Sooooo happy to all four be home together. Amazing.
Still searching very actively for someone to watch Lars Monday morning 8:00 - 11:30... if we can find someone, then we can both go to his big IEP meeting. Any leads, let us know.
Thank you everyone!
Saturday, February 24, 2007
great evening, good night, great morning = GOING HOME
I just signed discharge papers.
We're going home.
Nice place, but no plans to return soon.
We're going home.
Nice place, but no plans to return soon.
Friday, February 23, 2007
hopefully home Saturday
Since Lars had such a bad night last night, they want to keep him another night.
He's been able to nap a little, but now is awake & upset. Andey & Joa & Denise arrived a bit ago.
Dr. Betterthanthelastguy came through & pooh-pooh'd Cyclone's ideas about waiting to start neurontin for a month, and about spasticity being the cause of pain. He's going to do something smart: send an email to all the docs who might care & ask them to okay starting neurontin in the next couple days. He says then give it 2 months for a good trial.
He's been able to nap a little, but now is awake & upset. Andey & Joa & Denise arrived a bit ago.
Dr. Betterthanthelastguy came through & pooh-pooh'd Cyclone's ideas about waiting to start neurontin for a month, and about spasticity being the cause of pain. He's going to do something smart: send an email to all the docs who might care & ask them to okay starting neurontin in the next couple days. He says then give it 2 months for a good trial.
save the date: upcoming birthday party
Lars Is Turning THREE
We'd love to have you come celebrate with us
Sunday, March 11th
2:00 - 6:00 open-house style
cake & candles at 4:00
28 Ash Street
Marlborough
rsvp if you can come
lisa at kynvi dot com
or
five zero eight, three zero three, zero five four five
We'd love to have you come celebrate with us
Sunday, March 11th
2:00 - 6:00 open-house style
cake & candles at 4:00
28 Ash Street
Marlborough
rsvp if you can come
lisa at kynvi dot com
or
five zero eight, three zero three, zero five four five
cyclone
Dr. Cyclone blew through. Put my mind to rest regarding encephalopathy as a result of depakote/valproic acid. Apparently it would usually set in over the course of days, not months, & would represent a much quicker degeneration than we've seen.
Waiting to start Lars on neurontin until CP (cerebral palsy) docs can see him about his relatively dramatic increase in spasticity & klonus (legs, ankles, & feet). Outpatient CP appointment is in a month, but trying to get him seen in-patient. Cyclone thinks CP may want to start a med that doesn't mix well with neurontin.
Holding off on eeg because want to see it during a neural pain episode & we're not having any.
Not sure if we get to go home today because of his tough night. Decision's been postponed until afternoon.
Takes 6 months for g-tube site to heal & form a track. Then it's an outpatient procedure to exchange it for a mickey button, which will be much less obnoxious. Until August we have a lot of tubing & need to wear loose clothes because the tube wants to be sticking in as straight as possible.
Waiting to start Lars on neurontin until CP (cerebral palsy) docs can see him about his relatively dramatic increase in spasticity & klonus (legs, ankles, & feet). Outpatient CP appointment is in a month, but trying to get him seen in-patient. Cyclone thinks CP may want to start a med that doesn't mix well with neurontin.
Holding off on eeg because want to see it during a neural pain episode & we're not having any.
Not sure if we get to go home today because of his tough night. Decision's been postponed until afternoon.
Takes 6 months for g-tube site to heal & form a track. Then it's an outpatient procedure to exchange it for a mickey button, which will be much less obnoxious. Until August we have a lot of tubing & need to wear loose clothes because the tube wants to be sticking in as straight as possible.
mmmm hard night
All night, sleeping for very brief periods, then startling awake--with or without external sound--& crying, crying, crying. Small fever in the middle, now back down. Not sure what's going on. Some seems like pain, but not all.
Morphine helps with this kind of pain--unlike the neural pain, which it doesn't touch--but I wonder if it also causes other distress. When he woke he seemed scared & distressed, almost psychotic-ish.
Earlier yesterday evening Larzylou had severe pain while dealing with post-stomach-surgery-gas (I've never heard anything like that before) and then with moving his bowels. Ouch.
Our little roommate pulled his j-tube all the way out early this morning. Lots of commotion there.
Yesterday when Lars was feeling good, the full-time in-patient communication enhancement person came by & brought him a CD player & small fan hooked up to a powerlink & a switch. We set them so when he pushes the button, they come on for 30 seconds, then shut off until he pushes the button again. He loves that.
Morphine helps with this kind of pain--unlike the neural pain, which it doesn't touch--but I wonder if it also causes other distress. When he woke he seemed scared & distressed, almost psychotic-ish.
Earlier yesterday evening Larzylou had severe pain while dealing with post-stomach-surgery-gas (I've never heard anything like that before) and then with moving his bowels. Ouch.
Our little roommate pulled his j-tube all the way out early this morning. Lots of commotion there.
Yesterday when Lars was feeling good, the full-time in-patient communication enhancement person came by & brought him a CD player & small fan hooked up to a powerlink & a switch. We set them so when he pushes the button, they come on for 30 seconds, then shut off until he pushes the button again. He loves that.
Thursday, February 22, 2007
home tomorrow?
Too good to be true?? If all continues to go well, we may go home tomorrow afternoon or evening. What a fabulous thought. Today is our 30th day in the hospital during 2007.
Rough Lars night. Waking frequently & much difficulty settling back down. Wants Mama close & holding hands, whispering sweet reassuring words. I'm struggling to settle, too, because evening nurse was at best sloppy, at worst incompetent. Tried to flush IV line with a syringe full of air. So glad I saw those bubbles running through the tube before they got into his vein.
Denise was here all evening with me- just left a few minutes ago. Lisa was here this morning & afternoon. Long phone call with CBT. Mmmm those friends keep me going.
I'm going to try to sleep. I'm sure I have many more wake-ups tonight.
Rough Lars night. Waking frequently & much difficulty settling back down. Wants Mama close & holding hands, whispering sweet reassuring words. I'm struggling to settle, too, because evening nurse was at best sloppy, at worst incompetent. Tried to flush IV line with a syringe full of air. So glad I saw those bubbles running through the tube before they got into his vein.
Denise was here all evening with me- just left a few minutes ago. Lisa was here this morning & afternoon. Long phone call with CBT. Mmmm those friends keep me going.
I'm going to try to sleep. I'm sure I have many more wake-ups tonight.
briefly on half-birthday, post-surgery
Joa's still awake. I taught him a D major chord and a little riff on his Little Martin guitar & he can't get enough. He's so amazing and sweet.
Joa's half birthday party was fabulous. The child life gal left the playroom unlocked for us to have our party in, so we had pizzas, soda, and half-cake and played air hockey, listened to music, and talked. Larsman came reclined in his stroller, Denise & Kali surrounded him with the Geddes aura of contentment, which worked wonders.
Joa had a great time with Michael, Thomas & Jean today at the museum of science, and it continued through the party. Erika made a delicious half-cake, and brought it along with plates, plasticware, a half birthday card in a half envelope, 8 1/2 candles, and a whole present :-). Erika & Molly hung out for the party, which was great fun.
Joa ended up with a cool moving fish light, pokemon cards, worst-case scenario card game, guitar strap, and tuner as well as his guitar. He was quite surprised & entirely grateful & happy. Mama's teary moment came when he went around and gave everyone a hug and thanked them "just for being here."
Lars is feeling pretty sore, I think. Took some time to get pain meds ordered; he was very sad when I left. Kathleen is gracously taking Joa in the morning & then he has a playdate with his friend Andrew in the afternoon. I'm going to go help Andey, who will have had a long night, no doubt, and meet Lisa M. at the hospital to craft Lars' IEP.
More to say, but have to put 8 1/2 year old boy and 41 year old self in bed now.
Joa's half birthday party was fabulous. The child life gal left the playroom unlocked for us to have our party in, so we had pizzas, soda, and half-cake and played air hockey, listened to music, and talked. Larsman came reclined in his stroller, Denise & Kali surrounded him with the Geddes aura of contentment, which worked wonders.
Joa had a great time with Michael, Thomas & Jean today at the museum of science, and it continued through the party. Erika made a delicious half-cake, and brought it along with plates, plasticware, a half birthday card in a half envelope, 8 1/2 candles, and a whole present :-). Erika & Molly hung out for the party, which was great fun.
Joa ended up with a cool moving fish light, pokemon cards, worst-case scenario card game, guitar strap, and tuner as well as his guitar. He was quite surprised & entirely grateful & happy. Mama's teary moment came when he went around and gave everyone a hug and thanked them "just for being here."
Lars is feeling pretty sore, I think. Took some time to get pain meds ordered; he was very sad when I left. Kathleen is gracously taking Joa in the morning & then he has a playdate with his friend Andrew in the afternoon. I'm going to go help Andey, who will have had a long night, no doubt, and meet Lisa M. at the hospital to craft Lars' IEP.
More to say, but have to put 8 1/2 year old boy and 41 year old self in bed now.
Wednesday, February 21, 2007
here he is
Sweet & peaceful, sleeping anesthesia off. Vitals all good. NG tube was removed. Post-op is the noisiest place in the hospital, I think. Such an odd smell.They say we'll go up to our room around 5:00. Joa, Jean, Thomas & Michael will be back around 6:00. Andey arranged for pizzas through the hospital cafeteria. Erika's making & bringing the half-cake. Denise & Kali are coming to celebrate, too.
Lars doesn't get to eat or drink for another 24 hours; it's already been 17 hours.
We probably should have asked our surgeons if they play video games. A new study found that surgeons & surgical residents with a history of playing video games for 3 hours or more per week performed significantly better on a standard surgical skills test than their nonplaying colleagues. From 60-second science podcast- Check it out.
the anesthesiologist
Dr. FirstlyThereIsNoEvidenceOfComplicationsOrInteractionsBetweenTheseAgentsAndNeitherINorAnyPhysicianInTheFinestInstitutionsKnowsOfAnyStudiesShowingAdverseOrBeneficialEffectsFromTheAnesthesia just came by. Amazing. He's like a scripted audio encyclopedia track.
Interesting guy. Beautiful eyes & extremely kind man.
Andey suggested we call him EverythingWentFine, but he would never say that in such a straight forward way. He launched into a description of Lars' airway & talked about how there were no complications resulting from the structure of his airway. Both of us expected him to tell us about some difficulty caused by something other than the structure.
Before surgery he explained the exact sequence of procedures he would go through if Lars started to show signs of an allergic reaction to anesthesia.
He does all this in a manner and tone that are not condescending or superior, but very warm & conversational. If I just listen to the tone & not the words, I forget he's reciting his script.
Hopefully we get to go see Larsy soon.
Interesting guy. Beautiful eyes & extremely kind man.
Andey suggested we call him EverythingWentFine, but he would never say that in such a straight forward way. He launched into a description of Lars' airway & talked about how there were no complications resulting from the structure of his airway. Both of us expected him to tell us about some difficulty caused by something other than the structure.
Before surgery he explained the exact sequence of procedures he would go through if Lars started to show signs of an allergic reaction to anesthesia.
He does all this in a manner and tone that are not condescending or superior, but very warm & conversational. If I just listen to the tone & not the words, I forget he's reciting his script.
Hopefully we get to go see Larsy soon.
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