Yesterday I had an appointment with Maternal Fetal Medicine and everything looks great. The doctor said our cervical study is complete this week and because my cervix "could not be any longer if I tried" (his words...lol) he has ruled out incompetent cervix as a cause of preterm labor/delivery. This is good news, but it doesn't explain why Jack came early, except as we go along we are ruling out different causes. So far we've ruled out infection, uterine abnormalities, incompetent cervix, and maternal health (diabetes, high blood pressure, clotting disorders). So I guess that leaves us hoping it was just a fluke with Jack. The doctor said it's time we start thinking very positively about this pregnancy going to term. With every item that's ruled out my chances get higher. Due to the fact that there's not much left to test or study, he is releasing my care to a "regular" OB/GYN! No more high risk clinic for me. This is good news, but I don' think I will relax much until I'm nearly full term!
Jack was born at 25 weeks, 5 days. In three days I will be pregnant longer than I ever have been before! I was given the syrup for my gestational diabetes test along with the lab slip. I never made it to this test with Jack. It felt good leaving the office with this next task to attend to. I have to drink the glucose syrup and have blood drawn an hour later. I must do this before 28 weeks -- I plan on going this week. I look forward to all of the normal visits from here on. I will go every two weeks until the last month -- then I believe it's weekly. We'll also be scheduling the mandatory c-section -- I just don't know how far in advance they schedule those?
So yes, another great update on the bean. I go again in two weeks. Keep those positive full term vibes coming!!!
Saturday, February 24, 2007
Friday, February 23, 2007
One Blog is Enough!
I've decided I can only keep up with one blog so I moved all of the posts from Bean's Blog over here to Jack's Blog. I copied the comments as well.
So now I am going to pick a new color scheme. Nothing like a little cyber-decorating to lift my spirits. LOL!
I will post pregnancy updates here from now on.
Also, I've started using labels -- so you'll see over on the side a few categories with common posts under one label. This is a nice way to organize things like all of Jack's NICU posts, etc.
So now I am going to pick a new color scheme. Nothing like a little cyber-decorating to lift my spirits. LOL!
I will post pregnancy updates here from now on.
Also, I've started using labels -- so you'll see over on the side a few categories with common posts under one label. This is a nice way to organize things like all of Jack's NICU posts, etc.
Thursday, February 22, 2007
American Idol, The Ladies...
Alaina Alexander: "Brass in Pocket" -- I like her and would like to see her sing something different.
Amy Krebs: "I Can't Make You Love Me" -- Just not as good as the song require's IMHO!
Antonella Barba: "I Don't Want To Miss A Thing" -- Poor girl. She really didn't do very well. I believe she'll be voted off this week.
Gina Glocksen: "All By Myself" -- Just okay for me.
Haley Scarnato: "It's All Coming Back to Me Now" -- I don't remember this performance! Not just saying that...looking at her picture I can't remember this one.
Jordin Sparks: "Gimme One Reason" -- I think she's cute and liked the performance.
Lakisha Jones: "And I Am Telling You, I'm Not Going" -- I do agree she can SING -- I'd like to see a softer side though...
Leslie Hunt: "(You Make Me Feel Like A) Natural Woman" -- I thought it was okay -- she did seem a little stiff up there
Melinda Doolittle: "Since You Been Gone" -- I love her...she's so cute!
Nicole Tranquillo: "Stay" -- Oh no, I am drawing a blank here too!! I should really blog the night before!
Sabrina Sloan: "Never Loved a Man The Way That I Love You" Not my style but good voice, I think!!
Stephanie Edwards: "How Come You Don't Call Me" -- Loved it!!! Probably my favorite female performance of the night!
Wednesday, February 21, 2007
American Idol Season 6!
Idol's Back!!!
Here's my thoughts based on last nights performances ONLY! What do you guys think??
A.J. Tabaldo: "Never Too Much" -- It was okay -- I can't really remember this one.
Blake Lewis: "Somewhere Only We Know" -- My favorite by far. I loved the song choice -- and his stage presence was really, really good.
Brandon Rogers: "Rock With You" -- It was good, but as good as I expected!
Chris Richardson: "I Don't Want to Be" -- I like this guy, although he sounded too nasally for my taste last night.
Chris Sligh: "Typical" -- This was a strange one for me. I didn't care for his stage presence or the song, although he sang it okay.
Jared Cotter: "Back at One" -- I despise this song so it's hard for me to be unbiased. He sang it well I thought.
Nicholas Pedro: "Now and Forever" -- Although a little shy, I think he sang it okay.
Paul Kim: "Careless Whisper" -- Again, just okay for me.
Phil Stacey: "I Could Not Ask For More" -- I wouldn't be surprised if he got voted off. Poor guy.
Rudy Cardenas: "Free Ride" -- I forgot to type here yesterday -- oops. I thought it was waaay corny. I'd like to hear him sing something different.
Sanjaya Malakar: "Knocks Me Off My Feet" -- I did not like this one at all! I think he acts strange too -- too timid on purpose or something like that.
Sundance Head: "Nights in White Satin" -- Eek, very bad song choice. Not what I had expected.
Monday, February 19, 2007
I'm Blogging This!
Guess who's back to wearing glasses after a nice loooong break?? Jack Riley, of course. We had an eye exam this afternoon and that left eye is giving us grief again, even after surgery last year. We are to patch two hours a day and wear his glasses all day. When I told Jack he would have to wear his glasses again he smiled and reached for mine. I told him when we got home he could wear his because mommy needs hers to drive! There is a chance he could need another eye muscle surgery in the future. I have given myself permission NOT to think about that for two months until our follow up appointment.Jack is doing well since his stay in the hospital. He hasn't had any signs of illness what so ever. We have a follow up tomorrow morning with his new ped. He should get the okay to return to school tomorrow! YAY!
Our hospital stay was uneventful. The worst part was the blood draws and the IV sticks. Other than that he had a pretty easy stay. He was put on a three day drip of Gentamicin which has some very serious side effects thankfully none of which occurred! The doctor explained how Jack has a nasty bacteria in his system and luckily we caught it early. The Pseudomonas is resistant to a lot of antibiotics and we were stuck between a rock and a hard place when it came to choosing meds to treat it. He is now on oral Bactrim for 7 days and most likely will stay on it if the Pseudomonas is found in his culture next week. The staff was wonderful -- we moved rooms several times the first day, and even had a roommate at one point...which wasn't pleasant. Thankfully Jason got us moved again to a single room and although we were told we'd have to move if someone else needed it, but we stayed there until discharge! Next week he has the renal ultrasound and the dye/bladder test as well as another culture. I will keep you posted on those results.
I wanted to share some milestone moments too! We've been working for over two years in outpatient speech therapy to get Jack to blow. Bubbles, horns, straws, anything and everything with no success. We've been using the talktools horn hierarchy. Along with a special program administered by the SLP. Well, like I said for two long years we've worked and nothing...he just could not get the oral motor planning to do it. He would become frustrated and wouldn't even let us put the horn to his lips. So we're on a break from all outpatient therapy until Spring (he still gets school therapy 4 times a week) and I've been working with him on all of his therapies at home. Well, guess who finally can blow through anything now!!!!!!!!!! JACK RILEY!!!!! I know some people can't get how important this is -- it seems so small, but it's really, really HUGE I promise!! He is so very proud of himself too.
Jack also said his first 3 word sentence today at the eye doctor. Yesterday while Pa Pa and Grammie Tina were visiting we were telling our dog Bridget to "GO LAY DOWN" because she was all over everyone and so excited to have company. A few times Jack said "LAY DOWN" and we all giggled. Well today we were waiting for the doctor and Jack looked right at me and said "GO LAY DOWN" LOL!!!! Had there been a comfy area I would have. Sometimes his speech is clear and sometimes it's hard to know what he's saying. He tries so hard. "GO LAY DOWN" sounded a little mushed sort of like "GO YAY YOWN" but it still made my day!!! Lately nurses and doctors have been able to understand him too...which is another little boost for us. He's coming up with new words every day -- I've honestly lost count (around 200 now?). So I realize he's still extremely delayed but he's actually verbal now and it's exciting! I still wouldn't call it to the conversational level, but the action, labeling, requesting, sometimes demanding words are there and growing daily.
I am a little nervous because tomorrow is our IEP meeting. I think most of Jack's goals will remain the same with a little tweaking on frequency or length. For example one goal may be to walk 15 feet with his walker, which he's passed so we would increase it to 25 or 50 feet. I don't believe too many new goals need to be written. I am going to ask whether they feel it's necessary for us to bring Jack's wheelchair too and from school. He uses a variety of equipment at the school and if it's all the same to them he can use their stuff at school and our stuff at home. I've mentioned it before -- but I am thrilled with all of the items they have available and how many different positions they get the totally immobile children to use during the day! Jack is mobile by knee walking and using his walker, so anything else they want to add is cool with me. I guess the things that have me fretting is learning the dreaded numbers. They always give an age level and it's upsetting to learn how wide the gap is getting. I know they are JUST numbers :) I tell my peers this stuff all of the time! lol...I will update when I get home.
Gosh, I've written a ramble today! I wanted to mention so much and I've tried to make that great mental note of "I'm Blogging This!" too many times to count this week! The bad thing is if one doesn't blog it right away it can get lost!
Friday, February 16, 2007
We're Home!!!
THANK YOU
for your thoughts and prayers -- Jack is home and doing well. I will give the full update when he goes down for his nap later today.
for your thoughts and prayers -- Jack is home and doing well. I will give the full update when he goes down for his nap later today.
Tuesday, February 13, 2007
Admitted
Jack's been admitted to the hospital to treat the kidney infection. I only have a moment -- I am home to shower and grab a few things. Jack's doing well -- he's actually in great spirits and is flirting with all of the nurses, even at 2 am!
He will be in for at least 3 days (pray this is all) for antibiotic treatment. We chose our local hospital admitted under our general pediatrician instead of the medical center. I am very glad. The peds area is empty and the staff has been overly accommodating. It's also within walking distance to my mom's house -- which is a bonus because of the impending severe weather.
We will follow up with a nephrologist (sp??) to be sure there are no kidney abnormalities. They will do testing and studies once we are discharges.
Keep our little man in your thoughts.
He will be in for at least 3 days (pray this is all) for antibiotic treatment. We chose our local hospital admitted under our general pediatrician instead of the medical center. I am very glad. The peds area is empty and the staff has been overly accommodating. It's also within walking distance to my mom's house -- which is a bonus because of the impending severe weather.
We will follow up with a nephrologist (sp??) to be sure there are no kidney abnormalities. They will do testing and studies once we are discharges.
Keep our little man in your thoughts.
Saturday, February 10, 2007
Cultures...
While we were in the ER they did a urine culture which came back positive for two different types of bacteria. The first bacteria was due to the fact that it wasn't a clean catch -- they used a little bag to collect the sample. Since it wasn't a clean catch the pediatrician couldn't be sure the other bacteria was actually in Jack's system. It could have been a contaminated sample. The Augmentin he was on for the pneumonia would NOT have killed the urinary bacteria too.
We had a follow up appointment with his pediatrician Wednesday to make sure his pneumonia was gone. His lungs sound totally clear! She also wanted to be sure his urine was clear so she did a catheter sample -- which is a CLEAN catch. Oh poor, poor, poor Jack! He had just woken up and we hadn't had a chance to eat breakfast before the appointment. He was so dry no urine would come out. She had to use a syringe to pull out a few drops...Jack was VERY uncomfortable. He screamed and I wanted to cry. It was over in a flash and we had to drive the sample over to the lab. I really didn't think much of it after that.
Yesterday we get a call from the doctor. She said Jack's urine grew another type of bacteria called Pseudomonas -- indicative of a Kidney infection. This is NOT the same bacteria that grew from the ER sample. Which means he had to have acquired this in the last two weeks. She said the colony grew at around 50,000 units and she wanted to treat him with an antibiotic. The problem is, the one that is available orally (Cipro) Jack cannot have because he's too young. The only other option is an injection which they do not provide at the general peds office. She has referred us to a Urologist at the med center. I am sure Jack will have to go through more tests and meds. The poor guy just can't catch a break this year! He's been sick since Thanksgiving. Last night he did have a low grade fever and today he's been a tad bit cranky. Of course we're watchful and hope his fever doesn't go up much higher. The peds office will call when they have something set up with Urology.
I will keep you posted!
PS -- here's a great picture of Jack chatting on his play phone! I wonder who he's talking to?
We had a follow up appointment with his pediatrician Wednesday to make sure his pneumonia was gone. His lungs sound totally clear! She also wanted to be sure his urine was clear so she did a catheter sample -- which is a CLEAN catch. Oh poor, poor, poor Jack! He had just woken up and we hadn't had a chance to eat breakfast before the appointment. He was so dry no urine would come out. She had to use a syringe to pull out a few drops...Jack was VERY uncomfortable. He screamed and I wanted to cry. It was over in a flash and we had to drive the sample over to the lab. I really didn't think much of it after that.
Yesterday we get a call from the doctor. She said Jack's urine grew another type of bacteria called Pseudomonas -- indicative of a Kidney infection. This is NOT the same bacteria that grew from the ER sample. Which means he had to have acquired this in the last two weeks. She said the colony grew at around 50,000 units and she wanted to treat him with an antibiotic. The problem is, the one that is available orally (Cipro) Jack cannot have because he's too young. The only other option is an injection which they do not provide at the general peds office. She has referred us to a Urologist at the med center. I am sure Jack will have to go through more tests and meds. The poor guy just can't catch a break this year! He's been sick since Thanksgiving. Last night he did have a low grade fever and today he's been a tad bit cranky. Of course we're watchful and hope his fever doesn't go up much higher. The peds office will call when they have something set up with Urology.
I will keep you posted!
PS -- here's a great picture of Jack chatting on his play phone! I wonder who he's talking to?
23 Weeks, 3 days!
I had my cervical scan yesterday and in the doctor's very words "Absolutely nothing funky looking" basically perfect with no signs of any cervical changes. YAY!
I mentioned that I've been having some Braxton Hicks Contractions this week, especially in the evening right around dinner time. Even though I knew they were not true labor contractions they still made me nervous. He assured me they are totally normal. He also mentioned to call any time -- if I am worried about anything. I've been staying very hydrated and resting with my feet up when needed. I know how to manage them better now and hopefully they won't continue to make me nervous. I have another cervical scan in two weeks. At that time I will be exactly 25 weeks...
From Baby-Gaga:
At this point, you’ve pretty much adjusted to the fact you’ve got a moving little gymnast inside of you, but now they’re going to kick up the party a notch because they can hear and react to sounds from the outside world. Sounds from your alarm clock, a thunder roll, or that darned car honking at you across the intersection can actually jar their little ears enough to elicit a kick or violent bout of squirming. Of course this also means that their little ears are picking up the sounds of your voice and those near you. So go ahead, sing a lullaby to your little angel—if they start kicking, it’s likely they just want you to stop… or maybe it was a kick of approval? You decide. Their little pink taste buds are still growing and their bones are continuing to ossify (harden). Your baby's tiny veins are visible through their translucent yet wrinkly skin. (Think of it this way: they’ve been swimming in the equivalent of a long hot bath for the past 23 weeks, so you can’t blame them for being a little prune-like.)
Tuesday, February 06, 2007
A Me Me...
I've never actually done a 'Me Me' but I do love reading them! Lisa has inspired my first...I hope others follow as well.
2. Diamonds or pearls? I don't own much in the way of jewelry. I love my diamond ring from Jason, so I'd have to say diamonds.
3. Shoes? It's funny how life changes. I really don't care about shoes anymore. I wear comfortable, easy styles now -- the less expensive the better. I never wear shoes in the house..makes me feel restricted.
4. What was the last film you saw at the theater? The Departed. We get to go to the movies maybe once a year! I enjoyed this movie a lot.
5. What is your favorite TV Show? This tends to change -- I can't miss Lost, Rome, American Idol, The Sopranos, or Big Love. HBO really knows what they are doing. RIP Six Feet Under!
6. What did you have for breakfast? All Bran Flakes with Yogurt Bites, Skim Milk
7. What is your middle name? Starr
8. What is your favorite cuisine? Italian, American, I love all kinds!!
9. What foods do you dislike? Not too many. Maybe just black olives...
10. Favorite Chips? I am not a huge chip person but I like Lays.
ll. Favorite CDs? Well, I don't have CDs anymore -- but my iPod is filled with: The White Stripes, The Postal Service, Arcade Fire, Dave Matthews, Alanis Morissette, Tori Amos, Cold Play, Damien Rice, Death Cab For Cutie, Foo Fighters, Modest Mouse, Indigo Girls, Moby, Liz Phair...
12. What kind of car do you drive? Yes, I drive a minivan -- what were you expecting? Something "cool" LOL!
13. Favorite sandwich? I like anything from the Atlanta Bread Co. Ohhh, I haven't eaten there in over a YEAR!! I love their veggie sandwich on sourdough.
14. What characteristics do you despise in others? Anyone who tries to bully people, force their opinions without listening, rudeness, manipulativeness....
15. What is your favorite clothing? I love clothing from Old Navy. I always have. I am thrilled they have a maternity line as well! Right now I am most comfortable in my loose black super stretchy at the belly pants and a cotton shirt.
l6. If you could go anywhere in the world on vacation? I would go to Europe!
17. What color are your eyes? Blue
l8. Favorite Fashion Brand: Old Navy
l9. Where would you want to retire to? I like our area and really, being only 29 can't picture retiring somewhere like Florida...
20. Favorite time of day? I love mid mornings when the day has started but still has so much potential! I dislike afternoons -- they always seemed to drag.
2l. Where were you born? PA
22. Favorite sport to watch? I don't watch sports. I will tolerate big events like the superbowl, but I am not a sports fan by any means. I do like the Olympics.
23. Who do you least expect to send this back? Doesn't really apply, but I would love to hear a Me Me on any of my blogging friends!
24. Person you expect to send it back first? Whoever has the time! LOL!
25. Coke or Pepsi? Diet Pepsi
26. Any new and exciting news you'd like to share with everyone? We're expecting a baby girl and we like some names starting with the letter "M" -- Nothing revealed till spring!
27. What did you want to be when you were little? I once told my grandma I wanted to be Maria Shriver when I grew up!
28. What is your best childhood memory? I guess Saturday nights at home with my brother. We would rent movies, make brownies and play Nintendo.
29. Did you ever skip school? Not once!
30. Who was your best friend in school? I had many. Sarah P., Steph, Jill, Jason, Sara, Heidi, and I am still close with each of them!
3l. Piercing? Just ears
32. Ever been to Africa ? Nope
33. Ever been toilet papering? No -- is it too late to start?
4. Been in a car accident? Never.
35. Favorite day of the week? Fridays
36. Favorite restaurant? I really like ANY restaurant at this point in my life! I love independently owned family restaurants.
37. Favorite flower? I love the way lilacs smell.
38. Favorite flavor of ice cream? Chunky Monkey by Ben and Jerry's
39. How many times did you fail your drivers license? Passed the first try.
40. From whom did you get your last e-mail? Tina
41. What store would you choose to max out your credit card? Hmm, BabiesRus I guess!
42. Bedtime? Usually before midnight -- lately even earlier!
43. Who are you most curious about their responses to this questionnaire? I hope to see what my other blogging friends have to say!
44. Last person you went out to dinner with? Jason and Jack the night Jack had his seizure.
45. What are you listening to right now? The View on ABC
46. What are your favorite colors? I like blue.
47. How many tattoos do you have? Just one, a small star on my lower back -- about the size of a nickel!
48. How many people are you sending this e-mail to? Everyone who blogs. Tag! You're it!
49. Favorite movie of all time? Titanic is still my all time favorite!
50. Favorite book? Angels and Demons by Dan Brown...I love sooo many books though!
1. What time did you get up this morning? 7:00 am -- now that Jack's been SLEEPING THROUGH THE NIGHT!!! Woo hoo! Minus the 4 times or so I got up to pee...little bean likes sitting on my bladder.
2. Diamonds or pearls? I don't own much in the way of jewelry. I love my diamond ring from Jason, so I'd have to say diamonds.
3. Shoes? It's funny how life changes. I really don't care about shoes anymore. I wear comfortable, easy styles now -- the less expensive the better. I never wear shoes in the house..makes me feel restricted.
4. What was the last film you saw at the theater? The Departed. We get to go to the movies maybe once a year! I enjoyed this movie a lot.
5. What is your favorite TV Show? This tends to change -- I can't miss Lost, Rome, American Idol, The Sopranos, or Big Love. HBO really knows what they are doing. RIP Six Feet Under!
6. What did you have for breakfast? All Bran Flakes with Yogurt Bites, Skim Milk
7. What is your middle name? Starr
8. What is your favorite cuisine? Italian, American, I love all kinds!!
9. What foods do you dislike? Not too many. Maybe just black olives...
10. Favorite Chips? I am not a huge chip person but I like Lays.
ll. Favorite CDs? Well, I don't have CDs anymore -- but my iPod is filled with: The White Stripes, The Postal Service, Arcade Fire, Dave Matthews, Alanis Morissette, Tori Amos, Cold Play, Damien Rice, Death Cab For Cutie, Foo Fighters, Modest Mouse, Indigo Girls, Moby, Liz Phair...
12. What kind of car do you drive? Yes, I drive a minivan -- what were you expecting? Something "cool" LOL!
13. Favorite sandwich? I like anything from the Atlanta Bread Co. Ohhh, I haven't eaten there in over a YEAR!! I love their veggie sandwich on sourdough.
14. What characteristics do you despise in others? Anyone who tries to bully people, force their opinions without listening, rudeness, manipulativeness....
15. What is your favorite clothing? I love clothing from Old Navy. I always have. I am thrilled they have a maternity line as well! Right now I am most comfortable in my loose black super stretchy at the belly pants and a cotton shirt.
l6. If you could go anywhere in the world on vacation? I would go to Europe!
17. What color are your eyes? Blue
l8. Favorite Fashion Brand: Old Navy
l9. Where would you want to retire to? I like our area and really, being only 29 can't picture retiring somewhere like Florida...
20. Favorite time of day? I love mid mornings when the day has started but still has so much potential! I dislike afternoons -- they always seemed to drag.
2l. Where were you born? PA
22. Favorite sport to watch? I don't watch sports. I will tolerate big events like the superbowl, but I am not a sports fan by any means. I do like the Olympics.
23. Who do you least expect to send this back? Doesn't really apply, but I would love to hear a Me Me on any of my blogging friends!
24. Person you expect to send it back first? Whoever has the time! LOL!
25. Coke or Pepsi? Diet Pepsi
26. Any new and exciting news you'd like to share with everyone? We're expecting a baby girl and we like some names starting with the letter "M" -- Nothing revealed till spring!
27. What did you want to be when you were little? I once told my grandma I wanted to be Maria Shriver when I grew up!
28. What is your best childhood memory? I guess Saturday nights at home with my brother. We would rent movies, make brownies and play Nintendo.
29. Did you ever skip school? Not once!
30. Who was your best friend in school? I had many. Sarah P., Steph, Jill, Jason, Sara, Heidi, and I am still close with each of them!
3l. Piercing? Just ears
32. Ever been to Africa ? Nope
33. Ever been toilet papering? No -- is it too late to start?
4. Been in a car accident? Never.
35. Favorite day of the week? Fridays
36. Favorite restaurant? I really like ANY restaurant at this point in my life! I love independently owned family restaurants.
37. Favorite flower? I love the way lilacs smell.
38. Favorite flavor of ice cream? Chunky Monkey by Ben and Jerry's
39. How many times did you fail your drivers license? Passed the first try.
40. From whom did you get your last e-mail? Tina
41. What store would you choose to max out your credit card? Hmm, BabiesRus I guess!
42. Bedtime? Usually before midnight -- lately even earlier!
43. Who are you most curious about their responses to this questionnaire? I hope to see what my other blogging friends have to say!
44. Last person you went out to dinner with? Jason and Jack the night Jack had his seizure.
45. What are you listening to right now? The View on ABC
46. What are your favorite colors? I like blue.
47. How many tattoos do you have? Just one, a small star on my lower back -- about the size of a nickel!
48. How many people are you sending this e-mail to? Everyone who blogs. Tag! You're it!
49. Favorite movie of all time? Titanic is still my all time favorite!
50. Favorite book? Angels and Demons by Dan Brown...I love sooo many books though!
Friday, February 02, 2007
A Week Later...
And we're back to good! Jack's feeling 100% better after resting the entire week. He slept A LOT this week which was really good for him. We didn't leave the house at all...we set up camp in the living room and watched a whole lot of cartoons! We had some company towards the end of the week and Jack loved every minute of the visits!!
Jack will most likely return to school on Monday. I talked to his teacher this week and she said they had Jack in their thoughts. I also asked about the need for a nurse in school. I know some children have a nurse for various reasons (g-tubes, seizures, etc.) and I wasn't sure if Jack needed one now due to the chance he could have a seizure and need medication. His teacher really didn't seem to think Jack will need a nurse. I guess I am nervous about letting him in someone else's care...I know they'd react superbly in a crisis situation I just don't like to think of not being there if something does happen.
I managed to catch a cold and boy is it taking its toll. I hope to go to Priority Care tomorrow morning while Jason is with Jack. I believe it's probably a sinus infection. My head is stuffy, my body aches, and my throat is really, really sore. Due to being pregnant, there isn't much I can take for the symptoms but I have been enjoying warm tea with honey and lemon.
Oh, and here are the
JANUARY PHOTOS!!
Jack will most likely return to school on Monday. I talked to his teacher this week and she said they had Jack in their thoughts. I also asked about the need for a nurse in school. I know some children have a nurse for various reasons (g-tubes, seizures, etc.) and I wasn't sure if Jack needed one now due to the chance he could have a seizure and need medication. His teacher really didn't seem to think Jack will need a nurse. I guess I am nervous about letting him in someone else's care...I know they'd react superbly in a crisis situation I just don't like to think of not being there if something does happen.
I managed to catch a cold and boy is it taking its toll. I hope to go to Priority Care tomorrow morning while Jason is with Jack. I believe it's probably a sinus infection. My head is stuffy, my body aches, and my throat is really, really sore. Due to being pregnant, there isn't much I can take for the symptoms but I have been enjoying warm tea with honey and lemon.
Oh, and here are the
JANUARY PHOTOS!!
Everything Looks Good!
I realized I haven't posted an update! Everything looked good at my cervix check. I got to see little bean for a few moments and they said her heart rate was 144 beats per minute. Perfect!
I am starting to make a list of things we'll need. I am getting excited! Diapers, bottles, bibs, oh my! LOL -- we haven't gotten far on the nursery but I hope to make some progress this weekend!
I am starting to make a list of things we'll need. I am getting excited! Diapers, bottles, bibs, oh my! LOL -- we haven't gotten far on the nursery but I hope to make some progress this weekend!
Monday, January 29, 2007
A Major Seizure...911
Friday night we went to a local Chinese Buffet for dinner. Jack looooves the buffet and watching tons of families eat (it's a big place and very busy). It was a great dinner...everyone was happy and Jack did very well eating noodles with a fork.
We got home and got Jack ready for bed. Around 8 pm we gave him his usual meds (Baclofen and Tegretol) and snuggled in to watch a little tv. Jack was totally fine but he seemed to be fighting sleep. It was around 10:30 pm. He was on the opposite end of the sofa and Jason was in the other room. When Jason came in the room I moved down to give him some room on the couch. I brushed up against Jack and he felt so hot. I actually pulled my hand away because it shocked me how hot he was! Jason ran for the thermometer and it read 103.5...the highest fever Jack's ever had that I can remember. He started moaning and we gave him Motrin right away. We took his temp again about 45 minutes later and it actually went up to 103.7. We then gave him Tylenol. That brought it down a little and at 1:00 am we decided to go to bed and take Jack with us to our bed. At around 2:30 am I awoke to a hot, hot, little body vomiting everywhere. He was shaken up and very hot. We did not have time to take his temp but I am sure it was over 104 or more. We rushed him over to the bath tub and Jason bathed him in luke warm water. After a few minutes Jack was playing in the tub as I stripped the bed. We took his temperature afterwards and it was 101 or 102 (I can't remember) but we weren't too concerned.
The adrenaline had everyone wide awake so we went downstairs to the family room to watch tv. It was about 3:00 am at this point. Jack couldn't get settled and he was bouncing around a bit on Jason's sofa. We noticed Jack started breathing heavily and I thought he was going to vomit again (we were prepared with a bucket and lots of old towels) instead he started grinding his teeth really hard. Again, I didn't think anything right away other than maybe he was chilled and his teeth were chattering. I asked him why he was doing that with his teeth and I asked Jason if he thought he could break his teeth that way? He sang part of the wheels on the bus song and then started with his teeth again. He was starting to stare at the ceiling and point to something we couldn't see up there. Jason handed him to me on my sofa and I had him in my lap. I was talking to him, asking him how he felt, and his head jerked to the left and stayed there. I asked Jason to try to get his attention and he couldn't. At this point I said out loud "I think he's having a seizure" and I placed him gently on the ground. His head and eyes were fixed to the left and his entire body started convulsing and jerking. Jason went to call 911 at 3:19 am and I stayed with Jack making sure he kept his airway open. There was a lot of drool and bubbles in and around his mouth. He was turning blue and his breathing was erratic and shallow. A police officer was first to arrive. I swear he showed up in two seconds. He was very nice and took Jack's pulse. A few minutes later two volunteers from the fire company came with an oxygen tank and mask. As they were placing the O2 on Jack the paramedics arrived. They assessed Jack and told me to go get my shoes and a coat. I don't remember doing this at all.
They carried Jack upstairs and out into the freezing cold night with just his little pj's on and an old towel covering his back. They got him on the ambulance and Jason sat in the back with them. They administered vallium (diastat) rectally and soon after Jack calmed a little but was still seizing. They also started an IV. It was close to 4:00 am and the ambulance took us to the med center.
I have zero concept of time from this point on. I know we arrived and they took his patient and insurance information and got us into a room right away. Again, what happened next is sort of fuzzy. They gave him ativan and took him for a CT scan. I think this is when I called my mom and Jason called his mom too. It was around 5 am. At this point Jack was agitated and kicking his legs but most likely out of the seizure. He still hadn’t woken up. We don’t know exactly when the seizure stopped but it was over an hour long and under two hours. I had no idea if he was going to be okay. I prayed he would be. They came back and told us the CT scan looked good. No bleeding or hemmorages or swelling of his ventricles. We talked to neurosurgery and they compared his scans to rule out a shunt malfunction. The ER doctor ordered tons of labs and it was then just a waiting game. I don’t remember when Jack started to wake a little but I think it was when neurosurgery was examining him. He scrunched his face and it was the first time I saw he was “in there.” They assured us he was heavily sedated and his reactions were normal. I felt much better after they left.
At this point we just needed to wait for the labs and the chest xray. They told us the lower lobe of his right lung had what looked like bacterial pneumonia — possibly from aspiration. We didn’t connect the dots until a day or two later — but 3 weeks ago during his apnea episode at CHOP while getting Botox he very well could have aspirated while they were suctioning him. So it all makes a little more sense now as to the sudden infection without any other symptoms like a cold, etc. General pediatrics came to evaluate him and said he may need to be admitted if his oxygen requirements remain high. (He was on 4 liters of oxygen). She weaned him down some and Jack hung out around 92% which was just at the acceptable point. She ordered more fluids through his IV, and also an antibiotic.
Grandma Linda and Brian came and took Jason home for the car since we both rode in the ambulance. I waited and watched Jack sleep. At this time I believe it was close to 11:00. We were waiting on our neurology consult and when the dr. came in I was so relieved! It was Jack’s regular neurologist!!! It was like seeing an old friend. We talked about what happened and he diagnosed Jack as having a Febrile Seizure. I explained how this was all so new to us. The type of event we witnessed before was just a small, small starting spell. Nothing like this. He said his Tegretol level was on the lower end of the therapeutic range, he has an underlying seizure disorder with abnormal eeg’s, and the very sudden onset of a high fever is what caused the event. He gave us a schedule to raise Jack’s Tegretol dose over the next two weeks. He also gave us a prescription for emergency seizure meds...it’s called diastat and it’s the same thing they gave Jack on the ambulance. We are to administer it if a seizure lasts longer than two minutes. This is somewhat peace of mind knowing we can do SOMETHING if this happens again.
Jason came back and I told him what the neurologist said and he took the prescriptions to be filled. General peds came back and took Jack off his oxygen all together and he did well. He was 93-94% for over an hour. He still hadn’t really woken up at all. I really wanted to stay the night — but looking back it really wasn’t necessary. We left with emergency diastat, antibiotics, and instructions to keep his fever down and to follow up with neurology and his regular ped within a week. Jack woke up a few hours after we got home and begged for food. We gave him some chicken broth and some pedialyte. He went right back to sleep and aside from waking every few hours to moan a little he slept all night (with us) on Saturday. His fever was still up around 102 and we rotated giving motrin and tylenol all through the night.
Sunday was a good day. His fever was down to 101 or so and he was playing and ate crackers, cereal, soup and drank lots of pedialyte. I asked Jason to stay home from work today (Monday) because I had to go for a cervix check this morning and I did not want to take him out at all and I didn’t want my mother to worry about watching him all alone while he’s still so sick. Today was a very mellow day. He’s been sleeping all day...I called the school this morning and explained what happened and told them he probably wouldn’t be in for the rest of the week. He was supposted to go to CHOP on Friday for a post botox check but I am canceling that as well and rescheduling for another time. My mom is free tomorrow to come over for a bit which I will be very grateful for.
We are tired but thankful he’s doing well. I am sure he’ll be sleepy for a few days as he heals and gets better. I am sorry if this was choppy and all over the place but I think I am suffering from a bit of post traumatic stress — I will keep everyone up to date. I am sure I left out pieces too and am forgetting exactly how things happened. Please keep our little man in your thoughts and prayers. He is getting better day by day.
PS — everything looks perfect from my check up this morning. So signs of preterm labor...cervix looks perfect. I’m 22 weeks on Wed.
We got home and got Jack ready for bed. Around 8 pm we gave him his usual meds (Baclofen and Tegretol) and snuggled in to watch a little tv. Jack was totally fine but he seemed to be fighting sleep. It was around 10:30 pm. He was on the opposite end of the sofa and Jason was in the other room. When Jason came in the room I moved down to give him some room on the couch. I brushed up against Jack and he felt so hot. I actually pulled my hand away because it shocked me how hot he was! Jason ran for the thermometer and it read 103.5...the highest fever Jack's ever had that I can remember. He started moaning and we gave him Motrin right away. We took his temp again about 45 minutes later and it actually went up to 103.7. We then gave him Tylenol. That brought it down a little and at 1:00 am we decided to go to bed and take Jack with us to our bed. At around 2:30 am I awoke to a hot, hot, little body vomiting everywhere. He was shaken up and very hot. We did not have time to take his temp but I am sure it was over 104 or more. We rushed him over to the bath tub and Jason bathed him in luke warm water. After a few minutes Jack was playing in the tub as I stripped the bed. We took his temperature afterwards and it was 101 or 102 (I can't remember) but we weren't too concerned.
The adrenaline had everyone wide awake so we went downstairs to the family room to watch tv. It was about 3:00 am at this point. Jack couldn't get settled and he was bouncing around a bit on Jason's sofa. We noticed Jack started breathing heavily and I thought he was going to vomit again (we were prepared with a bucket and lots of old towels) instead he started grinding his teeth really hard. Again, I didn't think anything right away other than maybe he was chilled and his teeth were chattering. I asked him why he was doing that with his teeth and I asked Jason if he thought he could break his teeth that way? He sang part of the wheels on the bus song and then started with his teeth again. He was starting to stare at the ceiling and point to something we couldn't see up there. Jason handed him to me on my sofa and I had him in my lap. I was talking to him, asking him how he felt, and his head jerked to the left and stayed there. I asked Jason to try to get his attention and he couldn't. At this point I said out loud "I think he's having a seizure" and I placed him gently on the ground. His head and eyes were fixed to the left and his entire body started convulsing and jerking. Jason went to call 911 at 3:19 am and I stayed with Jack making sure he kept his airway open. There was a lot of drool and bubbles in and around his mouth. He was turning blue and his breathing was erratic and shallow. A police officer was first to arrive. I swear he showed up in two seconds. He was very nice and took Jack's pulse. A few minutes later two volunteers from the fire company came with an oxygen tank and mask. As they were placing the O2 on Jack the paramedics arrived. They assessed Jack and told me to go get my shoes and a coat. I don't remember doing this at all.
They carried Jack upstairs and out into the freezing cold night with just his little pj's on and an old towel covering his back. They got him on the ambulance and Jason sat in the back with them. They administered vallium (diastat) rectally and soon after Jack calmed a little but was still seizing. They also started an IV. It was close to 4:00 am and the ambulance took us to the med center.
I have zero concept of time from this point on. I know we arrived and they took his patient and insurance information and got us into a room right away. Again, what happened next is sort of fuzzy. They gave him ativan and took him for a CT scan. I think this is when I called my mom and Jason called his mom too. It was around 5 am. At this point Jack was agitated and kicking his legs but most likely out of the seizure. He still hadn’t woken up. We don’t know exactly when the seizure stopped but it was over an hour long and under two hours. I had no idea if he was going to be okay. I prayed he would be. They came back and told us the CT scan looked good. No bleeding or hemmorages or swelling of his ventricles. We talked to neurosurgery and they compared his scans to rule out a shunt malfunction. The ER doctor ordered tons of labs and it was then just a waiting game. I don’t remember when Jack started to wake a little but I think it was when neurosurgery was examining him. He scrunched his face and it was the first time I saw he was “in there.” They assured us he was heavily sedated and his reactions were normal. I felt much better after they left.
At this point we just needed to wait for the labs and the chest xray. They told us the lower lobe of his right lung had what looked like bacterial pneumonia — possibly from aspiration. We didn’t connect the dots until a day or two later — but 3 weeks ago during his apnea episode at CHOP while getting Botox he very well could have aspirated while they were suctioning him. So it all makes a little more sense now as to the sudden infection without any other symptoms like a cold, etc. General pediatrics came to evaluate him and said he may need to be admitted if his oxygen requirements remain high. (He was on 4 liters of oxygen). She weaned him down some and Jack hung out around 92% which was just at the acceptable point. She ordered more fluids through his IV, and also an antibiotic.
Grandma Linda and Brian came and took Jason home for the car since we both rode in the ambulance. I waited and watched Jack sleep. At this time I believe it was close to 11:00. We were waiting on our neurology consult and when the dr. came in I was so relieved! It was Jack’s regular neurologist!!! It was like seeing an old friend. We talked about what happened and he diagnosed Jack as having a Febrile Seizure. I explained how this was all so new to us. The type of event we witnessed before was just a small, small starting spell. Nothing like this. He said his Tegretol level was on the lower end of the therapeutic range, he has an underlying seizure disorder with abnormal eeg’s, and the very sudden onset of a high fever is what caused the event. He gave us a schedule to raise Jack’s Tegretol dose over the next two weeks. He also gave us a prescription for emergency seizure meds...it’s called diastat and it’s the same thing they gave Jack on the ambulance. We are to administer it if a seizure lasts longer than two minutes. This is somewhat peace of mind knowing we can do SOMETHING if this happens again.
Jason came back and I told him what the neurologist said and he took the prescriptions to be filled. General peds came back and took Jack off his oxygen all together and he did well. He was 93-94% for over an hour. He still hadn’t really woken up at all. I really wanted to stay the night — but looking back it really wasn’t necessary. We left with emergency diastat, antibiotics, and instructions to keep his fever down and to follow up with neurology and his regular ped within a week. Jack woke up a few hours after we got home and begged for food. We gave him some chicken broth and some pedialyte. He went right back to sleep and aside from waking every few hours to moan a little he slept all night (with us) on Saturday. His fever was still up around 102 and we rotated giving motrin and tylenol all through the night.
Sunday was a good day. His fever was down to 101 or so and he was playing and ate crackers, cereal, soup and drank lots of pedialyte. I asked Jason to stay home from work today (Monday) because I had to go for a cervix check this morning and I did not want to take him out at all and I didn’t want my mother to worry about watching him all alone while he’s still so sick. Today was a very mellow day. He’s been sleeping all day...I called the school this morning and explained what happened and told them he probably wouldn’t be in for the rest of the week. He was supposted to go to CHOP on Friday for a post botox check but I am canceling that as well and rescheduling for another time. My mom is free tomorrow to come over for a bit which I will be very grateful for.
We are tired but thankful he’s doing well. I am sure he’ll be sleepy for a few days as he heals and gets better. I am sorry if this was choppy and all over the place but I think I am suffering from a bit of post traumatic stress — I will keep everyone up to date. I am sure I left out pieces too and am forgetting exactly how things happened. Please keep our little man in your thoughts and prayers. He is getting better day by day.
PS — everything looks perfect from my check up this morning. So signs of preterm labor...cervix looks perfect. I’m 22 weeks on Wed.
Wednesday, January 24, 2007
21 Weeks Today
I can't believe I am only 4 weeks away from when I delivered Jack. I just want to make it through the next month -- and then go back to taking it day by day, week by week.
The Bean moves a lot! Instead of gentle little flutters I am getting fully kicked...after dinner when we're relaxing in front of the TV I can see by belly move. It's the freakiest thing. Of course when I go to show Jason the Bean becomes still -- but isn't that how kids are, even in the womb?
I have my next check up on Monday 1/29. I will keep you posted!
The Bean moves a lot! Instead of gentle little flutters I am getting fully kicked...after dinner when we're relaxing in front of the TV I can see by belly move. It's the freakiest thing. Of course when I go to show Jason the Bean becomes still -- but isn't that how kids are, even in the womb?
I have my next check up on Monday 1/29. I will keep you posted!
Tuesday, January 23, 2007
Just Jack :)
I love this picture. I had to share it! Jack's been standing like this randomly around the house. At my dresser, the tv, sofa, our bed, etc. He's been stepping too like he's testing the water...lol. I think at times he's contemplating taking an independent step.Jack's been enjoying school and looks forward to the bus's arrival every day. If I tell him it's time to get ready for school he'll ask me "Bus?" and I assure him the bus will come get him when it's time.
Jack has a great sense of humor. He makes me laugh and loves to get attention this way. Sometimes it's hard because he can be a bit naughty and I have to turn away because I don't want him to see me stifling my laughter.
We watch Jeopardy almost every night after dinner. We unwind as a family and try to guess the answers...well, questions. I'd say we've been doing this almost every day since Jack's been born. It shouldn't come a surprise that last night he sang the entire theme song with "doo, doo, doo's" We were cracking up! I am not sure too many other kids his age would know this tune. LOL! He loves to sing and comes home from school singing a different song every day. The thing is, he rarely sings IN school. I told his teachers how much he sings at home and they were shocked. He won't open his mouth when the group sings. I don't think he's shy, and I am sure he'll sing with everyone else soon enough.
The effects of the botox are really becoming noticeable. His right hand and arm are much looser and he's impressing the OT at school with how he's playing with both hands!! We try to get him to do bigger movements (like high 5, or picking up larger objects) and he's doing great. I don't know if he'll ever have the accuracy to pick up small items (like cheerios, etc.) with that hand. I guess our long-term goal is to make it as much of a helper hand as possible. He will always make an attempt if we ask him to use his right arm. So we're encouraging everyone when you're playing with Jack to do the same thing! He of course will eat up the praise too!
Well, I've got a chocolate cake in the oven and have a few minutes until Jeopardy starts -- gotta run!!
Monday, January 15, 2007
A MUCH Better Day...
After what happened Thursday I was really shaken and nervous about my ultrasound appointment the next day. Could we handle bad news? Before Jack we lost our first baby girl Emma to a chromosomal abnormality 45 X which caused a severe Cystic Hygroma and deadly fetal hydrops. There was a zero % chance of survival. She was born still at 22 weeks gestation April 12, 2001. Then, two years later we decided to try again. We conceived Jack with no problems -- had many ultrasounds completed and an amniocentesis done to be sure there were no problems. We had a totally healthy baby boy -- until Jack's arrival at 25 weeks gestation. So now we're a little nervous about being pregnant again. We had our ultrasound on Friday and everything looks PERFECT! I really didn't realize just how much fear and worry I was carrying until it suddenly lifted when the dr. said our baby girl was perfect! Of course, there is still pre-term labor and delivery to worry about -- but I am being followed every two weeks from now on to have my cervix measured. So far at 20 weeks my cervix looks as it should.
Earlier Friday morning the representative from the equipment company called to say he was sorry to hear Jack had a rough go and couldn't make it to the seating clinic. He said the therapists at the clinic took a look at Jack's chair and didn't think he needed to be seen in the full clinic. So Mr. Equipment Guy said he could arrange for a delivery to our house! He then went on to say he had some time later that same day and could fit the TWO HOUR journey into his schedule! I thanked him over and over. This was wonderful news. I also told him I would be away for a while in the afternoon -- but my mother would be at our house with Jack. He also said if something came up and he couldn't make it he'd reschedule for the following week.
After the ultrasound appointment I called my mom to tell her the wonderful news. She said Mr. Equipment Guy was at our house setting up the chair already! I told her to tell him we'd be there in 20 minutes!! When we got home Jack greeted us at the door in his brand new wheelchair!! It was so cool! I really couldn't have asked for a better turn out to that week.
Jack needed no introduction -- he really knew what to do right away. He does have the circle thing going because he doesn't yet steer with his right hand. You almost have to see it in person to get how perfect it is for Jack! I wanted to share my ideas on how we intend to use the chair...
For longer distances. For this reason we did not order a tray because for us, it's not going to be used in a stationary setting. If he's eating he's at the table with us in his feeding chair. If he's working at school he's in a chair at the table with the rest of the children. If he's going a short distance he'll use his walker. Longer distances are fine with me. I am not sending it to school right away. I want to become familiar with it myself and get a feel for how we'll use it as well. I've mentioned before -- I want it to take place of his stroller at home and at school. He will continue to walk short distances with his walker (which, by the was is going WONDERFULLY!)
Here are some pictures:
The right wheel has pegs attached so Jack can push with a closed fist or the heel of his hand. He doesn't have to worry about trying to open his right hand and grasp the wheel. This is a great workout for his right side!
I am looking forward to using it. Right now I cannot lift it in and out of the car because I am limited to only lifting Jack when absolutely necessary. So we'll have to be sure Daddy is with us for our outings when we use it.
Jack is doing very well after Botox and the apnea during sedation. He doesn't remember anything (thank God). It's strange because he's never had a bad reaction to sedation in the 20+ times he's been under in his life. Right now I am not even thinking of "next time" but when I do think of it and we're faced with it we're going to be very nervous.
Well as I've rambled Jack's fallen asleep on the sofa watching Sesame Street. I usually take advantage of nap time to eat breakfast and shower...so gotta go!
Earlier Friday morning the representative from the equipment company called to say he was sorry to hear Jack had a rough go and couldn't make it to the seating clinic. He said the therapists at the clinic took a look at Jack's chair and didn't think he needed to be seen in the full clinic. So Mr. Equipment Guy said he could arrange for a delivery to our house! He then went on to say he had some time later that same day and could fit the TWO HOUR journey into his schedule! I thanked him over and over. This was wonderful news. I also told him I would be away for a while in the afternoon -- but my mother would be at our house with Jack. He also said if something came up and he couldn't make it he'd reschedule for the following week.
After the ultrasound appointment I called my mom to tell her the wonderful news. She said Mr. Equipment Guy was at our house setting up the chair already! I told her to tell him we'd be there in 20 minutes!! When we got home Jack greeted us at the door in his brand new wheelchair!! It was so cool! I really couldn't have asked for a better turn out to that week.
Jack needed no introduction -- he really knew what to do right away. He does have the circle thing going because he doesn't yet steer with his right hand. You almost have to see it in person to get how perfect it is for Jack! I wanted to share my ideas on how we intend to use the chair...
For longer distances. For this reason we did not order a tray because for us, it's not going to be used in a stationary setting. If he's eating he's at the table with us in his feeding chair. If he's working at school he's in a chair at the table with the rest of the children. If he's going a short distance he'll use his walker. Longer distances are fine with me. I am not sending it to school right away. I want to become familiar with it myself and get a feel for how we'll use it as well. I've mentioned before -- I want it to take place of his stroller at home and at school. He will continue to walk short distances with his walker (which, by the was is going WONDERFULLY!)
Here are some pictures:
The right wheel has pegs attached so Jack can push with a closed fist or the heel of his hand. He doesn't have to worry about trying to open his right hand and grasp the wheel. This is a great workout for his right side!
I am looking forward to using it. Right now I cannot lift it in and out of the car because I am limited to only lifting Jack when absolutely necessary. So we'll have to be sure Daddy is with us for our outings when we use it.
Jack is doing very well after Botox and the apnea during sedation. He doesn't remember anything (thank God). It's strange because he's never had a bad reaction to sedation in the 20+ times he's been under in his life. Right now I am not even thinking of "next time" but when I do think of it and we're faced with it we're going to be very nervous.
Well as I've rambled Jack's fallen asleep on the sofa watching Sesame Street. I usually take advantage of nap time to eat breakfast and shower...so gotta go!
Sunday, January 14, 2007
A Baby GIRL!!!!!
The ultrasound was amazing. It was very in depth -- taking about an hour total. We met with the Dr. afterwards and he told us our baby girl looks healthy with no anomalies! She's measuring at about 20 weeks gestation and 14 oz. My cervix looks perfect as well. I will return in two weeks for another cervical measurement and will continue to go every two weeks for measuring.
Friday, January 12, 2007
Yesterday's Procedure
Oh my. We got to CHOP extremely early (after leaving at 5 am) which was a good thing because we got in to the sedation unit right away vs. last year we waited HOURS. So everything else went quickly too and Dr. D. saw us around 9:00 am for a final consult and he marked the areas and put the EMLA numbing cream on the injection sites. He also watched Jack walk (with hands held) and said he compensates and is able to keep his heals down by doing some crazy thing with his foot. I’ll have to try to explain it later. So then the sedation nurse came in and took our info and they got started with the IV.
Dr. D came back with a student (he was there just to OBSERVE) and the nurse gave Jack the sedation meds versed and fentenal. Jack cried a lot and seemed very angry — but he didn’t flinch one bit when Dr. D. started on his legs. The med student had to leave because he felt faint. Dr. D got both legs done in about 8-10 minutes and Jack suddenly STOPPED BREATHING! He had a horrible apnea episode and his sats dropped into the low 50’s — my heart stopped. He was losing color and turning gray. He was also not swallowing his saliva and not breathing. They did the blow by oxygen and bagged him, suctioned him and he took a breath. Then he was shallow breathing so his sats were up and down. Finally after they kept the oxygen on for a while he stayed up where Dr. D. could finish the injections on Jack’s right arm/hand. Dr. D seemed very upset — and worried through all of this. The meds wear off quick, so Jack “came too” and cried hysterically. The meds didn’t seem to agree with him at all this time with lots of agitation and the breathing difficulties.
We sat for a long time just holding Jack while he cried and he got better as the hour went on. They gave him some IV fluids and he ate a few crackers. When they told us we could go, Jack was crying but totally fine. We went straight to the car and I called the seating clinic and explained we’ll have to reschedule our appointment to pick uo the wheelchair. They were very understanding. Jack did great on the car ride home...just peacefully watched the cars and it only took us an HOUR to get home!!! No traffic at all. I think Jason was heavy on the gas a little too. Jason got us subs and french fries and Jack at like a piggy when we got home. He had a banana (of course), 2 packs peanut butter crackers, french fries and lots to drink. He napped in the afternoon and watched TV with us all evening. When bedtime came I put Jack in bed with me. There was no way I was going to leave him. He slept very well...we all did. This morning he's totally himself and happily eating breakfast.
I cannot believe how scary this was. I had that horrible helpless feeling...JUST LIKE THE NICU. Poor Jack. I am so glad that the next month or so is totally appointment free. I want Jack to just be a kid. It's amazing how much he takes in stride. I am counting my blessings today. I really am.
Dr. D came back with a student (he was there just to OBSERVE) and the nurse gave Jack the sedation meds versed and fentenal. Jack cried a lot and seemed very angry — but he didn’t flinch one bit when Dr. D. started on his legs. The med student had to leave because he felt faint. Dr. D got both legs done in about 8-10 minutes and Jack suddenly STOPPED BREATHING! He had a horrible apnea episode and his sats dropped into the low 50’s — my heart stopped. He was losing color and turning gray. He was also not swallowing his saliva and not breathing. They did the blow by oxygen and bagged him, suctioned him and he took a breath. Then he was shallow breathing so his sats were up and down. Finally after they kept the oxygen on for a while he stayed up where Dr. D. could finish the injections on Jack’s right arm/hand. Dr. D seemed very upset — and worried through all of this. The meds wear off quick, so Jack “came too” and cried hysterically. The meds didn’t seem to agree with him at all this time with lots of agitation and the breathing difficulties.
We sat for a long time just holding Jack while he cried and he got better as the hour went on. They gave him some IV fluids and he ate a few crackers. When they told us we could go, Jack was crying but totally fine. We went straight to the car and I called the seating clinic and explained we’ll have to reschedule our appointment to pick uo the wheelchair. They were very understanding. Jack did great on the car ride home...just peacefully watched the cars and it only took us an HOUR to get home!!! No traffic at all. I think Jason was heavy on the gas a little too. Jason got us subs and french fries and Jack at like a piggy when we got home. He had a banana (of course), 2 packs peanut butter crackers, french fries and lots to drink. He napped in the afternoon and watched TV with us all evening. When bedtime came I put Jack in bed with me. There was no way I was going to leave him. He slept very well...we all did. This morning he's totally himself and happily eating breakfast.
I cannot believe how scary this was. I had that horrible helpless feeling...JUST LIKE THE NICU. Poor Jack. I am so glad that the next month or so is totally appointment free. I want Jack to just be a kid. It's amazing how much he takes in stride. I am counting my blessings today. I really am.
Wednesday, January 10, 2007
Botox Tomorrow...
In all of the rush of the past week -- I totally forgot to mention Jack is going for another round of Botox injections at CHOP tomorrow. We have to be there at 8:30 am -- which means we'll probably have to get up before 4 am -- oh my. Dr. D. will be doing the injections in Jack's right arm and both legs under sedation. Jason is going with us thank GOD! I could not do this one on my own.
I also coordinated picking up Jack's wheelchair on the same day!! I am relieved to know it won't mean a separate trip. We meet with the seating clinic at 1:00 for instructions and then we can take the chair with us. I am forgetting what it even looked like. I believe I ordered blue -- but I now think yellow would have been a better choice! Oh no, it's like buying a car...lol. Seriously, I am equally excited and apprehensive about actually using it. I know it will be a good thing.
Here is the Kuschall Jr:
When you see Jack in it, it really suits him -- just the right amount of support -- I'll get pictures posted hopefully by the weekend. It's rather sporty, don't you think?
Friday is a big day as well -- we have the big exam and ultrasound for the bean! We'll find out if we're having a boy bean or a girl bean! I swear we won't name the bean "Bean" though! lol!
Edited to add:
Jack's ped put him on a ten day supply of Augmenten for the ear infections. She feels the infection will clear up within 10 days. Jack's behavior has improved and I can tell he's feeling better. Thank goodness...poor little man.
I also coordinated picking up Jack's wheelchair on the same day!! I am relieved to know it won't mean a separate trip. We meet with the seating clinic at 1:00 for instructions and then we can take the chair with us. I am forgetting what it even looked like. I believe I ordered blue -- but I now think yellow would have been a better choice! Oh no, it's like buying a car...lol. Seriously, I am equally excited and apprehensive about actually using it. I know it will be a good thing.
Here is the Kuschall Jr:
When you see Jack in it, it really suits him -- just the right amount of support -- I'll get pictures posted hopefully by the weekend. It's rather sporty, don't you think?
Friday is a big day as well -- we have the big exam and ultrasound for the bean! We'll find out if we're having a boy bean or a girl bean! I swear we won't name the bean "Bean" though! lol!
Edited to add:
Jack's ped put him on a ten day supply of Augmenten for the ear infections. She feels the infection will clear up within 10 days. Jack's behavior has improved and I can tell he's feeling better. Thank goodness...poor little man.
Subscribe to:
Posts (Atom)
