Tuesday, March 31, 2009

Tired

So I just picked up Emily, and she and I are at home. I tucked her into bed, and then called Mike to check on Jude. It seems it's normally Mike that comes home with Em, but this time it's me. I am the one working right now so I need to try to make it tomorrow. Jude is more important, but he will have a day of tests tomorrow. I know Mike will accompany him to every test. The results should be ready whenever I would be arriving from work. I know my baby is in good hands, but it still hurts not having he or his dad here tonight.

So my boss asked why we didn't go to the hospital closer to our house. I don't believe I addressed that before, but the reasoning was the hospital didn't want to take Jude. They said his case could be severe, and they didn't have the means to properly care for him. They wanted us to take him to a place that had a pediatric ER, and honestly I am glad we did. Dallas Med city was again on top of their game, and did an amazing job today.

So this is what our update is. The doctor believes that Jude is waking up from the "medicine and seizure haze" he has been in since he was 3 months. Therefore, he is starting to feel things that he has never recognized as "pain" before. They believe he has a serious case of acid reflux that has left his throat raw, and therefore he doesn't want to eat. So they gave Jude some prevacid, and soon after he ate almost 7 ounces!!! They also believe he is having break through seizures that present as jerks vs the violent ones we are used to. His heart rate is getting over 190 when he is experiencing these spams. They are obviously painful because when he jerks he screams and screams to the point we have to blow in his face to get him to breathe. They don't think he truly experienced the pain of the seizures before, it was just simply uncomfortable. They also now believe his feet swelling was just a result of the IV fluids. I was able to calm Jude several times today, and whenever I left the room he began to cry. Mike noticed he was a mama's boy today. He fell asleep on me at one point, and I worked at calming him when the jerking motions jarred him awake.

So tomorrow they will be performing ANOTHER EEG looking at the current seizure episodes, and then completing a swallow study looking for aspiration. If he does aspirate his liquids, we are hoping they can just thicken his formula because feeding tubes are a scary term to me. Jude has never had a problem eating so for once we are expecting a decent result from a test. Also, the doctor said he believes the depakote results far out weight the depakote side effects. Therefore, they are starting him back on the depakote twice a day, and are monitoring him closely. The doctor is right that the seizures are gone except the spasms (the jerking motions) which is amazing. Also Jude is more cognitive. In fact Jude arrived at the ER extremely dehydrated, and sick, but kept smiling at the nurses. A nurse said to Mike, "Oh he is so cute.. look at him smile". Mike goes, "huh, he doesn't smile??" and looked over to see a huge grin, and snapped a pic with his phone.

So overall we feel we have made progress, have a plan, and are a little more relaxed. When I got to the hospital the doctor was concerned Jude looked a little "yellow", and then his feet swelled. I feared the worst ... liver failure from the Depakote. I was so relieved to hear it may be something we can fix! We would still love prayers.

So I will be calling to check on Jude's tests a million times tomorrow. I will then leave work, grab Em, and go to the hospital for the remainder of the night tomorrow. I have Em in my bed tonight, and will snuggle close with her to let he know how much I love her. Then tomorrow I will snuggle with Jude.

Good night all.

Ps. Mike just called and said Jude just puked all over him at the hospital. POOR GUYS, neither one of them have clothes. I just heard a nice nurse offer to go wash Mike's shirt, and gave him a gown. I guess he is getting a first hand account of moms being puked on. I think he gets dad of the year award.

3 comments:

Bird said...

It's late, but I'm still checking in on you guys before I go to bed. . . reflux is soooo common with CP kids and it's especially bad when they're sick in any way. When you get him home you have to try Slippery Elm--it works a million times better than Prevacid.

I'm sorry that Jude is so jarred by all these new sensations, but hopefully this is a step in the right direction.

Like you, my husband has been at work for so much b/c we need that insurance! Charlie had brain surgery and all the grandparents were there, but not dad b/c we need him to work so we can have insurance. It's tough, but that's the way life is!

Praying for you guys!

jocalyn said...

We're praying for you guys! Justin's out of town, and he called early this morning to find out how Jude was doing. I rushed to the computer to find out! Thanks for keeping us updated. Tell Mike to hang in there too. Welcome back to the world, Jude!

Kitty said...

I've been following you long before Jude was born.I admire your strength and determination.Love has done wonders for Jude and I hope the doctors can make all your lives a bit easier! Keep on doing what your doing!