Sunday, August 31, 2014

Sunday Evening

Tonight I am soul-weary. My body is  also remarkably tired. Though being worn out  doesn't help matters, this is a distinct problem.
This exhaustion is caused by frustration, hopelessness & worry.
T still won't eat.
Or drink.
He doesn't want to move.
He doesn't seem to be in pain, but he just wants to lie on his back. That is alarming for any 2 year old, but especially for my go-getter.
Everyone agrees that he needs physical therapy (PT) and occupational therapy (OT) to evaluate him. The docs ordered it. But it's Sunday. Tomorrow is a holiday. Therapists don't work weekends or holidays. (remind me to look into becoming a therapist when I have an empty nest)
It's not all doom and gloom here, though. T does still like to dance.
I read some Charles Spurgeon earlier that seemed to be meant for me. I am not suffering as many others are, but today is hard. Here are some lines:
Happy storm that wrecks a man on such a rock as this! O blessed hurricane that drives the soul to God and God alone! Oh, tempest-tossed believer, it is a happy trouble that drives thee to thy Father! Now is the time for feats of faith and valiant exploits. Be strong and very courageous, and the Lord thy God shall certainly, as surely as he built the heavens and the earth, glorify himself in thy weakness, and magnify his might in the midst of thy distress. The grandeur of the arch of heaven would be spoiled if the sky were supported by a single visible column, and your faith would lose its glory if it rested on anything discernible by the carnal eye. May the Holy Spirit give you to rest in Jesus this closing day of the month.
I am definitely weak. My prayers have become simple: God, show us what is going on. Thank you for this boy.

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

Sunday Midday

Bummer report this afternoon. T is not going home today. We have been able to coax bananas & bologna into him, but no fluids. So the IV went back on a little while ago.
What may turn out to be good news is he has thrush. Hopefully he'll feel like drinking when that clears up. He has already had his first dose of medicine for it.
In happy news, Daddy came today with N & AB.  He also had YehYeh & GninGnin in tow. T hadn't seen his sister since Tuesday. It was sweet to hear him yell her name when he saw her. He actually asked to get out of bed so he could play with his sibs on the floor. We felt almost normal for five minutes. Well, "normal" might be a mischaracterization. Normal for us.
I'm thankful for the peeps at church & M's work who are bringing food. The meals started rolling in last night. It's a relief to know my family won't be eating restaurant food the whole time I'm gone. The cooking part of my job is covered.
I cringe to think what the house will look like when I return. So far no one has signed up for maid duty. Imagine that.
T just fell asleep for a needed nap. I believe I will try to do the same.

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

Sunday Morning

T slept well last night. He still isn't eating or drinking much. He is definitely more chipper than he was last night, though. When the day nurse comes in we'll talk about the next steps. I'm not sure if they will do more anti nausea medicine or wait to see if he eats more on his own.
I can tell I've been here too long. I'm tired of dealing with health care providers. I feel angry and defensive. Please pray I don't destroy my witness by choking a nurse with his/her stethoscope.
Right now we're chilling in the rocker, watching a show.

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

Saturday, August 30, 2014

Saturday Evening Report

Today I feel like a teenager again. And not just cuz I've, like, not slept.
I have been on such an emotional roller coaster today.
Our morning started at 0400. Not fun. T was cranky, I was cranky. But then we ate breakfast and the world seemed a brighter place to be. Though, in hind sight, that may have just been the sunrise.
The doctors came by and said to get rid of sedation, catheter & bed rest. Woo hoo! But then he got restless and shaky as the meds came off. Sad.
We got a visit from Daddy, N & AB. It was nice to see those beloved faces, but a bummer we couldn't all be together. AB is too young to go to the unit. so M & I tag teamed getting cuddles with T.
T got to transfer to a neuro floor. Yay! Now we can stay in his room to eat, AB can join us & N isn't limited to 15 minutes per day. Also, as we were transferring, Miss Bethany & "Dr" Josh came to visit. They brought him his own guitar; just like his favorite toy at their house.
The surgeon came by and said T looks so good that he can go home tomorrow. Hip hip hooray!
T refused to eat lunch. T refused to eat dinner. He wouldn't drink a drop. The hope of going home seemed to be crushed.
But his night nurse gave him medicine to settle his tummy. He just asked for a few bites of banana. Home gleams in the distance again, beckoning us to return.
T is watching a show while I wrestle with swype to get this post together. I'm about to help him fall asleep by
modeling how to do it.
My sister got home safely. M's parents got here safely.
Everyone tells me how cute T is. I'm rather inclined to agree.

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

Sitting up!

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

A Powerful Combination

Prayer + Breakfast =  no more crankies!
Neither one of us has thrown a toy in the last 3 hours.
Thank you
Praise God from Whom all blessings flow!
Watching TV, waiting for docs to round so we can start the process of sitting up.

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

Day Four Embroidery

No hay nada.
I didn't even touch my project yesterday. I'm guessing that's going to be my story for awhile. Should I pick up the embroidery again I'll post another update.

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

Saturday Morning

We've been hit with a crankies outbreak. It's hard to know who got it first, but it is contagious. Mother and son keep passing it back and forth. In an effort to stop the spread I have excused myself to the lactation room to pump. Maybe ten minutes apart will be enough to halt the vicious cycle. T is watching one of his favorite shows. The whishing hum of my pump is a nice change in sound input for me. I know this is an awkward place to stop, but I can't think of a clever ending.

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

Friday, August 29, 2014

Friday Evening Update

We had a busy day today. Though, alas, it did not include sitting up. T is on a crazy high dose of sedation. And he was wide awake all day long. He didn't even take his usual afternoon nap. Though he is obviously tolerating the maxed out meds well, they want to wean them slowly. Friday night is not the best time for that. Also, the extra day of rest will only serve to help Mr Wiggle Pants' body to heal. So now the plan is to start sitting up tomorrow about mid-day.
We transferred to a different unit today. He is still in ICU, but one with a different specialty. The one he was in before was busting at the seams. Speaking of his previous unit, there's nothing like hanging out in a children's hospital to make you thankful for the child you have.
T continued to eat well today.
I covered the call light with a blanket since T kept pushing the button. He redirected his energy to the light controls on his bed. His room looked like a disco many times as the lights strobed off and on.
I left the hospital for a few hours this evening. M stayed with T while I ran home. It was nice to sit at my own table with my other babies, sister & niece. The niceness was amplified by eating a warm, home made dinner (that I didn't prepare)
AB ate really well. That was a comfort to both of us. I got to fuss over N's heat rash a bit and give him some focused attention. We finished out the night with a rousing game of Sorry.
I'm posting pictures of the pull out chair that M & I shared, as well as one of T earlier today. You'll see from the supplies on the chair that it is a bit narrow. Fortunately M is as wide as a phone, so that gave me the space of paper. :-)
We are holding up better than we should be. Thank you for praying. God is kind.

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

Friday morning

Almost there! T will be able to start sitting up this evening. He had one rough patch last night.  Once he got medicine, though, he had a peaceful night.
He just finished breakfast and is trying to doze back off. He is squishing my hand onto his face. Unfortunately it's too dark for me to get a picture of it.
The surgery team just came by. His incision still looks good. He's moving his legs well. He will stay in the PICU overnight, unless there is a bed crunch and they need his room for a truly sick kid.
My sister, the rock star, is still taking really good care of everything at home. But my other babies need me, too. I'll go home for a few hours this afternoon & see if I can coax AB into eating more.
Here is a picture from earlier this morning:

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

Day Three Embroidery

I finished the block yesterday. Woo Hoo! I likely won't get a new one started today, as I will be going home this afternoon for a few hours. I'm including a picture of the quilt that the blocks will go into. Mine is going to be pink & brown, though.

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

Thursday, August 28, 2014

Thursday Evening Update

Iv fluids: came off today because T is eating and drinking so well.
Bath: T got a bed bath today. He seemed more comfortable in fresh linens and shiny clean skin. The old nurse in me dies hard. It weirded me out to bathe him without gloves on at the beginning.
Squeezy balls: are the only reason he still has all his tubes and lines attached. The orange one has been a constant companion.
Movies: we've watched tons. I have no idea how people did this before technology.
Dressing: is off. His incision looks good. It's about 4-6 inches long, by my eyeballing estimate
Bologna: T tried it for the first time today. The verdict - he loves it! I think I have something to add to my grocery list now.
Daddy: is here! He'll be staying the night. I'm going to try to convince M he should sleep with T. To strengthen their relationship. Not because I want the pseudo-bed to myself

Flashlight: T had a rough time this morning. Morphine and a roaring flashlight got him through. And answered prayers. I don't know what kind of brain thinks up a flashlight that roars when you squeeze its tail. But I'm glad the thing exists.
Call light - T found the buttons on his bed today. Mr Fidgety Fingers proved the secretary to be patient.

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

Thursday morning

T had another great night. Woo Hoo! I did sleep with him for a few hours. Fortunately that's all it took for him to settle down. My back was actually happy when I moved to the bed-thingy.
This day looks like it will be filled with more resting. We are pretty much just waiting for the planet to twirl around a few more times while T's body heals.
Thank you for your care and prayers!
Almost everyone who walks in this room chuckles when they see T Man. He looks very chill in his bed.

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

Day Two Embroidery

Progress! I *might* have this block done by the time we leave PICU. But once my little go-getter is awake I won't embroider again for awhile. I'm thinking I might have time to sit and get the other eleven blocks done in time for AB to put the quilt on her dorm bed.

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

Wednesday, August 27, 2014

Wednesday evening

T had a great day! He ate a good lunch. He's been drinking so well that they were able to reduce his IV fluids.

He has movies, squishy balls and a star ceiling projector to help ease the boredom that accompanies lying flat on your back for 72 hours.

The nurses have been very responsive to his pain and given him medicine at the first sign of discomfort.

N got to visit for a few minutes today. AB is too young to visit in PICU.

T seems to be missing cuddles. So we' re going to try having me crawl into bed with him soon.

The surgeon visited this evening and said everything still looks good.

Dietary has been vigilant with guarding him from food allergens.

We're good!

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

The pictures you've been hoping for

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

Day One Embroidery

For those wanting a light hearted diversion, I'll share my embroidery progress. Here is where I'm starting from today.

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

Morning Update

T did great last night! Everyone is pleasantly surprised that he got through with {relatively} little medication. We just gave him his first sips of water.

Because surgery went so late last night, we will probably move to a regular floor on Saturday morning. The earliest we will head home is Sunday evening.

M & I shared a chair that pulls out into a bed-ish. We are still talking to each other despite no caffeine consumption yet today.  So we must have had enough sleep. Or supernatural power from God Himself to keep us together. Probably both.

Keep praying for my sister as she holds down the home front.

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

Tuesday, August 26, 2014

In the PICU

T is resting quietly after a very long day. We joined him in his room at 2045.

The surgery before his took longer than expected, so he didn't go back to the OR until 1535.  They put in a PICC line and placed special monitors all over his body to keep track of his nerve function throughout the surgery.

His actual surgery began at 1700. The surgery was successful with no indications of any damage done to any nerves. The surgery was much longer than expected because he struggled with anesthesia. It took a lot of medication to keep him under. Adult doses. For our two year old. I hope he never requires anesthesia as an adult.

He is sleeping peacefully. He looks taller.

We are in very good hands.

Thank you for all your love and prayers.

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

shameless shoutout

T hasn't eaten  solid food since dinner last night. And he's happy! My deep gratitude goes out to Jello, Toys R Us, VeggieTales and the people who make the sparkling, shaking, noisy wand of wonder.

Delays have set us back quite a bit. He won't be out of surgery until close to 2000 tonight.

*I've tried a few times to post pictures, but technology is not cooperaying. The main thing is T is still stinkin' cute*

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

The Road to Knowledge

For those who don't know the path we have traveled with T the past year, I'm posting a summary. I haven't kept you out of the loop because I don't care. Mainly, I didn't know how to start. Despite copious reading about disability, I haven't found a guidebook on "How to tell people your kid is delayed." Now that he is having a pretty big surgery tomorrow, the door to that conversation is open. 

The last ten months have been a bit intense. We knew T had food allergies and eczema. Once we figured out how to manage those, though, we thought we were prepared to conquer the world. He crawled late, but he crawled. He got his first words on time. He walked late, but when he walked he ran. He didn't talk as much as his older brother, but we were content to let them be different from one another. 

At his two year well-child appointment last October our new pediatrician asked me if I had any concerns about his speech, I said "no." Because I didn't. He was talking, he was adding words. She knocked the wind out of me when she told me T had a speech delay.

In November he had a hearing test, which he passed with flying colors. He also had a developmental assessment from the state's early intervention service, which he bombed. Watching him fail repeated tests was heartbreaking.

In December, on my due date, he had his first services with an Early Intervention Specialist and Speech Therapist.

In January he added Occupational Therapy (OT) and Physical Therapy (PT) to his schedule.

In February I realized his delays weren't going away. Not only was the veil lifted from my eyes so I could see him more accurately, but the gaps between him and his peers were widening. I spoke with his pediatrician and she ordered additional speech therapy (ST). 

I spent most of March doing research, trying to diagnose T myself before his 2.5 year appointment in the beginning of April. I felt like he had a genetic disorder. My man felt like he had suffered a brain injury.

In April the pediatrician agreed we could/should pursue a diagnosis to explain all the delays. She referred us to a geneticist and a developmental pediatrician.

In May the developmental pediatrician gave us a diagnosis of Hyperkinesis Syndrome with Developmental Delays (sorta the new ADHD). She ordered blood work to appease me and an MRI of the brain to appease M. The blood work showed a deletion on chromosome 8. The MRI of the brain showed an old stroke. She referred us to neurology. And added even more PT and OT than what he had been receiving.

In June we saw the geneticist and the neurologist. His official diagnosis is Unbalanced 4p 8p translocation. It is so rare it only has a description, not a name. The neurologist was puzzled at the type of stroke T had experienced sometime in the past. (He's guessing in utero) So neurology sent us to hem/onc & cardiology to rule out thromboembolic causes of his stroke. He also ordered an MRI of his spine. 

In July we saw Hem/Onc and Cardiology. Hem/Onc found a rare mutation that is poorly understood. They don't think it is clinically significant, though. Cardiology noted two abnormalities. Neither are clinically significant at this time, though we are going to monitor him. The MRI of his spine showed the lipoma causing a tethered spinal cord. So then we went to neurosurgery. 

Though his long list of diagnoses is overwhelming, he is not. T is awesome. He is continuing to add skills and words to his abilities every day. He is incredibly affectionate and kind and super silly. He has achieved the perfect level of mischievousness - makes life fun without being rebellious. He is a great friend to his brother. He pelts his sister with kisses every day. He does not give his heart to just anyone, but those he loves, he loves with abandon. He keeps a pleasant, joyful attitude despite often feeling miserable physically. And he's gorgeous, too!

This time last year we had no idea that T had such a significant disability. I guess that goes to show how great he is. His personal sunshine blinded us to his delays.

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