Friday, April 16, 2010
So we had our appointment with Jackson's neurosurgeon today. He said that Jackson does have a tethered spinal cord, however it's not severe. That does not mean that he doesn't need surgery. Jackson will need surgery within the next two or three months. He let us know that Jackson will be in surgery for two hours and then be in the hospital for two days after surgery. He'll have a two to three inch scar on his back. I'm so relieved to finally know what's going on with him. We feel so blessed that it's not as bad as it could be and that our crazy pedi (who turns out is a genius) found it so early. Jackson will gain all his bladder control and bowel control back pretty quickly and will not have to worry about this happening again or losing control and function of his legs.
His doctor said that the fluid in his spine would more than likely go away or stay the same once he has surgery so it should NOT be a problem.
We will still need to see a urologist about his kidney being abnormal in shape and size but I'm not too worried about that. (He has two and only needs one, right?)
For those of you who don't know, he will probably need some cosmetic surgery in the next few years on his head and face and has a deveated septum which will probably need surgery also (i don't know when)
Next week Jackson will have two root canals done. I'm beginning to think that his pedi was right and that Jackson's LITTLE body just didn't form all the way in my belly.
Thank you for all your fasting and prayers. We feel so blessed to have such wonderful family and friends.
His doctor said that the fluid in his spine would more than likely go away or stay the same once he has surgery so it should NOT be a problem.
We will still need to see a urologist about his kidney being abnormal in shape and size but I'm not too worried about that. (He has two and only needs one, right?)
For those of you who don't know, he will probably need some cosmetic surgery in the next few years on his head and face and has a deveated septum which will probably need surgery also (i don't know when)
Next week Jackson will have two root canals done. I'm beginning to think that his pedi was right and that Jackson's LITTLE body just didn't form all the way in my belly.
Thank you for all your fasting and prayers. We feel so blessed to have such wonderful family and friends.
Today is Jackson's Pre-op. I'm going to meet with his surgeon and see if Jackson's still on for tomorrow's surgery. I'm a little concerned, because he had a sinus infection that we're not sure is gone or not. He's been through two rounds of anti-biotics, but his pedi can't tell if it's gone or not. The only way we knew he had one is because it showed up on his MRI. I'll see what the doctor says.
The doctor said everything went well. He fixed the problem with his spinal cord and he should be back to normal in a week. Just no trampoline for four weeks:( That will be hard to enforce.
Makayla and Isaac went to visit Jackson last night and Bella and Jessica came and visited yesterday during the day.
Jackson had to lay flat for 24 hours. That was the most difficult part of the after surgery experience. He was so mad at me mostly for making him lay flat. He took a few good swipes and kicks at me. Of course mom gets all the anger and all the loves.
I'll let Jeremy blog everything. He does such a great job at telling the stories of our family. He's able to add detail and interest where I'm just trying to spell everything correctly and use as few words as possible.
Makayla and Isaac went to visit Jackson last night and Bella and Jessica came and visited yesterday during the day.
Jackson had to lay flat for 24 hours. That was the most difficult part of the after surgery experience. He was so mad at me mostly for making him lay flat. He took a few good swipes and kicks at me. Of course mom gets all the anger and all the loves.
I'll let Jeremy blog everything. He does such a great job at telling the stories of our family. He's able to add detail and interest where I'm just trying to spell everything correctly and use as few words as possible.
O.K.
Jeremy mentioned that I should go ahead and write a little about my experiences at the hospital.
Jeremy and I were both able to be at the hospital when Jackson went into surgery and when he came out. We weren't sure we'd both be there until they moved his surgery back a few hours. (Isaac also got a fever the night before, Jessica watched him for us because we couldn't send him to school and we both really wanted to be there. I felt really bad leaving Jessica with our sick kid, but it really meant a lot to us) I was so glad to have Jeremy there. While Jackson was coming out of anesthesia, he totally freaked out. Well he was doing fine- until he saw me and then he went crazy. It was really scary because they wouldn't let him be held, sit up or anything. So comforting him was a lot harder than his other surgeries. After Jeremy and I held him down and the nurses pumped him full of meds, I layed down with him and half-held him as much as I could. The next few hours were hard because he wanted to be held and we couldn't. He kept trying to rip his IV's and cords out. He also kept yelling to go home and yelling at everyone not to touch him.
Jeremy went home to get the kids to bed and see them off to school the next morning while I stayed the night with Jackson. I was so afraid for Jeremy to leave me alone. I layed in bed with him most of the night to keep him laying down and stop him from ripping anything out. It was a long hard night, but the next morning everything got a lot easier. Jeremy brought up a Kilan movie (the only t.v. he'll watch) and Bella (his very best friend) came to visit, both really helped raise his little spirits. He kind of had a big attitude so it was nice to have my cute sweet Jackson back.
His most favorite thing at the hospital was the playroom. He loves bowling. He loves bowling with my kitchen cups, on my cell phone, and at the bowling alley. The playroom had a Wii and of course our little bowling protege loved bowling on the Wii. It's all he wanted to do there. When it came time to go home, he didn't want to leave the Wii or the wheel chair. He really wanted to take them both home with us:)
Jeremy spent the last night with Jackson and I stayed at home with the older kids. When I was leaving to pick the kids up from school the nurses had him standing up and taking steps. I was so sad to leave and miss all that.
Now we're home and he's a little timid to do anything. He keeps wanting to do things but is afraid to stand and walk. I don't know what we'll do for the next 6 days. I'm scared to let him do anything also.
See the Popsicle I'm enjoying in recovery? They kept trying to give Jackson Popsicles in recovery while he was totally out of control. There wasn't anywhere to put it so I got to enjoy a Popsicle while trying to hold him down real good. I just thought it was funny, when they kept trying to give it to him and he was so ticked off.
Jeremy mentioned that I should go ahead and write a little about my experiences at the hospital.
Jeremy and I were both able to be at the hospital when Jackson went into surgery and when he came out. We weren't sure we'd both be there until they moved his surgery back a few hours. (Isaac also got a fever the night before, Jessica watched him for us because we couldn't send him to school and we both really wanted to be there. I felt really bad leaving Jessica with our sick kid, but it really meant a lot to us) I was so glad to have Jeremy there. While Jackson was coming out of anesthesia, he totally freaked out. Well he was doing fine- until he saw me and then he went crazy. It was really scary because they wouldn't let him be held, sit up or anything. So comforting him was a lot harder than his other surgeries. After Jeremy and I held him down and the nurses pumped him full of meds, I layed down with him and half-held him as much as I could. The next few hours were hard because he wanted to be held and we couldn't. He kept trying to rip his IV's and cords out. He also kept yelling to go home and yelling at everyone not to touch him.
Jeremy went home to get the kids to bed and see them off to school the next morning while I stayed the night with Jackson. I was so afraid for Jeremy to leave me alone. I layed in bed with him most of the night to keep him laying down and stop him from ripping anything out. It was a long hard night, but the next morning everything got a lot easier. Jeremy brought up a Kilan movie (the only t.v. he'll watch) and Bella (his very best friend) came to visit, both really helped raise his little spirits. He kind of had a big attitude so it was nice to have my cute sweet Jackson back.
His most favorite thing at the hospital was the playroom. He loves bowling. He loves bowling with my kitchen cups, on my cell phone, and at the bowling alley. The playroom had a Wii and of course our little bowling protege loved bowling on the Wii. It's all he wanted to do there. When it came time to go home, he didn't want to leave the Wii or the wheel chair. He really wanted to take them both home with us:)
Jeremy spent the last night with Jackson and I stayed at home with the older kids. When I was leaving to pick the kids up from school the nurses had him standing up and taking steps. I was so sad to leave and miss all that.
Now we're home and he's a little timid to do anything. He keeps wanting to do things but is afraid to stand and walk. I don't know what we'll do for the next 6 days. I'm scared to let him do anything also.
See the Popsicle I'm enjoying in recovery? They kept trying to give Jackson Popsicles in recovery while he was totally out of control. There wasn't anywhere to put it so I got to enjoy a Popsicle while trying to hold him down real good. I just thought it was funny, when they kept trying to give it to him and he was so ticked off.
Thursday, August 14, 2008
Jackson's mellon will never be closed again
I will never say bye to this blog. I don't think, I'll ever run out of things to comment about.
Yesterday, I cut Jackson's hair. So, last night I was rubbing his head and hair cut, when I noticed a pretty big soft spot. Like the ones we noticed last year, only smaller. I woke up this morning thinking it was just a nightmare. But later realized that it wasn't. So Jeremy and I called Dr Barcello and left a message on his nurses answering machine. Which is so frustrating. We always have to wait so long to hear back from people. It probably only feels like a long time because were anxious to talk to someone.
Today I keep feeling like all the worries we thought were over are all rushing back in surreal familiarity. I know whatever it is that the Lord has helped us through everything and he will continue to help us deal.
I love ya'all
Wednesday, November 28, 2007
I had to go the bathroom and he was mad I put him in his crib:)
He was O.K. by the time I came back. All of his toys were thrown out of the crib in protest
there was a fish tank on our walk that he really liked
I woke him from his nap so we could leave the hospital. What a mean mom. I think he forgave me when he realized we were leaving!!!
He was O.K. by the time I came back. All of his toys were thrown out of the crib in protest
there was a fish tank on our walk that he really liked
I woke him from his nap so we could leave the hospital. What a mean mom. I think he forgave me when he realized we were leaving!!!
Jacksons cool ride from PICU to the regular room
Jackson and Mom blowing kisses as they take aride around halls of the hospital
Jackson right eye is swollen here. The day before his left eye was swollen.
Jackson had fun driving this around the halls of the hospital
everytime we past an elevator he tried to make an escape
Jackson and Mom blowing kisses as they take aride around halls of the hospital
Jackson right eye is swollen here. The day before his left eye was swollen.
Jackson had fun driving this around the halls of the hospital
everytime we past an elevator he tried to make an escape
Thursday, November 22, 2007
We're Home!!!!
Everyone is finally home!!!!!!!!!!!!! Within minutes he was running around and playing soccer. Chauntel took great pictures on the video/digital camera we just got, and as soon as I can figure out how to download them onto the computer, we'll put a lot more on.
The stitches look great. If you look at the previous posts from his last surgery, the stitches last time look so much bigger. We'll post more later when we can figure out how.
Everyone's Home!!!!! YEAH!!!!!!!!!!!!!!!
Wednesday, November 21, 2007
Out of ICU
Jackson is now out of ICU and in a regular room. His doctor, Dr. Barcelo, came to see him today and said that he should be able to go home tomorrow (Thanksgiving day) at around 10. We are so excited to hear that news. Because I couldn't go to the hospital to relieve Chauntel, our home teacher who sits with Chauntel and the kids and helps entertain Jackson during sacrament mtg. went to relieve her so she could take a break and get something to eat. She was worried b/c Jackson had not let her put him down since waking up from recovery. She tried, but he would fuss so much that she just held him - for over 24 hours straight! She was worried how he would act for Br. Treanor, but she came back to find him asleep in Br. Treanors arms. They had been playing and Br. Treanor had him in the wagon pulling him around the 6th floor. Jackson really likes him alot. I was glad she was able to get a break.
We're excited for Jackson and Mom to come home tomorrow. I'm feeling better, but the kids have been coughing so bad for the last 2 days and now Isaac tonight has a 100* temp. tonight at bedtime. I've been giving them the cough/congestion meds that their doctor said every 4 hrs., but it doesn't seem to be doing anything for both of them. It's going to be a feat to keep the boys away from each other. I really don't want Jackson sick on top of all this. The hospital was probably the safest place for Chauntel these last few days.
We're excited for Jackson and Mom to come home tomorrow. I'm feeling better, but the kids have been coughing so bad for the last 2 days and now Isaac tonight has a 100* temp. tonight at bedtime. I've been giving them the cough/congestion meds that their doctor said every 4 hrs., but it doesn't seem to be doing anything for both of them. It's going to be a feat to keep the boys away from each other. I really don't want Jackson sick on top of all this. The hospital was probably the safest place for Chauntel these last few days.
Still in ICU
I just got to talk to Mom and Jackson this morning. Jackson was a lot more talkative today and I could understand him better also. The kids thought it was neat to talk to him too.
this is makayla. I got to talk to jackson and mommy today. I miss them.
Chauntel said that Jackson is still in ICU, but that a nurse mentioned getting him a regular room today while another nurse said that it's not unheard of to release him from ICU. It was hard to talk for more than 4 minutes because Jackson still will not let Chauntel put him down in the bed, and he kept either hanging up the phone, or getting so mad that he couldn't hold the phone. Chauntel had to hold him all night and sleep with him. This will either be a major bonding experience for them both, or they won't speak until his baptism after he gets out. I'll try a little later again to call.
The kids have been outstanding these last 2 days. Thank you for all the prayers on our behalf. I have learned how to make oatmeal from the box of oats, found out that there's a Pizza Hut right down the street that I didn't know about, and that Isaac still doesn't understand how skid marks get on his underwear. The look of surprise on his face upon finding them is like, "I can't believe this. There they are again!"
Hopefully I'll have more soon. We'll have to wait for them to get home to post pictures and video.
Jeremy
Tuesday, November 20, 2007
Surgery Update
I just got off the phone with Chauntel and she's in an ICU room with Jackson and he's doing great. The kids and I got to talk to him and he told me about his owie the best he could. The surgeon said that he removed 3 large plates that had not dissolved; one on his forehead, one on top of his head, and one on his left temple - exactly where all of his swelling spots were. If you guys remember from his previous surgery (you can look at previous posts on this blog), he has the drains in his head again and Chauntel says that his stitches look great also. She told me that the plates had left some ridges on his skull, so they sanded them down to smooth it out. She said that there's a possibility of him actually coming home tomorrow.
The kids and I are getting along OK. I feel so much better today but still can't go for much more than 15 minutes w/o taking a break. The kids really need to get out - maybe I can tomorrow.
The kids and I are getting along OK. I feel so much better today but still can't go for much more than 15 minutes w/o taking a break. The kids really need to get out - maybe I can tomorrow.
Round 2
Chauntel's last post said that we're finished with this blog. Again, life lets you know more and more everyday how much you don't know when you really really think you do know. As I said on our other blog, I just sent Chauntel and the baby off to the hospital for his 2nd surgery today. The doctor feels like it will be an easy procedure, but without knowing exactly what is causing the swelling, I still feel a degree of anxiousness. They said that they will go ahead and take out any of the plates and screws that may have not dissolved yet from his surgery in December, because their best guess is that it's the hardware that may be left in his head that is causing the swelling. There shouldn't be much left since it was supposed to be completely dissolved in a year they said initially. Chauntel will call me throughout the day to let me know when he goes in to surgery, and when he comes out and so forth. You guys can call the house or either of our cell phones as you wish. You may want to call Grandma Schultz though for the most up to the minute info. For whatever reason I feel like that will be the order information - Grandma then me. Love ya Grandma.
We'll keep everyone posted on how he's doing.
Jeremy
Sunday, July 15, 2007
No More Helmet
Even though I'm done with this blog, I thought it fitting to do one last post. About mid-june I took Jackson's helmet off the the next week we saw the doctors and they agreed that he was done. I'm so glad to not have to clean it anymore and to not have to drive to Houston anymore. We are so thankful for the way everything has gone. It wasn't perfect but I'm not sure it could have been anymore perfect (if that makes sense)