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
Monday, May 17, 2010
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!
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