We Are Home

(and I already have to worry about IEPs). Grace and I were released yesterday and she is happier than a clam at high tide. She has been giggling and dancing around and eating like a horse. She was so happy to have her Auntie Katie and cousin Elena to pay attention to her and give her lots of lovin'. I mention the IEPs because, as springtime usually brings IEPs, come what may, they must be planned and held regardless of who popped what stitches. So today I'm working during nap-time on my two IEPs planned for tomorrow and praying for quickies so I can get home to my girls.

Grace Owes Me Big Time

Imagine if you will -- a small child upchucking gelatinous globules of fresh blood at you, on you, on the nurse, your pants, crying, poking with needles, more poking, more crying, OR, ER, CBC, fear in her eyes, nausea and fear in your belly, racing thoughts of possible outcomes, is she scared without you there? Is this strange doctor a quack or does he really care as much as he appears, heart pounding some more and....

she is just fine. They stitched up two openings: one in her palate, one on the inside of her cheek and not a spot of blood in sight. Grace has been eating like a horse for almost 3 days, unlike the week she spent at home taking one bite here, one sip there. My hypothesis is that she was bleeding for the whole week and swallowing the blood made her nauseous which led to no desire to eat, but when she got on her belly in the crib and got her butt up the air, the blood was heading south and that was the only time we saw it, until she had lost so much that she had to have two? more units. Dispensing it confused me so I'm not exactly sure if she got one unit before the surgery or two.... we will hear most or some of the test results in the morning and see the hematologist later as an outpatient to go over possibilities. Thanks to everyone for your prayers AGAIN!

Not for the faint of heart: want to see the pic I took in the ER of Grace's dangling ..... participle? No, it's a dangling blood clot stuck to, heck, I don't know, but the nurse and I were afraid to yank on it in case it was shoring up a indeterminate geyser. Gross!

A scary night with Grace

Grace woke up last night at 11:30 or so with lots of blood on her pillow cases. After cleaning her up and re-medicating her she cried for 10 more minutes. I went to check on her and blood was just STREAMING from her nose. Not dripping, but one solid stream -- scared the daylights out of me and made me want to run to the ER at Scottish Rite. Her little crib looked like a baby crime scene. Kevin held her for about 10 minutes and it stopped. We kept her in our bed all night and I'm pretty sure all 3 of us slept another 18 minutes for the night. Her regular pediatrician checked her out this morning and said her blood levels were low, but she didn't think she needed another unit of blood unless it happened again. She's been drinking more than usual this morning so by the grace of God, she won't have a reoccurrence. I think Kevin and I will have to work guard duty tonight, taking shifts.

On a Completely Different Note...

I love to watch medical mystery or surgery shows -- generally the more unusual the better, but this sad story on National Geographic last night was more sad than interesting. This poor guy named Huang from SE China is called the "Elephant Man of China" and for a second, I thought it was the guy we saw in Chongqing with a sign asking for money to fund a surgery, but it was not. (remember that poor guy, Nancy?).



What was so strange about the guy we saw in Chongqing was the reaction of our guide, Christy. She was adamant that we were not to give him too much money. She said 100 yuan as too much! (about $15). I wish I had given him 500 yuan now. First, it was none of her business how much we gave him and secondly, if this poor guy has to beg for money for a surgery that his government should provide for him, he deserves it, especially from an anonymous American who has plenty to spare (relatively speaking, we are millionaires to them). Grace got the top plastic surgeon to perform her palate surgery for no other reason than God put her in our care with good insurance near the best children's hospital, not due to her being more worthy. So many people in the world have to beg and work so much harder than we do to have the bare minimum in life and we all take it for granted. God bless poor Huang and that other guy in Chongqing.

P.S. I won't even go into the fact that Huang's parents spent so much time talking about the shame Huang has brought to the family, and how the eldest son should provide for them and he can't even work .....

Thanks Again

I had to post this funny video from about 20 minutes before Grace's surgery.


Thanks again to buddies who send prayers, bring food and offer help, I really, really appreciate it more than you know. Dawn and Chloe brought us great food for the girls with hidden veggies mixed in (okay, I'm blanking on the name of the ..... creative chef? or the .... chef who mixes in food so kids will eat the food or....), but the girls scooped up the princess noodles right away).

There Really is No Place Like Home

We woke at 4:15 to some loud talking in the hallway of the hospital and when I looked over at Grace, she was gone! I jumped up and she was at the FOOT of the bed, face down and butt up. Like an acrobat, she had flipped over all her cords and managed a small feat of removing her left splint and flipping over for comfort (see photo), but unfortunately, look what she did to her face in her struggle. Note: face down is not a good position for swelling faces.

She was not too affected by it, mood-wise, however. The surgeon's associate asked if we wanted to stay another day for safety sake? No thanks! The care we received was top-notch, but I want to go home!



Frannie had a blast with the Ruccis and to boot, they sent us yummy meals too.

One More Night

We saw the doctor this evening right after Grace switched to Lortab and drank a good bit of Pediasure and juice, so they want to make sure it continues overnight. We should be home by 10am, thanks be to God. I will miss my nursing helpers, however.

Pray for a good night sleep for the little booger. She is presently very mad at me for putting her splints back on her arms (hey, don't pick at your gums nd I won't have to you little goober).

Not Home Quite Yet

The word has flipflopped about our departure today. Although she did CHOW last night (see pic), wolfing down lots of buttery noodles and pear bites, she will only do that on a good bit of morphene. The goal is to get her to eat consistently on something less potent. She also won't drink AT ALL. We slowed her IV fluids to almost nothing, but she still won't even drink melted ice cream, grape juice, water or milk.

Frannie and Kevin came this morning to visit. She is having a great time with the Ruccis, thanks again everyone for taking such good care of us! I'll get Grace off morphene yet.

Better, Thank God

We are still in Pediatric ICU, but the doctor saw her this morning and requested a regular room for us for tonight. She lost enough blood yesterday that they had to give her a unit of blood at 10:00 last night. Yesterday's picture shows the trumpet tube in her nose to keep her airway open. Her respirations were so low it made me VERY nervous. She is doing a LOT better today, however. She actually nodded for food and ate a little lemon snack cake (one WW point, go girl) and has taken a little bit of water too. Not a lot, but some. They have tested her blood levels again and she reacted well to the blood.
I spoke with Dr. Burstein and his nurse practioner this morning who told me they had to do more extensive work than they thought during the surgery, but that it turned out better than they thought! They had to actually (eeeek) break both cheek bones to spread her gums wide enough, move bone and gums back at the front (eeeek), not to mention sewing up her palate. She's a trooper. No giggles yet, but she was halfway smiling at her Wiggles video.
Thanks Nancy for taking Frannie for us. She is never going to want to come home!

After 5 hours of anxious waiting...

they finally brought my baby back down from recovery. She had some "complications" with excessive bleeding and problems with her airway. Hmmm. They moved us to room 132, then they casually mentioned we might like to spend the night in ICU instead. Hmmm. Okay, so where is she? She's on her way. One hour later - where is she? On her way, really. Okay, when can I see her? Soon, really. Thank God for Lisa, Lisa and Mary Pat. Thanks so much for the company, the friendship and goodies.

When I finally laid eyes on her, I couldn't believe how puffy and LITTLE she looked.

Grace is out of surgery

but we haven't seen her yet! The surgery was finished about 90 minutes ago, but the nurse told us they were having a problem getting her bleeding under control and some issues with pain management. Oy. Glad I'm not there to take control of this situation. We are just sitting here in room 132 eating and drinking lots of Guinness. In my dreams. We are waiting for Grace! We took a movie of her on her loopy drugs before they took her away and it was hysterical. She looked like ME after about 15 Guinness. Kevin has to leave in a little while to get Frannie and I'm not sure what is going on!
Later.

Erin Go Bragh and Surgery a Go Go

Unless Grace wakes up vomiting or something similar, we are scheduled for surgery at 11:30. Luckily Kevin has today off by chance and we can both be at Scottish Rite with her. I will try to post updates and pictures later, but I'm not sure about computer glitches at CHOA. God be with her and her medical team!

Deep Thoughts

Nice getting caught up with you Shawny. Love you!

I was just sitting here, thinking about life in general and it brought Jack Handy to mind. Some of my favorite DEEP THOUGHTS:

The face of a child can say it all, especially the mouth part of the face.

If a kid asks where rain comes from, I think a cute thing to tell him is "God is crying." And if he asks why God is crying, another cute thing to tell him is "Probably because of something you did."

If you drop your keys into molten lava just let 'em go 'cause, man, they're gone.

In weightlifting, I don't think sudden, uncontrolled urination should automatically disqualify you.

Maybe the Second Time is a Charm?

Grace's surgery is now scheduled for March 17. Maybe the luck of the CHI-RISH will be with her. Thanks for thinking of and praying for her! Frannie is (hopefully) all scheduled for Pre-K without anyone throwing any punches! Any parent who has had to wait in line (in 30ish weather) to register their child, hoping to be one of the first 40 to get a spot knows what I'm talking about, yikes.

Grace breathes a huge sigh of relief

Surgery postponed until further notice.

Maybe it's a good thing?

I'm trying to be positive, but a mere 36 hours before Grace's scheduled surgery, she came home from daycare with a chest cold. Frannie is also stuffed up, but in her nose. I'm not sure it's too bad, but, I have a sick feeling it will all have to be postponed. I'm waiting to hear from the doctors. Ugh.

Late, as Usual

I STINK at multitasking, I gotta tell ya. Kids, work, multi-households, surgeries, Georgia Pre-K, yadda, yadda, I just can't do it without complaining, whining, crying or breaking down. Thanks to my buddies (you know who you are) for listening during all this madness.

Grace goes in for the BIG surgery on Thursday. Here's a pic or two of the before face. Grace and I will be staying at Scottish Rite for a night or two and Frannie will be with Dad and, if needed, Nancy. Our buddies Brett and Lisa are ALSO checked into Scottish Rite so if they are still there on Thursday, we will have hospital buddies. I'm taking at least two weeks off from work to attend to Grace and her ailments. Hopefully Frannie will be understanding (ha ha) of Mama needing to tend to Grace's boo boos. Pray for no back problems during this stay (ugh).

Snow day pics (it is supposed to snow tomorrow too??), Grace hanging out in the dog crate with Clancy and celebrating Chinese New Year at our favorite (my favorite) Asian restaurant, Lavender's Bistro. More pics to come this week, I promise.