The O'Neill Family Journal!

June 19, 2002 through December 2, 2002

Hi everyone, Boy, I can't wait for us to get home and get back to normal.  Well, Colin is doing well, even better. After the failed extubation, I got some info from DR Bach that I shared with the PICU team and they changed Colin's mode from SIMV to AC. So much better. He is breathing normal (for him) and his respirations are down and his heart rate better and his sats are up. He had a great night. He did spike a little temp at one point and they did sputum culture, urine sample, x-ray, blood work, etc. His white count is up so they put him on antibiotics. His x-ray looked even better than the day before, so atelectasis isn't the problem. He just had a reflux study. Of course he was fine the first 3 times they did it. Then Gene had them take him off the vent and try it. Sure enough, right up it went! He has a cuffed ET tube so he couldn't aspirate it. So it's like I knew all along, the reflux is due to increased respiratory effort. When he's comfy and/or on bipap, the reflux wasn't as bad. It's due to his effort and "pulling" when he breathes. So, not sure where that leaves us. We haven't come up with a consensus as to whether we should do the surgery while he is intubated or wait for him to recover. He is certainly a hard patient to intubate and I hate for him to be intubated, so we are still not sure. I think we will try extubation tomorrow with the LTV vent. I will not do it until our favorite PICU doc speaks with DR Bach and goes over extubation steps, and settings and such. Casey is doing well. He's pretty much on the tail end of his cold. He really misses his brother. I can tell he is very concerned, poor buddy. I'm sure he has lots of questions that he wishes he could ask. I can use the hospital computer to check my email so I'll be in touch.  Prayers to Gilly and Sky and my little Collie.

Thursday, June 20

Okay, just to retell Colin's story. Last Thursday, he crashed. Was intubated and found both upper lobes collapsed. Things looked better, tried to extubate on Monday (?) and he didn't do well on our bipap. Tried hospital bipap, but he was needing lots of oxygen and he was not aerating well and very uncomfortable, so he was reintubated after a couple of hours and put back on hospital vent.

Friday, June 21, 2002

Hello! He did it! Love the LTV. I'll explain all the settings later; just wanted to let you know he's extubated and happy! He's not making noises yet, but he must be sore! Hi sats are great and his heartrate is wonderful. We have him at a high breath rate right now, but we will lower that as needed. So, thanks for the support and prayers. We'll keep you updated and let you know when we're out of here.

Monday, June 24, 2002

Well, I'm feeling much better about Colin' situation than I did Saturday evening and yesterday morning...that's why I didn't write. I finally was scared. I mean, of course all this was very scary, intense and unpredictable, but I really felt all would be okay. After he was extubated he seemed to do so well and was his happy self. But Saturday evening he started having low sats and tons of secretions and was agitated and not happy. When I got to the hospital yesterday morning (Gene had been there over night) he had done several desats and bradied (sp) on bipap, without warning. I was not happy. Then the RT and I did a couple of in/ex treatments and suctioning and got him some rest and things perked up. One main problem is his feeding. He's been spitting up so they tried to insert a j-tube thru his g-tube but his opening was so narrow the tube they tried to use wouldn't pass thru. They did four tries and 4 x-rays. Grr. Today they may do it thru fluoroscopy (SP). For the remainder of the afternoon and evening and last night, Colin did great! His sats are wonderful and his heart rate and respirations are too! He must have had some plugs and/or goopy secretions that we got out. For 24 hours he was on the LTV WITHOUT any humidity, so that probably contributed to it. So, where are we today??? I guess the j-tube procedure will be first. Then Gene and I want to try to take him off the bipap for ONE minute, in a non-stressful situation and see how it goes. Two days ago I thought we'd be home today, but I guess we won't until we can feed him without spitting up. I am on my way to the hospital soon. Please send us lots of prayers. I can't wait to have my family together again. We MAY try to sneak Casey in to the PICU! He misses his brother! Glad to hear Gilly is on the mend. Whew! Keep it up, Gilly! We all send hugs to everyone! Sue

Wednesday, June 26, 2002

Hi all, Well, Monday was a wasted day at the hospital. Nothing new at all. He did well, but they couldn't get him into fluoroscopy for his j-tube so we just hung out. He did fine. He did start his fussing whenever he saw someone come in, so he's on Atavan and Tylenol around the clock for now. Oh, and they did do an EKG on him in the morning because his heart rate was slow and it jumps a little. I think his heart rate is slow because he is so comfortable with this bipap, but they wanted to be sure. Does anyone else experience that with their sat machines?? That at one second their kid will be at say, 108 and then jump to 112, or something like that?? Amy, I think you said Lily does that. Tuesday, we finally got in to do the gastric emptying study. He was fine during the whole thing. He was sandwiched between this machine and he was perfect, didn't mind at all. But, right after the test and we got back upstairs, he started fussing and having a higher heart rate than he had been having ( I know, first we worry about it being low...) and he was fussy. He was really tired but wouldn't go to sleep. He only had one nap all day. Aunt Chris finally got him to sleep. I left feeling pretty good about his day. Gene just called me this morning and said he didn't have the best night. I guess his heart rate was higher all night. They bumped up his breath rate. He was up down to 26. And they are doing a chest x-ray right now. My gut is that the x-ray will be fine. Not sure what is bugging him. His butt is very red and raw and he's only been on nutrition through IV so maybe that is bugging him. Well, off to the hospital. We may bring Casey over later. He has an appointment to get a Boston brace type deal this afternoon kind of near the hospital. They said they would waive the age limit for him!

Thursday, July 11, 2002

I'm trying to catch up! I can check my email while I am at the hospital, but can't really tie their computer up to reply like I've wanted to. Colin is doing much better. Very well, actually. For a while, he was not doing well and I was in a very dark place. I was so angry and scared and felt so powerless. I've been dealing with this disease for over 5 years, but this time it really got me. I know someone mentioned that we all sound upbeat when talking to everyone...and I always try to be that way too, and I just couldn't. I know all of you go through hard times, we wouldn't be human if we didn't. Maybe we should share some of that at times. I hate to bring anyone down, especially if they are feeling good, but I think if I had "talked" about my feelings I would have gotten over them more quickly. Anyway, Colin is still in. We are on day number 29, I believe. He is so ready to be home. He is still on bipap 24 hours, but we had him off for 5 minutes, two times yesterday and his numbers stayed fine. He was more emotional about it than needing it. Allyson, sounds like Timmy awhile ago, huh? They pulled his femoral line as they assume that was what was giving him an infection. Wait, I will backtrack a bit. He was almost ready to go home when he got c-diff, the poopy thing. It was awful diarrhea (sp?). They were treating him for that but his electrolytes and potassium were screwed up. He looked awful at this point. Then they started getting that under control and I noticed that they were throwing out the stuff they were venting thru his j-tube. Oh yeah, he got a g-jtube. I'm sure throwing out the stomach juices and bile was NOT good. So now we are venting it with a 60 cc syringe like normal. Then, he started dropping sats, increasing heart rate and spiking temp. Tracy told me that's what Sky did when her line was infected. Well, it is scary, so scary. Then when they heard that Gene has some heart arrhythmia they wanted to test Colin with this short-life drug that tries to stop racing hearts. Of course, I was alone with Colin at the time and had to give my permission for it...It didn't work, which means it was a "normal" rhythm. They did do an ultrasound of his heart to make sure it was opening and closing normally. It is. So then they were convinced it was the line (in there for 21 days). They treated it with the normal course of IV antibiotics. They finally pulled it when they heard what type of bug it was. Very resilient. He is on the poopy bug antibiotic and now cipro for the infection. Yesterday he was PERFECT! So good to see him smiling again and playing and talking and kissing and flirting and looking so bright- eyed. So what is the hold up you say??? The D*** vents! They were supposed to ship one to replace the one that blew up. Oh yeah, our LTV-950s blew up before the 4th. So he's been on the hospital bipap. They won't let us out until we have 2 of them. YES, insurance is paying for 2 LTVs! Our PICU doc said they would keep him in the ICU until he could go home with a back up. Well, it seems like the LTVs are in short supply but they are getting more in today but have to inventory them and stuff. We hope to get them by Friday. But, they don't discharge on Friday, Sat, Sun or Monday, so we may be stuck until Tuesday! Can you believe it??? And we still have to come back for a Nissen!!

Tuesday July 30, 2002

Well, Collie is in surgery right this minute. I'm keeping busy with emailing, and praying! I don't know what else to say. I'm really nervous, but I have a good feeling about everything.

Friday, August 30, 2002

Hi all, Colin is doing well. Last time I think I said he was going to get the PPN thru his regular IV line. Our docs wanted it but then the surgeons vetoed it. Grr. Dr Heath finally just said let's let it go. Colin was extubated the other day and has been mostly on bipap but he's tolerated being off just fine. I just don't want to stress him. He's not been crazy about people coming in the room. He has been pitching fits when the nurses come in. He was okay with me yesterday. I think he's feeling better and he's a little bored and not happy with being at the hospital. And, I think he was hungry! He finally got some food yesterday around 5 PM. He seemed to be amazed to have something in his stomach again! He tolerated it fine. So he'll be getting some every 3 hours for now. I think they want to build him up so he can tolerate a moderate bolus. I'm not sure how much. It will be so weird for us not to have to have him on the pump all the time!! Today the epidural will be removed. Hopefully, just Tylenol will be enough. Then we should be able to hold him! I miss snuggling my boy! Well, we do get to lay in bed with him, but having him in my lap will be better! At night Gene has mostly slept in bed with him because if he stirs and finds him not there, he yells! So that is where we stand.

August 20, 2002

Wow, it's been a long time!   I will start from here and not attempt to try to catch up too much!

We had a nice day today.   The weather was beautiful!  So much nicer than the record-breaking heat wave of last week.  It was nice to sleep with the window open and the fan on.  I even shut the fan off in the middle of the night!  I even threw a light blanket over Colin's sheet.  He is such a hot boy he doesn't need much at night, even with the air conditioning on!  This morning both boys went out on the swing in the morning.   Casey didn't even get washed up first!  He had a nice time swinging and listening to his head phones.  Colin swung and swing and played with toys and babbled away.  He looked like he was going to fall asleep so we brought him up for a nap in his crib (Nurse Nancy H was here for him today).  He took a long time to fall asleep, but he was very happy.  Casey came in and watched some TV. 

August 23, 2002:

Big event today was getting immunizations for both boys.  We were a little behind on both boys. Peggy from Mousetrap came out and Colin got two shots and Casey got three!  For Casey: Tetanus, um, geez, I've forgotten.  He was very stoic about it.  Of course, he had Emla cream on so he probably didn't feel much.  At one point, he blinked "yes" when Peggy asked him if it hurt.  Then he did his funny squinty-eyed, smiley, laugh routine.   He admitted he was pulling her leg and that it wasn't bad at all.  He was quiet for the afternoon and took a nice, restful nap with a really low heart rate!.  Mostly a quiet, hang out day.  Nurse Sue and Casey watched some sports.  Colin took a nap while I chatted on the phone. 

September 1, 2002

I am not kidding!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! COLIN GOT HIS 3RD TOOTH!!!!!!!!!!!!!!!!!!!!!!!!!!!1 We were pretty convinced that all that's been going on was related to teething, but now we know for sure! He got his top front tooth on his right!! Woweee! I can totally feel it and if you get in there with a flashlight you can see the tiny, tiny white little bumps! (Sorry Sky S.!)

We're painting today.   Peggy is here!

September 23, 2002

Well, I thought I had better give an update on the boys. A good one, some happy news for everyone! Both boys have been doing great! Casey is going to Kindergarten three days. He will start going 4 days in the middle of October. We have two nurses that go with him. They both know him very well and have been caring for him for years. We handpicked our teacher. She is wonderful! She has a very wonderful class of kids. There are 15 kids altogether. Casey has his girlfriend, Harley, in his class. We were able to arrange that. Mrs Murtagh has each child use a wipe before coming into class each day. She started doing that when she had a class that had a child with peanut allergy. She said her absenteeism was very low that year and the kids were very healthy, so she's doing it again this year. We had lots of meetings and assigning roles, etc. starting way back in the middle of last year. Unfortunately, our SLP left and we have to start with a new one. They hired a communication specialist to take that position so it may be okay. We also have a new case manager this year. We LOVE our old one. She is still with us. She is doing Colin's EEE services. She has stayed involved and is helping out with showing the new teachers how we adapt Casey's work, and to help them learn how Casey communicates with us. They are going to do a whole circle time around getting the kids to use "yes" and "no" questions with Casey. For instance, he wore a Harry Potter t-shirt one day and the kids asked things like "who is your favorite character?" He couldn't answer that one but if they changed it to, "is Harry your favorite character" he could blink lots of times for yes, or close his eyes for no. Casey is going to get a loaner power chair to use at school. One day he will be staying after to practice. We're hoping he won't miss too much class time to do it. They have a swing set up for him for before school and before busses come at the end of school. What else? Casey's scoliosis is pretty bad. We finally have a TLSO that we're using. He looks great in it! He doesn't mind it at all. We only use it when he sits up. I know doing it this way won't stop progression, but I think we're past that. He'll go to ortho clinic in October and we will reassess out plan then. Tomorrow both boys go to the pulmonologist. I have lots of questions for him. Well, I'm running out of steam! Can you believe it?? I will write a Colin update another day. Quickly, he is doing great. Since that tooth came in On September 1st, he has had no desats below 86. He went to 86 the other day when the doctor came to check his ears. He was doing okay until he realized who he was and then he held his breath!

Been a long time, again!

October 3, 2002

Casey went to the pumpkin patch with school today.  It was kind of cold and dreary out.  He and Nurse Sue managed to have fun and picked a beautiful, huge pumpkin! 

October 4, 2002

Colin is 18 months today.   Our boy is so smart and handsome and happy!  He's had some rough times this past hear, but he's come through all of these challenges and showed us his inherent strength to live and be a strong little boy.  I still hate this disease but our boy has showed us a love that puts those feelings aside so we can live every day with feelings of happiness!  Happy half birthday, little man!

Casey had school pictures taken today.  He looked a little sleepy when he went to school today--hope he perked up!

October 5, 2002

Quiet day again.  Aunt Chris is still not feeling well.  She's hardly even come near us except to bring over Gene's birthday cake and to stay for a minute that day.  I wasn't feeling great myself, so I went into bed and read and slept for a while and left Gene with both boys.   The whole shortage of covered nursing shifts has really gotten to me.   Hopefully, by the middle of this coming week things will be back to normal.   Nurse Darla and Nurse Nancy Hadd will be back from physical therapy and surgery.   Grandma and Grandpa O'Neill came over later and saved the day by bringing us dinner--pot roast and rolls and Jell-O and baked apples for dessert.  Yum.  She also folded tons of laundry and did the dishes while I got Colin ready for bed. 

October 6, 2002

Happy 12th Anniversary to us, Happy 12th Anniversary to us!  Another quiet day.  It was beautiful out; a true fall day.  I got two loads of laundry out.  Casey got a tub bath this morning which he loved.  Then we all went outside and swung for a while and enjoyed the fresh air.  Colin and I went up for a nap which he was not interested in.  He made me so frustrated with his whining that I had Nurse Sue go up and lay with him while I sat with Casey.  She listened to his fussing until he fell asleep!  I got to do a little straightening up and equipment cleaning while he slept.  I can't wait for our nursing to get back to normal so things can get back into semi shape around here!   Aunt Chris came over long enough to bring Gene and I lobsters and baked potatoes for dinner!  She didn't stay as she's still sick.  Grandma and Grandpa O'Neill came over and we all ate together and had confetti cake and ice-cream.   Grandpa rocked Casey and sang him songs.  I think they both enjoyed themselves!

October 7, 2002

Gene had to stay home from work today as we had no nurse for Casey or Colin.  we love having Daddy around all day!   He worked on his computer and made some phone calls.  I tried to straighten up and clean in-between caring for the boys.  Gene got Colin to take a nap on bipap on the floor in the living room!  Casey and I read a few books, but mostly he just watched TV.  I felt badly but I don't have a lot of energy to do anything too involved or too exciting!  Grandma and Grandpa O'Neill came over again today.   Grandpa helped Gene take out the air conditioner in Casey's room and put the big storm window back up.  It's really feeling like fall around here.  Not many swinging days left!

October 8, 2002

Nurse Nancy H. is back from her carpal tunnel surgery!  She came today for Colin.  He was very good and happy today.  Great numbers!  He was very silly and didn't want to nap!  Once he fell asleep though, he slept for almost 3 hours!  His sats were 100% and his heart rate was in the 90s and 80s so we know he got a good rest!  Casey and Nurse Sue went to school.  He was very excited when he came home.  we have some more homework to do!  I had all weekend to do homework with Casey and I just spaced it out.   Oh well.  Nurse Darla came this afternoon for Casey.  She is not doing well.  Lots of pain from her shoulder.  I don't think she's going to be able to work.  She has to consult with her docs tomorrow.

October 9, 2002

What a night!  Colin was very "airy" and restless.  No of us got much sleep, except for Casey, of course!  Nurse Julie is back from Italy and did the night shift.  I think Casey peeked at her once or twice.  She brought the boys back some great tee shirts and some coffee for Gene and I.  Good day.  Nurse Nancy L was here for Colin.   He weighed in today at 17 pounds 11.5 ounces which is an all time record!   Gene thinks he needs to weigh more, but I think he looks fine, except for his skinny chest, but that's the SMA.

October 10, 2002

Yeah!  Colin had a great night!  He tolerated sleeping on both sides and he stayed on bipap all night!   He had some gas, but not tons.  We did an experiment by taking off the whisper swivel exhalation valve off of his bipap.  Every night that we did this he had tons of gas.  Last night we put the valve back and he did great!  This morning he became really fussy and had a high heart rate during his feeding.  He also had more secretions and desatted a bit.  I think it's because he needs to poop.  It almost seems like he's refluxing again--he's making those same awful faces and the other symptoms are also a sign of reflux!  This is not supposed to happen!  That's why he had surgery!!!

Casey woke up very happy this morning.  He's off to school looking very handsome!  Well, got a call this AM from Nurse Julie.  Casey was crying and she couldn't get him to stop!  He had been working with the Special Educator and did one activity fine.  Then he just started crying!  Julie brought him into the changing room and got him out of the chair and changed him but he was still upset.  Jennifer came in, and Marie came in, but no one could seem to get him to calm down.  The more anyone asked him questions the more he cried1  I tried talking to him on the phone, but it didn't help.  I left Nurse Nancy with Colin (on bipap) and picked them up from school.  He seemed okay.  We stopped at Brooks and he helped me pick out some witch hazel (for his oily skin) and some mouth wash for him.  He was very happy and silly in the store.   When we got home, he started bawling in the driveway!  He was fine once we got inside.  No clue! 

I actually took a walk today.   We've been eating really poorly.  I've not taken the time to eat fruit or salads as I've been so busy and tired!  So I was inspired to walk today because the afternoon turned out so crisp and fresh.  Casey got to swing outside this afternoon with Julie.  Colin and I watched Halloween videos.  Aunt Chris came for the first time in a while.  Her voice still sounds awful and scratchy, but she feels better.  Casey got a tub bath and we changed his trach.

October 11, 2002

Jennifer had her school visit with Colin today.  He was very cooperative and happy!  He loved all the activities.  She had the book, tape and felt props for The Itsy Bitsy Spider.  I didn't know that it had so many verses!  Then they played with plastic "nuts and bolts."  She held the bolt and Colin screwed on the nut!  He did great!   They also fished and played with graduated cups.  Jennifer helped me download some pictures from my digital.  I really will figure it out one of these days!

I was a little worried about Casey at school today but he did fine!  I didn't hear a lot of details, but all was okay!  He came home with a lot of finished projects and lots of smiley faces and stars on his homework!  He let Colin have his egg carton caterpillar that he made and painted.

Colin and Casey both took nice naps.  We got both boys settled in the living room after naps.  Sue left at 3PM and then I was alone until Nurse Nancy R came at 4PM.  Aunt Chris came.  She's really feeling better but didn't play with the boys yet.  I actually made supper--chicken breasts that Sue invented with balsamic vinegar a little olive oil, and Nature's Seasoning baked in the oven, mashed potatoes and broccoli and cheese.  Then Gene, yes, Gene, my non-sweet husband, had a craving for dessert so we made a boxed cake with Halloween frosting.

October __:

Both boys had appointments with DR Aronsson, the orthopedist today.  Nurse Julie drove and I was nurse for Casey and Nurse Nancy L was with Collie.  Casey's curve has increased a few degrees but it's all relative, according to the doctor.  He is still pretty flexible which is very good.  We talked about another appointment in the spring.  He will talk with some docs that have done surgeries on SMA kids and I'll do some research also.  Then we will decide on the type of surgery and when.  I know it's inevitable.

November 7:

Casey got his flu shot today.  Julie went to Mousetrap to draw up the dose for him and Colin so she had to give it!   Casey had the Emla cream on.  He didn't even seem to feel it.  He didn't close his eyes or yell or anything!

November 9:  

Casey's leg has a reddish area on it not from the shot really, but it looks like it's from the Emla.  Weird.  He says it doesn't bother him.

We brought the boys to see Santa today!  I know, I know, it's early!  He was at a church Christmas bazaar that we go to each year at Julie's Mom's church.  This year we went early so we could see Santa.  Casey was very excited and "yelled" and "yelled" and blinked and blinked!  Santa was very cool and nice and had his nice MRS. Claus with him.  I thought I got a picture with my digital, but I didn't.   Some took his picture and our address and will send it to us.  Casey picked out an ornament for Aunt Chris, but I couldn't find his money so he got to pay with mine!   He was really into picking out the ornament.  I showed him a bunch and then had him blink when he saw the one he wanted!

Guess who didn't like Santa????   Colin!  He loved the van ride and going down to the church basement on the elevator (he was in his Kid Kart) but at soon as he saw Santa he bawled!  And, of course, everyone wanted to see him and say how cute he was and he got pretty mad!  He desatted to 84% which isn't too bad! 

Then we went to Holy Family (the church that Gene grew up in and I made my Communion and Confirmation at and we where were married) for their bazaar.  Nurse Julie and I wanted to stay and eat but Gene wasn't feeling that great so we didn't stay too long.  OH, Casey picked out and bought another Christmas gift for Aunt Chris.

November 10, 2002

Well, tonight was a first!   Casey was in bed before Colin!  Usually Colin falls apart sometime around 7PM.   Tonight he was doing well.  We planned for Casey to go to bed at 7:45 and we did it.  It will take time to pick out clothes for tomorrow, brush teeth, get DAFOs on and read a quick book.

 November 12:  

Casey's had an "eye thing" going on.  I wish I had been keeping up with this journal better--then I'd know when it really started!

November 13:

Colin got his two RSV shots today.  Nurse Nancy L did one and Nurse Sue did one at the same time.  He cried!   He seemed to get over it quicker than the flu shot last week.  Pam (PT) came this morning.  We talked a lot, especially about Casey and how he's got a lot going on and I can't seem to get anything solved/straightened out, etc.  He really is doing fine, but I really worry about his scoliosis thus his respiratory system and all of his organs, etc.  Then there is re-fitting for his TLSO, wheel chair, power wheel chair accommodations to think about, his switch, SCHOOL, which is a biggie, etc.  I talked with David at VNA (case manager) and we're going to set up another care conference within the next couple of weeks.  Both boys took nice naps today.  I went out to shop a bit in Milton; Kinney Drugs, Dollar Store, and Hannafords.  Colin woke up happy and so did Casey.  They watched Scoobly Doo--again.  I didn't feel like cleaning so   I made bread pudding.  I used some of the chocolate bread that I made with the bread machine the other day for the school meeting.  I added some oatmeal sandwich bread and some raisins, too.  Yum.  Then I got really motivated and even made supper!  I made macaroni and cheese from scratch and peas and tossed salad. 

Right before bedtime I checked my email and there was a note from MJ saying that DR Bach doesn't plan on having a conference this May.  It's very depressing to hear that.  It was something I've been looking forward to since last May.  We do plan on going to the FSMA conference in June in DC but it won't be the same.

November 14: 

Colin had a rotten night.   First, Gene got into bed and said he didn't feel well.  Great!  Then, around 2:30 AM Colin was fussy.  I flipped him a lot and "burped" his tube and still he fussed on and off until around 5AM.  I gave him some Tylenol and Gene took off his bipap and let him sleep without it.  After an hour or so he beeped for low sat so he put it back on. 

Casey was good all night.   Julie found some more tiny sties in the same eye.  He was very happy to go to school today!  I cleaned the downstairs bathroom.  Thrill.  Tami (SLP) came for Colin.  She had the old, really cool version of the Fisher Price Farm.  She had extra farmers and animals.  Colin was really into playing.  He payed attention the whole time!  She had him sort of saying "tractor", and he mooed a bit.  He didn't like the dog or the horse.  Well, after Tami was here Colin got grumpy.  We brought him up to nap and he DID NOT nap!  We tried everything!   He fussed and did little dips.  He was I rocked him and that didn't work, either.  Finally, we took him off

November 15:  

Casey got off to school in a good mood.  Colin had Jennifer come to play (teacher).  We did some paperwork for his IFSP review.  She brought watercolors which Colin enjoyed!   I thought he'd hate it since he's not too crazy about drawing with markers.   He picked his colors and let us know when he was ready for a new one and when he was done with the picture.  He's quite artistic!  Colin and I hung out and talked with Amy on the phone.  Casey came home from school all excited!  He had a great day.  Both boys took naps.  Nurse Sue left and I was alone for a while.   Lillian came (Jin Shin Jytsu).  Then Nurse Nancy R came at 4PM.  She hadn't been here for a while so she was all excited to see the boys.  Then Jackie came with a whole trunk full of food for us, and clothes, too.  She and her family adopted us for Christmas.  She said this wasn't really part of the Christmas but it sure felt like it to us!  There's a lot of foods that I like but just never buy for myself so it was extra special. 

Nancy helped me fold laundry and stuff while Gene lay down with Colin in Casey's room and got him to go to sleep.  Sleep-over because we have no night nurse.  He slept but kept waking when he heard us moving around.   Casey got very tired and couldn't even pick a book to read so we got him all snuggled in.  He fell asleep around 10PM.

November 16:

The sleepover went okay.   Casey didn't fall asleep until after 10PM.  Nurse Nancy R stayed until 10:30PM.  I slept fitfully as I was worried about Colin's banana concoction overflowing out of the venting tube.  I kept having to adjust the string and chair that it was tied to!  Gene was snoring awfully loud and I wasn't near enough to smack him so I had to suffer!  Colin slept pretty lightly, too, and then again at times he slept really, really soundly.  I got up later than normal and let everyone else sleep.  Cleaned up the living room a bit.  Got the boys dressed.  I went to the library and got the Q is for Quarry that was reserved for me.  Also got 3 from the Dear America series.  Good weekend to read!  Oh, and Gene went out and bought the generator from Aubuchon's.  He thinks he got a really good deal on it.   They are not carrying that brand anymore so they had to get rid of them.  It's new and has an electric start so I'm happy!  No nurse all day or evening.  The boys were fine.  They did watch a lot of TV!  I actually got some stuff done; paperwork, upstairs bath, clothes washed, folded, put away, etc.  Aunt Chris came over.  She made apple crisp.

November 17:

November 18:

Snow day!  No school today!   We got about 10 inches of snow.  It's very heavy, wet snow.  Julie made it just a little late.  Casey woke up when she came and didn't go back to sleep.   He stayed in his PJs and Julie got him in his chair and he played some on the computer.  The switch must be at school so we put in the Cat in the Hat ABCs that reads to you.  Then he and Julie played some.  He got a tub bath, too.  Oh, and Lori was supposed to come with the guy from VT Center for Independent Living that knows about accessibility--but he couldn't make it with the snow.  Maybe they will come next week.  Gene never went to work.  He was waiting for the guy (we weren't sure he wasn't going to make it) and then he was trying to deal with all the snow.   The littler snow blower couldn't handle the wet snow and the bigger one is in the shop needed a new engine.  Colin was pretty good today.  He was kind of needy and he took a long nap.  He seemed pretty spitty.

November 20:Well, both boys have a cold, so we join the sickos. Casey started over the weekend with increased secretions dripping into his trach. Lots of cough machine for him and rest, etc. He had a snow day Monday, which was perfect timing. He made it to school on Tuesday but Julie had to suction way more than normal and even do his trach twice which he never needs at school. But he had a team coming to evaluate him so he went. Today, is his off day anyway. We were going to see the new Harry Potter with his OT and her son, who is friends with Casey, but I thought it would be way too long for him to sit up--all those secretions will be pooling in his lungs, etc. And, we called and 3 classes were going---too many germs! So it's just as well we wait. He had a slight temp last night but did fine during the night. Today he's very happy hanging out in comfy clothes watching TV. He's not even complaining about having to watch some of Collie's shows! (Barney and Sesame Street). Colin is up and down. One minute he seems perfectly fine and the next he can have a high heart rate or cough, fuss, etc. He had lower sats last night for hours until towards morning he climbed to his normal 100% and with normal heart rate. We got out the nebulizer but haven't really needed it yet. Lots of cough machine for him, with saline, and it really helps. He's been spending a lot of time on bipap and we're encouraging long naps. So, please keep my boys in your prayers!

November 27:

Well, I got behind a bit.   Both boys had colds last week.  They did really well and got over them in a couple of days.  Casey's lingered a little longer than Colin's.  Maybe the Echinacea helped shorten the cold and lessen the severity?  Casey didn't miss school.    Luckily, Wednesday he was at his worst and that's his day off, anyway.   We let him sleep and rest a lot and didn't get him upright much.

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December 2, 2002

Casey didn't get to go to school today.  Nurse Julie is sick and wanted to try to get better as she is also supposed to do the night shift with Casey tonight!  Sue couldn't do it, so Casey had to stay home :(   Gene was home this morning, also, as we had a care conference.   DR. DiMichele and his nurse Peggy came, the PT Pam, and Mike from Keene and David from VNA.  I'm glad Pam was here as we talked a lot about Casey's scoliosis and surgery and such.  She's been at ortho clinic with us most times and she knows Dr Aaronson well.  Dr D is going to get in touch with Dr Lahiri about Casey's fast respirations at night.  They'll talk about what may be the cause and what we should do about it.  We talked about other things but nothing too major.  Mike is going to look into the Knightstar 330 bipap machine for me.  It's up to Keene Medical to see if they want to purchase the machines and then we could try one, but that is about the only way that we will get one.  One of the type 1/2 kids is trying it and last I heard they still liked it.

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