Monday, January 21, 2013

super brief but updated non the less

I'm here.  Mostly.  I'm mostly sleeping.  They have me on pain meds and muscle relaxers and pain patches.  I can't sit much as it makes me super tired and dizzy.  I spend most of my day laying in bed sleeping, with bits of TV viewing. 
Yesterday my incision was red and I ran a low grade all day.  Today the fever is done.  I meet back with my surgeon on Thursday.
Last week I ended up at the ER.  CT showed CSF collecting along the incision.  They sent me to a pain specialist who changed my meds around.  It's helped.  Not cured but helped.
the family is pretty good.  Adjusting the life.
i know this update is super duper short but honestly it's all I have energy for right now.  I will slowly try to get more detailed updates up over the next few days.

Thursday, January 10, 2013

Recover update

Heather is feeling better this morning  she ate some breakfast. She is sitting up with the help of the hospital bed. Pain and discomfort is still about the same. She also got her catheter out this morning. Doc says pain and discomfort could last a couple of weeks. I'm just happy we finally got it somewhat under control.

Heather has ate well today. She is still in a lot of discomfort. Her neck is super stiff and sore.  Making it very difficult to get around and move. Even the simplest movement is difficult for her at this point. Pt and ot are trying to help her with the mobility portion. They are also trying to get the stiffness and pain more under control. She is still pretty tired all the work they are having her do is exhausting.

Wednesday, January 9, 2013

Day 2 of surgery and recovery

Heather had a rough night. She had a lot of pain nausea and muscle spasms. They have been giving her meds but they aren't working either long enough or well. They also gave her a muscle relaxer to help. She is also on magnesium and they tried her on potassium however it caused her a lot of pain. they will be trying some oral meds when she is less nauseous. Just letting her rest for the day. hoping for a quiet and some positive progress. Waiting for the doc to come by and see what his plans are.  I will update when I know more.
They have given her a muscle relaxer and some linocain patches. She is also trying some apple juice and crackers and if that goes well then they are going to try some pain meds by mouth. The oral meds are supposed to last longer. She is still in a lot Of pain and discomfort. Doc still hasn't made it in yet. The plan is to go to the regular floor if a room opens. Just hoping things get a little more comfortable. She is still really tired so hoping she can get comfortable and get some well needed rest.

8:30 pm
Heather is doing better.they are finally on top of the pain portion of it she was at about 6 or 7 now about a 3 on the pain scale. Nausea is better. She got to sleep abit they only have to check in on her every 4 hours now. Hoping that all goes well and she can get some sleep tonight. She has been able to talk some which has been nice. No surgeon today hopefully he will check In tomorrow. Still a possibility we may get moved out of icu tonight or tomorrow. Thank you all for your thoughts and prayers

Tuesday, January 8, 2013

quick update

Heather went back to surgery. After surgery we will be going to ICU for recovery. They poked her three times for IV but they finally got it.They will be putting another IV when she is sleeping. They also will be giving her some hydrocortison for her adrenial insuffiency. will update  when i know more.

They started the surgery about 45 minutes ago. she is doing very well vitals are good. they made the incision to remove the bone to get to the brain. Anesthesiologist is very happ with how she is doing. 
they said that the time between now and my first post was getting her preped . 

They are sewing up her incision. All went well very minimum blood loss and vitals were good. They don't have any icu beds available. They are hoping to have one soon. there are some paitients that are moving from the floor. They are moving her to a recovery as soon as they finish closing. They will have a critical nurse with her. We are currently waiting for the doctor to come and talk to us. Should be within the next hour or so.

Doc just came she did very well they removed part of the skull and part of the 1st cervical vertebrae. They put a patch on the dera.She will be moved to recovery for awhile and then to the icu. He says not much to worry about just have to keep an eye on the incision. Make sure that there is no fluid build up. That can happens over the next couple of weeks.other than that they will be keeping an eye on pain management. 

She is having some nausea and the nurse. Isnt allowing anyone to visit right now. They say she won't know who I am. Giving them an hour more. Before I push somemore.

She is sleeping now. They have given her meds for the nausea. No visitors yet. They are continuing to keep me posted. I got to see her from a very far distance. So wish I could just hold her hand. This isn't easy but what u gonna do. Can only push so much. Before its not helpful. No icu beds available yet.worse case she could be in recover overnight 

Finally got to go back. She is super tired I'm sure it's the meds. Super sore . Looks like we will have a bed tonight. They are cleaning one as long as nothing critical comes in the room will be ours thank you for all your thoughts and prayers.

Got a room. Still in a lot of pain on the head and neck. She is dry and nauseas. They have given her some more meds. Hopefully they will help her sleep. Will update more tomorrow. Goodnight  to all of u and thank you for your thoughts and prayers.

800th post being my last before surgery

We will be leaving for the hospital in 1 1/2 hrs.  Check in is at 9:30 and surgery is scheduled for 11:30.  My husband will update facebook and the blog as best as he can.
I can't believe that my 800th post is my last post before brain surgery.  Wow.
I will be back when I can.
don't forget to check out the post below for meal train info.

Sunday, January 6, 2013

Nerves and Anxiety

My parents got here this afternoon.  My moms room is set up and she has begun unpacking.  My dad will be here at least a week and my mom around 8 wks.
I did my last grocery trip.  I cleaned house a bit.  I made my final to-do list. 
My neurosurgery is in less than 38hrs. 
Tomorrow Eli and I get lab work in the morning.  Ari has elimination clinc.  I meet with the neuro-opthamologist to check my intracranial pressure, and I spend some time with my family.
My nerves have fully kicked in.  I'm fidgetty and anxious and feel like crap.  I want to go to bed and sleep until my surgery AND I want to stay awake the whole time spending as much time as possible with my family.
I just want this to all be over with, all be a distant memory. 
Right now this all seems larger than life and scary and unimaginably hard.  I long for the day where things settle and life calms down.  Where we can breath easily, not constantly worrying about the next thing. 
I will do my best to get a blog up tomorrow as well.
Bob will post updates as he has them.

Here is the mealtrain link for those wanting to help out with meals.
You can also send gift cards etc to the address listed. 
Lastly you can make a direct donation thru paypal to help go towards meals to
I thank you and so does my family!

Friday, January 4, 2013


I don't even know where to start honestly.  So much is happening.  Like I said on facebook ny brain is in overdrive and my heart and soul are crushed.
Wednesday I met with the geneticist.  He is concerned that I have increased intracranial pressure.  He has called the neurosurgeon and spoken with him and I will be having special testing on Monday to check the intracranial pressure.  He wants to do some more testing and also wants to take over Eli's case.  He asked me to bring Eli in on Friday, as soon as he was discharged.
So Eli was admitted Wednesday afternoon.  He had his loading dose of IV Keppra that evening and his regular doses started Thursday morning.  He did pretty good.  He was discharged this morning.
We headed straight to genetics.  The geneticist is running further testing on Eli as he believes there is still a piece of the puzzle missing.  He's also concerned as Eli's RBC has been consistently dropping, his RBC are enlarged, his hemoglobin was lower,  his Iron is low, and his protein is low.  He's also worried about his hormone levels.  He wants to run a decent chunk of labs, but right now we can't take that much blood at once.  So we are going to have to slowly draw all of them.  At one point reading thru the recent labs, he said "heck we can't take blood, it looks like we might need to give blood."
Like everyone else he's concerned about Eli's intestines and how well they don't appear to be holding up.  We are having to slowly but surely switch things over and all these issues coming up today are pushing us in a direction that we aren't ready to go.
After we talked Eli for awhile he turned back to me.  He says that I have Mito and that he strongly suspects that I have an adrenal insufficiency as well.  He is speaking further with my surgeon and they will be following mito precautions as well as treating me for an adrenal insufficiency during my surgery next week.  They will also be doing the testing for the adrenal issues next week, to verify completely and get a full plan in place.
Ultimately he advises that we do some testing on the kids. Jace has CVS and Ben has autism.  Both of these can fall under Mito.
His current immediate concerns are getting thru my surgery next week and my recovery as well as Eli and the immediate issues I listed above.
I'm overwhelmed and exhuasted.  I've spent almost 5 hrs this week alone talking to the geneticist.  This isn't counting Eli's 3 days inpatient.
My brain is trying to process it all but my inner being is in such a tailspin that it's all so jumbled.
My household focus today will shift into family time.  My goal is to spend the next few days at home with the kids as a family.  My brain surgery is days away and I'm NOT ready.  I don't know how my family is feeling as we haven't had much time to talk, but I know they are scared, and frustrated and angry and so many other emotions.
Please keep me in your thoughts as I go into my surgery and recovery.  Please keep Eli in your thoughts as every day my little warrior battles thru so many issues.  Please also keep Bob and my kids in your thoughts as this is all so much for them.
This is so much for us all.
Next week we have been asked what we need.  Meals are always appreciated.  Babysitting.  housecleaning.  helping kids with homework.  taking the kids out play ball, or to a movie.  sitting with bob at the hospital.  you name it and it would be helpful.  My parents will be here on Sunday.  My dad will stay until I'm home, my mom will stay for my recovery.  Beyond that we honestly don't know what we need.  Until we know how the surgery and first few days of recovery go we don't have alot of info.  The first few days I will be in the Neuro ICU so visitors are very limited.  Please call or text Bob before coming up.
Bob will update as much as he can.  Always feel free to text, call, or email.

thank you and love to all!

Wednesday, January 2, 2013

busy busy

Today will be a Loooong day!
This morning I have my first appt with genetics.  Then I have my PAT appt and testing to go over anesthesia and everything for my surgery.
Then this afternoon Eli will be admitted and tonight he will get a loading dose of IV Keppra.  He will be inpatient for atleast 48 hrs to get it permanently switched over to IV and to get his levels up.
I will update soon.