Catching Up...

Now is the time to catch up on all the info I have not posted this month!  Levi has been very unhappy this month dealing with several issues (extreme gas, constipation, spitting up, and a bad cold with coughing, congestion, etc).  In the last few days he has begun to feel much better and is smiling, looking at his mobile and toys, kicking his little legs, and doing normal baby things.  He will begin seeing a GI specialist next week, and will have follow up appointments with neurosurgery and neurology next month.  The shunt seems to be doing very well!  His hair is getting longer and growing over it so it's not as noticeable as it once was.  Hopefully now we have put the worst behind us and will begin to enjoy a happy baby!

Waiting for Discharge Orders

The neurosurgery resident has been down to see Levi this morning and is pleased with his progress.  He is doing everything they wanted him to do (eating without vomiting, taking meds by mouth, and his med level is in normal range) so I think as far as they are concerned he can go home once the neurosurgeon checks him out.  The neurology doctor (we LOVE her) stopped by to see him and said Dr. Geller will come down later.  I don't think they will be concerned, because he hasn't had any seizures since Saturday, and I'm sure they were caused by the brain surgery/overdraining and low med levels.

Elizabeth was his nurse last night!  She was one of our faves when we were here before and we were so glad to see her!  He's done really well!  He slept great and when he wakes up he's really alert and awake for a long time.  He even fights going back to sleep now!  Such a cutie!  Below I'm posting a cute sleeping pic and a pic of his shunt.  Actually, the pic looks worse than it does in person, but it is larger than I thought!

New pics

 Comfy and Sleeping!

All is Going Well

Levi has done great with his bottles!  He is eating as much as he did at home and keeping everything down.  We are about to try Tylenol through his mouth and probably his seizure meds will be given that way this evening.  If he continues to eat well, take his meds well, and his seizure med levels keep rising, we can go home tomorrow.  He is so much more alert and awake for hours at a time now.  He's so sleepy right now, but every time his little eyes close he jerks them open again. LOL  He doesn't want to miss anything.  We are still in the PICU, but TCU status, the hospital is so full there's no room for us so we are staying here for now.  Patrick and I decided to go out for lunch and had a wonderful time at Maggiano's.  Very delicious and a wonderful atmosphere!  So everything looks good and we should be going home tomorrow!

Moving to TCU

We got discharge orders from the PICU to the TCU this morning. Not quite sure when we will move up, but it should be sometime this morning/early afternoon. Hopefully we will be out of here tomorrow at the latest. When he starts eating normally and keeping it all down, we should have the green light to go home. We are about to feed him his first bottle in a couple of days. Hopefully he will keep it down. They did adjust his shunt yesterday and his little head is looking and feeling much better. His soft spot seems normal now, and not looking like its totally collapsed down. His "bottle instinct" seems to be back. He is begging for food now :)

Pics

I did get to hold Levi!  He was awake and alert!  The neurosurgeon adjusted the shunt and he seems to be doing so much better!  Looks like we will be able to begin bottle feeding in the morning.  We will also most likely be going back to the TCU in the morning.  Thank You Jesus that he is well on the road to recovery!!

 Levi before the surgery.  The life saver looking stickers are for the surgery.

 Levi today.  What a difference 2 days makes!  The difference in his head size is amazing!  He's so cute :)

Better Still...

Levi continues to get better!  He wakes up more and is alert, he has more control over his eyes, and his heart rate has stopped dropping!  The doctors decided to put in a feeding tube that goes to his intestines so they could start him on formula and get his seizure med levels up without worrying about him vomiting.  He's much more comfy since they started the feed, the poor baby was so hungry!  Even though he really tried, he never was able to get anything to come out of the pacifier. LOL  He was rooting for a bottle, which is wonderful, and we will try bottle feeding either tonight or tomorrow morning.  The neurosurgeon decided to adjust the shunt, so hopefully that will make a big difference, too.  I think we will move to TCU in the morning and then on home by Tuesday.  The doctors think that his brain just didn't know how to react going from such high pressure to low pressure in such a short amount of time and was just trying to adjust, accompanied by the facts that his belly was so distended with gas and his med level was low.  Things are definitely looking up!  I've been chilling in the McDonald room for a bit and am now heading down in the hopes of holding the little munchkin!

Doing Better

The nurse said Levi had a night of peaceful rest and few episodes where his heart rate dropped, and even then it did not drop as far.  He is waking up and alert, getting angry when nurses mess with him, and beginning to act more normal.  He is sucking a pacifier again, which is wonderful! His stomach is much smaller than it was yesterday thank God!  The neurosurgery resident said the CT scan showed that his brain had come away from his skull a bit, which is exactly what Patrick had thought was the problem.  The resident is not sure if they will adjust the pressure of the shunt or not, he is checking with the neurosurgeon.  The particular shunt they put in can be changed with magnets, so they don't have to do another surgery to make adjustments.  All in all, he is much better this morning!

Still Don't Know

The tests have come back pretty much normal, so all we know right now is that we don't know.  We are praying it's something simple and once they drain his belly of gas and he gets a good night's sleep he will be on the mend.  Neurosurgery is supposed to see him tomorrow.  I think I will feel better when they physically check him out.  Right now we need prayer that Levi will be okay!  Please pray that the problem will come to light and the Lord will lead the doctors to the answer!

Starting to get somewhere...

The x-rays showed that Levi's belly is full of air so they are sticking a tube down the poor baby to release the gas as we speak.  He is definitely not enjoying it!  The labs showed the level of seizure med in his system is slightly low.  We are waiting for them to read the CT scan to find out about the shunt.  I think soon we will have answers and a solution.