Saturday, September 20, 2014

List of Thoughts

I have a list in my phone that I compiled as blog-worthy moments happened in the hospital. I'm in a list mood, so this post will be an expanded form of that very list.

Stuff He Broke
How awesome is it that the first thing on my list has this title? Ah, T-Man. He falls behind on every assessment in every area of development, including fine motor and gross motor. (and we have had multiple assessments) So he has some mild deficits. Unless he's not supposed to get into something. If a thing is off limits in any way, the child becomes quite dexterous. He broke a phone, he dismantled a blood pressure cuff,  he shot IV-protecting socks across the room, he ripped labels from their permanent locations, he nibbled at his IV, he climbed up the side of his crib, he ripped the case on my tablet, he removed his cardiac leads, he chewed through 2 IV arm boards.

T's Development
This one is sorta sad for me. During both admissions nurses told me they were confident T would catch up with his peers once he started receiving therapy. I didn't have the heart to argue with them, or tell them that he already has a boat load of therapy. The truth is, he probably won't catch up. Not ever. But he's so winsome that people can't see that.

Almost everyone I admit his challenges to is quick to warn me not to hold him back or limit his future. Are you kidding me? I drag him and his siblings to a minimum of three therapy appointments every week. I have had untold meetings and doctor appointments to get him the best resources possible. I have re-tooled my parenting, learned sign language and changed out our toy stash. I'm not limiting him. I'm giving him permission to hop, dawdle & sing to his own drummer.

Work With Kids?
Speaking of how I've changed, one of the nurses was there when I was tricking T into taking some gross medicine. He was astounded. He asked, with a bit of awe in his voice, "Do you work with kids?" I laughed and said, "No, but being Mom to this guy has made me more patient and wily."

Kinetic Sand
Someone who does work with kids, though, is T's Early Intervention Specialist, Miss Jan. Our whole family loves her. T calls all his therapists "Jan." She brought over cool things for him to play with while he was in the hospital. The sand stuff was so deeply loved by everyone that I called to find out what it was. Kinetic sand. It is marvelous; get ya some. M pretty much gave an on-the-spot commercial as he sang its praises. Even AB loves getting her hands in it.

The hospital has a substantial stash of quilts that were used on his bed. It was a much cheerier way to guard the bottom sheet than the chux pads adults use. I realized after several days that I should have taken pictures of all the quilts that came our way. I was in an all-or-nothing mood, though, so I took no photos. Bright cotton, stitched together as a quilt, really does bring joy and comfort.

Food Train
When M's co-worker created our food train, I thought it was longer than we needed. During the re-admission, though, I was exceedingly grateful for the food that poured in. I figured we would be back on our feet in a week. Now, more than three weeks later I am just starting to get my first glimpses of "normal." I'm thankful, indeed, for the people that have brought meals.

I didn't spend much time with my sewing in hand. But those brief moments when T was asleep and I was awake were made more bearable with embroidery. Thank you Vicky Sue for encouraging me to start!

Autumn Came
I knew the weather was becoming cooler, so I started washing longer, warmer clothes for my family before we went back to the hospital. I didn't get entirely through the wardrobes, though. You'll likely see N sporting capri's and 3/4 sleeve shirts for another week, or so. I was sad that I wasn't the person to put everyone in pants for the first time of the season. I had no idea I liked doing it until I didn't get to.

I would be sunk without my friends. Turns out I have some who love my family almost as much as I do. Many of them checked in with me throughout this past month. Lots put on us on prayer lists. If I started listing them I would miss someone. I'm thankful for my friends.

Getting My Brain Back
I had an epiphany as I spoke with my sister on discharge day. Many moms look forward to the time when they get their bodies back. Loads anticipate the end of pregnancy, or the end of breastfeeding, or the end of the baby weight, or the end of being a human hankie. I don't really mind my body being made family property. Sorta. I would like to ditch the baby weight. But what I most want back is my brain. I want to be able to focus, to remember, to think about what I want to think about, to talk about what I want to talk about. Instead, I'm being pulled all over the place, I have a mere shadow of my former brilliance, I think about curricula and diagnoses and talk about a lot of cartoon characters. Though these little years are precious and I enjoy them immensely, I am really looking forward to getting my brain back.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Wednesday, September 17, 2014

Home again, Home again, Jiggety jig

Home! We came home yesterday. Last night I felt mild guilt that I didn't post an update, but it quickly passed as slumber overcame me. I was tired.

I got up and rolling at 0430. When T woke up yesterday morning I put him in clothes from home. I talked to M and told him to hustle. I don't know if it was a show of optimism or desperation, but I had all our bags packed long before we received our official discharge orders.

M, N & AB arrived a little bit before lunch time. Since we have such a long haul back home we decided to have a final meal at the hospital before we headed for home. Though there was a moment of heartbreak when Food Service called back to say there was no dirt cake, tragedy was averted by ordering cheesecake instead. We ate, we picked up heavy duty antibiotics, we walked through the cool parking garage, handed over our validated parking ticket and darted for the highway. (well, "dart" is a bit strong. M was driving.)

The drive home was filled with the sound of chatter and little voices bellowing along with a VeggieTales CD. We found home long before we pulled into our driveway.

When we did get to the house we unloaded the car then started tossing children towards their beds. Those beds looked pretty cozy, so I tossed myself towards my own. When I woke up I hopped on my bike and hauled N to the next town. He and I played at a park while we waited for M to pick us up. We came home, ate dinner, played, splashed children with water, soap and medicine, then went to bed. It was a good day.

Short of breathing, the most necessary things I did yesterday were take a nap and go for a bike ride. I was angry. At everyone about everything. I was ripping people apart in my mind all day. Fortunately, I kept my acid-laced tongue to myself, but the thoughts were still proving poison for my mind.

The nap gave my body rest. The bike ride gave me a place to pour out my emotional energy. Though some dude made a snarkarific comment about my biking pretty early into the ride. So I spent the first half of the trip ripping him apart in my mind. But the last half I enjoyed the wild flowers and the cool breeze and reminded myself to order a cushy bike seat.

The 30 minutes N and I spent playing while we waited for my man to pick us up were good for both of us. He has also been under tremendous stress as his mom and brother have spent two of the last three weeks in the hospital. We raced and slid and climbed and jumped.

I'm glad I'm still nursing AB. It gives her and I several opportunities through the day to be quiet and alone. I have also been holding her more than our usual. I am very happy to report that she is back to scrunching up her nose and smiling. She had quit doing that while we were gone.

T is good, a bouncing ray of sunshine. We're trying to limit the bouncing, but basking in the sunshine. We will see the neurosurgeon again next Thursday to stop the antibiotics and remove the second set of sutures. Until then, he's supposed to be mellow (riiiiiiight).

I have a list of other things I appreciated and observed while we were in the hospital this time, but this post is already long enough. I noticed on my blog stats that someone from Israel checked in. (Hi Mom!) Thank you to everyone for loving and supporting us through this time of hospitalizations.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Monday, September 15, 2014

Readmit Monday Night

We got happy news today: we get to go home tomorrow! Woo Hoo! I am so looking forward to having my whole family back together again.
T Man continues to charm everyone who comes to the room.
I miss M, N & AB.
We will go home on higher doses of antibiotics, then return in a week and a half to get the sutures removed.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Sunday, September 14, 2014

Readmit Sunday Night

Tonight I am writing from the comfort of my own home. Pretty much as soon as I push "publish" on this post, I am diving into my bed. Unfortunately, T-Man is not here with me. He is still in the hospital. M went to spend the night with him tonight. I was getting super cranky this afternoon. I realized I had not left the hospital floor since Thursday afternoon. 72 hours with no fresh air. Not good. I'm pretty sure keeping patients (and their families) in isolation for so long is unethical.

M's parents have come back to help again through this unexpected hospital stay.

We will have more answers tomorrow on the next steps toward health for T.

I have spent these few hours at home catching up on my administrative duties. (read: paying bills) I am going to throw some clean clothes in a bag, check the locks on the doors and get some shut-eye. We have to be up early so I can get to the hospital in time for M to head to work. The hour and a half commute is getting a bit brutal. It has given us lots of opportunities to sing, though.

No pictures tonight, as I am actually typing at my computer, rather than swyping at my phone. We haven't hauled the "real" camera to the hospital. We pack pretty light. Especially for this second stay. I didn't bring any of our own toys or movies. I am finding we're bringing more food, though. Turns out T-Man only likes hospital potatoes. Hash browns: yes. Baked potatoes: yes. Tater tots: yes. Any other food: no. Thankfully he's been stuffing himself with chicken nuggets and trail mix from home. Protein is hard to get in a kid that is allergic to so many foods.

I feel like there's more, but my brain's a bit foggy. A sure sign I should take it to my comfy, freshly made, turned down, chocolate-on-my-pillow bed. (My man rocks)

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Saturday, September 13, 2014

Readmit Saturday Night

T had a great day!
He played, he ate, he got into tons of mischief.
At this point, we're pretty much waiting for Monday. They're watching his incision closely and continuing antibiotics. He'll have more testing on Monday to evaluate the tissue deep in his body.
N had a fabulous soccer game today. He excitedly told me, "I got to be the goalie and nobody scored on me!"
AB has had tooth #5 come through, #6 is quick on its heels. She has perfected crawling & is getting really good at pulling up to stand & cruise.
All three kids are gorgeous. Much like their daddy.
Enjoy the dirt cake and cool home-made sand-stuff. We did!

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Readmit Saturday Morning

I think I will reduce the updates to daily ones. T slept thru the night. I have nothing else to report. Which is a good thing. Boring nights are a blessing.
When I asked if he was ready for sleep last night he jumped into my bed. Pretty cute.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Friday, September 12, 2014

Readmit Friday Night

The only thing worse than having a sick kid in the hospital is having a healthy one in the hospital.  The child (and his mother) go stir crazy.
But if we weren't here getting the medicine T needs then he really would be sick. Though home sounds lovely, having an ill child doesn't.
I've been campaigning hard to be allowed to take T to a play room. Since he came in with an open wound, though, no one is agreeing. I am met with kind, resolute "no"s every time I ask someone new.
Doctors who specialize in containing infections came by today. They're part of the team now, making sure T is on the best antibiotics. Different medicines kill different bugs.
Daddy, N & AB came by for dinner and playtime this evening.
I was very discouraged on Wednesday as I prepared for this admission. Since the nurse practitioner first shook her head yesterday afternoon, though, I have been at peace. It helps that things are going so well on the homefront. Many, many people have stepped up to help us out.  The other reason for my emotional health is prayer. Your multitude of prayers have been, and will continue to be, answered. Thank you!

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Readmit Friday morning

T slept great. Which is astounding considering someone came in every 2 hours. His dressing is dry. He's not eating well, but he's drinking plenty.
This post is short because parenting this little boy is a full contact sport today.
He just took a bite out of my cup. Gotta go!

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Thursday, September 11, 2014

Readmit Thursday Night

I'm posting a quick update before I rest my head on surprisingly comfortable plastic pillows.
The MRI showed typical angry tissue that happens post op, but nothing requiring more surgery. Woot woot!
While sedated for his MRI his neurosurgeon put sutures back in his incision. I'm not sure how many. I just know he used a plural to describe them. A dressing is currently covering the site.
Pretty much we're just going to hang out here in the hospital as we wait for the IV antibiotics to do their thing.
T might be grounded til he's 39 by the time we leave. He's playing with the scopes, he's throwing toys over the rails, he's chewing his IV tubing, he's drooling water & gargling his meds, he's shining scanners in his eyes, he's picking at the IV.
In short, he's acting like a healthy little boy. Which is actually awesome.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Cafeteria Food

I'm noshing on chocolate covered pretzels while T Man is in radiology. He'll be there an estimated 2 hours. He's having an MRI of his spine to make sure the leaking wound is superficial. A deep leak would require surgery. He is also going to have his incision site re-sutured. It may be one stitch or ten. They'll know better when they can poke at him. He'll be in the hospital at least through the weekend to get IV antibiotics. He fell asleep watching  VeggieTales. T is so much healthier this hospital stay. He's exploring all the things he didn't get into before. Fun times.
The patio where I'm eating boasts flowers, sunshine, a gentle breeze & sparrows fighting over pizza. I'm off to find a cozier spot to wait. I have my embroidery with me.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Wednesday, September 10, 2014

Making Jell-o

I'm making Jell-o again.

Because T is going to see the doctor again.

And they said to give him clear liquids for breakfast again.

We're praying he doesn't need surgery again.

But his incision site is oozing.

We're hoping for the best, but getting prepared for the worst.

Tonight I was sad as I laid AB down for the night. I love the feel of her in my arms. I wondered if I would get to hold her again tomorrow night. Will I be bending over her crib railing or my pump?

Last night I was happy that N and I had made up much of the schoolwork he missed in the last two weeks. Tonight I wonder if we'll face another academic setback. Will he still remember his even numbers, how many rules were in the Code of Hammurabi and the true definition of security?

M and I are talking, fighting to stay connected while we plow through a pile of to-do's. His nose is buried in his laptop. Mine is smelling Jell-o as the pouring powder lifts from the container to my nose.

Jello-o makes a weird sound when the boiling water hits the powdered chemicals. The sizzle is quiet, unlike IV pumps.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Tuesday, September 9, 2014

A New Strategy

I have fallen apart. I don't pray. I don't exercise. I don't read my Bible. I don't stop eating when I'm full. I waste time. I am impatient. I am selfish. I am uncaring. It has been a progressive deterioration.  I have tried, without success, to pinpoint when the destruction began. The starting point really doesn't matter, though. The point of change, does. 

The absolute point of change occurred on January 23, 2003. That's when I became a Christian. That was the day I sat crossed legged on my white eyelet comforter and sobbed out my acceptance of, and dependence on, the mercy of Jesus. In that moment I died to sin. The Bible tells me so. We should have had a funeral. 

Christ began revealing immediately that the old me had died. The next time I flipped someone off He gently showed me I didn't do that anymore. The music I used to groove to started bothering me, the lyrics washing over my brain like vinegar. I heard myself curse and cringed. A relationship I had severed caused an ache in my soul.

As the old habits exited, some new came in. I read my Bible and thrilled at the treasure within it. I prayed and actually communed with God. Not just words pointed at the ceiling, I talked to my Creator. I grew modest. I took counsel from those who oozed love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. 

In recent years I have slid, though. I have started acting like that girl who died eleven years ago.  How can a vibrant, eternal being act like a corpse? Perhaps I lapsed because it is easier to do behavior management than nurture a relationship. Staying with God, listening for His Voice, waiting, and depending take effort. Mere religion is easy. Wrestling with God requires energy.

I've known this for awhile, but didn't know how to fix it. I was paralyzed by feeling guilty for allowing my soul to grow so stagnant. 

My new strategy for living the reality of Philippians 2:12-13 is centered on music. To remind myself that it is God Who works in me, I sing and hum a hymn throughout my days. My favorite verse of Come Thou Fount says: 

O to grace how great a debtor
Daily I’m constrained to be!
Let Thy goodness, like a fetter,
Bind my wandering heart to Thee.
Prone to wander, Lord, I feel it,
Prone to leave the God I love;
Here’s my heart, O take and seal it,
Seal it for Thy courts above.

To spur myself to wake up, fight on, and work out I am setting a new ringer on my alarm. (I hope my roommate doesn't mind) The video is below. The lyrics are posted below it. 

I will let you know if this new musical strategy has positive results, or not.

[Intro:] ~John Piper~
I hear so many Christians, murmuring about their imperfections, and their failures, and their addictions, and their shortcomings. And I see so little war! Murmur, murmur, murmur. Why am I this way? Make War!

[Verse 1:] ~Tedashii~
Bang with me/ba-bang bang, ba-bang with me
No more playing games mane/cause this thang can get risky
So man if you in Christ/TAKE UP!!/your cross quickly
Stand fearless on the frontline/time to come with it
Do the right thing/WAKE UP!!/and lets get it
I ain't even in the ring/they throwing blows like Riddick
Persistently attacking me/they're even in the back of me
It's either fight or lose my life and I can't take this passively
So what you think I'm bout to do/I'm bout to do what I can do
Trust the ONE who got me through/and fight like it was after school
Never giving up/steady, standing on the battle field
Feet firm to the ground like I stepped on Chapel Hill
Flesh feeling frisky, sin persuades and tempts me/
Satan cheers me on/guilt followed by conviction
It's the same ol' trap/and we fall like we defenseless/
Work your senses/grow in wisdom/stand firm and be relentless/

I MAKE WAR!/Cause sin never sleeps/
It's got me in a trance/you can see it in my dreams/
I MAKE WAR!/Man I beat my flesh/
To the death/every breath/like I beat my chest/
I MAKE WAR/sun up/
I MAKE WAR/sun down/
I MAKE WAR/time in/
I MAKE WAR/time out/
I MAKE WAR/against lust/
Against pride/against me/until I die/

[Verse 3:] ~Tedashii~
I'm a Christ representer, fit to stand and deliver/
Cause a lot of my believers struggle with their agenda/
So I dropped this on an ADAT/just so you could come play back/
A hit to be encouraged that rocks you with truth from, way back/
So listen up to it ASAP/like you do a Lecrae track/
I'm spittin' written visions to put on heads like a wave cap/
Sinning, naw we don't play that/cause that's the way that a slave acts/
I'm filled with the Spirit so tell them dawg this is pay back/
As you begin to copy the carbon copies of Christ/
And conform to His written image you should be shinning a light/
If you not, why is that?/
Is it fear that's been grippin' you/cause you scared they'll be dissin' you/
Flipping birds while that spit at you/
If you not, why is that?/
it don't matter so bump it/perfect love cast out fear and He ain't save us for nothing/
his is a privilege (privilege)/your life to give to Him (give to Him)/
so stand firm for Him dawg and lets get it in


copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Monday, September 8, 2014


T Man is finally on a forward moving path!
He is eating. He is sleeping. He is drinking. He is silly. He is sassy. He is fever free. He is on antibiotics. He is on probiotics. He is on his feet.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Thursday, September 4, 2014

Post Op Pains

T is still struggling with pain. We are hard pressed to get him to walk. He prefers crawling. Or better yet, being carried. His back is noticeably swollen. I wouldn't want to sashay about the place either, if my back looked like his. We are going to see someone from the neurosurgery team tomorrow to see if he is ready to have his sutures out. I will also mention him still needing the big-time pain meds to control his discomfort. In the meantime, we certainly appreciate any and all prayers for T's continued healing.

In happy news, T has been sleeping through the night.

Both AB and N have teeth on the move. So we're flinging pain medication around here like it's champagne in the winner's circle at Indy.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Tuesday, September 2, 2014

Top Five

In an effort to wean us all from my recent heavy blogging habits I am posting an update today. Who knows what the future holds? Maybe all this blogging will spur me back into action. I might even return to weekly writings. 

Home is a beautiful thing. I slept in my own bed. T Man slept in his own bed. He slept through the night for the first time in a very long time. I did not. AB is taking full advantage of having her mommy back, so she was up last night. 

I did sleep in this morning. Rather than being awakened by a nurse coming in to give medicines or check vitals or do an assessment, or a physician coming in to poke and prod, I was stirred to consciousness by my man telling me T had eaten like a beast. (cue happy feet) 

Now being home for a bit more than twelve hours, I have compiled by Top Five List. These are the things I most appreciated while we were in the hospital.

Parent Sleeping Accommodations
Though the dreaded bed-chair wasn't particularly comfortable, it is much better than sleeping in my car or a plain ol' chair. The hospital fully expected me to stay with my child. And they provided a way for me to do it. Even in the ICU. They also cheerfully provided me with linens and pillows. The bed below is the one in his non-unit room. It was the biggest one by far. And M never joined me. 

Guest Trays
The hospital has meal cards available for guests to purchase. Six dollars buys you one entree, two sides, a drink and a dessert. This is a picture of the last half of some dirt cake. It was yummy. And yes, I did eat the gummy worms. I'm neither too old nor too dignified to tap into my inner eight year old. The guest trays are really nice because they are delivered to the patient's room. I didn't waste any time away from my boy by going to the cafeteria to eat. 

The Child Life Specialists
These people are awesome. They have masters degrees and are really good at helping ease children and their siblings through the medical process. But mainly, they get paid to bring cool toys to the kids. They came by every day to see what T wanted to play with. If I thought of something after they had come through, the nurses paged them. They delivered movies, cars, books, trucks, squeezy balls, a floor mat, bubbles, pinwheels and this awesome thing. It's a mobile sensory unit. It's the reason why T finally got to his feet. It plays music and it boasts a ceiling projector in addition to the bubbles and lights you see. 
The staff
Pretty much everyone was great with T. (and me) There were only a handful of people that I felt weren't listening to me. Everyone else seriously weighed my opinion. I was invited to join them on rounds each morning. They played with T. They were patient and kind. Jillian was our nurse all weekend and the one who got to wave good bye to us yesterday. Vanessa only took care of T yesterday, but she was so good to him. When she was in the room it felt like we were her only concern. She oozed cheerfulness

A happy, healthy, whole boy
Getting to walk back out of the hospital with this guy in our arms is worth it all. Here he is helping the docs with their final assessment before we left. 

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Monday, September 1, 2014

On Our Way Home!

Yay! Our last hospital selfie

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

A Turn Around!

T ate!

And drank!
And stood!
And took a step!
Turns out he needed his brother and sister and a tower of sensory input. (see pictures below)
He stole AB's cracker. He drank after he watched N have some juice. And he wanted a better view of the mobile sensory unit, so he stood up to get it.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Monday Morning

Today I am refreshed of soul. (envision me doing an awesome happy dance here) That would be because God is strong, not because I am.
The steadfast love of the LORD never ceases;
his mercies never come to an end; they are new every morning; 
great is your faithfulness.
Lamentations 3:22-23
Interesting that those beloved verses are found in Lamentations.
T had a very restless, fretful night.
I'm glad they have coffee here.
BUT...He did eat a few non-banana bites of food last night. Woot woot!
T was part of a feeding group all summer to address his sucking, rather than chewing foods. Last night I used a lot of their techniques to get him to eat. pretty much I let him play with his favorite foods. Every once in awhile a bite would slip in. He also shoved a lot of cold tater tots in my mouth. Blech. Only a mother's love.
We're doing the play-with-your-food routine again this morning. I'm typing in between bites. I've already asked M to bring me clean pjs.
My outlook is good. My view is great.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.