Back Home from Hos-Tipple

Frannie talks a lot about Grace going to the HOS-TIPPLE so now she's got US mis-pronouncing it. Last week I worked 11 and 12 hour days at school and said I was going to take Grace to the doc if her neck did not improve, which it did not. The doc sent us to have an x-ray in case. X-ray sent us to have a CAT scan at the ER at Scottish Rite. The ER doc called the plastic surgeon who worked on Grace's palate who was on the floor coincidentally. We had been withholding food and meds and juice from her since noon in case she needed to be sedated for the CAT scan. By the time we saw the doctors, it was 6pm and Grace was crying HARD and grabbing the back of her head. Hmmm. Dr. Williams, the plastic surgeon, was so, so nice and explained how the throat sutures would cause her to hold her head stiff like a stiff neck, but since little kids RARELY get herniations in their necks, the likliest explanation is just plain ole pain from the surgery. In the meantime, he could see the agony she was enduring and decided that keeping an eye on her for a day or two in the hostipple was the best solution while giving her enough morphene to make her smile for the first time in 9 days. It worked. She ate like her normal self and slept well. We were discharged yesterday morning. She seems to be doing well today, even without the morphene. We are sticking to Lortab and Motrin and we will slowly wean her off that this week. My little Brett (my friend and student) was in the ICU so I got to see him and spend some time with him and Lisa. Thank you so much Lisa for your friendship. Just when I need a buddy, you happen to be right there to hold my hand. We love you both so much.

Later in the day I got to have dinner with my Digit Friends, one of whom, Donna (like I need to introduce Donna, come on...), far left, is going back to China again for daughter number 3! So excited for the Straight family. So good to spend some time with Donna, Lucy and Darcy and have a few laughs. And good Chinese food to boot.

We Just Missed Our Nurses and Doctors

Grace and I are at Scottish Rite, just visiting. And sleeping here and eating here. And getting lots of meds here to stop the blasted pain that Grace has had to endure! There's news, but I don't have time to post about that. She has a new hole in the roof of her mouth, but we believe the p-flap is intact.

Back to Work Despite the Pain

Grace's neck is a bit better. We all got haircuts yesterday (picture forthcoming) and Los Hermanos ALWAYS works to cheer us up (our FAVORITE Mexican Restaurant, not to be confused by The Brothers, a Mexican band). I'm trying to cram 32 hours into 3 days of work, so I don't have to use sick time this week. Be careful what you ask for, I'm swamped.

We are juggling appointments (well, it's all Kevin doing the appointments, really), school pick up and drop off for Frannie, keeping track of all Grace's meds and whims (I want an egg NOW -- wish she could actually say that, but.... she has culinary wants and needs this week which do not always align with our current refrigerator stockage). In the meantime, I'm at work and Kevin is bonding more and more with Grace. She could use some manly bonding time. All we seem to do is paint our nails and style our hair. Dad can teach her how to read the sports page and how to load a gun. Just KIDDING!

Is this a joke?

Grace had a very strange day. Started off with lots of pain (she sweats like a fiend and has no temperature, gets shaky and cranky) and she had a BIG meltdown about 11:00. Put her to bed and she was crying out loud in her sleep. She's been turning her head like she has whiplash, but with no temp and no sign of blood, I didn't know how much to freak out. Spoke with the PA again from the plastic surgeon's office and she called in some more pain meds and recommended Motrin for the probably neck swelling from the position they put her in during surgery. We will see the doctor tomorrow. After the Motrin, she was like a different kid. Kevin is home now for 4 plus straight days, thanks be to GOD.

Never a Dull Moment

We had a little scare today when Grace kept picking at her ear, picking, picking and telling me her mouth hurt for the first time. After eating a chocolate pudding, she had a trickle of chocolate come out of her nose and I almost burst into tears. THAT is NOT a good sign. After picking at the ear for the 20th time a big black chunk came out, a dried blood clod, I guess and she stopped complaining. I called the plastic surgeon's waiting service and asked for a call back. The PA called and said that if the palate has opened up again, there's nothing they can do about it now anyway. Oy. I'm so nervous. I tried to look and could not see much, but it all looks healthy and sewn shut to me. Maybe it was a fluke. Maybe she had that pudding in there since Tuesday and she was holding on to it. Nothing I can do about it except keep all sharp objects away from her. Breaks your heart when you think of the pain. Who is the patron saint of cleft palates? Saint ____________, Patron Saint of Cleft Palates, pray for us.

Going Home, Yeah!

She had a great night. We slept a lot (and I felt the prayers, thanks). Doctor is sending us home this morning! Frannie can have a fun overnight with her buddy Mary Pat, but I can't wait to see her! Grace tells me she wants to stay here. Sure

Honestly,

God GIVE ME PATIENCE. I had patience until about an hour ago. I want to go sleep upstairs somewhere and just let her neighbors hear the wrath. Ay carumba. It's not like any of the crying makes a whole lot of sense. She wants the light on, NO! LIGHT OFF! She kept yelling something like ya ya! ya ya! and I wanted to scream I don't know what the hell ya ya is! But I refrained. I let her cry and I regained a little sanity and tried to redirect her from whatever ya ya was. Oy vey I want to sleep. I pray we can go home tomorrow. We are both tired of this small room. She just got her 9 o'clock Lortab so I'm praying she will crash for a long time. Pray

Grace is just a little testy

She only went to sleep at 2:00 for a nap. We were both pretty wiped out, but she slept solid for 3 hours, hooray! She wavers with her moods, depending on when she's received her meds. I was trying to not upset her last night, responding to every whimper and today I knew I would NEVER get any sleep at all if I didn't just walk away and lay down in my own bed. That really ticked her off and she obviously wants me at her side to fetch her robe or feather fan, but I just waved at her and told her "I'm right here. We have to sleep, I'm right here." and she finally gave up and passed out. Tonight we both need our sleep so crying or not, I'm lying down!

Grace is still a trooper, however....

5:30 am and Grace has been crying or whimpering pretty much all night. Think we need to re-evaluate pain management. Personally I think she is hungry and her hernia sutures are the parts that are bothering her the most. I pray the doctor has early morning rounds. Grace let me sleep from 1:30 to 3:15 and has been miserable ever since. I could be way off base, but I'm willing to bet her nurse is not a Mom. You can just tell. She's not mean or anything, but Grace's obvious pain would affect any Mom and this woman just doesn't get it. She KNEW she had a lot of pain and when I asked for her morphene in between yelps, she later told me she gave her "the lower end" of her alloted dosage. Thanks a bunch. An hour later and she is still wailing in pain. Is the other part of the dose coming out of your paycheck? Standing at the nurse's station, I couldn't help but hark to Shirley Maclaine in Terms of Endearment when she screamed "GIVE MY DAUGHTER THE SHOTTTTTT!!!!!!!"

Grace should get the trumpet out of her nose this morning too which will help. She's been whimpering for Daddy too so his appearance will help I'm sure. Given my throbbing cold sore and my lack of sleep, let's hope I don't start to resemble Woogie in the next day or so...

She's All Done

Dr. Williams just came to give me the update. No room # yet, but she will be in recovery for about an hour. He said all went well. She now has a pharyngeal flap (didn't the Wiggles sing a song about that?) and I'm nauseous about her waking up alone in pain. Kevin went to get Frannie at school and they are coming back here in a while. Watching a movie and trying not to vomit while I wait. It's not quite that bad, but I do feel sick to my stomach.

UPDATE AT 7:00 PM. Grace is such a trooper. She's sleeping mostly and complaining very little. She hates the arm splints -- if it weren't for them I'm sure she'd have pulled her trumpet tube out of her nose by now. The doctor will remove it in the morning. Frannie and Kevin just left so we are watching Praise Baby.

Grace is in Surgery

We sent her back about 10 minutes ago, praying with her and holding her little floppy hand. She was so loopy from the drugs, but smiling. The estimated time in the OR is 3 hours, given the 3 surgeons involved, working on her ear tubes, hernia and palate. Update later.

Then and Now

We've had Grace in our hands for one year today! One year ago she was a bit stinky, very, very tired, kinda bald, skinny and a fashion disaster.



Some big differences in Grace's life: she is not forced to wear navy tights with pink pjs when it's 110 degrees out, she has hair on the back of her head, she can drink through a straw now and she gets to have Kevin as a Daddy!

Night and Day

Frannie and Grace are so different -- I mean truly. Frannie is so prissy with her shoe fetish and her obsession with princesses and looking good and sparkly STUFF. Grace, however, laughs at the absurd, a dirty face and people falling down. Grace also loves babies so much, I think she feels she's ready to be a Mom. She spent half the time in Mass yesterday putting a diaper on her baby doll. She wiped that baby's behind with the equivalent of 14 baby wipes, ensuring a proper diaper change. Today at the doctor's office we found a book with a picture of a crib and when you lift the crib flap, there's a baby shown in the crib. She stared and stared and pointed and talked about that baby. What's so funny is that she went to another picture on the same page with a flap showing a blanket and she gently took that blanket (pretend) in her hand and gently placed it on the baby in the crib. She looked at me out of the corner of her eye for approval and we laughed and laughed. What a KooK! I think I need to get her a new baby doll for the hospital stay. I need to find one with a whole kit of babydoll-sized diapers and bottles and binkies. Anyone out there need a babysitter, Grace will sign up. PS We were at the doctor today because Grace's cough seemed to be worse to me so I wanted him to check out her throat for strep and to listen to her breathing. She's fine!

Patriot's Day!

The girls were supposed to wear red to school today, so why not celebrate the Red Sox AND wear red, white and blue for Patriot's Day too? Kevin is working in the Swamp this weekend and flying right up to NY for his Father's funeral. We agreed that the 3 Fay girls should stay home to keep Grace healthy for the surgery. She had her last pre-op appointment this morning and they checked out the potatoes she's been growing in her ear canals. It's so counterintuitive to leave that junk in there. I want to waterpik it out. I know, I know!

Tomorrow brings Ringling Brothers to town and we are going! Can't wait to see the girls' reactions.

We will be praying for all the Fays this weekend. Wish we could be there to hug everyone. Thanks to my Oakland family for all the nice cards and the gorgeous plant. I'm overcome with gratitude for such wonderful and thoughtful co-workers.

Tell Fran We Love Her

Kevin lost his Dad yesterday, peacefully. Kevin spent the night in the room with him and stepped out for a few minutes when he passed away. I have heard from hospice workers that dying people truly WAIT for their loved ones to leave the room before they pass. My prayers for all Jim's sons are for peace and for good thoughts about their parents being together again at last. I am sure St. Peter had a smile on his face and saluted him saying "James Aloysius, come on in!"

Busy Week

Kevin left this morning for NY to visit his father who is very, very ill. Last update I heard was that the mass they saw on the scan is a brain tumor and since he is 89 years old, the family (mostly Kevin's brother Tom who has taken a huge part of the burden on by himself due to his close geographical proximity to his Dad) decided that pain management is the wisest course of action. He's not doing well at all. I'm so glad Kevin planned this visit before things got too bleak. Pray for all of them because we all know it's never easy to watch your parent suffer.



The girls have multiple, multiple appointments this week, leading up to Grace's surgery and I may lose my mind, trying to keep up with my daily to-do list. Three pre-op appointments, three speech therapy appointments, two dentist appointments, one dematology appointment and one audiology appointment! No kidding! Not to mention school for me and the girls.