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Monday, February 28, 2011

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 :)

Sunday, February 27, 2011


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!

Saturday, February 26, 2011

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.


Well they sent us to the PICU because they aren't sure what's going on and he needs closer care.  Of course we love and have missed our PICU nurses, but this is not how we wanted to visit them!  A huge thanks to our TCU nurse Jeff for all his hard work and wonderful care of Levi and us today!

To my friend Barb: both of our phones have gone out now so that's why I haven't updated you.  Keep checking here it's the only outlet I have for updates right now ;)

We believe that his shunt is draining too much fluid from his brain.  Although the doctor does not agree with us, he has ordered a CT scan to put our minds at ease and we appreciate that!  Hopefully it will shed some light on the situation!  They are drawing labs right now, are ordering x-rays of his tummy because it is so distended.  We think the crying/drop in heart rate are seizure related because they are the same every time.  At least we are working toward a solution now!  Will keep updated as I know anything.  Please pray for him!

A bit of a concern.....i

Over the past few hours we have been getting a bit concerned about Levi. His heart rate has been falling significantly when he starts crying. They were thinking at first that it was a reaction to the morphine. Not quite sure about that now. They have started Levi back on his IV fluids thinking that he might be a bit dehydrated. His head seems really sunken in to us. Even the sides of his head are starting to show ridges. The back of his head seems really flat. They are trying to pump more fluids back into him, if that doesn't show some improvement in things within an hour, I think I'm really going to push the issue of his shunt draining too much. He is really having issues swallowing, and we have never had that issue before. This just leads me to think that's its a brain issue since we never had an issue with this before. Plus, its been over four hours since his morphine drip. We are just hoping they will get to the bottom of all of this soon.

Should get out on Sunday...

The doctor came in and showed us the results of the CT Scan. His little brain has rebounded very well, and is starting expand back to normal. There was quite a difference from yesterday to today. He is a bit cranky due to the pain he is in, and the doctor did prescribe morphine to help him out. Even though he is in a little pain, he looks much better. He has ate a little bit earlier this morning, but not enough to let us go home today. Hopefully his appetite will come back in full force soon. He will suck on a pacifier and that is always a good sign. Looks like we will have to follow up with another CT scan in a week or so, with a few other follow up appointments over the next month or so, then we will be down to just an annual visit with neurosurgery to check the shunt.


Well the surgery went well.  It's amazing how much smaller his head is already!  The neurosurgeon said that his brain was under 3 times more pressure than they like to see. He has periods where he rests well and periods where he doesn't seem to be comfortable at all.  He has eaten and kept down pedialyte and an ounce of formula, so that is good!  He had a follow up CT scan this morning and we should have the results of that soon, I hope.  If it looks good and he can eat normally we can go home.  For those of you trying to reach us on our cell phones, we forgot our chargers. lol  Please pray that he starts feeling better very soon!

Friday, February 25, 2011

Shunt......Back at Cardinal Glennon

On Tuesday Levi had a CT scan and a visit with the neurosurgeon.  The CT showed that his ventricles have grown considerably, the water in them having pushed his brain into the outer edges of  his head.  We set an appointment for Monday to place a permanent shunt, which will drain the fluid from his brain into his stomach.  Since our appointment Levi has grown progressively more fussy and had periods of being completely inconsolable, which is not at all like his normal disposition. He was also sleeping much more and his head seemed to have grown.  We contacted the neurosurgeon and were instructed to bring him in to be admitted and have the surgery earlier than planned.

Levi is resting comfortably for the most part now and we are waiting for his surgery to be done today.  The doctors tell us that he should feel much better right after the operation and he will be more awake.  I'm excited to see that!

Saturday, February 19, 2011

Pics from Home Sweet Home

 Levi with Ann
 Sleeping in little lambie bouncer
 Going on a visit to Cardinal Glennon
Buttercup looking over my shoulder :)

All Good News!

The visit to Cardinal Glennon yesterday went very well!  Levi checked out well, the ultrasound showed that his ventricles have not grown, and the spinal tap showed that his cell count is normal!  Thank God!

Friday, February 18, 2011

PICC Line is Out!!!

Well the home health nurse, Dana, came out bright and early this morning and pulled Levi's PICC line!!  We can see his whole little leg, and I'm sure that he will be so much more comfy now!  We are getting ready to head out to Cardinal Glennon for a head ultrasound, checkup with the general doctor, and a spinal tap to make sure that the infection is completely gone.  Please join us in praying that the infection is gone, his ventricles are no larger and a shunt will not be necessary!

The past few days Levi has been very cranky and I'm uncertain if it had more to do with his leg that the PICC line was in, or his very gassy belly, or a combination of both.  Hopefully he will be feeling much better now!

Wednesday, February 9, 2011

Cardinal Glennon Visit

On Friday we went back to Cardinal Glennon for an ultrasound of Levi's head to check the size of his ventricles and to follow up with the doctors regarding his picc line and general health.  The visit with the doctor went well.  He is gaining weight and regaining movement of his limbs more and more every day.  In fact, today he was kicking his left leg! Dr. Simmons was able to stop by to see him, and we were glad to see her!  The ultrasound showed that his ventricles were larger so we had to go down to the neurological department so he could be assessed.  The doctor said he is fine, he shows no signs of his brain being under pressure, and the ventricles were most likely larger because the tissue around them are contracted.  We stopped by the TCU and PICU to see our nurses.  It's so rewarding to be able to walk back in there with a much healthier baby, and they are thrilled to see him in such a better condition!  We had lunch in the yummy cafeteria and were so thankful that we were only visiting and no longer living there!  He has another appointment this Friday.

As far as development, his arms are moving about equally now, his right leg moves very well, and his left is getting better every day.  When we left the hospital 2 weeks ago he was eating just over 2 ounces a feeding and now he is up to 4-4 1/2 ounces!  He weighs 7lbs 13oz!  He has grown into and then out of some of his clothing in just this short amount of time!  We are so excited to see him growing and doing well!  Thanks again for all the prayers!  We will keep updates coming!

 Check out his chubby cheeks :)