My Fears Come to Life

1:29 PM Edit This 2 Comments »
Monday I was woke up with a phone call that Layla had some blood on the cotton ball in her ear.  I rushed over to get her and my father and I rushed her to the ER.  On the way she started having a small trickle of blood from her ear.  I was terrified that she was going to bleed out!!  All that went through my mind is that the artery tore further.  I have never been so scared in my life!

When we got to the ER the stupid wench at the registration desk didn't want to take us back immediately.  I'm telling her that Layla is bleeding from her carotid artery that had been injured.  She didn't seem to understand.  I was ready to grab my badge out of my purse and go back anyways.  She finally walked back to get a nurse.  Funnily enough the ER doc thought we should have surgery take a look.  Haha.  The surgeon on call didn't even want to see her just said to ship her immediately.  Yep, we got another helicopter ride!  This time Layla was awake for it and thought it was great!  She wanted to go again, lol.

The ENT and the neurosurgeons decided to just permanently occlude that artery so there would be no further chance of bleeding.  The downside of this is that she was at a high risk of having a stroke because of the loss of circulation from that artery.  I wanted to go ahead anyways.  I would much rather have some deficit to deal with than the chance of her hemorrhaging and dying.

She came through the procedure with flying colors!  No neurological problems, still Layla.  We came home Thursday afternoon.  However, now the poor baby has some GI bug and is vomiting.  So now I'm trying to keep fluids in her.  Sigh.  Hopefully she will get through this soon!

Still Worrying

6:52 PM Edit This 0 Comments »
And I can't stop!  Every time Layla gets too wild with her play I find myself asking her to tone it down!  She tripped over Aliyah today and fell and my heart nearly stopped!  I'm so concerned about this coil coming loose and the bleeding starting again.

Here is a picture of a coil being used to block off an aneurysm:
Typically they also put a stent in the artery to hold the coil in as well.  The neurosurgeon didn't want to do this because of her young age and the implications it could have for her down the road.

So what was done was that the doctor went through her femoral artery in her groin up to her internal carotid artery in her neck/ear out the hole of the artery into her ear then slowly backed up and placed these coils to block the hole.

Here is a simplified side view of the internal carotid in relationship to the rest of the head:

 See where the internal carotid artery curves towards the front of the head?  That's where it curves up and into the ear canal on Layla.  It also gives you some idea of where the blood is supplied by that vessel.  Pretty darn frightening!

She's back to her normal 3 yr old self and that makes it difficult.  I want her to be normal but I also don't want her to get hurt!  Discharge instructions from the doctor were to avoid activities that would dislodge the coil.  WTH?  I don't know what would do that but I guess they don't, either.  This is treatment into uncharted territory in a way.  She is one of five known cases in literature and apparently the others didn't need intervention or the artery was sacrificed.

So, loving that my Layla is back but worrying because of that, too.

We Are Home!

2:51 PM Edit This 1 Comment »
We are home!

Last Wednesday Layla went to surgery to have the packing removed from her ear.  She hemorrhaged again!  She was rushed to Interventional Radiology for an emergent angiocath.  She ended up having a coil placed in the cut to her artery to stop the bleeding.  They had to pack her ear.  She got another unit of blood.  She was reintubated.  Another visit to the PICU.

I was a mess!  I was sobbing off and on all day and felt so alone!  I had talked to my parents and my brother.  I called Layla’s father and updated  him.  He was due to arrive that evening for a few days.  So nice he could find time for his child in his life!  I finally let one of my friends know what happened.  She dropped everything to come and sit with me!  Thank God for friends like her!  

So once again I had to see my baby fight the sedation, fight the vent , mouth the word mama around the tube.  It ripped me up inside.  The father arrived, cried at her bedside them complained about his sleeping arrangements.  I had a room at the Ronald McDonald House but I wanted one of us AT the hospital.  I was exhausted from the previous 5 days.  

She ended up being extubated and off the vent after 24 hours instead of 48.  It was causing her more stress than letting her be awake. 

Once she was awake then I was adamant that one of us stay with her.  I asked him to do this that night again.  I figured he hadn’t been there with her going through this as I had, that he could stay and give me a chance to get rest.  He got mad!!  He wanted to go see his friend who lives in Minneapolis and somehow that was more important to him.  Still a selfish person!  I just said that he had to stay and he did but was mad about it.  After that, I didn’t ask him for anything else.
On Saturday my parents came down with Aliyah to visit.  She knew her father was there and she didn’t want to come, she wanted to stay home.  She was told she had to visit.  It went well, Layla was so happy to see her big sister and just came alive!  It was so good to see her acting like a kid instead of just sitting zoning out.  Then, at supper, it was suggested we order pizza.  My mom told me to order cheese for them instead of the usual pepperoni.  I should have listened.  So a cheese and a pepperoni pizza were ordered.  I have fed the girls pork at home.  It’s my decision, it’s my right to decide how to raise them.  He signed off on that right when we got divorced.  I have just never made an issue of it and have been careful to have a menu lined up when he visits that doesn’t include pork.  Not hiding it from him but not going to slap him in the face with it, either.  Of course then both girls wanted the pepperoni!  I was tired and I was pissed at him and his bullshit so I just put the pepperoni on their plates.  He got mad, threw his plate down and walked out of the room.  Crap.  I can understand how it took him by surprise and made him mad but really did he have to put on such a display?  Aliyah asked what was wrong.  I told her he was upset about something, not to worry about it.  After my parents left with Aliyah to go home he read me the riot act!  I told him that I would NOT get into an argument with him, I did NOT want to discuss it, I know how he feels about it and I didn’t care.  He has no respect for me so I’m returning the favor, I have none for him!  That really got him riled up.  I once again said I didn’t want to argue about it, especially in front of Layla who needed, HELLO!, her parents there for her.  She was what was most important.  

 I asked him if he stayed that night if he would let her sleep next to him.  He said no.  What the hell?  This is the way she sleeps at home and what she wants now.  I told him to go ahead and leave or go to hell that I would stay and give her comfort.  Her comfort was what was most important, not my own or his!  The jerk went back and slept at R.M.H.  He left on Sunday and I was happy to see him go!

On Monday Layla returned to IR for another angiogram to make sure the coil they placed was intact.  It was unchanged from the previous scan done during placement.  She wouldn’t stay still after the angiogram, either!  The recovery room nurse was holding her when they brought me back.  It was amusing, she’s such a fierce little tiger.  She stayed fairly quiet once we got back to the room.  I got a movie for her to watch and we colored.

She was released yesterday to come home.  We will have to go back in 4 weeks to have another angiogram but so far all is well.  What a scary, scary situation to experience!  I continue to pray that all goes well.

Standing Vigil

7:07 AM Edit This 0 Comments »
I spent all day yesterday at Layla’s bedside.  The poor little thing is resistant to any kind of sedating med they’ve tried.  Apparently she was wild last night.  Kept waking up and thrashing around.  They changed her meds yet again and she STILL isn’t out like she should be!! I wish there was something to help her rest and forget all this is happening to her. 

Today my other daughter, Aliyah, is coming to visit.  It will be good to see her!  She lost her first tooth Friday!  I’m so bummed I wasn’t there!  Her grandma is playing tooth fairy for me. So I sit here again today, keeping watch over my baby.

Layla Rides a Helicopter

9:43 AM Edit This 0 Comments »
What a wild 24 hours I’ve had!!

Yesterday I took my 3 y.o. daughter to have her third, yes, THIRD set of tubes for her ears and a tonsillectomy in the hopes it would stop all her ear infections.  Very routine, in and out the same day.

Until disaster struck.  I had been waiting in her cubicle for awhile when the surgery coordinator came in to tell me that the ENT had hit a vessel in her ear and she had lost what was a great deal of blood for her.  About 200ml.  They started a blood transfusion and it was decided that the small rural hospital we were at was not enough.  She needed to be airlifted to Minneapolis, 2 hours away by car.  I’ve never been so devastated!!  I flew with her, she was intubated, poor baby. She's been saying she wants to fly, how ironic it was this way.  And she won't remember fact when she was somewhat conscious last evening she shook her head 'no' when I told her she rode in a helicopter.

We got to University Children’s hospital and the docs did an angiogram.  Turns out her carotid arteries, which supply our brain with blood, were curved into her middle ear which isn’t where they should be.  The doctor had nicked this artery but luckily was centered enough to apply pressure and packing. 

Layla will be intubated until at least  Monday and will be in hospital until the end of the week.  The doctor wants her to remain quiet and watch her for further bleeding.  No further surgery needs to be done at this point.
It’s my feeling now that this artery bulging into her ear canal could have been one of the issues with her ear infections.  Not sure how tubes may help in the future.  Yes, she still could use them but it will be done here, at the U of Mn, where they can fix problems much quicker.

I sit here and I could be wallowing in self pity but seeing the other two very little ones in here in much worse condition humbles me.  It reminds me to thank God for my blessings and that despite this very scary incident she is still a healthy little girl! Keep us in your prayers that everything else goes smoothly.  I know my faith in God is getting me through this.

What Limits You?

3:18 PM Edit This 1 Comment »

We all have limits, some more than others.  Something that keeps us from fully living what we may be feeling.  It can be religious/faith, weight, career, friendships, relationships, many things.

Had a fabulous coffee chat with Stacy!  Wow!  What ideas we bounced back and forth about this very thing.  Not solving world problems mind you, just things that we wanted to change in ourselves.  We have a great deal in common, more than we realized.  There are things within that I’m frankly a chicken to let loose.  Oh my God!  What would other people think?  I know I know I shouldn’t let that stop me.  I should stay true to my desires.  I did so good with my nutrition and wellness but have let myself be indifferent to it for too long.  I know what I want to stand for but actually doing it?  Scary!

Far too often I let others dictate how I live instead of living how I want to live.  I made the choice to practice Christianity again but also still reading my Qu’ran.  I can do both, it’s my choice.  It doesn’t damn me, I don’t and won’t believe that.  Yet I find myself cowering to express my faith.  I love God, I believe that God is what controls all things, we just often ignore His guidance.  My life becomes unbalanced.  What an incredible God that can give us so many ways to learn His will!  I want to embrace this openly instead of only within me.  I’ve always felt awkward around others who are zealous about their religion and faith.  I’m just as much so, just not openly.

I see others in troubled relationships and feel for them.  I’ve been there.  I want them to know that when they’re ready there are many of us there to support them in breaking free.

I love my career but it is not the end all of my life.  I have a life away from work that is even more valuable for me.  For some, they live to work and we need those people.  For others, like myself, we don’t and we deserve just as much respect from employers as those that will put work first
I’ve reached a point where I just don’t have time or patience for trivial bullshit.  There is more, so much more to life that will bring happiness and wellness.  I may lose my motivation some days but I still want that end result.  

Hopefully this doesn't sound too disjointed.  Just had this all inside and had to get it down.

Need to Let Go

7:47 PM Edit This 0 Comments »
I spent the other day cleaning up posts in my blog.  I’ve reached a place where I don’t want the past up for the world to see.  I’ve been doing some internal sorting of things as well.
For some time now I’ve felt like there is something not right within me.  I feel angry and irritable frequently and without any cause.  I get mad talking about my ex-husband, thinking about him and pray that I can let that anger go and find some forgiveness.  I really want that forgiveness because I think it will bring me peace that I desperately need.  I need to let go of all the wrongs and pain that happened in our marriage.  So why is it so hard to find it?

I also find myself so short with the kids and let me tell you, I hate that worse than anything.  I keep thinking how I love having kids around and listening to them play.  I seem to be intolerant or irritated too often.  I try to control it and not let it loose but it happens.  I yell I lose my temper and it isn’t nice at all.  My kids also have that same short fuse so you can imagine how wonderful it can be when we’re all on a tear.  When I have lost my temper and it wasn’t something that I should have lost it over I do apologize and then find something nice we can do together.  I feel so guilty and like such failure as a parent when this happens. 
I’ve talked to my doctor and we have been tweaking meds.  I think I really need to find the source of this anger and discontent inside me and find a way to deal with it.


My ex called yesterday as I was trying to feed the girls supper.  I assumed he wanted to chat with them but he kept trying to tell me about his new job.  I really didn’t want to know, I had the feeling from the moment he told me about it that it wasn’t the answer.  He proceeded to tell me that things weren’t as they seemed. 
He signed on with a placement agency before I had left Connecticut.  They were supposed to give him training for job readiness and to work on projects for corporations which could lead to employment with them.  Over 2 years and many phone interviews with nothing offered.  Then he got this temp. position.  I thought even though it was temporary that it was a foot in the door.  He had made it sound like he was working for the company that needed the project.  What it really was is going to this company which then contracts out to other companies.  They don’t have the final approval to do this project from the interested corporation yet so don’t know if there will even be work.  So he went to Pittsburg with no place to live and now not even sure he has a job.

I rolled my eyes to myself.  This is just so typical of him and his grand plans.