Thursday, July 21, 2011

Bend, Part 2




These are the types of posts that are for really for myself. They are like a journal entry to release all this stress that I endured and want to record. They are times I want to look back and read about and want to be thankful that we lived to tell about them. They are times I want Audrey to read about when she is a Mommy and has all these same mixed emotions when her child gets a simple cold (and hopefully nothing worse). These posts tend to be long, so I apologize ahead of time...




The day we were to leave for our trip to Bend, Audrey woke up snotty.







Once we got to our rental home we resumed all "sick-rituals" like we would at home. Calories are calories when the Little's are sick, so if they want to eat tortilla chips and watermelon, then so be it. The goal is to keep them eating. Lots of watered down juice of their choice and favorite movies. Ellie was also sad & snotty, but she has yet to need an entire post on her sicknesses (Praise God!). Ellie just needed her nose wiped on occasion when I'd notice it was running into her own mouth....as oppose to her Big Sister who yells:



"I NEED A KLEENEX! I NEED A KLEENEX!"



on repeat and loudly no matter how close to her you are sitting, at the mere sight of a runny nose just barely making it's way out of the nostril.


Yes, a bit pathetic when she is sick, this one.


We were to stay a total of 3 nights.


The first night was spent out to dinner with friends, then back to our rental. The girls both slept normal the first night. The next day was The Race. I woke up feeling kind of sickly too, no doubt from so much close contact with my little mouth-breathers. I'm sure being in the off & on rainy & slightly colder weather did not help any of our colds, but that's what we were there for so by golly sniffles & all we went to support our man!


The next day was a day of nothing, but my husband and I were determined to make the best of our time in Bend and hit up REI and other stores at the Old Mill. I got a call from my Dad saying he was passing through Bend for work and wanted to treat us to lunch! What perfect timing since we were already downtown! We met him for a delicious pizza meal. Audrey is a lot like me in many ways, but one way is when we are sick we tend to "perk up" when people are around. Sure we're okay talking about being sick ;-) But we may downplay it to seem okay. Then when we are by ourselves (or together for that matter) we are able to relax and whine and moan. So, since I know this about Audrey I could tell she was "perking up" for Grandpa Gerry's visit, and looks fairly happy and hungry in this photo....but that may have been the only bite she took as the last part of her dinner was spent laying her head down on the table saying quietly
"I just don't feel well..."


It's sometimes a surprise to our families when they have seen her and she seems fairly normal and hours or a day later we are in the hospital because she basically can't breathe on her own. I know it's because she acts like she is better than she is. I have learned to watch her carefully over the course of her little lifetime, so I can tell when she is playing the role.



So that night she was getting worse and worse. Like usual when she declines, she declines quickly. It was Sunday night. We were to check out the next morning, and then we could drive back to our wonderful Pediatrician who knows us all too well and would be in his office ready to "fix" her, sans a hospital visit.


If we


could . just . make . it .through . the . night


That was the goal. I chose to sleep with her in her twin bunk bed. Listen to her breathe all night, giving her breathing treatments every hour, and of course continue to count her breaths. A normal, healthy child should be somewhere around 25-35 breaths per minute when calm. Adults are usually a little slower. We know this routine all too well. We count her breaths and time it, when she isn't "working" i.e. watching a movie, sleeping, etc. We began that evening at 45 breaths per minute. High, but tolerable. This just shows you how quickly she declines, by the time we eventually took her into the ER at 5am, she was at 63+ breaths per minute.



That is panting.


That is almost not able to catch your breath.


This is not okay. That is time to get more help. Quickly.



Oh . My . Poor . Baby


Here we go again.



We had to wake up snotty sick Ellie--who really could have used the sleep herself--all to take a leisurely family drive as the sun was coming up, to the ER. I held Audrey up front with me. We got there at about 5am, walking in with my usual sight of a lethargic child & a change of Mommy clothes in a bag on one shoulder and a towel covered in vomit on the other shoulder from her coughing so hard on the drive over.


Same thing every time....


Medical history assessment, O2 sats were at 80% upon entry...


(normal healthy child should be at 99-100%....I'm told older--smoke your whole life--emphysema patients would typically be about mid-high 80's...so 80% in a 3 yr old non-smoking child is low low low. Lowest it has ever been in a hospital visit for her & we've seen some low numbers..),


breathing treatments, concern looks on nurse/Dr's faces, hook her up to monitors, more breathing treatments, xray scheduled, cried through entire xray, finally rest on mommy's chest afterward, only to be waken up from dr who wants to do more tests, listen to lungs getting worse, cried through 2 steroid shots, still not breathing well, breathing treatment, time for IV, cried through entire IV placement (First try--Praise GOD!) while 3 nurses held her down, 1 nurse placed it and Mommy held her while choking back my own tears of empathy and exhaustion....


Just a typical trip to the ER for us!



It is rough. Exhausting. Miserable.


As my heart aches with sorrow watching my child deteriorate in my arms, the rest of my body...tone of voice, demeanor, smiles and chit chat with nurses is trying my best to act as if this is no big deal for the sake of being the one calm thing to remain in a stressful situation for my dear child. It's truly a job in itself to care for a sad sick child who can't comprehend feeling miserable and allowing strangers to take care of you via shots, nebulizers, cold stethoscopes...
Children's emotions can be unpredictable under stress, and lets be honest it's hard to concentrate and hear (or give!) directions from a Dr when your child is screaming her head off 2 inches from your ears. I do not envy parents who have to do it all the time, let alone nurses who choose Pediatrics for their occupation.


Lord, give them strength, for they need it.




Little girl, big bed.

Finally a room upstairs. Finally a bigger room with less busy noise of people coming in and out.



Finally some food!!!!


I for one was starved.

Lots of Jell-O, fresh fruit smoothies, and dessert cups for snacks.



This hospital had some impressive food, let me tell you. We're talking full on restaurant menu! I have to look at the bright side of things when my hips are going numb from laying in a twin hospital bed for hours on end, when my arm is so numb I'm not even sure it's still attatched to my body because I have been holding my child since the night before and my bladder is telling me I should have gotten up about 3 hours ago. So ordering my "complimentary parent tray" for each meal in addition to Audrey's was definitely a slight perk for me.



Fresh Fruit Smoothies and Oreo pie for dessert, yes please!



For the patient, of course....



The hospital staff gave Audrey this little Zebra friend whom she aptly named "Stripes", and a story with a Zebra in it. What a thoughtful personal thing that they do there. Another perk to staying in this deluxe hospital!

Sleeping with Stripes, her "soft blankies" from home and her cast-like armband to keep her IV in place.


Also, if you have to stay in a hospital...I'd highly recommend one with a view.
It makes the time go by to be able to gaze out into the beautiful fresh sunny air and see Beautiful mountains in your view!





Or the view of Pilot Butte was nice as well.



One of many Popsicles.
Keep them coming!!


Audrey did amazing this time with the oxygen in her nose. She had to keep that thing in her nose for 3 straight days, overnight and all! In past visits she would not allow it close to her face so we'd have to sneak it near her with bigger tubes laying on her pillow, directed towards her face hoping she would be breathing as much as she could in.



Once she got to feeling better and was bored of our room we wheeled her oxygen cart along with her IV pole and went to explore the Pediatric Ward "Play Room" 2 doors down from us. Another advantage to being in a larger hospital was having a room like this where we were able to visit once she was feeling well enough to walk on her own.





I would never in a million years wish for someone to have to wheel their child's oxygen cart and their IV pole with them for a walk down a hospital hallway. It is a heartbreaking sight. However, many reasons to be thankful including her desire to want to leave her hospital bed and her ability to slowly walk herself.




Once she grew tired of the playroom we'd venture back with our borrowed toys, books and DVDs. But, of course, other things would peek her interest more, like this Dr.s stool in the room. I was okay with letting her wheel around on that getting all tied up in tubing, just so I could hear her sweet joyful laugh again.





We got bored in the bed and made goofy faces at Mommy's camera.



And we talked.



We talked.



And we talked....


After the stress of the nights leading up to this, the obvious stress of her lowest of low in the ER and the exhaustion of the first day...we begin to get settled into a routine. We talk about the nurses who help us and what they each do, we talk about every item in the room and what each does, we tell stories and sing songs. We snuggle. I make a bed for myself on the pull-out chair but ultimately let her choose if she'd rather have me sleep beside her in her bed.



She has me sleep in her bed during her nap.



I later make a nice comfortable spot for her in her hospital bed and move on over to my own pull-out chair bed. She, naturally, decides she wants to sleep beside me again this time, so we stretch her IV poles and oxygen tubes and she sleeps in my bed at night.



Mommy & Audrey sleeping in the pull-out chair bed...intended for one person.



We are never apart.



We hardly lose touch.



We are there for each other.





(Had we been closer to home we could have just gone to our pediatrician and he would have given the appropriate steroid shots and administered antibiotics in the office. But being that we were 3 hours away from home and she obviously needed help right away we had no choice to risk driving home. Also, she wasn't getting much better the first night, O2 sats would drop drop drop when they would take her off oxygen to see how she would do on her own. She was hovering in the 92% forever. So the Dr's decided not to risk letting us drive home only to wonder if it would just mean going from one ER to the next closest ER if she needed help. So 2 nights is what she needed this time.)



Meanwhile, Aaron and Ellie had the pleasure of staying in a nearby Ronald McDonald House! Another thing I would never wish on another parent is to have to stay in one of these homes. Because, the reason why you would have to stay is if you are away from home and your child is ill or seriously hurt in the nearby hospital.


However, I wish you all could visit one under happier circumstances. This place was Amazing! Full industrial kitchen with 2 of everything. About 8 tables to eat family style. High chairs, booster seats... A huge walk-in pantry of dry food. A refrigerator stocked with food people from the community would bring in to donate. Thanks to "Wendy" I got to eat a delicious Italian Parmesan Chicken she brought in one night. Thank you Wendy, wherever you are! May you be abundantly blessed because I was by your home cooked meal!!!



They had an entire room of play clothes and toys.




Ellie playing firefighter/cowgirl in play room!



A library stocked with books, movies and a huge TV. A big central area with a rock fireplace, a computer station, sitting area.. Laundry room with 4 washers and 4 dryers. An outside fenced courtyard area with play structures, sand pit, BBQ, park benches, nice big lawn...



And of course a nice large private hotel style room down a quiet hallway with a big bed, sitting area with couch/TV, window seat, and a crib all set up.



The reason I am describing all of this is because I hope to never ever ever have to go back, but I want to remember how wonderful it was and what a huge gift it was to stay there for absolutely no cost at all.


I could not believe it!


I should have taken more pictures, but that obviously was not my priority. Audrey was. I really missed Ellie though, and needed a change of scenery (and a shower!), so Aaron and I switched one afternoon. I took Ellie back to have a nap and was greeted warmly by name



"Hi! You must be Ginny! How is Audrey feeling? We sure Love having Ellie here."



I got all choked up by the personable greeting and while thanking the Lady for having us stay there. I was tired and emotional and very very grateful for how God was providing for us.



Later while Ellie napped I took a good long shower, cried my little eyes out from exhaustion, stress, sadness, all of the above. I always have a breakdown at some point, it usually ends of being the shower where I am alone and can finally let my gaurd down and wash my tears down the drain. Then I ate "Wendy's" delicious meal, did our laundry and had some peace and quiet relaxing away from a hospital bed, all while watching Ellie sleep soundly on our video monitor.



I have heard of the Ronald McDonald Houses, but had always assumed they were for gravely ill children and their families...I didn't really know much about it at all. And frankly, I'm not a fan of the image of Ronald McDonald...he's a bit scary to me even as an adult.



On the morning we finally got settled into a hospital room, I called Aaron to see if he had spoken with the lady we rented the little house from to see if we could extend our stay so he and Ellie could stay there. He said she had other rentors coming in that night. There was a nurse that was in the room while I was on the phone with him and she overheard me talking about how I guess they'd have to get a hotel and hopefully Ellie would do okay...etc.



When I got off the phone she told me they offer families who are away from home to stay in the Ronald McDonald House that was on the opposite end of the hospital parking lot....free of charge. I immediately called Aaron up and then they got the Hospital Social Worker to set it all up for us!
What a total blessing!!


Ellie Lu being adorable and having some good one on one time with Daddy then Mommy on the Ronald McD House grounds.



All they ask is that you clean up your own messes, make your own food, and they had a set of instructions for changing sheets when you leave, cleaning supplies for bathroom, etc. Basically a very nice home away from home with the intention that you really do feel like home, except to share the space with other families. Oh also do your own laundry if you needed to. But I was smart enough to recruit my own help.




They happened to not be very busy, only 2 or 3 other families that we saw, so they were able to place us in one of the 8 rooms. All the colors were soothing and calming, there were no Golden Arches or creepy life-size clowns anywhere! You really wouldn't have known it was associated with a McDonalds at all, other than a few tiny logos here & there including their welcome letter and a huge bin of various stuffed animals that Ellie could choose to take with her. The bear she chose had a shirt on with a "Ronald McDonald" logo.



They also offered us to take one of their many hand-made quilts donated by people from the community. So hospitable.


I had pretty wonderful food at the hospital, but I'm pretty sure Aaron got the better end of the deal staying with Ellie in that nice big home. :)



Of course they run on donations, so next time you buy that Big Mac burger and fries and you've got 3 pennies in change, put that 3 pennies in that donation box to help support people like us who were completely grateful to have had that opportunity to stay in a Ronald McDonald House! I know I will!!!


Ronald, I guess you aren't so bad.


But.....A little creepy looking still.






After 2 nights and 3 days extra on our "vacation", we finally get to go home!!


Wheeling her out in style, wagon ride all the way to the car!





A much happier precious Audrey.



After being discharged from the hospital, Audrey got to visit where Ellie & Daddy had been staying and play in the play room with her sister and Daddy while I cleaned their entire room stay. And pray over it for the next occupants.



As quickly as she declines she also quickly recovers.

Blessed for sure.


Exhausting? Absoultely.

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