Thursday, November 28, 2013

Happy Thanksgiving!

This is my third year in a row that I've had a new child for Thanksgiving. Last year, I had two new ones! I wonder what next year will bring...?

All I know is that I'm very thankful to have all of my girls and that my baby is recovering well from her surgeries this month!

1.7cm Distracted

I've turned the screws 17 times now, so I've moved the back of Apple's skull back 1.7cm now. Here are pictures from our 2nd day home (purple p.j.s) after the surgery compared to those I took yesterday (yellow Xeroform).

Just look at that round skull!

She's imitating me holding her head steady.

Monday, November 25, 2013

Happy 13th Birthday, Blossom

13 candles to blow out.

Making her wish.

Birthday dinner at her favorite buffet restaurant.

Something interesting I learned tonight, my girls did not know the tradition of trying to blow out all the candles in one breath to make the wish come true. I remembered Jie Jie's first birthday party at home when I realized she didn't know how to blow out candles and I had to help her. And, yes, it's another store-bought cake. I'm not beating myself up, I'm glad there are cakes to go out an buy during times such as these, but I'm determined to make the baby's cake next week since it's her first birthday at home.

Sunday, November 24, 2013

My Little Sunflower

Apple is cheerful this morning, as long as I don't lay her on her treatment/changing table! She still looks a little tired and her skin is started to flake where the rashes and hives were. I think we can add Coban to the list of things she's allergic to or to avoid. She gets big blisters from it and I'm not sure if it's from the material it's made of or that when it's wrapped, it creases her skin and cuts off circulation and fluid flow. It's happened at home with her hand orthotics, too. After it was removed yesterday from her IV site, I could see that her thumb was HUGELY swollen, which I'd mentioned earlier, but, for some reason, the nurses didn't address it. My mistake, I should have insisted, but it seems like such a small thing compared to everything else at the time! However, any open skin in a hospital is super dangerous due to the risk of MRSA and other antibiotic-resistant organisms floating around the place.

I made this little outfit years and years and years ago, long before I had children, long before I even owned my first home.

From Yesterday in the Hospital

Finally calm in the stroller around 9am, after The Horrible Night.
Just look at her poor mouth from all that screaming.
The left side of her head is so swollen.

After lunch, she gently laid herself down and took a nap before I had to turn the screws. Notice the pulse/ox monitor isn't on her any more. She took it off.

See the pulse/ox monitor? The little glowing light by her right leg? The nurses didn't dare try and put it back on, they didn't want to upset her or fight with her any more.

This kept unnecessary people out during the night. Last time, someone came in to noisily empty the trash at midnight and 6 am!

Looking suspiciously at me as I loaded her into the stroller to come home. After all, last time I wheeled her around the hospital, she ended up in the O.R.


UPDATE: I just went in to check Apple and took these pictures. Definitely narked!

It's been 36 hours since she's had any drugs whatsoever, yet look at her! I wonder if this all started with an accidental over-dose at the end of surgery.

The strangest thing just happened...

Apple woke up this morning at 8am, which is early for her. She has been happy all day and did not take a nap. She has not appeared sleepy at all today, until a few yawns at 11:30pm. I put her on her place for the wound care and screw turning and she got upset. She even got upset when I went to cut her hospital bands off because the nurses scan them before giving any meds. Anyway, she started rubbing the tip of her nose, which itches when she get morphine, something I was told is a common reaction.

She got very upset when I pulled out the screw driver. I had to pin her down to turn and she was screaming. Then, it was over and I got her calmed down and sat down at the computer with her on my lap. In just a few seconds, her head was bobbing and then she was asleep, like passed out cold. I shook her shoulder and said her name and she sort of roused, but passed right out again. Then she started scratching her nose and lips more.

I think that the stress cortisol and adrenaline she just released when I turned the screws, amplified the effect of the drugs still in her system. When I put her in her crib, her eyes rolled and she startled like she did in the hospital, which the nurses said was common when on narcotics.

Pretty scary to have a baby still so drugged at home without monitors keeping track of her heartrate and breathing. I'm going to stay up for a few hours and keep my eye on her!

Saturday, November 23, 2013

Alive and Kicking

We are home, as of late last night, and Apple is recovering well. She is still clearing the meds from the system. I can tell by her still unusually rapid heart rate. I have not given her any more medication of any kind and she doesn't seem to need anything for pain. She looks a bit worn out, but she's cheerful. I'm pretty sleep-deprived and hope to get caught up on sleep tonight, if possible. Apple still has what the nurse calls "anesthesia lungs" so I'm sleeping lightly so I can listen to her breathing.

Jie Jie is sick. I just took her temperature and it's 104.4 so I'm watching her closely, too.

All in the life of Supermom! Just our norm.

Friday, November 22, 2013

We Barely Survived the Night

The night got worse right after I posted last night. It turns out that Apple had one of those opposite reactions to the pain medications and she was ramped up like a locomotive on full throttle. She bucked, arched, kicked, screamed, writhed, and more until about 4am this morning. I could see she was clearing having some kind of delusions that were scaring her. Around 2am the nurses came in wanting to give her Ativan, but I refused. It could have put her into orbit. There was no way I was going to risk a bigger reaction than what was already going on.

I took her out of the crib and put her in the big stroller beside me where she was safely buckled down without any bars to kick. Slowly, ever so slowly, the moments of relaxation got longer and longer and by about 9am this morning my baby was back! All day today, the nurses from last time and this time have been stopping in to see her as her real self again. She's a charmer and everyone loves her.

At rounds this morning we all discussed options for her further surgeries so that this can be avoided, if possible, but there are no guarantees.

Thursday, November 21, 2013


This is after 3 hours of violent thrashing and screaming.  She's still fighting, as fully drugged as was safe.
See how she's avoiding every attempt I make at contact? 
It was so sad to not be able to comfort her and to see her turn so inward.
Finally somewhat comfortable, but still restless, by 11:30pm.


Going happily off to the O.R. with the anesthetist due to Versed.

In the PICU I thought I finally had her calmed down, but it lasted only 30 minutes. See how utterly spent she is?

Her heart rate is the green number and I saw it hit 200 and put my hand on her chest. It felt like her heart was going to fly right out.

Fed, cleaned up, dressing on wounds, bed ready and trying hard to settle down.

Finally reached out for Mama to cuddle and comfort her.

Finally resting with Kitty, who is really a bear.

Surgery Went Well

Surgery went very well. The new redactor fit into the old one's place using slightly larger screws so only that side of Apple's head was opened up. They got the IV started in her hand with one botched attempt in her foot. She was brought directly up to the PICU, where I was waiting for her. Then all hell broke loose!

She absolutely flipped out! She flung herself all over the crib violently. The nurses scrambled to get pillows to put around her so she wouldn't hurt herself, the Xeroform dressing that the surgeon had on the incision fell right off, she was kicking and screaming and arching off the bed, shaking her head and body from side to side, flailing her arms and legs. I kept trying the little Pedialyte bottles that worked so well last time, but it didn't help her. I tried to hold her for over an hour, but she continued and kept kicking her feet against the wooden arm of the chair. I had the nurse pad it. She kept kicking against that arm and arching, propelling herself backwards and headfirst off the other arm of the chair so I had to keep catching her and restraining her. All the while, she was screaming and arching.

Three nurses were in the room going back and forth, back and forth saying, "What more can we give her?" I okayed giving her all the meds she was allowed to have, lots of morphine, Hytec (vicodin & Tylenol), Benadryl, more morphine. The doctor came in and ordered even more morphine and she continued to fight like a tiger possessed. I'm sure her feet are going to be bruised! I had about 1/2 hour of her being almost calm, then it started again. I finally had to put her in the crib, I was so afraid I'd drop her. There, with yet more medication, she calmed as long as no one came into her visual range, even me. If I approached her, touched her, or she heard my voice, she'd move away from me and cry. It was so sad to see her this way.

I finally grabbed my cup of water from the table near her bed because I was hot and thirsty and she saw that I had it and immediately made eye contact and it was like a telepathic message: She was ravenously hungry, not having eaten for over 12 hours, while in a huge growth spurt. I immediately had the nurse heat the food I'd brought for her and she downed it in a morphine haze, then proceeded to eat three containers of Jello and drink two bottles of Pedialyte. She still cried when finished, but it was all I dared give her so soon after surgery.

I got her cleaned up and fixed her bed up and was about to sit down to blog when she reached for me and sat up toward me. I cuddled her on my lap until she started kicking again and now she's settled back in bed and calm for the most part, but still having episodes of crying and kicking. She did use her feet to bring her "kitty" up to her hands and its on her chest right now. The left side of her face is starting to swell, but I don't think it will get as bad as last time.

I realized that Supermom would never not have diaper pins in the diaper bag, so I searched it thoroughly and, much to my delight, came with diaper pins! Not any diapers pins, mind you, but the old-fashioned Dritz pins with little blue tops that slide and lock. The BEST diaper pins, in my oPINion! So Apple is using the hospital receiving blankets for diapers and the nurses think it's great.

Finally Got Some Pins

But they are very small and the towel is very big, so I had to used 8 of them!

Waiting for an Operating Room

We are back at the hospital hoping to get the distractor replaced but we've hit some snags. First, Apple is most definitely allergic to disposable diapers and the Benadryl she got last time masked it. She's sitting in pre-op with a towel taped onto her because she was getting hives on her bottom from the disposable diapers. And we've been sitting her for three hours! There is still a case in the O.R. and we have at least another hour wait.

This might not sound so bad, except my baby hasn't had anything to drink since 8:30 this morning and she's getting dehydrated. Imagine a baby with tiny little veins, who is super hard to get an IV in, who is now dehydrated, which makes those veins even smaller!

On top of this, the distractors have to be symmetrical, so if the surgeon can't get the new ones on the old site, he has to move the one on the other side, too, which means opening Apple's scalp up from ear to ear again. Please pray that he can get them on the same site using bigger rivets!

I'm quickly becoming a very irate mama!

Apple is still in good spirits, but I'm not sure how much longer that will last. I know that I've not had anything to drink either and if I drink in front of her, she'll fall apart.

On the plus side, Apple has gained 2 pounds since Nov. 5 when she had her last surgery! She's been eating like crazy and crying when the bowl is empty. So I'm not surprised by such a big gain. It's good for healing and growing bone, too!

Apple figured out how to take her socks off. This is a pretty nifty trick for her since it means she's using her thumbs and they are strong enough now to do it!

Definitely hating the Pulse/Ox sensor.
She still has bad dreams about this thing!

Baby joy is a box of tissues to pull out and shred.

Tuesday, November 19, 2013

Happy 15th Birthday, Sissy!

When Sissy realized her birthday was going to be spent running Apple to the medical center, she cried. However, Supermom saved the day by assuring Sissy that we could still have cake and ice cream on her birthday, so on the way home from the medical center, I stopped at a grocery store and - yes - I bought a cake. Since we were arriving home at 9pm, there was no way Supermom could whip up a cake, so I did buy one, and some instant frosting in a tube that will probably rot our insides, then I scraped off the frosting carrot (it was a carrot cake) and I wrote Happy Birthday on it and Sissy thought it was great and that's what counts!

Emergency Medical Run

I was sitting next to Sissy on the sofa, this morning, with Apple on my lap, when Apple leaned forward toward Sissy and did a sort of face-plant into Sissy's leg. Sissy must have felt it, and Apple sat up looking a bit astonished, then I saw it. The screw/pin on Apple's left side was pointing downward. Sissy was in the middle of a birthday phone call from her friend and I had her end it quickly so I could put in a call to the surgeon. Sure enough, he wanted to see us ASAP. It took me about an hour to get things together for a possible overnight hospital stay, then we hit the road, in my rental (my car is in the shop from the bang up from our last trip to the same hospital!) and trekked 3 hours to the medical center. Once in the exam room, the surgeon removed the wrapping I'd put over the screw/pin and it was completely off. I'd hoped that the removable handle was all that fell off and that it could be reattached, but no such luck. The metal had sheared off behind the removable part. Now Apple faces surgery within the week to replace the entire redactor. The part is on its way from Atlanta. She is scheduled for Tuesday morning unless another spot opens with the neurosurgeon before then.

The plus side for Apple is that she gets about a week off of me turning the screws, which she's taken great and hysterical exception to lately. As of yesterday, we've increased the space on the back of her head by 1cm and it's noticeable!

Monday, November 18, 2013

What Super-Mom Does While the Baby Naps

Cleans the roof and gutters before it rains!