-
Our Life...
- Jul 13, 2009 at 2:41 AM
- By
- Comments (4) Total Views (154) Everyone can see this journal post.
So I realized I haven't written an update in far too long, and a lot has been going on in the last few months. Since April Tucker has been in and out of the hospital so many times I've lost track...he started the ketogenic diet to help stop the seizures, and after a month it wasn't helping so we've stopped it. He had his MRI on May 1st and the results were anything but happy. We have found out that Tucker has substantial brain damage to the right side of his brain, and a sizable amount to his left side (not as much as the right). It confirmed the diagnosis of hydrocephalus (where the ventricles of the brain fill up with cerebrospinal fluid) and microcephaly (which is where the brain doesn't tell the skull to grow). They had told us before we left the NICU they thought he had it, but they didn't know how severely or what was causing it. His right ventricle is severely enlarged, it's filling up to take up the space of the missing brain matter...same on the left, only not as severe. The damage to the back of his right occiptial lobe is so severe that it has actually turned to mush or liquid, and they're concerned about his vision. Tucker's neurologist is really concerned about his cognitive and motor skills, and how those will be affected, and from the way he talks it doesn't seem that he's very confident Tucker will be able to do much. We still have hope though...we have in-home PT set up to start soon, an early interventionist (who is wonderful) and early start for blind babies, who have been awesome in helping get us things to stimulate his vision. He's proved all the doctors wrong so far just by being here...there's no reason to think he won't continue to prove them wrong.
Last Sunday I took Tucker to Children's ER because he was throwing up his G tube feedings, and pedialyte. They admitted us and did a battery of labwork, which showed that he had inflammation somewhere in his body, but they didn't know where. They watched him and continued bloodwork throughout the next few days. One morning they came in to draw his blood and the stress of it sent him into a seizure fit, he had 20 seizures in 10 minutes, they called the resident immediately and started Ativan to try to calm him and stop the seizures...he had a total of 60 in an hour. They didn't stop until after a second dose of Ativan and a loading dose of his seizure med Depocote, which made him a zombie for the rest of the day. The next two days was more of the same, he would start screaming, which would stress him out and send him into a seizure fit. They were so concerned they sent him down for a CAT scan at 4 am and set up a lumbar puncture for the next morning. They were convinced that either his hydrocephalus had gotten worse and was putting pressure on other parts of his brain (which would lead to him needing a shunt placed) or he had meningitis. Luckily, everything came back normal, which left them with the questions of why he was acting this way. Tucker is not a fussy baby, he rarely cries...he's usually smiling and laughing, so to see him screaming as much as he has been has been unbareable. He seems to be getting better, and they think now that he may have had a horrible stomach bug that really hit him harder than most kids. They are however, still very concerned with how many seizures he's still having, so they did a 24 hour video EEG, to see if there is new activity or if the seizures have increased in frequency. They've added a second seizure med and upped the doses on both of them twice to see if it helps. Danny is at the hospital now with him, Tucker and I had a rough night last night and I needed some sleep. He seemed much happier today and not nearly as fussy as he has been.
This baby amazes me...he can go through so much and still have smiles and giggles to share with everyone. All the nurses love him...his big blue eyes and beautiful hair and smile (and believe me he turns on the charm when they're around). There is some good news, tomorrow morning they are going to do an echocardiogram to check to see if his pulmonary hypertension has stayed away, and if it has, they are going to see how he does being off oxygen while he's awake! He's been on 1/2 liter for two days and has been fabulous! I'm keeping my fingers crossed...I would love for him to be oxygen free if he can...I think he'd enjoy the world a lot more...especially swimming! (He's a little fish!) I have more pictures to post...no one will believe how fast this baby grows! (His hair too...we just got it cut and it's already long again!) Anyway, I wanted to update everyone, I had said I would let everyone know the results of his MRI and then I never did, I'm sorry it has taken so long, but it was the hardest thing to hear and I'm still trying to deal with what they've told us. For everyone who follows along with Tucker's story...thank you, we'd be lost without your support! I'll post the new pictures soon. I think we'll be able to go home tomorrow...but it will all depend on the echo. I'll be sure to let you all know!
Last Sunday I took Tucker to Children's ER because he was throwing up his G tube feedings, and pedialyte. They admitted us and did a battery of labwork, which showed that he had inflammation somewhere in his body, but they didn't know where. They watched him and continued bloodwork throughout the next few days. One morning they came in to draw his blood and the stress of it sent him into a seizure fit, he had 20 seizures in 10 minutes, they called the resident immediately and started Ativan to try to calm him and stop the seizures...he had a total of 60 in an hour. They didn't stop until after a second dose of Ativan and a loading dose of his seizure med Depocote, which made him a zombie for the rest of the day. The next two days was more of the same, he would start screaming, which would stress him out and send him into a seizure fit. They were so concerned they sent him down for a CAT scan at 4 am and set up a lumbar puncture for the next morning. They were convinced that either his hydrocephalus had gotten worse and was putting pressure on other parts of his brain (which would lead to him needing a shunt placed) or he had meningitis. Luckily, everything came back normal, which left them with the questions of why he was acting this way. Tucker is not a fussy baby, he rarely cries...he's usually smiling and laughing, so to see him screaming as much as he has been has been unbareable. He seems to be getting better, and they think now that he may have had a horrible stomach bug that really hit him harder than most kids. They are however, still very concerned with how many seizures he's still having, so they did a 24 hour video EEG, to see if there is new activity or if the seizures have increased in frequency. They've added a second seizure med and upped the doses on both of them twice to see if it helps. Danny is at the hospital now with him, Tucker and I had a rough night last night and I needed some sleep. He seemed much happier today and not nearly as fussy as he has been.
This baby amazes me...he can go through so much and still have smiles and giggles to share with everyone. All the nurses love him...his big blue eyes and beautiful hair and smile (and believe me he turns on the charm when they're around). There is some good news, tomorrow morning they are going to do an echocardiogram to check to see if his pulmonary hypertension has stayed away, and if it has, they are going to see how he does being off oxygen while he's awake! He's been on 1/2 liter for two days and has been fabulous! I'm keeping my fingers crossed...I would love for him to be oxygen free if he can...I think he'd enjoy the world a lot more...especially swimming! (He's a little fish!) I have more pictures to post...no one will believe how fast this baby grows! (His hair too...we just got it cut and it's already long again!) Anyway, I wanted to update everyone, I had said I would let everyone know the results of his MRI and then I never did, I'm sorry it has taken so long, but it was the hardest thing to hear and I'm still trying to deal with what they've told us. For everyone who follows along with Tucker's story...thank you, we'd be lost without your support! I'll post the new pictures soon. I think we'll be able to go home tomorrow...but it will all depend on the echo. I'll be sure to let you all know!
Comments:
1-4 of 4 comments
1
Jul. 13, 2009 at 4:50 PM
thank you for posting this I have been wondering about this brave little man I will continue to keep you all in my prayers
Jul. 14, 2009 at 8:54 PM
I stummbled upon your page and am glad I did. I just want to say how strong I think you are and how amazed I am by your little guy. My Son has Spinal Muscular Atrophy and is going through a lot right now too. He is getting ready for his G Tube in the next week or two. I wish you and your family all the blessings in the world. Take care and take one day at a time;)
Jul. 17, 2009 at 11:43 PM
Hello! I have ason with 95% brain damage,hydrocephalus,blindness and many more medical conditions.Please read my page under about me.I would love to answer any questions and help you with your fears.my son is 9 now.You are doing an awesomejob. He is such a cutie.I will keep you in my prayers.
1-4 of 4 comments
1
Want to leave a comment and join the discussion?
Already a member? Click here to log in
Give & Get Advice
-
Do you feel like you're always saying "No" to your kids? Maybe it's time to have a "Yes" day instead.
-
If you're a little (or a lot!) stressed, you'll appreciate these easy tips for sneaking a little relaxation into your day.
-
Want a tasty way to sneak more fruits and veggies into your kids' snacks? Try these healthy muffins!
Advertisement
Wow girl, you have SO much your going through with that sweet lil baby! My heart goes out to you and I will turn all my thoughts and prayers to your little guy. I dont know where you live, but if threres something I can do let me know!
- lvnmygrlz
Message Friend Invite