This is Halloween...Halloween...Halloween

We had a great time "Trunk-n-Treating" at Nanny and Poppa's church.  Natalie also got to hand out some candy to the other kids.  But Superbaby just couldn't keep up with the pace.

 

 

Last Update

Well, today I had to stick my sweet little boy with a needle.  I had nightmares about it all night.  I dreamed that I didn't wait for the nurses and went ahead and stuck him without cleaning anything.  I was so upset that I could have caused an infection.  

There is such a strict process to go by.  I was terrified that I would do it all wrong and cause Eliah to get an infection.  And an infection on the main line to his heart is serious.

But, all seemed to go well at the doctor.  I followed "most" of the rules from memory.  I was able to put numbing cream on Eliah's chest before I stuck him.  I was shaking so bad.  And I couldn't believe how hard I had to push the needle in.  It was difficult to puncture the port and push all the way to the back.  But the little bugger never flinched or felt a thing.  He thought I was just doing "mommy" stuff.  

He seems to be regaining all the muscle in his neck too.  He is almost able to keep his head up for extended periods.  I'm so proud.

Love to all,
Goodnight

HOME

Home at last!!!!!! My little man seems so different to me. One week definitely makes a difference. Anyway, Kelley and Eliah came home today, and so far, all is well. Eliah has been fussy, then playful, then hungry. Typical baby stuff.

I went to the hospital today to practice putting the needle in the port (on a dummy doll). Very intense with sterilization. And starting Monday, I will be doing it for real. I will head to the Hematologist for them to supervise me. Then, we will have home health come out every day next week to help me give the clotting factor.

Eliah is still on 5 seizure meds, of which they will be weaning off little by little. But his EEG yesterday showed no seizures. So, we think we are pretty much in the clear.

As far as development goes, he is really trying to use his neck muscles, which is good. I think/hope it's just a matter of working out a little to build them up again. He has also started running marathons. Those legs go a mile an hour. He seems to have so much fun when he's wiggling. Maybe soon he will be ready for an exersaucer ....or solid food. Yikes!

But thank you all so much for the support, prayers and generosity. We have been so blessed to have friends and family that care so much.

LOVE TO ALL!!!!!!!!

Tuesday Morning Update

So far, so good!  Eliah's CT scan showed significant progress... he is reabsorbing the blood from his most recent head bleed.  We'll have to continue to monitor him (via CT scans and EEGs), but hopefully a lot of that can be done with office visits as opposed to at the hospital.  The doctors are now starting to talk about us going home... possibly later this week or early next week.  Ann and I have to learn how to prepare his medications as well as how to put needles in his port / maintain his port.  We're also going to have to learn CPR before we leave here, which is fine by me.  I don't like blue babies!

Ann and Natalie are still sick.  I think Natalie is getting better, but Ann seems to have just caught what she had.  Boy I can't *wait* for them to get better!!!!!  Nanny and Poppa have been a great big help, and I definitley could not have hung in here by myself without them coming by to relieve me each day.  Some nights have been sleepless, and they let me take a nap during the day.  And some days they let me shower, eat, and get some work done.  All in all, I think we're all ready for all of this to be over, y'all.

Saturday Pictures

Here are some pictures to brighten up your day!!!!!!!

Little Mr. Fussy-Pants has been... well... fussy.  Although we are getting some good smiles and laughs from him, I think his fussy gears are starting to re-engage now that he is feeling better.  We still have long long nights.  Not nearly as exciting, but still long.  Not that I'm complaining.  I'd much rather him be fussy than blue.

We will be seeing the doctors over the next few days and Eliah will be getting more tests in order to monitor his improvement.

We'll let you know as we find out things, but the updates may not come as often.

Natalie has such a scratchy voice.  We thought she wouldn't be able to talk... or at least not want to with a sore throat.  Unfortunately for us, she thinks her scratchiness is extremely funny to hear... so she won't stop talking.  I never thought she'd be able to more than she usually does, but I think I was wrong.

Mr. Fussy is asking for me again.  Probably only another wet diaper.  For the 10th time this hour.

- Kelley

Saturday Morning...........

NO SEIZURE ACTIVITY!!!!!!!!!!  =  NO SURGERY!!!!!!!!!!!!!!

WOOHOO!!!!!!

THANK YOU FOR ALL THE PRAYERS!!!!!

Ann's Update Friday evening....

Isn't my husband wonderful for keeping you all updated? I am now back at the hospital and lovin on my little boy. Nanny is taking care of Natalie for the time being. By the way, Natalie doesn't act sick at all. She's wild.

Anyway, Genetics called today and said that Eliah tested negative for CDG. That is what I thought he might have. To us, that is WONDERFUL news. CDG is a progressive disorder, and we definitely do not want that.

Since the surgery is up in the air, please send your thoughts and prayers that he doesn't have any seizure activity tonight. I am really having doubts about this surgery.

Thanks to everyone for thinking about us and keeping up with our story!

Friday Evening

Ok, the surgery is on hold for right now.  We are still scheduled for 10:15am tomorrow, but his EEG has shown *NO* signs of seizures today!  The tech said he wasn't showing several of the "bad" signals that he has up until now, and that some of the "good" things they like to see have increased in quantity.  We're going to play it by ear and make the decision right before he's scheduled to go.  They're going to continue the EEG and see what it says for tonight, wish us luck!

If we do not have the surgery tomorrow, we may still need it in the future, only time will tell.  There is some combination of drugs and healing that has caused the seizures to stop, but we're not sure which one is playing the more important role right now.  If we don't have surgery, they will slowly start to wean him off the drugs while monitoring him closely to see what goes on.  That should tell us how much the drugs have to do with this new turn of events.  If he starts seizing again, we know it was mostly the drugs... and we'll have to re-evaluate things.  If he doesn't seize as we wean him off the drugs, we know he's healing.  They'll also be doing more CT (and possibly MRI) scans to help determine this.

Included in this update are two pictures.  The first was from when we had just gotten here.  The second (with the teddy bear) was from a few minutes ago.

We'll write tomorrow when we can.

- Kelley

Thursday Morning

A few more smiles are included with this update.  He seems to be smiling more and more these days... I think more than he did before we even came to the hospital.

I talked with the neurosurgeon this morning.  It looks like surgery will be performed Saturday.  They will burr out a hole about the size of a half-dollar.  They should be able to get all the liquid blood they see... and will try to get any gelled blood (no promises).  Also, we were told it is likely his seizures will get worse for a few days after.  When they take out the blood irritation, they will be replacing it with another irritant: air.  Air irritates the brain, too... but it does get reabsorbed a lot faster than blood.  Hopefully, after 2 or 3 days, any air that gets in there should be gone.  And, of course, they say there is no guarantee that removing the blood will solve the seizures that he has been having.  It's just a "good chance".  But then, there are never any guarantees with anything, are there?  Once they are done, they will leave the hole in his head.  It should provide an endless supply of jokes later in life.

Ann and Natalie are still at home, and will probably be there until at least tomorrow.

Wednesday Night Update

We moved out of the ICU and back to a normal room today. This gave Ann a chance to straighten up and take home some of our accumulated junk. In the process, I think she may have taken home things I need to get pictures off the camera... so no pics today. But there is a one minute video of him having a good time again. We need all the smiles and laughs we can get.

The word now is that it seems the neurosurgeon wants to do a procedure on Eliah. We can't call it brain surgery, exactly, because he shouldn't be getting to his brain. He wants to drill a small hole in his head, and stick a big needle in to suck out all the blood they can get to. This should reduce the irritation on the brain, which should reduce (if not completely stop) his seizures, which should reduce his blood pressure, etc. A lot of "shoulds"... but I think Ann and I are ready for this next step. We're not sure when this will happen... maybe tomorrow, maybe later this week. But I get the idea that it will most likely be soon. After that, we'll be back in the ICU.

Natalie started running a decently high fever today (over 102), so she's at home with Ann. Ann also seems to have started a fever tonight, so we all hope that they take their medicine and get better by tomorrow... I don't know if I can do this alone! (Well, I know I will if I have to, I just don't WANT to!)

He's pretty fussy right now... I hope we both can get some sleep!

Tuesday Night Update

Unfortunately, we are NOT home.  Sorry for the confusion... the emails you received earlier were all from the LAST time we were in the hospital... about a month or so ago.  For now, we're still here.  Also, please forgive us for the amount of email that has gone out... I think we have now fixed that.  Most of this stuff is new to us, and we are making some mistakes.  Not getting much sleep does nothing but add to this.

So anyway, back to today.  Not too much happened today.  Eliah did not sleep at all last night (and thus, neither did Ann)... so he slept a lot today, while I was on watch.  Which is fine with me.  He did get the feeding tube taken out.  However, he has not eaten hardly anything since then... we hope he does soon.  We don't want him to have to go back on it, if we can help it.  We also changed the needle that goes in his port on his chest.  Ann and I have to learn how to do this, because we will be doing this on a regular basis once we do finally go home.  He also got the EEG put back on his head... it will be there all night and into tomorrow.

About the only excitement we did manage to get today was a talk with the neurologist.  After talking with another neurosurgeon, he now thinks a lot may depend on the results of the EEG tomorrow.  Basically, he said if Eliah were in the same position, but did not have Hemophilia, they would already have performed brain surgery to help remove the blood in his brain.  But the Hemophilia has been a major concern to the neurosurgeons.  I guess it's tricky to work on someone's brain if they can't stop bleeding.  Now, however, Eliah has been getting great big doses of his Factor VIII Hemophilia medicine, which allows his blood to clot like a normal person.  Since his levels are way up and staying there, he should (in theory) be able to have surgery just like anyone else.  Thus, if his EEG overnight shows that he is still having seizures, they will talk to us tomorrow about performing some sort of surgery.  It most likely will involve drilling a small hole in his skull and sticking a needle in to suck the blood out.  And if they do decide to do it, I don't know if it would be tomorrow... or a week or more from now.  We'll find out and let you know.

He has, at least, been giggling and smiling a little more.  Those are the parts of the day we like the best.

- Kelley

Monday update

We have had a good day today, hopefully you could all tell by the video of Eliah laughing. We have been heading in the right direction with medications and he seems to be responding well. He has been taken off oxygen and is able to breath room air. YAY. One less tube/wire to deal with.

The EEG this morning showed that the 5 meds were a good combination. He only had one, minor, 30 second seizure. YAY. He was awake for a long time today and we played and interacted. He was also able to eat from the bottle today. They did not take the feeding tube out though, because he may need it over the course of the night. They plan on giving a couple load doses of medication during the night. The object is to break the cycle of seizures, then we can start backing off the medications.

The doctor came in this morning and said that his Hemoglobin had plummeted over the night. So they took blood for the genetic testing and gave him a blood transfusion. Then, his blood pressure went really high, so they gave him another drug to make him pee, in the hopes of reducing his overall fluid. The kidney ultrasound did not show any problems, so we are back to square one with his blood pressure. It's still just too high to be normal. Today it ran around 150/75, even after the "pee drug".

When I was talking with the Hematologist, he again said that this is not typical of Hemophilia. He also said that if this had been an adult, with this amount of bleeding and seizures, they would be dead. So he has been amazed that Eliah is even around, much less alert and active. He then went on to say that all the doctors believe that there is an underlying issue with Eliah, beyond the Hemophilia. He says that they have exhausted all their resources as to finding out what's going on with him, with the exception of Genetics. He suggested that we go to Emory in Atlanta or Duke in Chapel Hill to see specialists that can search deeper.

The genetic testing should hopefully come back on Friday, but we don't know if they will have answers for us. The Neurologist still wants to do a Spinal Tap to test for other genetic disorders this week. He also wants to do another EEG tomorrow to see if we have completely stopped the seizures. If we have, and all other things go well, we can once again leave the ICU. We have a tentative plan to leave the hospital altogether by Friday or Monday. We still have to learn CPR and how to administer his clotting factor before we leave.

The Neurologist was explaining to us about the calcifications on Eliah's ventricles. It is more likely than not that it is due to a disorder or syndrome. We just have to narrow down what it is. The only other possibility for the calcifications is intra-ventricular bleeding on his brain. However, it's not consistent with the other bleeding, and does not account for the small size of his brain.

We are trying to be very optimistic and realistic at the same time. We hope for a life of normalcy for Eliah, but we are prepared for a high level of care. I believe all the prayers got him through the last week, and we hope that those prayers will get us through many years to come.

Thanks again for keeping us in your thoughts.

Laughing

For those getting this in your email, a short video of Eliah laughing this morning can be found on the blog (http://eliahjames.blogspot.com) here.

Eliah laughing:

A few short videos

Here are a few quick videos from our stay at the hospital over the past 10 days. If you are getting this in your email, the videos below may look like a bunch of garble-dee-gook, or they may not show up at all. If you can't see them, you can always go to http://eliahjames.blogspot.com (click here) and see them there.

Eliah - Seizure activity in the ER


Eliah - Getting hooked up to the EEG (1 of many)


Eliah - Feeding Tube

Sunday's update

Why hasn't anyone told me that my days are messed up?  

Anyway, Sunday's update:

Eliah is resting semi-comfortably now.  He is now without EEG, thank goodness.  And we gave him a bath today.  But he still seems to be in pain.  Because he cannot talk, we have to go by his heart rate and blood pressure to determine his comfort level.  His blood pressure, for his age, should be around 90/50.  Today his blood pressure hung around 169/87.  Much higher than even an adult.  So we really don't know what to do.  

We gave him Ativan to calm him down.  But a lot like his father, Eliah had the opposite reaction to the medicine.  As soon as he got it, he got completely anxious.  So we called the doctor and he approved Morphine again.  We just don't understand why he would still be in pain.  The surgery site should be mostly healed by now.  And the blood on his brain should not be causing so much pain.  The doctor wants to do an ultrasound on his kidneys tomorrow to see if anything is going on there.

The EEG last night showed that Eliah is still having seizures.  He had approximately 30 over the course of the night.  So, they have added a 5th anti-seizure med.  The Neurologist said that we are not yet to this point, but they will be considering putting him into a chemically induced coma so that his brain will calm down.  There is risk involved with waking him up though.  Again, we just don't know what to do.

I doubt it, but there is a possibility we will be getting out of ICU tomorrow.  Eliah has stopped his apnea, and his Factor VIII level (clotting factor in his blood) is WAY above what they expected.  They are just trying to control his seizures at this point.  They will be putting the EEG back on his head in the morning to check for seizures again.  And doing the ultrasound of his kidneys.  Other than that, it's just another day at the hospital.  I'm just glad they're feeding him now.  He seems much lighter to hold now.  It's a good thing I started with a fat baby.  He must have anticipated the need.

As if I need to ask, please keep Eliah in your prayers.  And thanks for all the wonderful comments.  They definitely keep us going.

Quick update Friday:

Eliah had a decent night. He only stopped breathing about 20 times. But we learned not to jump up every time. He eventually starts breathing on his own, without his oxygen level dropping. He has also been on oxygen to help with his breathing.

As far as today goes, he has a low hemoglobin level. Which means he is anemic and will need a blood transfusion in the next couple of hours. We had to do another CT to make sure that there was no new bleeding. They just keep taking so much blood for labs, that he is running low.

Also, he is taking a small break from the EEG. He still had seizures all night. They have upped his medications AGAIN, and they are adding another to the mix. He had about 50+ seizures through the night. We are just trying to override the seizures, while waiting for the inflammation in his brain to settle down. Today's CT did show that some of blood is starting to resolve, so it may be just a matter of days until we can control the seizures.

We are not looking forward to hooking up the EEG again tonight though. The skin on Eliah's head is starting to break down from the electrodes. It's a double-edged sword. We don't want to hurt his skin, but we have to know if he is having seizures.

They will also be putting a feeding tube back in, so he can get some nourishment. The feeding tube will go up his nose, down his throat, through his stomach and into his small intestine. That way, he gets calories, but his stomach will be empty in case they have to intubate him. But we think between the feeding tube and the blood transfusion, he will start feeling a little bit better.

Thank you to everyone that keeps Eliah in your thoughts in prayers. There is no way to repay all the kindness. Please continue to pray.


(Update: no transfusion tonight.  His hemoglobin actually came up a little... so they are going to wait until Monday, when they have to draw a lot of blood, to determine if they will do a transfusion or not.)

Update Thursday night:

Wow. This is not a fun roller coaster. As my wonderful husband said, we are back in ICU. After Eliah's near death experience last night, they did a chest x-ray this morning. And then hooked him up to another EEG. He does this great thing where he goes into a deep sleep, has a seizure and then stops breathing. We have to jump up and stimulate him to breathe again. This has happened about 20-25 times today. They have upped his Phenobarb again. He is taking a huge amount of seizures medications that, again, we are looking for a coma. Nurses are standing by to intubate at a moments notice.

The Neurologist spent about an hour with us today and, as much as I love him, made us feel no better about what's going on. He doesn't know why his seizures keep breaking through. Eliah may be resistant to medications like Kelley is a lot of the time. Anyway, he went over the old CT's with me, as well as the new CT's and the MRI from yesterday. The MRI is so pitiful. There is blood all over the left side of his brain and kind of pooling down at the bottom. Up until this point, the blood was just on the surface of the brain. Now it seems that the blood has entered part of the brain matter (the important stuff). That's the grape sized "something" I was talking about. Except by the time they did the MRI, it was much larger.

The Neurologist said that the darkened area could be a stroke or a blood clot. And it is surrounded by a lot of swelling. A normal brain looks like waves and grooves. The area around the darkened area is all swollen and puffy. This is causing pain and seizures. He told me that if it is a stroke, then the brain around would just liquefy over time, but if it's a blood clot, the swelling may go down and could just be normal tissue again. He is leaning towards blood clot. Me too.

We also met with the Geneticist today. He asked a million questions and listened to my crazy theories. He admitted that he does not know much about Glycoprotein disorders, but he would be happy to test. We will probably start testing on Monday for chromosomal problems, metabolic disorders and Jaeken syndrome (my theory). We should know some answers on Friday. He took me seriously and is interested in learning more about Jaeken syndrome. He wants me to email him with the links to articles citing their connection to Eliah's symptoms. Luckily, I have them all bookmarked, and memorized.

We have no idea when we will get out of the hospital. Eliah's seizures have to stop first. The next step is feeding him. He has not eaten since yesterday. And he fasted most of yesterday for his MRI. I don't think he has even eaten 24oz in the last 60 hours.

After that, it's healing from surgery, trying to wean off meds and trying to get a little normalcy before we can think about heading home. And as much as I feel bad for Natalie, she has been having a great time with Kelley's parents. They have been kind enough to take care of her, bring her to the hospital to visit, and deliver meals to the hospital. We could not be able to do any of this without them.

Well, I think that's all I know for now. As you know, I will try to update as things happen. Please keep praying for my boy!

Update 3

Ok, another quick update.  We're in the ICU now.  Due to the amount of times he's stopped breathing and the amount of seizures, they wanted to move him to a place where he has more people around to monitor him.  He was given Phenobarbital again, and this (as of now) seems to have subdued and sedated him to the point where he might finally be getting rest.  He still is having activity on the EEG, but it's not as big as it was, and it doesn't seem to be breaking through (making him cry / wake up).  His breathing hasn't dipped down, either, since he got the Phenobarb. 

But he can't stay on Phenobarb forever.

More as it comes...

- Kelley

Quick Update 2

We're headed back to ICU...

A Quick Update from Kelley

It's been a very restless night.  When Eliah stopped breathing last night, he was in the middle of a seizure.  His head turned hard to the side, which we think caused pain because he was bumping up against his new port.  That made him cry out... the kind where he opens his mouth in a silent scream, and also holds his breath for a few seconds.  Except he didn't take a breath in.  That was the blue episode, in which about 20 people filled the room after some frantic screams down the hall.  Doctors and nurses from our floor as well as the floor below all managed to make it to our little room.  They had to put the breathing bag on him to get him going again.

Since then, he's been having little "non breathing" episodes about once an hour.  He's trying to sleep, but once he gets to sleep it's as if he either forgets or gets too lazy to breathe.  He gets down to about 1 or 2 breaths a minute, at which point an alarm goes off and we shake him gently.  The machine detects his breathing rate pretty quickly, so he's actually only at this rate for about 10-15 seconds maybe, before we jump up and remind him to please breathe.  It's more like sleep apnea than anything, as far as we can tell and going from what we hear nurses/doctors say.

Other than that, he just got hooked up to another EEG, and the tech said he was seizing from the moment he turned it on.  He's calling the neurologist now.

It's a waiting game.  One that nobody likes to play.

Ann will send a better update when she gets a chance.

- Kelley

PLEASE HELP!!!!!

Eliah is in critical condition right now.  He stopped breathing and completely turned blue for more than a minute.  That was the scariest moment I have ever experienced.  I kept screaming down the hall for help.  All the other mothers ran out of their rooms.  Thank God I had a nurse in the room with me when it happened, or he wouldn't still be here.  

He is having major, seizure-related problems right now.  And they are unable to control them.


PLEASE PRAY!!!!!!!!!!!

Thursday Update

My poor little man. He is in so much pain. He woke up this morning and wasn't even able to cry. His legs were shaking and he was making a screaming face, but no noise came out. His voice is hoarse from having a tube down his throat during the surgery. And he can hardly eat because it pulls on his neck muscles. He has only eaten about 9oz since last night at 6pm. He is just getting his morphine and sleeping.

We were able to get the MRI and MRV done today, but I do not yet know the results. They were looking at a small, grape sized "something" (my technical term) in his brain mass. They said it may be a stroke, blood clot or calcification. So, as you can imagine, I am anxious to hear what they found.

Tomorrow we do another EEG, but I don't foresee any problems with that. Eliah does seem to have seizure activity, but they don't worry unless the episodes last longer than a minute. They will try to gradually wean him off two of the anti-convulsives before we leave.

And we are definitely here until Monday. Ugghh. I have had enough hospital food to last a lifetime. I am down 5lbs since we got here (which is actually good). If we stay here another week, I will probably hit my goal.

The new port is working great. Now, when they come in at 4am to do labs, I don't mind. No sticking, they just attach a tube and go. I am so thankful that he has one now.

But please, please, please pray for Eliah to get some comfort and some food. And pray that Pediatric Surgical Residents (newbies) start to show some compassion at 5:30am and not come in yelling. They just don't get that the children in a Children's Hospital need some sleep.

Surgery Update

THE SURGERY WENT WELL!!!!! Thanks of course to all those prayers!

Eliah went into surgery around 3:30 pm, the surgery lasted approximately 30 minutes, and he was in recovery and back up to the room by 5:30. The surgeon would not let me in to watch, but he did come out right after and told us that Eliah was great. He said that it looks good enough for him to go home tomorrow (even though we know that is not going to be the case).

But he woke up and ate. He seems to be in really good spirits with intermittent pain. We are currently waiting for the nurse to bring his morphine. We may be waiting a while though, the hospital has become extremely busy with patients. There is not a room free.

We will also be taking out the IV in his arm and transferring it to the port. On the outside, the port has just a little needle in it, with an IV catheter. The port itself is made of titanium (we got the good stuff), and we look forward to setting off metal detectors. Here is what it looks like:
http://en.wikipedia.org/wiki/Port-a-Cath

Right now, we will rest and recover. There is a possibility that we will do the MRI & MRV tomorrow, and another EEG at least by Friday. Talking with the Hematologist today, he thinks we will be here through the weekend. But if Eliah does great, we may still go home Friday. Let's hope.

On a side note: I do have some concerns already about reversed development with Eliah. Everything seems to be normal with him, except he has lost the ability to lift his head. He has great arm strength, can turn his head back and forth, and push his head backwards. He is just unable to lift or hold steady. I have been telling doctors for a few days now, but they keep saying that it's due to the meds or just being on his back so much. Today, finally, a doctor acknowledged me. We talked about developmental delay, and that this could be reverse development due to his brain damage. We have a range of possibilities for him. First, the doctors could be right in that it is just meds, being tired or whatever. Second, it's possible that his delay may just be slowed now. He may be on his own schedule to re-learn these things. Thirdly, it is possible that he may never be able to lift his head again, which, in that case, would never crawl or walk. But working with him now is basically like a newborn. We have to hold his head up or it just flops back. We just don't know what to expect yet.

But thanks to EVERYONE for all the prayers and good thoughts. We will keep you all updated as things happen.

Tuesday 2 October 2007
Today has been uneventful.
No trauma on Nanny's part, and another normal day for Eliah.
Normal, consisting of tubes, IV's, needles, and pokes and prods 24 hours a day, and one dose of morphine to lessen his pain this afternoon.

Natalie has spent entirely too much time at the Hospital.
When the buildings came into sight the other day, I asked her if she knew where we were.
She said yes, "that's where Mommy, Daddy and Eliah live."

But she is resourceful, and on schedule wherever she may be.
It was naptime and there was no place for her to lay down in the room.
All of the chairs were occupied by adults, and the bed by Eliah.
We missed her when it became quiet.
She was found fast asleep in Eliah's bouncy chair.
It was a tight fit, but she made it work.

Eliah has been moved into a regular (if there is such a thing for babies) room.
The surgery to put the port in to administer the blood clotting factor he needs every few hours from now on is scheduled for 4pm tomorrow.

David

Ann gave you a preview of Susan's condition, so I will finish it up.
She's getting old and slow.
How else would you trip on an INVISIBLE fence, hit the sidewalk and smash your right knee and scrape your right hand?
I was working in the house when Natalie ran in yelling "NANNY FELL!!"
After I got her up..."I'm fine...just can't walk...that' the only thing wrong", we loaded everybody up, took Natalie to Teeka's so she could watch her, rushed to the Doctor's office to be examined, then rushed across town to have her knee x-rayed before the place closed.
Turns out they could see nothing broken nor cracked.
She is now lying on the couch with her leg elevated and figuring out how she is going to drive and do some more work at Kelley and Ann's house tomorrow without being able to walk.
I see more piggyback work (which is how I moved her around today) in my future.

David

Monday Update

Slow going here.  Eliah had an EEG and a CT scan this morning.  I have not gotten the results back from the CT yet.  But the EEG showed a little bit of questionable activity, so they have upped his medicine again.  

After fasting Eliah for 8 1/2 hours today, the surgeon came in and said, "Yeah, we are not doing the surgery today.  We may be able to get to it by Wednesday or Thursday."  It seems that Eliah's surgery is not urgent and is the first to get bumped when new patients come in.  We will also be here in recovery for 3-5 days after the surgery.  

By the time we get out of here, we will have spent about two weeks in the hospital.  I can only imagine the bill we will get for this.  And the mess of a home-life we will go back to.

They are going to wait to do the MRI until after the surgery, so they can just use his port to administer the sedative.  But they are going to be looking at a questionable area in his brain.  They think it could be a blood clot, stroke or calcification.  We will see.

On a side note:

I feel so badly for Natalie the most during all of this.  She is so used a routine, and this has just messed it all up.  Plus, it we have to rely so much on others to maintain life outside the hospital (ie. getting Natalie to school, feeding the dogs, doing laundry, etc).  And our main source of help, Kelley's mother, has gone and possibly seriously injured herself; in our yard no less!  We will soon see the extent of her injuries and it's affect on how things have been running since we've been in the hospital.

I think things will be pretty quiet here until we have the surgery, so there may not be an update tomorrow.  Please keep up the prayers!