So, the sleep study people called me to schedule julian's follow-up sleep study, the one to see if his tonsil removal improved the Apnea situation.
They were asked by our pediatrician to schedule an appointment in one month's time so that we don't keep him on oxygen if it isn't medically needed.
Guess what date they offered me as my ONLY option?
December 2nd.
The lady actually said, "I'm sorry, you are going to hate me for this, but the only date we have is December 2nd."
Grr.
I had to take that date so "I could get in the system."
I'm confident this will take me about twelve hours to unravel and talk to the right people to help me get a date that isn't crazy.
And I know I shouldn't complain when it is Jules who has to wear cannula and have strangers point at his stickers, etc... but I am really ready to not have a full time job scheduling doctor appointments!!!
Tuesday, May 25, 2010
Monday, May 24, 2010
Doing well
Jules is off all pain meds and is looking pretty good post surgery. Can't wait to weigh him and find out how much he has grown with the tonsils gone.
Keren (his OT) checked him out and noticed his hyper-extension of his neck while eating is gone. That, plus the fact he can breathe with his mouth closed, drink his bottle without pausing to gasp for air, and isn't snoring... all combine to show me that the tonsil surgery was a success. We need the sleep study to confirm it though, so we can get off the oxygen.
I feel like I'm waking up after a very long sleepy and troubling time and am looking forward to spending my time this week cleaning things up around here and getting our lives kickstarted again.
Jules is now free to do many things for the first time. I will be sure to take lots of pictures of all these "firsts" as he experiences the world.
Joy
Keren (his OT) checked him out and noticed his hyper-extension of his neck while eating is gone. That, plus the fact he can breathe with his mouth closed, drink his bottle without pausing to gasp for air, and isn't snoring... all combine to show me that the tonsil surgery was a success. We need the sleep study to confirm it though, so we can get off the oxygen.
I feel like I'm waking up after a very long sleepy and troubling time and am looking forward to spending my time this week cleaning things up around here and getting our lives kickstarted again.
Jules is now free to do many things for the first time. I will be sure to take lots of pictures of all these "firsts" as he experiences the world.
Joy
Wednesday, May 19, 2010
fever
So, Jules has had an on and off again fever. he had it all last night, but it went away this morning. He also vomited on me yesterday, but had no other symptoms.
Tonight, his temp went up again, but then it quickly went back down again.
Scott is in London and tonight is my first night without him here. I am praying that Jules makes it through the night fever-free and in no pain. I am prepared to be up all night, but hoping I won't be.
Since Jules stopped needing oxycodone, he hasn't wanted to eat any solid foods. I'm hoping that as he starts to feel better and doesn't need tylenol, etc... that he will be comfortable enough to swallow solid foods and we can begin working on getting him to eat.
Goodnight,
Joy
Tonight, his temp went up again, but then it quickly went back down again.
Scott is in London and tonight is my first night without him here. I am praying that Jules makes it through the night fever-free and in no pain. I am prepared to be up all night, but hoping I won't be.
Since Jules stopped needing oxycodone, he hasn't wanted to eat any solid foods. I'm hoping that as he starts to feel better and doesn't need tylenol, etc... that he will be comfortable enough to swallow solid foods and we can begin working on getting him to eat.
Goodnight,
Joy
Monday, May 17, 2010
Celebrating!
Jules has been off Oxycodone for 28 hours!
He is getting by on just the tylenol and doing great!
Eating slightly less than when he felt no pain, but recovering so very well.
We are celebrating with a nice dinner tonight and I am so pleased because Scott is leaving for London on Wednesday and I really hoped Jules would be off the Oxycodone by the time Scott left, so that I didn't have the nights of dosing all on my own.
I wasn't very good at it. Once, I pushed the syringe and missed Julian's mouth by a mile. Instead, my aim directed all the bright red oxycodone to scott's face and hair. It would have been funny if Jules hadn't been in so much pain, but I dont' have the best fine motor skills and so I'm very glad I won't have that job while Scott is away.
And I'm very jealous he is going to London.
Joy
He is getting by on just the tylenol and doing great!
Eating slightly less than when he felt no pain, but recovering so very well.
We are celebrating with a nice dinner tonight and I am so pleased because Scott is leaving for London on Wednesday and I really hoped Jules would be off the Oxycodone by the time Scott left, so that I didn't have the nights of dosing all on my own.
I wasn't very good at it. Once, I pushed the syringe and missed Julian's mouth by a mile. Instead, my aim directed all the bright red oxycodone to scott's face and hair. It would have been funny if Jules hadn't been in so much pain, but I dont' have the best fine motor skills and so I'm very glad I won't have that job while Scott is away.
And I'm very jealous he is going to London.
Joy
Saturday, May 15, 2010
Going longer
Today, Jules went 5/6 hours during the day between oxycodone doses, so I think he's in less pain, which is great. He is pretty exhausted though and taking long naps to recover from the surgery.
going to bed now and hoping for a good night sleep with easy dosing times tonight.
Joy
going to bed now and hoping for a good night sleep with easy dosing times tonight.
Joy
Friday, May 14, 2010
Good news
Today, Jules weighed in at 21 pounds 1oz at the pediatrician!
This is a weight gain of 1 pounds in the past two weeks, which means he gained back all he lost with the surgery and then some!
He also grew in length to 30 inches.
Although, he is still not on any growth chart.... he does get to finally have a forward facing car seat saying goodbye to the infant rear-facing carseat he has had for SO long!
We also got the news today that he can start at the Boyer Clinic in their classroom preschool twice-a-week for 2hours each time the first week of June and we are THRILLED for him! This will be his first time ever being exposed to other children and we can't wait to see him grow in this way too.
Right now, we just got him to bed and Scott is at Children's getting more Oxycodone for the little guy. Unfortunately, he continues to be in a fair amount of pain and these nights are brutal.
Last night, after aiming the oxycodone syringe into his cheek and then scott chasing it instantly with a bottle, we held our breath praying he wouldn't vomit up the meds and when it seemed like things were fine, I turned to Scott and noticed blood smears all over his white t-shirt. Julian's nose was bleeding again and we knew we had 5 minutes to stop it or he would go to the ER. We were able to get the bleeding to stop and finally got Jules to bed, but I was up, wired, and anxious for many hours into the morning = (
Hoping for a much better night tonight to go with all the good news we had today,
Joy
This is a weight gain of 1 pounds in the past two weeks, which means he gained back all he lost with the surgery and then some!
He also grew in length to 30 inches.
Although, he is still not on any growth chart.... he does get to finally have a forward facing car seat saying goodbye to the infant rear-facing carseat he has had for SO long!
We also got the news today that he can start at the Boyer Clinic in their classroom preschool twice-a-week for 2hours each time the first week of June and we are THRILLED for him! This will be his first time ever being exposed to other children and we can't wait to see him grow in this way too.
Right now, we just got him to bed and Scott is at Children's getting more Oxycodone for the little guy. Unfortunately, he continues to be in a fair amount of pain and these nights are brutal.
Last night, after aiming the oxycodone syringe into his cheek and then scott chasing it instantly with a bottle, we held our breath praying he wouldn't vomit up the meds and when it seemed like things were fine, I turned to Scott and noticed blood smears all over his white t-shirt. Julian's nose was bleeding again and we knew we had 5 minutes to stop it or he would go to the ER. We were able to get the bleeding to stop and finally got Jules to bed, but I was up, wired, and anxious for many hours into the morning = (
Hoping for a much better night tonight to go with all the good news we had today,
Joy
Thursday, May 13, 2010
Hanging in there
Jules had a little tiny bit more blood today on his nose, but it was dried and not fresh, so we didn't have to go to the ER.
Tomorrow, he goes to the pediatrician for a check up on his weight to see how much he lost by having the surgery. That way we know what ground we need to make up ahead of use and get a sense of how his body is doing with these big changes.
She will also inspect the wounds in his throat and see how he is doing since the surgery. Given the blood coming from his nose, I'm glad we are going to see her tomorrow.
Unfortunately, last night was a disaster where we were pretty much up the whole night. Scott got a cold, Gigi was up with nightmares on the odd hours Jules wasn't up crying for oxycodone and Scott and I are exhausted. Going to bed EARLY tonight.
Goodnight,
Joy
Tomorrow, he goes to the pediatrician for a check up on his weight to see how much he lost by having the surgery. That way we know what ground we need to make up ahead of use and get a sense of how his body is doing with these big changes.
She will also inspect the wounds in his throat and see how he is doing since the surgery. Given the blood coming from his nose, I'm glad we are going to see her tomorrow.
Unfortunately, last night was a disaster where we were pretty much up the whole night. Scott got a cold, Gigi was up with nightmares on the odd hours Jules wasn't up crying for oxycodone and Scott and I are exhausted. Going to bed EARLY tonight.
Goodnight,
Joy
Wednesday, May 12, 2010
not ready to get off oxycodone
Jules had some blood in his nose today, which could be okay if that is all that happens, but could be dangerous if we see more bleeding as it could mean the scabs came off the wounds in his throat and that they are re-opening. In that case, he would need surgery again to fix it.
So, we are watching for any signs of bleeding and are prepared to take him to the ER if we see them. So far, he hasn't had any other worrisome signs.
We tried to extend the time between oxycodone dosing and at about 4 3/4 hours he was in massive pain and it was very sad, so we won't be doing that again for awhile.
Joy
So, we are watching for any signs of bleeding and are prepared to take him to the ER if we see them. So far, he hasn't had any other worrisome signs.
We tried to extend the time between oxycodone dosing and at about 4 3/4 hours he was in massive pain and it was very sad, so we won't be doing that again for awhile.
Joy
Tuesday, May 11, 2010
Great Job Jules!
Jules ate really well today (well drank all his bottles well) and is at his pre-surgery fluid totals. So happy for him!
He went to Children's to meet with a special dermatologist today about his skin growth near the eye. Lots of pictures and measurements were taken. We will come back in August to see if the skin area has expanded. If it has, we will discuss a biopsy and/or removal with a plastic surgeon.
If it is growing, it will need to be removed in a few months.
I feel bad for Jules because he is on track for three surgeries this year before he turns 2 years old!
The tonsils, the skin growth, and the blocked tear ducts (which is scheduled for this summer).
Hopefully, the tonsils will be the most difficult one, so that the easier ones to recover from are in front of him.
He is still needing the oxycodone to get by, so we are keeping it coming every four hours. We moved the meds
schedule so our nights are now 7PM, 11PM, and 3AM.
We are still pretty exhausted from the time in the hospital and the nights, so we took naps to catch up on sleep today and scott is going to go back to work on Thursday.
Joy
He went to Children's to meet with a special dermatologist today about his skin growth near the eye. Lots of pictures and measurements were taken. We will come back in August to see if the skin area has expanded. If it has, we will discuss a biopsy and/or removal with a plastic surgeon.
If it is growing, it will need to be removed in a few months.
I feel bad for Jules because he is on track for three surgeries this year before he turns 2 years old!
The tonsils, the skin growth, and the blocked tear ducts (which is scheduled for this summer).
Hopefully, the tonsils will be the most difficult one, so that the easier ones to recover from are in front of him.
He is still needing the oxycodone to get by, so we are keeping it coming every four hours. We moved the meds
schedule so our nights are now 7PM, 11PM, and 3AM.
We are still pretty exhausted from the time in the hospital and the nights, so we took naps to catch up on sleep today and scott is going to go back to work on Thursday.
Joy
Monday, May 10, 2010
continuing to recover
Jules is doing great!
He drank the same amount today as he was doing before surgery!
Tomorrow, he can start his appetite-stimulant Periactin again and hopefully, start packing on the pounds to recover what he lost during the days of not eating post-surgery.
And soon, we will try weaning him off Oxycodone.
On Tuesday, we are taking him to the dermatologist for a growth near his eye and other than that, we plan to have a pretty tame day at home keeping him stable on his meds and recovering well.
he is on oxygen at night until the next sleep study proves the tonsil removal did the trick taking care of the obstructive apnea.
Goodnight,
Joy
He drank the same amount today as he was doing before surgery!
Tomorrow, he can start his appetite-stimulant Periactin again and hopefully, start packing on the pounds to recover what he lost during the days of not eating post-surgery.
And soon, we will try weaning him off Oxycodone.
On Tuesday, we are taking him to the dermatologist for a growth near his eye and other than that, we plan to have a pretty tame day at home keeping him stable on his meds and recovering well.
he is on oxygen at night until the next sleep study proves the tonsil removal did the trick taking care of the obstructive apnea.
Goodnight,
Joy
Sunday, May 9, 2010
At home
So happy to have Julian home. So happy.
It is so nice to be on the good side of doctor expectations. We can't believe he made it out of the hospital after only two nights. He is such a scrappy little guy.
We are running a mini-hospital here with the waking up every four hours to dose him with oxycodone, etc... and running meds on those 4 hour shifts plus 12 hour shifts for others and oxygen again at night, but our mini-hospital at home is much much more comfortable for all of us than being at Childrens.
We had one vomiting situation that happened tonight, which was traumatic and very painful for Jules. I can't imagine what it would feel like to vomit with an open wound in my throat. But, we finally got the oxycodone in him and he is sleeping now.
Thank you to all for your prayers, good wishes, and positive energy!
Happy Mother's Day,
Joy
It is so nice to be on the good side of doctor expectations. We can't believe he made it out of the hospital after only two nights. He is such a scrappy little guy.
We are running a mini-hospital here with the waking up every four hours to dose him with oxycodone, etc... and running meds on those 4 hour shifts plus 12 hour shifts for others and oxygen again at night, but our mini-hospital at home is much much more comfortable for all of us than being at Childrens.
We had one vomiting situation that happened tonight, which was traumatic and very painful for Jules. I can't imagine what it would feel like to vomit with an open wound in my throat. But, we finally got the oxycodone in him and he is sleeping now.
Thank you to all for your prayers, good wishes, and positive energy!
Happy Mother's Day,
Joy
On our way to discharge!
they are coming to take out his IV and we are waiting for the pharmacy to get us the pain meds for helping him at home!
Doing really well
Jules is doing so well!
He is off the IV meds and tolerating rectal tylenol and oxycodone.
He ate a little pizza!
He is drinking about 1/3 of what he normally eats, but the resident came by to say we may be going home!!!!!!!
Happy mothers day to me!
He is off the IV meds and tolerating rectal tylenol and oxycodone.
He ate a little pizza!
He is drinking about 1/3 of what he normally eats, but the resident came by to say we may be going home!!!!!!!
Happy mothers day to me!
Saturday, May 8, 2010
Recovering
Jules is doing better.
He ate 3 ounces for me in the early afternoon and then another ounce at 4pm, so that's good. And he is heading for his second dose of the iv motrin.
They want to stop the IV pain meds after that and go to tylenol and oxycodone. We aren't sure he will actually take the oxycodone, but we are going to try and if he spits it out -- we will figure something out.
He took a second nap today, which we hope helps him get better.
His color looks good and he played a bit and took a walk.
We are buckling in for what sounds like it might be a tough night when the IV motrin wears off at midnight and they won't let him have more. We are hoping the rectal tylenol and oral oxycodone can help him enough to keep him sleeping and comfortable until the morning.
I can't begin to say how great it is to be 24 hours past the surgery with no intubation!!! It is awesome!
Joy
He ate 3 ounces for me in the early afternoon and then another ounce at 4pm, so that's good. And he is heading for his second dose of the iv motrin.
They want to stop the IV pain meds after that and go to tylenol and oxycodone. We aren't sure he will actually take the oxycodone, but we are going to try and if he spits it out -- we will figure something out.
He took a second nap today, which we hope helps him get better.
His color looks good and he played a bit and took a walk.
We are buckling in for what sounds like it might be a tough night when the IV motrin wears off at midnight and they won't let him have more. We are hoping the rectal tylenol and oral oxycodone can help him enough to keep him sleeping and comfortable until the morning.
I can't begin to say how great it is to be 24 hours past the surgery with no intubation!!! It is awesome!
Joy
Out of the ICU
We made it out of the ICU to the surgical floor.
And we are so delighted to have a private room!
Jules is up on his feet, walking around and the new pain meds thru the
iv are helping him. He took 3 ounces of food for the first time, which is his biggest bottle.
We are so happy to have avoided intubation and so glad to see him smile for the first
time.
We are trying to stay on top of the pain. Our criteria for going home are:
1. Eating/drinking his normal intake of food, which is 5-6 bottles with about 5oz each of food in them.
2. No bleeding
3. No fever
4. Pain controlled
And we have to watch and see his oxygen needs.
Joy
And we are so delighted to have a private room!
Jules is up on his feet, walking around and the new pain meds thru the
iv are helping him. He took 3 ounces of food for the first time, which is his biggest bottle.
We are so happy to have avoided intubation and so glad to see him smile for the first
time.
We are trying to stay on top of the pain. Our criteria for going home are:
1. Eating/drinking his normal intake of food, which is 5-6 bottles with about 5oz each of food in them.
2. No bleeding
3. No fever
4. Pain controlled
And we have to watch and see his oxygen needs.
Joy
Miserable Night
It was a long miserable night with Jules waking up every hour in pain. He had three morphine treatments to help stop his crying and suffering and give him some comfort. He has refused most bottles, taking a total of 1-2 ounces over the past twelve hours. This makes staying on top of the pain very difficult. He spits out all tylenol and oxycodone.
They can't do tylenol through the iv as it doesn't absorb that way in the body. He can't have motrin or anything else because it increases bleeding which is risky after his surgery.
This morning, our brilliant nurse thought of the idea to give him -- Rectal tylenol!!!!
We tried it and are waiting to see how he does.
Hoping to be sent to the surgical floor and hoping to see him start to eat soon.
Just got permission to get him out of the surgical gown and into more comfortable clothes from home.
Joy
They can't do tylenol through the iv as it doesn't absorb that way in the body. He can't have motrin or anything else because it increases bleeding which is risky after his surgery.
This morning, our brilliant nurse thought of the idea to give him -- Rectal tylenol!!!!
We tried it and are waiting to see how he does.
Hoping to be sent to the surgical floor and hoping to see him start to eat soon.
Just got permission to get him out of the surgical gown and into more comfortable clothes from home.
Joy
Friday, May 7, 2010
Resting
Jules does not want to eat, so he had to go on iv fluids and his throat swelled so he went back on oxygen. He is sleeping now and they said the next 14 hours will be the toughest. We are watching and waiting and hoping he rests comfortably and isn't suffering or in too much pain.
getting ready
Jules woke up in a good mood. We fed him his last food for awhile and he has been playing all morning with no idea of what is happening to him today.
Just 2.5 hours until we leave for the hospital.
Joy
Just 2.5 hours until we leave for the hospital.
Joy
Thursday, May 6, 2010
surgery details
Check in is at 11:45am tomorrow.
Jules can't have any food past 5am.
he is going to be a very sad starving little pumpkin tomorrow morning = (
It will be a very long morning leading up to a traumatic afternoon for my little guy.
Joy
Jules can't have any food past 5am.
he is going to be a very sad starving little pumpkin tomorrow morning = (
It will be a very long morning leading up to a traumatic afternoon for my little guy.
Joy
Sunday, May 2, 2010
Some fun in pictures
As a brief departure from the morose...
Starting Passover
Ending Passover (Jules is long asleep)
Waiting for hamentaschen on Purim
Starting Passover
Ending Passover (Jules is long asleep)
Tulip Festival
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