surprisingly.  We also moved to twice a day doses of not only Ativan, but Methadone.  By this time next week, we'll be off those two controlled substances.  Today, we sat up on the couch (sitting in the crevasse), we had unproductive tummy time on the Boppy pillow, and we laid on the activity gym with the piano at her feet which she absolutely loved.  She actually cooed, attempted to laugh, and stared at her fur-brother with amazement.  My plan is to do this several times a day to build up her strength and stamina.

We have our work cut out for us.  Hopefully all my phone calls will enable us to find help to give me a break, maybe give me a bit of a life outside of being nurse Mom.  They keep throwing the words 'respite care' around and when I google that, I don't like what I read.  I will try to figure out what will work best for us, for the Bean.  It's going to take time to figure this out.  It's going to be a chore, but well worth the effort, if it produces results.

A Few October Photos

Hanging With Ginga!

I'm digging my new Peter Rabbit outfit from my great Uncle Pete & Nancy.  It's still a bit big, but I dig it.

Peter Rabbit booties

WHAZZUP!!

Working On A System

I'm avoiding my work project for a moment... so I can update the blog.  I actually googled 'bumbo seat' and think I have one that was passed-down to me, I just didn't know what it was.  I will try that and tummy time as well -- later today after this feed digests, but before the next one. I have to take the mic-e (the g-tube's actual tube) out, and so she'll almost have a flat tummy that won't mess her g-tube up moreso, I hope.  Thanks for the suggestions ladies!!!  ;0) 

This morning we dropped Maddux off at the daycare by my house.  I worry about his elbows, as they have him playing fetch all day.  His arthritis has been bothering him lately... time to step it up on his etodolac (anti-inflammatories).  Yes, the dog has med's too, yea!  Hopefully he's having lots of fun!  It's sunny out, so Andi and I are going to walk down there after 5 and go "pick him up".  Should be interesting.

This morning, we also had to run to the Kaiser pharmacy again because two of Andi's med's were needing to be filled.  I figured out a new method, throwing the smallest O2 tank in a small sports backpack, and straping her in her front-loaded carrier... threw the purse over a shoulder, and we took off... it worked out pretty well for the short trip.  Then I had to throw her back in the truck, well, not throw her, but delicately place her in her carseat...hahhaa... and then since we were out, we decided to hit up the grocery store for one small bag's worth of goods.  Again, I strapped the O2 tank on my back.  Strapped the Bean to the front.  Threw my super cute, but not very handy purse somewhat over my shoulder, and luckily had the forethought to grab a canvas bag to pack the groceries in, as our local store is only doing paper bags and they have no handles.  Talk about having your hands full... I would have to use a cart and ewh, I hate using the cart.

So, we did it.  We raced back home and got the bean's lunch going about a 1/2 hour late, and now that she has some food going into the belly, she's not so displeased with me.  Apparently, the Bean doesn't like to wait... hmmm... wonder where she got that from?!  HA!  These little trips will hopefully give me more confidence to do bigger trips, like tackling Costco.  Well, that might be a bit too ambitious, but least I know we can handle the pharmacy and the grocery store for a short period out.

Breaktime is over... must get back to the work project, especially now that the Bean is on her way back into another snorefest.  One thing she wouldn't let me enjoy early this morning.  *insert pouty face here.*  Maybe I should start going to bed at 7 p.m., so when she's ready to get up at 4, I can at least pry my eyes open.  Soon, we will be done with 2/3 of the midnight medicines.  Maybe then we can reconfigure the med schedule so I can snore for a few more hours disruption free.  Okay, less dreaming, more workie-work.  Yikes, I think I require more coffee first.