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.
Quilts
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.
Embroidery
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.
Melody
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.
Saturday, September 20, 2014
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.
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.
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.
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!
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.
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!
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.
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