First week home, July 24, 2010, Saturday

Sadie got a package from Santa and his elf.  Color wonder markers and a princess marker book, and mommy got some bath and body goods... Calgon take me away!

We've been home a week now.  A crazy week at that.  The first part of the week was on the phone, off the phone waiting for calls and setting up appointments and rearranging appointments, discussing the drain tube site that opened up after Sadie was straining to have a bowel movement.   On discharge x-rays we were told her bowels were packed and they attempted a suppository while still at the hospital with no luck.  We then loaded her on lots of juice and Metamucil for days afterward.  After the site opened I cleaned it and covered it with a Bandaid over night, but removed it in the morning to air it out and clean it again.  The drainage was very foul smelling and I began to worry.   Talked to the doctors, drew an ink line around it and watched it.  I ended up having the girls next door watch Sadie Tuesday night while I ran to the store for suppositories. She was so miserable, not eating and straining with no results.  Finally, she had a large hard painful  bowel movement with the suppository she was not happy about having.   I knew in the subsequent days there would be a lot more coming from the bottom end and prepared myself.   The fun begins.

Finally, after back and forth phone calls with our pediatrician, the physicians and PCMC , their sleep center and another one we found in St. George, we finally got some appointments made.

This coming Wednesday, July 28th, we have a sleep study consult in St. George at 3:00 p.m. in the afternoon with the sleep study to follow that night beginning at 8:00.   Pray Barney makes it there and back okay.  I've stocked up on Antifreeze :D   

August 4th, is her followup appointment in Salt Lake with the cardiothoracic team.  Until this time she cannot bath or get her incision site wet.   The drain site got really bad and looked as though it was spreading the night before last, but the scab fell off in the night, drained some, and now the redness is going down and I think is finally healing.  Giving her a sponge bath yesterday and wetting her hair and redoing the braids was torture.

She has slept in her own bed the last 3 nights with her oxygen tubing down the back of her PJs.  I've learned a wrestling maneuver that helps with the struggle with the tender grips on her cheeks and attaching the tubing at night, and we are getting in the groove of things somewhat.

During our first week home.. I've tried to get the house clean. It was still a mess from when the grand kids were here earlier in the month.   I shampooed the front room carpet and Sadie's room. I put together my book shelf and start eliminating junk and crap from the house.  The dining room/work area is still in need of attention.  I've mowed the lawn, pulled weeds, dug up some more of the garden, planted some more flowers, and have kept myself busy as I can, and until tonight haven't been able to sit down at the computer very long without being distracted, afraid if I stopped I'd fall completely apart.

A friend came by a few times and has fixed my sprinkling system for me, so now I can water everything and it is working well.  It amazes me what stressed me out for over a month and gave me grief in trying to fix the piping took a man a few minutes.  There are just somethings, I must admit, I just can't do.  But, I still refuse to admit I need a man.  I can't let myself believe that anymore.

Today, was my down day.  It's all hitting me now.  This is how it works with me... when the dust settles somewhat I lose it.

I worked in the yard yesterday and again this morning.   It's a Utah holiday. A girlfriend invited me to their town pioneer parade, but I didn't want to go anywhere.  Well, I did, but where I wasn't really welcome.  I have to remind myself consistently that things aren't the way I want and never will be.  I'm on my own and always will be.  Sadie and I are it.  I just struggle getting out doing things, just us too.

Today, I've been totally emotional, crying.  I tried working it off outside.  I then unboxed the porch swing/glider I bought while in Cache Valley, with visions of Sadie and I swinging in the evenings and watching the birds.   I looked at the instructions and broke into tears, and didn't even attempt the thousand bolts, screws and parts. 

I worked a few hours while Sadie napped.  She's been a bit grumpy today and has needed a long nap both yesterday and today.   I finally decided to nap myself.   I'm depressed, and I can't let myself be that way.

I just can't.

Tonight I feel so alone, lonely and totally spent.

I admit it. Tonight, I need to be held and the comfort of a loving man's strong arms around me, but admitting it is even more painful.   It isn't going to happen in this life time.

Somehow, somewhere I need to cow girl up and gain the strength to carry on without the tears and longing for that kind of comfort...

and I will..  I am becoming stronger and I will bury that part of Julie.. the insecure, needy, dependent, loser part of me.  I have to.

First Day Home postop, Saturday July 17, 2010

Cassie had road home to Cedar City with us Friday to see our house and such, spent Friday and Saturday night in Sadie's princess room, and Sadie and the oxygen tank slept with me.   What a nightmare trying to get the oxygen on her and trying to sleep with it as she tossed and turned and climbed all over me all night, hanging onto a leg here and there so she didn't dive off the edge of my bed.  I could see this was not going to work like this or we'd never sleep again!!

The Bishop and his wife came by Saturday, bringing leftovers from a funeral and to see how we were doing.

Praxair called and brought by the oxygen converter and more tubing and supplies.

I did more unpacking and cleaning.

Sunday morning we drove Cassie to catch a shuttle to Salt Lake downtown and say our goodbyes.

We are home now and on our own.  Now what?

Postop day 4, Friday July 16, 2010

 Sadie actually loving the sticker book and tried really hard at sticking the stickers on the pages. She really loved doing it.  It's the first time she's ever wanted to do the sticker thing. 

 Waiting and waiting for discharge.  Sadie decides to make a phone call on her princess phone and make my bed while we were waiting and waiting to be discharged.  (that bed was so NOT comfortable and sleep did not come)

waiting and waiting in the van after discharge with Cassie, singing kids songs, while mom is waiting and waiting at the pharmacy for meds that had been called down and not ready... grrr.... (car is running and a/c on in the hot weather)


After the cardiothoracic team meet early Friday morning they agreed to release Sadie to home.  I knew it would take awhile to be discharged, but had really expected to be gone by noon.  NOT.   I asked the nurses when it would be a good time to check out of the hotel Cassie was in, so as not to miss the physician, etc., she sent me right then.  I wasn't gone 20 minutes and I missed the physician, of course!!!!  It took hours for her to get back to us to start the discharge process.

Jeana had called and said she was going to Jessica's to do a Mary Kay party that evening.  I told her to hurry and come early and we could see her.   She ended up beating me to Jessica's in Eagle Mountain.

Finally, by 2:00 or so we were released with a tank of oxygen and orders for more, a followup appointment, orders to get a sleep study before her followup appointment for sleep apnea and then continued oxygen RX from doctor after that if found to be necessary, pain medicine and Lasix, and we were off to Eagle Mountain in heavy traffic in an over-heated Barney mobile.   I was so ready to go home.  I was too tired to cry over having to go back to the oxygen bit again.

I picked up a party pack at Del Taco for lunch for Jessica, Jeana and I, and stopped in at Jessica's for a late lunch and visit with 2 of my daughters, grandkids Braxton and Baylee Ann.   I was worried how Braxton would take Sadie's scar and bandages, knowing he'd have to have his heart fixed in the following weeks.  He did well.

I let Barney cool while at Jessica's, but I smack myself for not adding antifreeze at the time or at least checking it.  We ended up running the heater in heavy traffic again from Jessica's to Nephi, and I begin to majorly stress.   I couldn't have Sadie exposed to the heat on water pills and recovering from heart surgery, yet I couldn't explode the van in the middle of nowhere either, and Cassie knew even less about cars than I did.

We stopped in Nephi to top off the gas tank.  The engine was so hot that when I removed the gas cap gas sprayed out all over me, and I went into the mini-mart to get use the restroom, bawl, pray and buy more antifreeze, Diet Coke and something for Sadie to eat.  It was a Chevron and I ended buying her the Breast Cancer awareness car and Jazz car...lol.  She loves them.

And we headed out, once again, watching the temp gauge all the way home, but home we made it.  Home sweet home.

Got everything unpacked and in the house and crashed.  Sadie was happy to be home.

Postop Day 3, Thursday, July 15

Natalie Clyde and her husband had visited me and Cassie in the waiting room, Tuesday night, I believe and brought us a care package. Junk food and m&m's for me :)  Sadie a princess nightlight for her princess room and a strawberry shortcake sticker book, and Katie had brought Sadie the stuffed lamb which she adores and laughed out of control when I'd give it to her and say baaaa....baaaa.  She was asleep when Katie saw her, so I took a picture of her with it for her.

Thursday we got moved to the floor.  Yipppeee.. Finally.   I set up my lap top and got some work done as Sadie continued to watch Tinkerbell.  That morning in NICU the nurse had got her out of bed when she was trying to do it herself and she very unsteadily and weakly walked a bit down the hall to find a video and toys.

By Thursday night  she was running the halls on the third floor saying hi.. hi.. hi to everyone and bye bye as she drove around in the lil coupe toy car and playing with her toys.

We were so ready to go home.

However, still on oxygen when sleeping and during the night as her sats wouldn't maintain while she was sleeping.

Postop Day 2, Wednesday, July 14

Wednesday Sadie was perking up and getting more sassy.  They found a DVD player and I got the Tinkerbell Lost Treasure DVD that Cassie had brought her and she watched this nonstop over the next 48 hours or more.

By evening the other 2 drain tubes had been removed (not without a struggle however..lol) and finally the IV in her neck, leaving the IV in her hand and oxygen.  The outer bandage from the chest incision site was also removed exposing the wound and steri-strips to the air to keep dry.  Though she was still on the medication to make her heart pump they considered moving her to the surgical floor to a private room on the floor that night, but there were no beds open, and so she spent another night in NICU. 

Sadie was doing remarkably well.

I, however, was totally exhausted.  At shift change at 7:00 the nurses told me to not come back that night unless they called me and to get some rest.   I left the hospital anticipating a nice long hot shower, a couple hours of work at the computer and an early night to sleep.   However, when I got back to the hotel my Uncle K was there with Cassie and they were waiting for me to go to dinner.

I was so wiped out and not with the program that for the second time since our arrival in Salt Lake on Monday I nearly got into a car accident by pulling out in front of a vehicle at an intersection.  Sunday was the first time when I had Sandi and her girls with me... with both incidences everyone is yelling at me and it was like slow motion in registering in my brain what they were telling me.

Dinner turned out nice, but I was totally spent.  I didn't get any work done Wednesday night and knew I wasn't going to make my line count for the pay period, but I was at the point I just had to let it go, and gave into the idea of sleep. 

Just as I was preparing for a shower the phone rang.  It was the hospital. Sadie was crying and the nurse couldn't get her to take her oral medications.  Sadie had slept a lot all afternoon and I think didn't get pain medication early enough, so she was very uncooperative, so I went back to the hospital and got the medicine down her and consoled her, and after a couple hours drug into the hotel and collapsed.

Postop day 1, Tuesday, July 13

Sadie slept most of the day Tuesday, but towards late afternoon became more alert and drank more liquids and was even offered fries, which she pushed away.  Today they removed the femoral line in her groin, which was traumatic.  I'm trying to hold her arms down without hurting her upper extremity and the nurse is trying to hold down her legs as she attempts removing the IV.  In the struggle Sadie snapped off her PEG tube to one of the chest drains.  The nurse calls over some more help.  The peg tube had snapped right off. They said this was only the second time they had seen this happen. The first time they ended up rigging it somehow to make it work.  They called the surgeon for recommendations.  As this drain wasn't draining hardly any fluid he opted to have it pulled and hope for the best, so we went through the drama of having to pin her down again and this time after removing the tube, cinch up the stitches there to close the hole. She was soooooooo not a happy camper.  Apparently, she didn't think they were removing things fast enough and helped out with that PEG tube.  Funny now that things turned out okay.. but it was so not funny then.   Things have gotta be more eventful than it should be with Sadie Mae.

Sadie was doing remarkable well, otherwise.  She is such a tough cookie.  

Dad had come up to the hospital with me Tuesday morning and stayed awhile to make sure she was out of the woods before he headed back to Cache Valley.   I'm so glad he came to be with us.

Monday night they let Stacia and Sandi come back into NICU to see Sadie, and Katie was upset she couldn't, but we asked permission the next day and she was able see her later in the week.

Now, I'm writing this almost two weeks later and my days and events of most things are becoming a blur. Hopefully, I'm getting the facts on who visited when and what on a correct time line. If not.. consider the state of my stressed being.

Surgery Day, Monday, July 12, 2010

 We were at the hospital at 7:00 to check in.  My dad was with me as we took Sadie back for her exam and changed into her hospital pajama's in preparation for surgery.  Dr. Burch came in and introduced himself and went through the surgical procedures, etc.

The day before in the lab Sadie and I ran into another girl, about age 10, with Down syndrome, dark hair and absolutely adorable, with her mother, who I learned later were Sarah and Donna.
We saw Sarah, Donna and her father in the waiting room before surgery and visited.  Sadie recognized Sarah and sat next her for a bit.  Then when they took us back to another waiting room, where the anesthesiologist and various other doctors visited with us we saw Sarah pass us again as they took her around to a separate waiting room. Sadie followed suite and ran around the corner and to Sarah's arms. The girls were absolutely drawn to each other.

Sadie has had the oral sedation medication before and it has just made her sleepy, yet she's always fought going to sleep, but this time she was on a high!  She belly laughed and giggled all the way to the surgery doors, patting my face and laughing.  I handed her over to the anesthesiologist and she giggled at him and was playing Helen Keller with his face as well.  She had everyone in the waiting room air and the doctors and assistance very well entertained.  It made it somewhat easier handing her over to them at the doors, but the short walk back to the surgical waiting area seemed very long.

 After surgery.  Joni commented the picture looked very similar, other than Sadie is bit. It wasn't as shocking this time around seeing her like this, as it's what I had expected. She really hated the ventilation tube

In the waiting room they gave Sadie a cloth doll in a hospital gown to draw the face and hair, etc., on.  While in the wiating room I put the hospital gown off the doll and dressed George in it. lol.

The surgery was about 5 hours long.  The OR nurse would come and report to be every hour or two.  It took them over an hour just to get her IV lines started.  Children' with DS aren't famous for good cooperative veins and neither is Sadie's gene pool.  She inherited her mothers sappy veins.

It then took a couple hours for them to cut through all her scar tissue.   I didn't realize how tedious this can be, being careful to not cause a bleeder, etc.  She grows an extraordinary amount of scar tissue.  I had expected this to be difficult, as well as the doctor was prepared for it as well.  Remove the wires and break through the sternum, again.

Then came the part I hate the most of all.  The heart and lung machine.  Knowing a machine is pumping her blood for her and expanding her lungs was a very uncomfortable feeling for me, and then the big moment is in anticipation for when they come in and tell you the surgical procedure is finished and she is off the heart and lung machine and pumping and breathing on her own.   What a relief.

The hours went by easier as I had my dad with me, my girlfriend Sandi and her two daughters Stacia and Katie, and Casie who kept me yacking, laughing and tried keeping my mind entertained. Stacie bought me a couple Cokes and fussed over me.   Dad slept some, paced the halls a lot, and answered calls from my siblings.

When it was all done the surgeon came out and took dad and I into a conference room and told us the surgery was a success for what they went in to do.  They removed the subaortic membrane and repaired the damage to the aortic valve.  He told us that though subaortic membranes and thought to be congenital he didn't believe Sadie's was, but rather caused by a stitch from her first surgery, and that it is probable that this will regrow and will need removal in the future again as many times as possible.  He told me they ligated the PDA (which I'm not sure why.. this was patched with her first surgery, as well as a patch/wall between the right and left ventricle, mitral valve and right artium).

He also said the tricuspid valve still had problems, that he could have purse stringed it, but then it would have constricted the already too small pulmonary valves, so he left that.   He also explained that if the membrane regrows and they go back in when she's more adult size, around age 10-13, they may consider her for 2 heart valve replacements, which surprised me.  I knew they don't consider DS patients for heart transplants and I thought the same went for valves, and so I asked him about this.  He said valve replacements are considered case-by-case.

All this was a lot to take in and I'm still not sure I got it all straight in my head or even exactly the way he explained it to me.  You'd think I'd understand the heart and how it functions, etc., by now. I should. I try.  I remember getting an A for a drawing I did on the heart in health, but then that was for my art skills I'm sure and not my brains.

We then had to wait another 45 minutes or so after our visit with the surgeon to see her in NICU.

They kept Sadie in soft restraints.  I had warned them how active she is and intolerant of Bandaids or anything on her and that she would pull out everything she could upon awakening. When she awoke she would jump as if startled and bolt straight up, as much as one can when hooked to so many things.  She hated the vent tube and would moan, but they didn't remove it til later that night because she struggled breathing on her own for awhile.   And thus began the countdown process at removing one tube or line at a time. 

After removing the vent tube they offered Sadie clear liquids which she guzzled.  Her lips were all puffy and looked like she had a lip job.  They kept her sedated pretty much and on morphine for pain, but she would do her startling jumping up thing often and kept everyone on their toes. She could not be left unattended at ALL. 

At shift change our nurse and I tried telling the new nurse coming on that she is very active and cannot be left unattended for even a second as she would bolt up and start grabbing at things.  She bawlked at this and acted like she was cool and could handle anything.. hahahaha... When I returned after 8:00 the first thing she said to me was.. "YOU were right"!!  and from then on one of us was always right next to her. 

Dad and I had run down during the shift change and go a burger.  Dad left earlier in the evening after we got back.  His eyes were blood shot and he looked absolutely exhausted. Neither of us had slept the night before and the stress had taken it's toll on us both.   I didn't dare look in the mirror.   I got back to the hotel late, took my meds and crashed until the next morning, knowing that while she was in NICU was the only time I was going to get any rest at all.