1. This Blog is called No Sugar because I tend to "shoot from the hip," as it were. A friend helped me name it. Unfortunately the web address has to be hold-the-sugar because some weirdo already has a blog at "nosugarblogspot" so there you go.
2. If you are not on facebook and want to get an email as soon as I post something new here, scroll down on this page and to the right you will see a white box where you can enter your email. You will have to enter a "funny word" to verify you're not a spammer and then you will get a confirmation email you will have to click on ... and that's it.
3. At the beginning of the year I took out my "Book of Useless Information" and entered all the fun ones. They are scheduled to post once a week; I'm not scouring the net for weird facts while at the hospital (sorry, Emily, my secret's out).
---------------------UPDATE---------------------------
Well it was supposed to be another full week of therapy. Ian is getting stronger on that front and despite his incredible weight-loss program (down 50 lbs, last count), his color is good, his limbs get stronger, his ability to communicate is good.
However last night one big cough and subsequent suction dislocated his trach. We don't know yet to what extent; he still breathes just fine, but I don't think much is coming from the trach but instead from the ... well, gaping flesh hole underneath it, in his neck. Sorry - it's gruesome. So all that to say, we are now waiting for them to tell us when they will take him into surgery, check everything out, reinsert if necessary, possibly address the "wound" by stitches? or something.
Sorry I can't give any more info- we don't have it. But other than probably being annoyed he can't go for more strolls down the hall today, Ian is doing fine. He did share with me yesterday that he's worried about the future... we didn't go into detail there but I would imagine it runs along the lines of, "what will I be able to do, not do, will I go back to work or sit at home and sulk, what will that look like, etc." So your prayers for his neck and head are very much appreciated.
Also, I want to point out that his current condition has NOTHING TO DO WITH BRIAN FIFE OR ANY OF HIS AFFILIATES. lol.
Monday, March 28, 2011
Saturday, March 26, 2011
Friday, March 25, 2011
March 25 2011
I can't believe it's been a week of rehab already. Today was a big day; trach downsized again, feeding tube installed into stomach instead of nose (woohoo!) and a fabulous accommodating haircut via our neighbor, Karen. Awesome. (I am NOT attempting a shave with that trach in place!)
I hung the cards, we've got balloons. Visiting is limited because of his busy schedule, but I'm sure tangible forms of encouragement are/will be appreciated. He's got at least another full week here, probably more.
Prayers:
Ian -swallowing. that would be nice. did you try that exercise yesterday? difficult, eh?
overall strength: breathing and swallowing and speaking go hand-in-hand with overall strength and muscle use. Incredible how the body sustains its parts via other parts.
Peace and fortitude.
Rachel - self-care. Starting to experience physical symptoms of prolonged stress. Need physical and mental rest. Alertness for the drives back and forth, safety. Wisdom for when to ask questions, when to sit back and listen.
Kiddos - what to say here? protection, comfort, assurance that God has His hand on Daddy and we can be confident in His plan.
Today was hard work; same drill with all the therapies. In speech she asked him to name as many words that start with "M" as he could in a minute. His words included "mitochondria" and "myriad." Of course they did. No cognitive difficulties here.
In just a day his balance has improved. He's far from walking on his own, but he finds his "center" more readily. That right foot will NOT cooperate so it takes quite a bit of effort to flop its size 13 self where it needs to be. But he is determined and pushed himself quite a bit today.
Tomorrow: rinse, repeat. Sunday he gets a sabbath! and Monday back at it again.
They are focused on getting his trach out. I have mixed feelings about that, but I suppose since he does have a strong cough, he'll be able to get rid of the crud still in his throat. (true love is suctioning cupfuls of snot out of your husband's neck-hole while chewing a mouthful of trailmix.) Anyway, so ... swallowing is still a high priority, for all of us. Today he coughed a bunch up into his mouth (and made a TERRIBLE face), which means he's pushing that hard, which is great. So I'm encouraged and I hope he is, too.
Many thanks to everyone who has called, emailed, txtd, posted, mailed, cooked, kid-wrangled, etc for us.
I can't believe we're approaching week 4 and I've hardly had to concern myself with the "home front" at all. Blessed!I hung the cards, we've got balloons. Visiting is limited because of his busy schedule, but I'm sure tangible forms of encouragement are/will be appreciated. He's got at least another full week here, probably more.
Prayers:
Ian -swallowing. that would be nice. did you try that exercise yesterday? difficult, eh?
overall strength: breathing and swallowing and speaking go hand-in-hand with overall strength and muscle use. Incredible how the body sustains its parts via other parts.
Peace and fortitude.
Rachel - self-care. Starting to experience physical symptoms of prolonged stress. Need physical and mental rest. Alertness for the drives back and forth, safety. Wisdom for when to ask questions, when to sit back and listen.
Kiddos - what to say here? protection, comfort, assurance that God has His hand on Daddy and we can be confident in His plan.
Thursday, March 24, 2011
No Pictures: No Need. Thankful Thursday
I always meant to start that here at No Sugar; Thankful Thursday to piggyback Foto Friday. It just never got off the ground (perfectionist tendencies!). But here's a start: I am thankful that ...
1. Ian has had 3 days of forward progress at therapy.
2. the staff is friendly and knowledgeable and no-nonsense.
3. the little victories, like keeping the drool in the mouth, using the facilities, making talking-like sounds, winking at me and giving the nurse the "sarcastic eyebrow".
I know I haven't posted much since my crabby post about the first night at rehab. This post will be random and not comprehensive, but it's 1045 and I need sleep.
Ian is seen by 4 therapists each day, some more than once: Physical Therapy, Occupational Therapy, Speech Therapy and ... something else. (I told you this wouldn't be brilliant writing.) They start around 9 am and work the snot outta the boy; he gets a short break between sessions and then it's back at it. By 5 pm he finishes up and has at least once slept from 5pm till 9am; he's THAT tired.
Everything they do is geared toward "life on the outside" and strengthening. It's hard to tell which is neuro and which is plain atrophy from lying in bed for 2 weeks, but in any case, he makes progress every day. Thing One has him squeezing giant clothespins and doing 2-lb curls. Thing Two has him walking down the hallway, trying to find his mid-point balance. Thing Three helps with the trach and talking attachment and swallowing attempts and speaking attempts and breathing. Thing Four is terribly important as well; I just can't remember who that is :)
Tomorrow at 2 he will be having a feeding tube installed into his side. He is THRILLED (no sarcasm) about this. Finally, that blasted thing out of his nose.
He's learning how to walk. He's learning how to talk and swallow and make his limbs obey. (Give this a shot, would you? Swallow without closing your lips. Yeah. That's what he's been doing (or not doing) for a few weeks. Today, he swallowed an ice-chip's worth of water. *HAPPY DANCE*.
1. Ian has had 3 days of forward progress at therapy.
2. the staff is friendly and knowledgeable and no-nonsense.
3. the little victories, like keeping the drool in the mouth, using the facilities, making talking-like sounds, winking at me and giving the nurse the "sarcastic eyebrow".
I know I haven't posted much since my crabby post about the first night at rehab. This post will be random and not comprehensive, but it's 1045 and I need sleep.
Ian is seen by 4 therapists each day, some more than once: Physical Therapy, Occupational Therapy, Speech Therapy and ... something else. (I told you this wouldn't be brilliant writing.) They start around 9 am and work the snot outta the boy; he gets a short break between sessions and then it's back at it. By 5 pm he finishes up and has at least once slept from 5pm till 9am; he's THAT tired.
Everything they do is geared toward "life on the outside" and strengthening. It's hard to tell which is neuro and which is plain atrophy from lying in bed for 2 weeks, but in any case, he makes progress every day. Thing One has him squeezing giant clothespins and doing 2-lb curls. Thing Two has him walking down the hallway, trying to find his mid-point balance. Thing Three helps with the trach and talking attachment and swallowing attempts and speaking attempts and breathing. Thing Four is terribly important as well; I just can't remember who that is :)
Tomorrow at 2 he will be having a feeding tube installed into his side. He is THRILLED (no sarcasm) about this. Finally, that blasted thing out of his nose.
He's learning how to walk. He's learning how to talk and swallow and make his limbs obey. (Give this a shot, would you? Swallow without closing your lips. Yeah. That's what he's been doing (or not doing) for a few weeks. Today, he swallowed an ice-chip's worth of water. *HAPPY DANCE*.
Tuesday, March 22, 2011
Monday, March 21, 2011
Tired of Tired (with tired on top)
So, some things about me:
1. I'm an introvert. If you're unfamiliar with the term, here you go:
Basically, an introvert is a person who is energized by being alone and whose energy is drained by being around other people. Introverts are more concerned with the inner world of the mind. They enjoy thinking, exploring their thoughts and feelings. They often avoid social situations because being around people drains their energy. This is true even if they have good social skills. After being with people for any length of time, such as at a party, they need time alone to "recharge."
2. I crave quiet, order and routine.
3. I have physiological issues with anxiety.
4. I prefer not to drive farther than 30 minutes away from home (see #3)
5. I am fiercely independent and have only recently learned not to recoil from asking for help.
I have spent the past two weeks in more close contact and conversation with friends, family and strangers than I ever have in my LIFE. I have ruled the waiting room with an iron fist. I have learned how to navigate the doctors, nurses, cafeteria, elevators and parking garage. I have driven an hour each way on my OWN.
Every day is different. I'm so tired I can barely keep the plans straight. Nurses have shifts (and rightly so), doctors go on vacation, patients transfer hospitals. My kids, who are completely loved and cared for by some AMAZING folks in town, have yet to have a "normal" evening in over 2 weeks.
So. no conclusion. Just rambling. This sucks, and I can't even complain to my best friend about it all.
-----------------------------------------------------------------------
Oh, but wait! You want to hear about IAN!
He spent some quality time in this chair three days in a row: (it wore him out something fierce)
Because he was able to ditch the ventilator, he was cleared to head to rehab ... which meant a trek to a different hospital. This is a GOOD thing. A positive, proactive step. Not without frustrations (don't these places communicate? why does the nurse think the reason he takes seizure meds is that he just had brain surgery? The two are not related, and I had a heck of a time explaining to her ESL self that no, in fact, the brain surgery he JUST had did NOT produce seizures ...). Why, when they came in and hung him from the luggage-scale apparatus were they off by 10 kg? (uh, I do NOT outweigh my husband ... not even while carrying an extra person-unit during my ninth month). Why did it take the respiratory nurse 20 trips in and out of the room to get all the tools she needed for a pretty standard procedure? Why did it take so long to find an oxygen hookup for a patient arriving with a trach and O2 needs? Why is the nurse looking at the computer details and the scribbling them onto a half-sheet of paper with no lines? Gah!!!
The room is nice. The view is nice. The helipad is right out the window. Technically there's a window seat (although it doubles as the air conditioner). I may even be able to find the place again. I reserve judgement about the staff until I see some competency.
I'm not discouraged, I'm exhausted. Maybe gloomy and melancholy, at least in the moment. I'd ask for help in cheering up, but I have no idea what to suggest!
Ian could use the encouragement; I will be hanging up his cards this week; now would be the time for the gag gifts to come back, I think. Also, he's supposed to bring in regular clothing ... I was thinking some funny tshirts might cheer him, if you feel so inclined (inoffensive, please?) Nica guys - do you have your shirts made for this year?
Other than that ... it's only Monday of a very long week. I do my best to update daily but it doesn't always happen, so assume no news is good news and I'll catch everyone up when I can.
*A special, giant thanks to the Hagen and DeJeu families for their selfless giving this evening. I'm running out of phrases to express utter gratitude.*
1. I'm an introvert. If you're unfamiliar with the term, here you go:
Basically, an introvert is a person who is energized by being alone and whose energy is drained by being around other people. Introverts are more concerned with the inner world of the mind. They enjoy thinking, exploring their thoughts and feelings. They often avoid social situations because being around people drains their energy. This is true even if they have good social skills. After being with people for any length of time, such as at a party, they need time alone to "recharge."
2. I crave quiet, order and routine.
3. I have physiological issues with anxiety.
4. I prefer not to drive farther than 30 minutes away from home (see #3)
5. I am fiercely independent and have only recently learned not to recoil from asking for help.
I have spent the past two weeks in more close contact and conversation with friends, family and strangers than I ever have in my LIFE. I have ruled the waiting room with an iron fist. I have learned how to navigate the doctors, nurses, cafeteria, elevators and parking garage. I have driven an hour each way on my OWN.
Every day is different. I'm so tired I can barely keep the plans straight. Nurses have shifts (and rightly so), doctors go on vacation, patients transfer hospitals. My kids, who are completely loved and cared for by some AMAZING folks in town, have yet to have a "normal" evening in over 2 weeks.
So. no conclusion. Just rambling. This sucks, and I can't even complain to my best friend about it all.
-----------------------------------------------------------------------
Oh, but wait! You want to hear about IAN!
He spent some quality time in this chair three days in a row: (it wore him out something fierce)
Because he was able to ditch the ventilator, he was cleared to head to rehab ... which meant a trek to a different hospital. This is a GOOD thing. A positive, proactive step. Not without frustrations (don't these places communicate? why does the nurse think the reason he takes seizure meds is that he just had brain surgery? The two are not related, and I had a heck of a time explaining to her ESL self that no, in fact, the brain surgery he JUST had did NOT produce seizures ...). Why, when they came in and hung him from the luggage-scale apparatus were they off by 10 kg? (uh, I do NOT outweigh my husband ... not even while carrying an extra person-unit during my ninth month). Why did it take the respiratory nurse 20 trips in and out of the room to get all the tools she needed for a pretty standard procedure? Why did it take so long to find an oxygen hookup for a patient arriving with a trach and O2 needs? Why is the nurse looking at the computer details and the scribbling them onto a half-sheet of paper with no lines? Gah!!!
The room is nice. The view is nice. The helipad is right out the window. Technically there's a window seat (although it doubles as the air conditioner). I may even be able to find the place again. I reserve judgement about the staff until I see some competency.
I'm not discouraged, I'm exhausted. Maybe gloomy and melancholy, at least in the moment. I'd ask for help in cheering up, but I have no idea what to suggest!
Ian could use the encouragement; I will be hanging up his cards this week; now would be the time for the gag gifts to come back, I think. Also, he's supposed to bring in regular clothing ... I was thinking some funny tshirts might cheer him, if you feel so inclined (inoffensive, please?) Nica guys - do you have your shirts made for this year?
Other than that ... it's only Monday of a very long week. I do my best to update daily but it doesn't always happen, so assume no news is good news and I'll catch everyone up when I can.
*A special, giant thanks to the Hagen and DeJeu families for their selfless giving this evening. I'm running out of phrases to express utter gratitude.*
Sunday, March 20, 2011
March 20 2011
Dear Ian,
About this time, two weeks ago, I crawled into bed fully clothed, watching you sleep, listening to your breath. We both knew, even though we didn't say it out loud, that things were going downhill ... and watching you then confirmed it; your breathing wasn't right. I fell asleep for a bit, until you walked (staggered) to the bathroom for a drink of water ... and I listened to you cough as you tried to swallow. I let you settle back into bed, walked downstairs, and called the ambulance.
We spent a few miserable days in the step down unit; the doctors still wanted to wait and see. Your ability to move and speak and breathe deteriorated. I had a brief fainting spell and you held my hand over the end of your bed as I lay on the floor, surrounded by hospital staff. I was terrified they would take me away from you, and embarrassed that more people were attending to me than you at that moment.
Your Nicaragua buddies came to visit ... little did they know they arrived just in time for your breathing ability to go seriously downhill. Shortly after I kicked everyone out and shut the door, we exchanged some words ... you were hell-bent on pulling the oxygen tubes out of your nose and I was shouting that you were NOT allowed to not BREATHE and to stop fighting us, dammit. What I didn't realize at this point was that you were already oxygen deprived and starting to become "not you." The guys came in and gave you silly presents; fuzzy slippers, nerf guns to shoot the nurses, a whoopie cushion. But to no avail; the nurse pushed the button, you were "coded" and the breathing team appeared, hustling you off to the ICU. Worst. Night. Ever. Later - Dad says around 2 am, he went back to visit you ... and it was at that moment that you stopped cooperating with the different oxygen mask, and the nurses ... and stopped recognizing Dad or me. The look of fear and anger in your eyes was so intense, and so NOT you ...
A week ago yesterday, you were zoomed off to your second brain surgery! We were assured the A-Team was on the case (not THAT A-team!). In half the time it took to remove that pesky tumor, the doctor removed what he could of this clot and you returned to your ICU room.
The next few days had ups and downs; you squeezed hands and gave thumbs up, but you developed pneumonia and a collapsed lung. You wrote letters on paper or with your finger on the sheet; we tried as best we could to both communicate and allow you rest. You begged for water but I could only provide a swab sponge to the mouth, and even that had to be suctioned out, lest you get more water where it wasn't supposed to be. Your mom sat vigil in your room ... at one point you kicked me out with great fervor, and your mom the same. We didn't take it personally.
The church. Oh my. How they've taken care of me/us, met needs I didn't know we had, covered us in love and prayer. Your Nica buddies and Bible study pals have made regular visits, as have the pastors. The cards! I can't wait for you to read them all - sweet, funny, hand-drawn ... awesome.
I love you so much. You've dropped so low and risen so high these past two weeks ... they're already joking at how insufferable you'll be once you beat this thing. I want this ring back on your finger and the light back in your eyes. I want that Saturday night back, when we all lined up in bed and read stories together.
------------------------update for today ----------------------------
Most all the wires are out. Just that attractive feeding tube in the nose, and you can see the hose leading up to the trach. He is completely off the ventilator, breathing on his own (that tube provides a slightly higher oxygen content, but does not force air into him at all - changes his air from 22? to 30% oxygen, I think is what the nurse said).
He is weak and tired. They have twice had him moved into a chair-contraption to work on strength and clear out his lungs (he's able to cough the yuk out). Just the effort of that move and coughing tires him out so you'd think he was sedated, but he's just THAT tired. It's hard to see a strong man so weak, but it's so amazing to see him breathe on his own ...
Audrey and Ezra both got to see him today, and he them. We didn't get a smile out of him, but he did wave He was just too tired to keep his eyes open long, but he knew they were there. Ezra said, "He's sleepy, and he'll talk when he feels better." And Audrey told him all about her weekend with Gramma.
Next: rehab. The nurse seemed to think it would begin at the hospital and not another facility, so we'll see ... the key to moving from the ICU was the breathing thing ... next will be swallow tests and a smaller trach and A TALKING ATTACHMENT. Food? swallowing on his own? I have no idea what this week looks like, but I know it's going to be an exhausting one for all involved.
The kids are taken care of, I'm able to visit every day, people are standing by to provide us with meals and just about anything we could think of. If you are one of those people ... I can't even begin to express how thankful I am that you are in my life. To have our needs met so seamlessly has been such a blessing and a relief.
About this time, two weeks ago, I crawled into bed fully clothed, watching you sleep, listening to your breath. We both knew, even though we didn't say it out loud, that things were going downhill ... and watching you then confirmed it; your breathing wasn't right. I fell asleep for a bit, until you walked (staggered) to the bathroom for a drink of water ... and I listened to you cough as you tried to swallow. I let you settle back into bed, walked downstairs, and called the ambulance.
We spent a few miserable days in the step down unit; the doctors still wanted to wait and see. Your ability to move and speak and breathe deteriorated. I had a brief fainting spell and you held my hand over the end of your bed as I lay on the floor, surrounded by hospital staff. I was terrified they would take me away from you, and embarrassed that more people were attending to me than you at that moment.
Your Nicaragua buddies came to visit ... little did they know they arrived just in time for your breathing ability to go seriously downhill. Shortly after I kicked everyone out and shut the door, we exchanged some words ... you were hell-bent on pulling the oxygen tubes out of your nose and I was shouting that you were NOT allowed to not BREATHE and to stop fighting us, dammit. What I didn't realize at this point was that you were already oxygen deprived and starting to become "not you." The guys came in and gave you silly presents; fuzzy slippers, nerf guns to shoot the nurses, a whoopie cushion. But to no avail; the nurse pushed the button, you were "coded" and the breathing team appeared, hustling you off to the ICU. Worst. Night. Ever. Later - Dad says around 2 am, he went back to visit you ... and it was at that moment that you stopped cooperating with the different oxygen mask, and the nurses ... and stopped recognizing Dad or me. The look of fear and anger in your eyes was so intense, and so NOT you ...
A week ago yesterday, you were zoomed off to your second brain surgery! We were assured the A-Team was on the case (not THAT A-team!). In half the time it took to remove that pesky tumor, the doctor removed what he could of this clot and you returned to your ICU room.
The next few days had ups and downs; you squeezed hands and gave thumbs up, but you developed pneumonia and a collapsed lung. You wrote letters on paper or with your finger on the sheet; we tried as best we could to both communicate and allow you rest. You begged for water but I could only provide a swab sponge to the mouth, and even that had to be suctioned out, lest you get more water where it wasn't supposed to be. Your mom sat vigil in your room ... at one point you kicked me out with great fervor, and your mom the same. We didn't take it personally.
The church. Oh my. How they've taken care of me/us, met needs I didn't know we had, covered us in love and prayer. Your Nica buddies and Bible study pals have made regular visits, as have the pastors. The cards! I can't wait for you to read them all - sweet, funny, hand-drawn ... awesome.
I love you so much. You've dropped so low and risen so high these past two weeks ... they're already joking at how insufferable you'll be once you beat this thing. I want this ring back on your finger and the light back in your eyes. I want that Saturday night back, when we all lined up in bed and read stories together.
------------------------update for today ----------------------------
He is weak and tired. They have twice had him moved into a chair-contraption to work on strength and clear out his lungs (he's able to cough the yuk out). Just the effort of that move and coughing tires him out so you'd think he was sedated, but he's just THAT tired. It's hard to see a strong man so weak, but it's so amazing to see him breathe on his own ...
Audrey and Ezra both got to see him today, and he them. We didn't get a smile out of him, but he did wave He was just too tired to keep his eyes open long, but he knew they were there. Ezra said, "He's sleepy, and he'll talk when he feels better." And Audrey told him all about her weekend with Gramma.
Next: rehab. The nurse seemed to think it would begin at the hospital and not another facility, so we'll see ... the key to moving from the ICU was the breathing thing ... next will be swallow tests and a smaller trach and A TALKING ATTACHMENT. Food? swallowing on his own? I have no idea what this week looks like, but I know it's going to be an exhausting one for all involved.
The kids are taken care of, I'm able to visit every day, people are standing by to provide us with meals and just about anything we could think of. If you are one of those people ... I can't even begin to express how thankful I am that you are in my life. To have our needs met so seamlessly has been such a blessing and a relief.
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