I took Jack to see his neurologist today. Have I mentioned how much I truly appreciate our neuro? The appointment was very informative -- I learn something new every time we go. Jack's Tegretol level was good, but he's having some side effects from the schedule change. His behavior has declined and he's acting out with anger and tears. I hate seeing him this way. Dr. N. said we should see improvement with his behavior soon. If not, we are to call him right away.
We talked and talked and talked and talked...he's a great listener and really good at answering our questions.
***TO BE CONTINUED***
Morgan's wailing and Jack just woke up from his nap. Well, at least I got 5 minutes!!
***LET'S TRY AGAIN***
It's 4:00 am and Jack is awake. Morgan just sleepily downed a bottle and I brewed my first pot of coffee. Today it's Dunkin Donuts brand...MMMM!!
Our plan for Jack's seizure management is to see if the new Tegretol schedule works. If his behavior improves and he has no breakthrough seizures we won't change anything. If he continues to have these undesired side effects or if he has another seizure we will try a different med. He mentioned Trileptal or Keppra.
He related several different patient scenarios from his years practicing medicine. He explained how he works with parents and patients to find a plan that suits them. I am comfortable with this plan. I think it's so important to have a doctor who listens and truly listens. Dr. N. does exactly this. We talked about Jack's seizures and where they are coming from. His EEG shows the activity is coming from his Temporal Lobe -- which is consistent with his brain injury. The type of seizures Jack has are called Complex Partial seizures...two of which generalized into Tonic Clonic seizures. So he's been having the same type of seizure which is important to know because it means the focus hasn't changed and we're not dealing with anything new or different. He explained vomiting before a seizure goes hand and hand with the Temporal Lobe of the brain. Although vomiting is yucky, it's sort of a red flag or warning and if Jack vomits we can be on the lookout for a seizure.
I mentioned how I was not treated kindly by one of his nurses and the expression on his face told me this wasn't the first time he's heard this! He said this much as well. He asked what I would like to do about it. I told him nothing. I am not looking to get anyone fired by filing any sort of official complaint -- I just wanted to make sure he was aware of her behavior. So hopefully he will talk to her. I'd be happy with that.
At one point Dr. N. joked and asked if I had ever considered medical school. It was a resounding NO WAY...lol. I've been asked by other medical professionals if I was a nurse (no), a physician (no), a school teacher (no)...I am "just a mom" and happy to be "just" that.
Tuesday, June 12, 2007
Wednesday, June 06, 2007
ENT Surgery Today
The surgery went well. It was done locally at an outpatient surgery center. It went really fast without complications. Jack was quite upset when he woke from anesthesia, but I don't blame him one bit.
The Dr. said Jack's adenoids were HUGE and made a wide gesture with his hands and they were blocking his eustachian tubes -- this is what we had suspected. There was also a lot of fluid built up behind his eardrum.
What are adenoids?
The adenoids are small pads of tissue found behind the back of the nose above the throat. They cannot be seen by looking in the mouth. Adenoids can become very large and block the eustachian tubes (the tubes from the middle ears to the back of the nose) and cause ear infections. Large adenoids can also block the nasal airway causing your child to breathe through his mouth and snore at night. Adenoids can become infected and carry germs (bacteria).
Why should the adenoids be removed?
Blocked-up nose: Very large adenoids can block the nasal passages. This causes snoring and keeps your child from being able to breathe through his nose. Severe blocking may lead to more serious problems (such as apnea and heart problems). Removing the adenoids lets the child breathe normally through the nose.
Recurring ear infections: Very large adenoids can block the eustachian tubes and lead to ear infections or the failure of ear infections to clear. If a child has surgery to place PE (pressure-equalizing) tubes in the eardrums at the same time the adenoids are taken out, it can help prevent recurring ear infections.
We had a rough night last night! Jack and I went to bed around 9:30 pm (Daddy had "first shift" with Morgan). Jack woke up at 11:30 pm, and 12:30 am and decided it was time to get up
FOR THE DAY at 1:00 am. My poor head hurt so badly -- I needed SLEEP! My "shift" with Morgan usually starts around 2:00 am...I tried without success to get Jack to go back to sleep, so I sent Jason to bed and had both kiddos running me ragged all night long. Jack couldn't have anything to eat 6 hours before surgery so I was happy that he requested breakfast at 2:00 am. What a night. I did dishes and made bottles just to stay awake. Morgan went to sleep after her feedings, but Jack and I were up all night and went straight to surgery this morning. Jason has to work until 10:00 pm this evening at a trade show. Timing is just not on our side this week. Jack napped for a little after we got home, and is now pretty much back to normal -- just a little less spunk than usual.
I have just under 4 hours till I can sleep!!!! YAY!
The Dr. said Jack's adenoids were HUGE and made a wide gesture with his hands and they were blocking his eustachian tubes -- this is what we had suspected. There was also a lot of fluid built up behind his eardrum.
What are adenoids?
The adenoids are small pads of tissue found behind the back of the nose above the throat. They cannot be seen by looking in the mouth. Adenoids can become very large and block the eustachian tubes (the tubes from the middle ears to the back of the nose) and cause ear infections. Large adenoids can also block the nasal airway causing your child to breathe through his mouth and snore at night. Adenoids can become infected and carry germs (bacteria).
Why should the adenoids be removed?
Blocked-up nose: Very large adenoids can block the nasal passages. This causes snoring and keeps your child from being able to breathe through his nose. Severe blocking may lead to more serious problems (such as apnea and heart problems). Removing the adenoids lets the child breathe normally through the nose.
Recurring ear infections: Very large adenoids can block the eustachian tubes and lead to ear infections or the failure of ear infections to clear. If a child has surgery to place PE (pressure-equalizing) tubes in the eardrums at the same time the adenoids are taken out, it can help prevent recurring ear infections.
We had a rough night last night! Jack and I went to bed around 9:30 pm (Daddy had "first shift" with Morgan). Jack woke up at 11:30 pm, and 12:30 am and decided it was time to get up
FOR THE DAY at 1:00 am. My poor head hurt so badly -- I needed SLEEP! My "shift" with Morgan usually starts around 2:00 am...I tried without success to get Jack to go back to sleep, so I sent Jason to bed and had both kiddos running me ragged all night long. Jack couldn't have anything to eat 6 hours before surgery so I was happy that he requested breakfast at 2:00 am. What a night. I did dishes and made bottles just to stay awake. Morgan went to sleep after her feedings, but Jack and I were up all night and went straight to surgery this morning. Jason has to work until 10:00 pm this evening at a trade show. Timing is just not on our side this week. Jack napped for a little after we got home, and is now pretty much back to normal -- just a little less spunk than usual.
I have just under 4 hours till I can sleep!!!! YAY!
Monday, June 04, 2007
Another Seizure...
Jack had another seizure last night. It was a lot like the last one with the altered personality and repetative/robot like behaviors. He vomited right before and several times after...we gave him diastat about 5 minutes into the siezure. He did not have a fever, he didn't sleep much at all last night, but is out like a light now...probably due to the diastat.
I had Jason fax the following to his neurologist this morning:
Last night Jack had another seizure. He was restless over night, but no other seizures. Please call after you've had the chance to review this note.
9:00 pm -- vomit
9:20 pm -- lip smacking, swallowing hard, repeating "all done" -- he's not there, he won't smile and is staring a lot.
9:25 pm -- diastat (5 mg) given
Observations during this seizure: He could answer questions but very robot-like. No smile or personality. I took a small digital video of me interacting with Jack and asking him questions. No jerking or body movements. He had a slight tremor in his left hand when I asked him to hold the pen. (He does not use his right hand functionally so it's hard to say if it was one sided). His heart was racing.
Diastat seemed to take effect after about 10 minutes,
9:40 pm -- lying on couch with pillow and blanket. Awake, slight drool. Very sedate -- similar to previous post ictal states and reactions to diastat.
10:20 pm -- vomit
10:35 pm -- vomit
10:52 pm -- last vomit
He didn't sleep very well but is resting this morning with no fever and no more vomiting.
Previous seizures:
January 26, 2007 -- started with vomit, big seizure, jerking, turing blue, rapid/erratic breathing, heart racing, very high fever 104. Called 911 and transported to Medical Center ER. He was given diastat in the ambulance. Found out he had pneumonia. Released after about 12 hours of observation. We saw you in the ER this day. We rescheduled his March 29th neurology appointment to March 20th.
March 20, 2007 -- we were on our way to our neurology appointment and Jack vomited in the car. I called your office from my cell phone to cancel the appointment. We got home and around 9:00/9:30 am Jack was on his bed breathing erratically and convulsing. I gave diastat immediately. The seizure stopped instantly and he slept for quite a while. He had vomited and had loose stools. Our pediatrician felt he had the stomach flu. When we rescheduled the neurology appointment the only opening was in July 2007.
May 11, 2007 -- this seizure was a lot like his most recent.
9:15 am -- small vomit
9:30 am -- acting very strange, blank look, still answering questions, but humming repeatedly and tossing his blanket up and down. His heart is racing. Called neurology and spoke to Joanne, asked to have you call me because I thought Jack could be having a seizure.
9:53 am -- normal temperature. He's now picking at the sofa.
10:05 am - teeth grinding. I called his pediatrician at this point and asked if it sounded like a seizure. She said absolutely and told us to go ahead and give him diastat.
10:10 am -- diastat given.
11:00 am -- My husband arrives home from work and we decide to take him to Medical Center's ER. We spent 13 hours in the ER. They find a sinus infection on the CT scan. The Peds resident talks to you on the phone around 8:30 pm. We are discharged at 3:00 am.
Prior to January 2007, Jack had only ever had two or three small starting spells, nothing like what I described above. We are scheduled to see you in the UPC next week on June 12th.
I hate playing phone tag and leaving messages especially after that nasty nurse's call last week. I did call and thankfully got the "nice nurse" and told her to be on the look out for a fax from us. I also breifly described what happened.
I also called his ped and she said let him rest now and call with an update later -- if he seems ill, she'll squeeze us in.
I must go -- but I wanted to ask for your thoughts and prayers...I'll update later this afternoon. Thanks for listening.
*~*~Edited to add*~*~
Here's the update after tons of calls this morning!
Jack is fine, he is not ill and will not need to see the ped. Jack's smiling, laughing, playing, singing and eating/drinking as usual. The neuro called back and we went over the notes I sent. I highly suggest sending notes before a phone call -- it helped keep my poor brain organized! He said it looks like Jack is having a seizure right around an hour after his meds are given. We give meds every 12 hours. He said his levels probably get too low and the dose doesn't have time to take effect. We are changing his meds from 2 times daily to 3 times daily to keep a more steady amount of meds in his system...starting tomorrow. We are to go for labs a week from today, the day before our scheduled neuro appointment.
I am not sending Jack to school tomorrow to try and keep him healthy for his surgery on Wednesday. So he only has one week of school between now and July 9th. Starting on July 9th I am going to have his nurse meet us here at the house and ride the bus with Jack to and from school. I also scheduled her till 5 pm so she can help with Jack for about an hour after school. I thought maybe she could feed him a snack, and perhaps give him a bath (both of which he looooves) and both of which would be a huge help if I had assistance.
I am so tired. I haven't slept in soooo long! I am just relieved that Jack is doing well. I think it's an easy dinner tonight...pasta and sauce maybe?
Thanks for your thoughts. I will keep you posted!
I had Jason fax the following to his neurologist this morning:
Last night Jack had another seizure. He was restless over night, but no other seizures. Please call after you've had the chance to review this note.
9:00 pm -- vomit
9:20 pm -- lip smacking, swallowing hard, repeating "all done" -- he's not there, he won't smile and is staring a lot.
9:25 pm -- diastat (5 mg) given
Observations during this seizure: He could answer questions but very robot-like. No smile or personality. I took a small digital video of me interacting with Jack and asking him questions. No jerking or body movements. He had a slight tremor in his left hand when I asked him to hold the pen. (He does not use his right hand functionally so it's hard to say if it was one sided). His heart was racing.
Diastat seemed to take effect after about 10 minutes,
9:40 pm -- lying on couch with pillow and blanket. Awake, slight drool. Very sedate -- similar to previous post ictal states and reactions to diastat.
10:20 pm -- vomit
10:35 pm -- vomit
10:52 pm -- last vomit
He didn't sleep very well but is resting this morning with no fever and no more vomiting.
Previous seizures:
January 26, 2007 -- started with vomit, big seizure, jerking, turing blue, rapid/erratic breathing, heart racing, very high fever 104. Called 911 and transported to Medical Center ER. He was given diastat in the ambulance. Found out he had pneumonia. Released after about 12 hours of observation. We saw you in the ER this day. We rescheduled his March 29th neurology appointment to March 20th.
March 20, 2007 -- we were on our way to our neurology appointment and Jack vomited in the car. I called your office from my cell phone to cancel the appointment. We got home and around 9:00/9:30 am Jack was on his bed breathing erratically and convulsing. I gave diastat immediately. The seizure stopped instantly and he slept for quite a while. He had vomited and had loose stools. Our pediatrician felt he had the stomach flu. When we rescheduled the neurology appointment the only opening was in July 2007.
May 11, 2007 -- this seizure was a lot like his most recent.
9:15 am -- small vomit
9:30 am -- acting very strange, blank look, still answering questions, but humming repeatedly and tossing his blanket up and down. His heart is racing. Called neurology and spoke to Joanne, asked to have you call me because I thought Jack could be having a seizure.
9:53 am -- normal temperature. He's now picking at the sofa.
10:05 am - teeth grinding. I called his pediatrician at this point and asked if it sounded like a seizure. She said absolutely and told us to go ahead and give him diastat.
10:10 am -- diastat given.
11:00 am -- My husband arrives home from work and we decide to take him to Medical Center's ER. We spent 13 hours in the ER. They find a sinus infection on the CT scan. The Peds resident talks to you on the phone around 8:30 pm. We are discharged at 3:00 am.
Prior to January 2007, Jack had only ever had two or three small starting spells, nothing like what I described above. We are scheduled to see you in the UPC next week on June 12th.
I hate playing phone tag and leaving messages especially after that nasty nurse's call last week. I did call and thankfully got the "nice nurse" and told her to be on the look out for a fax from us. I also breifly described what happened.
I also called his ped and she said let him rest now and call with an update later -- if he seems ill, she'll squeeze us in.
I must go -- but I wanted to ask for your thoughts and prayers...I'll update later this afternoon. Thanks for listening.
*~*~Edited to add*~*~
Here's the update after tons of calls this morning!
Jack is fine, he is not ill and will not need to see the ped. Jack's smiling, laughing, playing, singing and eating/drinking as usual. The neuro called back and we went over the notes I sent. I highly suggest sending notes before a phone call -- it helped keep my poor brain organized! He said it looks like Jack is having a seizure right around an hour after his meds are given. We give meds every 12 hours. He said his levels probably get too low and the dose doesn't have time to take effect. We are changing his meds from 2 times daily to 3 times daily to keep a more steady amount of meds in his system...starting tomorrow. We are to go for labs a week from today, the day before our scheduled neuro appointment.
I am not sending Jack to school tomorrow to try and keep him healthy for his surgery on Wednesday. So he only has one week of school between now and July 9th. Starting on July 9th I am going to have his nurse meet us here at the house and ride the bus with Jack to and from school. I also scheduled her till 5 pm so she can help with Jack for about an hour after school. I thought maybe she could feed him a snack, and perhaps give him a bath (both of which he looooves) and both of which would be a huge help if I had assistance.
I am so tired. I haven't slept in soooo long! I am just relieved that Jack is doing well. I think it's an easy dinner tonight...pasta and sauce maybe?
Thanks for your thoughts. I will keep you posted!
Friday, June 01, 2007
Special Needs Stroller
Jason and I were talking a few weeks ago when we were at the hospital visiting Morgan. We were walking with Jack towards the cafeteria. Jason asked if we could get a special needs stroller. I told him I don't think insurance would pay because we just got the wheelchair. When we're out we use an umbrella stroller. We haven't incorporated the wheelchair into every day life because he still needs a lot of practice on how to manually push himself. He does great at school -- the PT uses a HUGE ball and entices him to wheel down the hall to get the ball. The school has been FABULOUS with using equipment. Jack uses his walker most of the day -- even out on the playground. They are so great about not letting the kids in one piece of equipment for more than 15-20 minutes at a time. It's amazing because there are several kids who aren't walking yet and they tend to each of their needs so well. I am grateful for this.
With all of that being said, we are still using the stroller 100% of the time on outings. When we went to the seating clinic I originally wanted the Maclaren Major -- so I went online and started pricing. I happened to check ebay and found a brand new Maclaran Major for just over $300 compared to the $500-$800 they are being sold for! I used the buy it now feature and it should be here very soon.
I guess I just thought the wheelchair would be our ticket to Jack's freedom. He will get better and the chair is awesome, I just thought it would be easier for him. If he could use it independently there would be no need to get a stroller...but like most things it's going to take time and practice!
I guess I am just looking for reassurance that this kiddo will find independent mobility...and I am trying not to get discouraged because I am SO PROUD of everything he CAN do -- like using his walker and wheeling the best he can in his chair.
With all of that being said, we are still using the stroller 100% of the time on outings. When we went to the seating clinic I originally wanted the Maclaren Major -- so I went online and started pricing. I happened to check ebay and found a brand new Maclaran Major for just over $300 compared to the $500-$800 they are being sold for! I used the buy it now feature and it should be here very soon.
I guess I just thought the wheelchair would be our ticket to Jack's freedom. He will get better and the chair is awesome, I just thought it would be easier for him. If he could use it independently there would be no need to get a stroller...but like most things it's going to take time and practice!
I guess I am just looking for reassurance that this kiddo will find independent mobility...and I am trying not to get discouraged because I am SO PROUD of everything he CAN do -- like using his walker and wheeling the best he can in his chair.
Friday, May 25, 2007
Tired is an understatement...
Whew, I am T-I-R-E-D!
Morgan is doing so well. She's a very easy baby! She eats like clockwork every three hours and downs 2 and 1/2 ounces in minutes flat!
She had her first peds appointment on Friday. She weighed in at 6 lbs, 7 oz! She's over a pound heavier than her birthweight! She was supposed to have the appointment on Thursday -- but after I got her dressed, in the carseat, dressed again (she spit up all over the seat and herself), cleaned the seat, got in the car my battery was dead! I had accidentally left a door slightly open...OOPS! Thank goodness it died in front of my house vs. on the road!! The office was so nice about rescheduling and luckily they had an opening the next day.
Jack's doing very well too. He has his moments -- but he's coping like a real trooper!! He even started going to bed on his own while I am feeding the baby. He lays on the sofa with his Cars blanket, pillow and Baby Tad. He drifts off without me -- a huge accomplishment!! He loves to touch Morgan's soft hair and help give her the binky. He's so cute!
***a little vent***
Jack's neuro's office called n Friday to confirm dosing on a refill I called in. The nurse very condescendingly asked why he was taking his current dose. I told her the neuro ordered it over the phone at our ER visit just under two weeks ago...(as though I'd increase it on my own...UGH) then she said "You'll really need to make it to your appointment in June" when I said "Of course" she said "Well you missed SEVERAL appointments..." Shocked I said we didn't -- we had to reschedule because Jack became ill and the other "missed" appointment was a scheduling error. She was SO RUDE. I told her we are VERY responsible and she basically hung up the phone. So now I feel like our neuro has a bad opinion of us -- even though it was coming from his nurse. I love this neuro and we've always had amazing conversations about Jack's brain and other neuro stuff. I was treated like a dead beat parent and it offended me greatly. I plan on letting the dr know how I was treated. It's hard for me not to hold on to the emotions behind a phone call like this.
***vent over***
Grandma Josie, Morgan, and Jack
Grandma Linda, Morgan, Jack and Daddy
We are settling into a routine and getting used to very little sleep. I am depending on too much coffee but I'll deal with that another time!! Jason went back to work a half day on Wed, and full days Thurs and Fri. My mom has helped tremendously! She took Jack to her house for a few hours and spent some time here with us so I could do things like sit down or use the restroom! lol! It's so much fun though. I am cherishing each moment!
Morgan is doing so well. She's a very easy baby! She eats like clockwork every three hours and downs 2 and 1/2 ounces in minutes flat!
She had her first peds appointment on Friday. She weighed in at 6 lbs, 7 oz! She's over a pound heavier than her birthweight! She was supposed to have the appointment on Thursday -- but after I got her dressed, in the carseat, dressed again (she spit up all over the seat and herself), cleaned the seat, got in the car my battery was dead! I had accidentally left a door slightly open...OOPS! Thank goodness it died in front of my house vs. on the road!! The office was so nice about rescheduling and luckily they had an opening the next day.
Jack's doing very well too. He has his moments -- but he's coping like a real trooper!! He even started going to bed on his own while I am feeding the baby. He lays on the sofa with his Cars blanket, pillow and Baby Tad. He drifts off without me -- a huge accomplishment!! He loves to touch Morgan's soft hair and help give her the binky. He's so cute!
***a little vent***
Jack's neuro's office called n Friday to confirm dosing on a refill I called in. The nurse very condescendingly asked why he was taking his current dose. I told her the neuro ordered it over the phone at our ER visit just under two weeks ago...(as though I'd increase it on my own...UGH) then she said "You'll really need to make it to your appointment in June" when I said "Of course" she said "Well you missed SEVERAL appointments..." Shocked I said we didn't -- we had to reschedule because Jack became ill and the other "missed" appointment was a scheduling error. She was SO RUDE. I told her we are VERY responsible and she basically hung up the phone. So now I feel like our neuro has a bad opinion of us -- even though it was coming from his nurse. I love this neuro and we've always had amazing conversations about Jack's brain and other neuro stuff. I was treated like a dead beat parent and it offended me greatly. I plan on letting the dr know how I was treated. It's hard for me not to hold on to the emotions behind a phone call like this.
***vent over***
Grandma Josie, Morgan, and Jack
Grandma Linda, Morgan, Jack and Daddy
We are settling into a routine and getting used to very little sleep. I am depending on too much coffee but I'll deal with that another time!! Jason went back to work a half day on Wed, and full days Thurs and Fri. My mom has helped tremendously! She took Jack to her house for a few hours and spent some time here with us so I could do things like sit down or use the restroom! lol! It's so much fun though. I am cherishing each moment!
Tuesday, May 22, 2007
Home at last!
Our first night went smoothly! Morgan takes her bottles like a true champ! She hates diaper changes and loves to be rocked. Jason and I took turns on "night shift" and right now she's asleep in her basinet after her 7 am bottle.
Jack LOVES the baby. He especially loves to help give her the binky. He's been very gentle and can't stop smiling at her!
I hope to update more inbetween bottles, burps, diapers and loving up my two kiddos!
Jack LOVES the baby. He especially loves to help give her the binky. He's been very gentle and can't stop smiling at her!
I hope to update more inbetween bottles, burps, diapers and loving up my two kiddos!
Monday, May 21, 2007
It's TODAY!!!!!!
TODAY , TODAY
TODAY!!!!!!!!!!!!!!!!!!!!!!!
SHE'S COMING HOME TODAY!!!!!!!!!!!!!!!!!!!!!
I am SO EXCITED! At first when they called, they said 1-2 more days. My heart sank -- I was disappointed. We had never met her current neonatologist (they switch cases every few weeks) so Jason went in and met with him this morning. Jason told him we are totally comfortable bringing her home today and they are sending us home with some Pregestimil!!
OUR LITTLE GIRL IS COMING HOME TODAY!!!!!!!
We are to go in around 5 pm and they should have her ready to go!
Last night we assembled the double stroller. So Jack and sissy can ride together (sissy facing mommy in her infant seat, and Jack facing front in the "big kid" seat). Our family finally together under one roof! Pinch, me I think I am dreaming!
Well,
I must go -- gotta check everything one last time! I'll update soon!
I must go -- gotta check everything one last time! I'll update soon!
Sunday, May 20, 2007
She's Coming HOME!
Tomorrow, or Tuesday at the LATEST!!!!!!!!!!We're frantically trying to find a store that sells Pregestimil -- I ordered some from drugstore.com and chose overnight delivery -- it's scheduled to arrive on Tuesday. The hospital pharmacy should be able to supply us with some, but it only stays good for 24 hours...let's hope we can find a solution!
They pulled her Central Line and she's on full feeds. I am so ready to have her HOME!! I'll update when we know for sure if she's coming home tomorrow or Tuesday!! She's taking her carseat test in this picture -- which she passed with no problems!
Friday, May 18, 2007
Preschool Graduation...
Yesterday Jack's school held their annual Graduation Program for the kids. They sang The Itsy Bitsy Spider, Old McDonald, Yankee Doodle Dandy, and they did the limbo and sang their Good Bye Song. It was too cute! Jack didn't sing much, but he did get to play the part of the pig (using a hand puppet) in Old McDonald!! -- he ended up throwing the pig, and the audience laughed -- which made him throw the pig several more times...yikes!
They had a little refreshment table set up and everyone snacked on cookies and chips afterwards. Jack showed Grandma Josie and Grand-Pauly the swings and how much he loves them!
Each kid got a certificate at the end. Now he's off for two weeks and will return for the summer session in June!
I can't believe how grown up he's becoming!!
They had a little refreshment table set up and everyone snacked on cookies and chips afterwards. Jack showed Grandma Josie and Grand-Pauly the swings and how much he loves them!
Each kid got a certificate at the end. Now he's off for two weeks and will return for the summer session in June!
I can't believe how grown up he's becoming!!
Thursday, May 17, 2007
Hair Today...Gone Tomorrow
Several days ago before they placed the Central Line, the nurses tried one last time to place an IV in Morgan's scalp. In order to do this they must shave the area free of hair. So Miss Morgan had her very first haircut already at just two weeks old!I had noticed it a few days ago and was sad -- it's a patch about two inches big! I knew it had been done to try to help her and there was no way around it! What I was upset about was not being warned or told it happened -- but again she needed it and I really did understand! Then I noticed something taped to her crib.
It made my heart melt. In all of the rush, some wonderful nurse kept a lock of Morgan's hair and pasted it to a notecard. A precious memento. It truly is the little things like this that make me LOVE nurses!
It'll grow back...and hey, let's face it, it wouldn't be the first time one of my kids got a bad haircut! So, although she's looking a little bit like George Costanza from Seinfeld at the moment -- she's still my gorgeous gal!Tuesday, May 15, 2007
ENT, Neuro, and Morgan Update..
Grandma Josie and I took Jack to his ENT appointment this morning. As we suspected Jack will need tubes placed in his ears. I scheduled the surgery for June 6th. Hopefully this will keep him from getting those nasty infections! The dr. said he'd evaluate the need to remove his adenoids as well. They'll also draw blood to test for allergies -- all while under anesthesia. He said the longest part of the entire procedure is the blood draw -- so it really only takes several minutes to complete. It will be done locally at an outpatient surgery center.
The neuro's office called with an appointment for June. I took it and will start writing out my questions now. We're also scheduled to see the same neuro in the CP clinic in July and I plan on keeping that appointment too...so for now things are good in neuro land.
Jack's feeling much better and will return to school tomorrow! They have their Spring Graduation program on Thursday -- I can't wait!!
Morgan is doing great!! She's up to 15 cc's for the next 2 feedings, then they'll go to 20 cc's. She's taking it all by bottle. She weighs 5 lbs, 14 oz! She hasn't had any stools (I asked hoping they were not abnormal/runny, etc.). Can't wait to see her adorible little face!
So that's it for today :)
The neuro's office called with an appointment for June. I took it and will start writing out my questions now. We're also scheduled to see the same neuro in the CP clinic in July and I plan on keeping that appointment too...so for now things are good in neuro land.
Jack's feeling much better and will return to school tomorrow! They have their Spring Graduation program on Thursday -- I can't wait!!
Morgan is doing great!! She's up to 15 cc's for the next 2 feedings, then they'll go to 20 cc's. She's taking it all by bottle. She weighs 5 lbs, 14 oz! She hasn't had any stools (I asked hoping they were not abnormal/runny, etc.). Can't wait to see her adorible little face!
So that's it for today :)
Monday, May 14, 2007
Good News!
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Morgan's xray looked good so they ordered her feeds to start this afternoon. They'll be starting her with 10 ML of Pregestimil infant formula every 3 hours.
They stopped her antibiotics and her central line is working well!
They stopped her antibiotics and her central line is working well!
Please keep your fingers crossed!!!!!!!!!
***Edited to add***
***Edited to add***
I haven't heard back from the Neurologist's office about today's appointment. Seeing as they close in less than an hour, I doubt we'll get an appointment today. I will be calling first thing tomorrow morning.
Sunday, May 13, 2007
The NICU Called....
A nurse practitioner from the NICU called about 20 minutes ago and nearly gave me a heart attack. Morgan is FINE.....but they've exhausted all of her peripheral IV locations (hands, arms, feet, and scalp) so they called a pediatric surgeon to place a central venous line in her femoral artery (in her groin area). She will get the rest of her antibiotics and TPN through the central venous line. They still plan on starting her feeds tomorrow, but they start so slowly (I believe 3-5 ml every 4 hours) and of course that's not enough to hydrate or feed her with so this is why they had to do the procedure. I gave consent over the phone. I totally understood.
They will be giving her something for the pain and discomfort and the actual procedure takes just a few minutes. My nerves are fried -- so any phone call from the hospital is going to make me worry a little. Once I knew what she was calling about I felt better. I am so glad it wasn't bad news about her NEC or anything else for that matter.
We visited her this afternoon and she had a little Mothers' Day card made for me with her little foot print...just like I got from Jack in 2003!
We had a lot of housework and yardwork to catch up on so we've been going, going, going since this morning. Jack is back to himself with only a stuffy nose. He'll be seeing his neurologist tomorrow at some point and I believe my mom is going to come along to help me lift him as well as check in on Morgan while we're at the hospital.
I hope all the moms out there had a wonderful Mothers' Day!
They will be giving her something for the pain and discomfort and the actual procedure takes just a few minutes. My nerves are fried -- so any phone call from the hospital is going to make me worry a little. Once I knew what she was calling about I felt better. I am so glad it wasn't bad news about her NEC or anything else for that matter.
We visited her this afternoon and she had a little Mothers' Day card made for me with her little foot print...just like I got from Jack in 2003!
We had a lot of housework and yardwork to catch up on so we've been going, going, going since this morning. Jack is back to himself with only a stuffy nose. He'll be seeing his neurologist tomorrow at some point and I believe my mom is going to come along to help me lift him as well as check in on Morgan while we're at the hospital.
I hope all the moms out there had a wonderful Mothers' Day!
Saturday, May 12, 2007
I HATE SEIZURES!!!!!!!!!!!!!
We spent 13 hours in the ER with Jack yesterday.
Friday morning Jack woke up early -- he was happy and playing...ate breakfast and when I went to put him down for a nap at 9:15 am he vomited a bit. This put my radar up a little -- so we went back out to the living room. He started acting really strange. He was not himself. His personality seemed altered. He was rocking and humming and smacking his lips. I could still get his attention but could not get him to smile or laugh. He was answering my questions but would repeat the answer over and over. He started tossing his blanket over and over...I put him on the sofa and he started picking at the sofa over and over again. His heart was racing and he was hyper and seemed so off and far away. Then he started grinding his teeth.
In the middle of all of this I called Jason and told him I thought Jack was about to have a seizure. When I described everything to him and he heard him humming he said he sounded off and it definitely sounded like seizure activity to him. I hung up with Jason and called the neuro's office. He wasn't in and would only be able to return my call in the afternoon. I then called the pediatrician and asked if I should give Jack Diastat based on the suspected seizure activity. She said Jack IS having a seizure and I should give him Diastat immediately. So almost 45 minutes after everything started I gave him the meds. He didn't stop the behavior until about 10 minutes after I gave him the meds. I asked Jason if he could come home from work and he was able to.
I had also called my mom and she got there right when Jack was coming out of the seizure. He looked at her and knew who she was, but didn't laugh or smile like he usually does. He didn't sleep like he did last time, but he was definitely post-itcal and sedated from the meds.
When Jason got home my mom left and Jack was still about the same as before. We weren't comfortable with his neurological state so we decided to go to the ER at the med center. We grabbed our things and took a "just in case" bucket thankfully because Jack vomited on the way there.
We waited in the triage area for almost 3 hours -- they were PACKED FULL! When we were taken back Jack was given an IV right away and we realized he was also running a temperature.
We were in the Trauma area in a bed in the hallway. We saw so many terrible sights and a lot of people and young kids were coming off of the Life Lion and Medivac helicopters. I NEVER want to see sights like that again. All I can say is please, please wear your seatbelts, motorcycle helmets, and gear up your kids when they ride bikes or skateboards or anything else with wheels.
They did blood work and tried to get a urine sample but they couldn't get any -- even with a syringe -- POOR GUY! Jack was taken for a CT scan and shunt x-ray series as well as a chest x-ray. The CT scan showed his shunt was in working order and his ventricles were the exact same size as they were on our baseline MRI earlier this year. So a relief -- no shunt issues. The peds resident was VERY nice -- he took a thorough interest in Jack and was probably the best resident we've had with in over two years...and we deal with quite a few. He called Jack's neuro and he upped his Tegretol to 8 ml twice daily from 7 ml. He also said he wants to see us Monday in clinic -- and we need to call asap Monday morning.
Jack's white count came back elevated and he was running a temp of 101-102. They told us the CT scan showed a sinus infection. So yet again before he showed ANY signs of being sick he had a seizure. I cannot wait to try and see if there's anything that can be done about this or if this is just going to be our new normal. I certainly hope not.
One thing we did learn is we should give Diastat right away if he has the same type of seizure again. At one point I felt terribly guilty because I let it happen for 45 mintues before I gave him the meds. I really wanted to make sure it was okay which is why I called his dr's first. I didn't know if Diastat should only be given if he has loss of consciousness, convulsions, etc. Now we know.
The ER was crazy and we waited and waited and waited hours between visits from all of the departments. We saw the hours tick by -- luckily Jack was sleeping for most of this. Jason and I were deliriously tired and we were finally discharged at 3 am after getting there at 12 noon.
We were discharged with an RX for antibiotics and instructions to follow up with neurology on Monday. The RX was for Zythromax and I remember reading somewhere that Tegretol and Zythromax do not mix and shouldn't be taken together. When we asked the dr she said it was fine.
This morning we called the pharmacy and the pharmacists said we were absolutely correct. Zythromax will force the Tegretol to stay in the body much longer causing dangerously high levels. I am so glad we didn't take the dr's word for it. You bet the neuro is going to hear about this so no one else in the ER is ever prescribed that combination. Very scary.
We were so torn. We didn't get to see Morgan at all yesterday. Jason called upstairs to the NICU and explained to her nurse what was going on. Having both kids in the hospital is more than we could process last night. Not to mention I just had pretty major abdominal surgery two weeks ago. This is not how it's supposed to be. Our little family HAS to have some better times coming.
I went to see Morgan this afternoon and she was so cute! Up to 5 lbs, 9 oz -- officially over her birthweight! She even looked different since I saw her Thursday night. She no longer has the IV head gear and it's back in her arm. Nothing has changed -- they still plan on starting her feeds slowly on Monday.
When I got there she was crying and her nurse was trying to console her. She's sooooo hungry. I held her and she grabbed my hand and with all of her might shoved the binky in her mouth. She settled and I rocked her to sleep. I couldn't stay long because I hadn't eaten in days and Jack needed me at home too. Daddy's going in this evening to see our girl. Please keep her in your thoughts on Monday!!
Friday morning Jack woke up early -- he was happy and playing...ate breakfast and when I went to put him down for a nap at 9:15 am he vomited a bit. This put my radar up a little -- so we went back out to the living room. He started acting really strange. He was not himself. His personality seemed altered. He was rocking and humming and smacking his lips. I could still get his attention but could not get him to smile or laugh. He was answering my questions but would repeat the answer over and over. He started tossing his blanket over and over...I put him on the sofa and he started picking at the sofa over and over again. His heart was racing and he was hyper and seemed so off and far away. Then he started grinding his teeth.
In the middle of all of this I called Jason and told him I thought Jack was about to have a seizure. When I described everything to him and he heard him humming he said he sounded off and it definitely sounded like seizure activity to him. I hung up with Jason and called the neuro's office. He wasn't in and would only be able to return my call in the afternoon. I then called the pediatrician and asked if I should give Jack Diastat based on the suspected seizure activity. She said Jack IS having a seizure and I should give him Diastat immediately. So almost 45 minutes after everything started I gave him the meds. He didn't stop the behavior until about 10 minutes after I gave him the meds. I asked Jason if he could come home from work and he was able to.
I had also called my mom and she got there right when Jack was coming out of the seizure. He looked at her and knew who she was, but didn't laugh or smile like he usually does. He didn't sleep like he did last time, but he was definitely post-itcal and sedated from the meds.
When Jason got home my mom left and Jack was still about the same as before. We weren't comfortable with his neurological state so we decided to go to the ER at the med center. We grabbed our things and took a "just in case" bucket thankfully because Jack vomited on the way there.
We waited in the triage area for almost 3 hours -- they were PACKED FULL! When we were taken back Jack was given an IV right away and we realized he was also running a temperature.
We were in the Trauma area in a bed in the hallway. We saw so many terrible sights and a lot of people and young kids were coming off of the Life Lion and Medivac helicopters. I NEVER want to see sights like that again. All I can say is please, please wear your seatbelts, motorcycle helmets, and gear up your kids when they ride bikes or skateboards or anything else with wheels.
They did blood work and tried to get a urine sample but they couldn't get any -- even with a syringe -- POOR GUY! Jack was taken for a CT scan and shunt x-ray series as well as a chest x-ray. The CT scan showed his shunt was in working order and his ventricles were the exact same size as they were on our baseline MRI earlier this year. So a relief -- no shunt issues. The peds resident was VERY nice -- he took a thorough interest in Jack and was probably the best resident we've had with in over two years...and we deal with quite a few. He called Jack's neuro and he upped his Tegretol to 8 ml twice daily from 7 ml. He also said he wants to see us Monday in clinic -- and we need to call asap Monday morning.
Jack's white count came back elevated and he was running a temp of 101-102. They told us the CT scan showed a sinus infection. So yet again before he showed ANY signs of being sick he had a seizure. I cannot wait to try and see if there's anything that can be done about this or if this is just going to be our new normal. I certainly hope not.
One thing we did learn is we should give Diastat right away if he has the same type of seizure again. At one point I felt terribly guilty because I let it happen for 45 mintues before I gave him the meds. I really wanted to make sure it was okay which is why I called his dr's first. I didn't know if Diastat should only be given if he has loss of consciousness, convulsions, etc. Now we know.
The ER was crazy and we waited and waited and waited hours between visits from all of the departments. We saw the hours tick by -- luckily Jack was sleeping for most of this. Jason and I were deliriously tired and we were finally discharged at 3 am after getting there at 12 noon.
We were discharged with an RX for antibiotics and instructions to follow up with neurology on Monday. The RX was for Zythromax and I remember reading somewhere that Tegretol and Zythromax do not mix and shouldn't be taken together. When we asked the dr she said it was fine.
This morning we called the pharmacy and the pharmacists said we were absolutely correct. Zythromax will force the Tegretol to stay in the body much longer causing dangerously high levels. I am so glad we didn't take the dr's word for it. You bet the neuro is going to hear about this so no one else in the ER is ever prescribed that combination. Very scary.
We were so torn. We didn't get to see Morgan at all yesterday. Jason called upstairs to the NICU and explained to her nurse what was going on. Having both kids in the hospital is more than we could process last night. Not to mention I just had pretty major abdominal surgery two weeks ago. This is not how it's supposed to be. Our little family HAS to have some better times coming.
I went to see Morgan this afternoon and she was so cute! Up to 5 lbs, 9 oz -- officially over her birthweight! She even looked different since I saw her Thursday night. She no longer has the IV head gear and it's back in her arm. Nothing has changed -- they still plan on starting her feeds slowly on Monday.
When I got there she was crying and her nurse was trying to console her. She's sooooo hungry. I held her and she grabbed my hand and with all of her might shoved the binky in her mouth. She settled and I rocked her to sleep. I couldn't stay long because I hadn't eaten in days and Jack needed me at home too. Daddy's going in this evening to see our girl. Please keep her in your thoughts on Monday!!
Thursday, May 10, 2007
Her Pretty Little Head...
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Yeah -- they went THERE...
Poor Morgan has an IV in her HEAD! They went through both hands, both feet and all that was left was her poor noggin. It's actually not uncommon at all for preemies to end up with IV's in their heads -- Jack was never so fortunate, but I was kind of expecting it since she's on such strong antibiotics...
I had a wonderful visit with Morgan tonight. She's such a beautiful little girl. She slept the entire two hours I held her. I changed her diaper and that's when I snapped this picture. She woke up for a moment and went right back to sleep after I swaddled her again. We rocked and I watched the rain from the NICU window.
Even though we've been through the NICU experience before -- it breaks my heart to leave my sweet little baby night after night, week after week. It's especially hard this time because I can't be there as much as I want, and when I am there I miss Jack too. She'll be home soon -- I know this -- and I keep telling myself to hang on!
Wednesday, May 09, 2007
Miss Mo'
Good afternoon! Here's the recent news on Miss Mo'
Morgan won't have any more xrays unless she would start to show signs of illness due to NEC. They will do one right before they plan on feeding her. She will not start feeds until next week (probably on Monday IF her xray is clear). Her NG tube was removed because she won't be using it for several days yet. It was so nice to see her little face with nothing taped to it last night. She was also moved to an open crib! Big girl stuff!
She's quite a wiggle worm and won't keep her blankets on! She likes to sleep on her side with her legs straight out...like an "L" and every time her nurses wrap her up and walk away she gets herself unwrapped and back to her favorite position!
Our next hurdle is tolerating feeds. I hope she has smooth sailing when the time comes. Thanks so much for thinking of us! Daddy took some pictures tonight -- when he gets them online I will post them!
Speaking of Daddy's photos -- we got daddy a new camera for his birthday. Well, actually daddy picked it out and even went to the store to get it...but I have a good excuse for not being able to shop! He's taken some really good shots! I know he won't mind me sharing some with you:
Morgan won't have any more xrays unless she would start to show signs of illness due to NEC. They will do one right before they plan on feeding her. She will not start feeds until next week (probably on Monday IF her xray is clear). Her NG tube was removed because she won't be using it for several days yet. It was so nice to see her little face with nothing taped to it last night. She was also moved to an open crib! Big girl stuff!
She's quite a wiggle worm and won't keep her blankets on! She likes to sleep on her side with her legs straight out...like an "L" and every time her nurses wrap her up and walk away she gets herself unwrapped and back to her favorite position!
Our next hurdle is tolerating feeds. I hope she has smooth sailing when the time comes. Thanks so much for thinking of us! Daddy took some pictures tonight -- when he gets them online I will post them!
Speaking of Daddy's photos -- we got daddy a new camera for his birthday. Well, actually daddy picked it out and even went to the store to get it...but I have a good excuse for not being able to shop! He's taken some really good shots! I know he won't mind me sharing some with you:
Monday, May 07, 2007
NEC Update
I just wanted to give a quick update on Morgan...
She's stable and is doing well clinically. She's maintaining her temperature, her sats are 100%, heart rate is good and her belly feels good too.
She has stage 1 NEC -- which is mild and this morning's xray showed improvement. She will start feeds (very slowly) in about a week from today (Monday). Hopefully she'll tolerate them well with no setbacks and be totally healed.
They are removing her NG/Suction tubes and she'll be tube free for the week. This will let air back into her tummy and abdominal area.
She gets angry because she wants to eat...her binky is her best friend right now. Daddy visited before work this morning and Shannon was able to drive Jack and I this afternoon and I got to see her shortly while they walked around the 7th floor.
I spoke to her attending and he said he feels she will do well...it was caught early thanks to a VERY observant nurse. She looks good clinically and is active and looks healthy. He said if she were getting worse her condition would have deteriorated by now. He said NEC can be nasty and sometimes fatal, but again Morgan's case was treated so quickly and we are so thankful.
I am still having moments of sheer panic -- thinking what ifs, and holding my breath praying for her tummy to heal totally and completely. She's a sweet, sweet baby and I can't wait until she can join us at home.
She's stable and is doing well clinically. She's maintaining her temperature, her sats are 100%, heart rate is good and her belly feels good too.
She has stage 1 NEC -- which is mild and this morning's xray showed improvement. She will start feeds (very slowly) in about a week from today (Monday). Hopefully she'll tolerate them well with no setbacks and be totally healed.
They are removing her NG/Suction tubes and she'll be tube free for the week. This will let air back into her tummy and abdominal area.
She gets angry because she wants to eat...her binky is her best friend right now. Daddy visited before work this morning and Shannon was able to drive Jack and I this afternoon and I got to see her shortly while they walked around the 7th floor.
I spoke to her attending and he said he feels she will do well...it was caught early thanks to a VERY observant nurse. She looks good clinically and is active and looks healthy. He said if she were getting worse her condition would have deteriorated by now. He said NEC can be nasty and sometimes fatal, but again Morgan's case was treated so quickly and we are so thankful.
I am still having moments of sheer panic -- thinking what ifs, and holding my breath praying for her tummy to heal totally and completely. She's a sweet, sweet baby and I can't wait until she can join us at home.
Saturday, May 05, 2007
A Setback for Morgan
This morning we got a phone call from the Neonatologist. She said Morgan had some blood in her stools so they did an abdominal x-ray and found that she has NEC. It was caught EXTREMELY early so this is a good thing. They are stopping her feeds for 7 days and have her on antibiotics. They will do frequent abdominal x-rays and keep her tummy deflated so she's not feeling hunger pains or discomfort from the acids. She reassured us that it was caught very early and they have her back in the NICU for close observation.
As some of us know NEC can be very serious. My heart skipped several beats when Jason said what it was. I can't believe she has it. She was supposed to be a feeder and grower!
We're heading up there right after Jack's nap. I will keep you posted. Please keep Miss Morgan in your thoughts and prayers.
PS -- before all of this she had been taking more than half of her bottles!! Last night I fed her at 9 pm and she was wide awake and making googly eyes at us Sooooo cute!
As some of us know NEC can be very serious. My heart skipped several beats when Jason said what it was. I can't believe she has it. She was supposed to be a feeder and grower!
We're heading up there right after Jack's nap. I will keep you posted. Please keep Miss Morgan in your thoughts and prayers.
PS -- before all of this she had been taking more than half of her bottles!! Last night I fed her at 9 pm and she was wide awake and making googly eyes at us Sooooo cute!
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