Monday, February 28, 2011

Serious "Meat and Potatoes" Thoughts and Conversations

Two things are on my mind tonight.  1st here are the 2 quotes.

"I have laid my son on an operating table and kissed him as he fell asleep. I have handed him to a surgeon too many times. I have learned more then I ever thought I could. I have cried more then I ever thought possible and celebrated victories that I never would have thought of. I have walked a road I never knew existed. I will walk this road forever. I am a special needs mom. I am Eli's Mom."
"the older 4 are the ones who have to watch him suffer and eal with and grieve for the potential (I'd say inevitable) loss of a sibling....this sad state of affairs."  This last statement follows a website sent to me for children's hospice. 

Both of these things got me thinking....alot.
Eli is sick.  There is no doubt about it.  Eli has been sick from birth, and Eli will remain so.  There isn't a cure, a fix, no treatment, and no magic wand.  I wish there was, my husband and my children wish there was.  Everyone who has ever met Eli, everyone who has followed our families journey, read our blogs, cried with us, sat at the computer waiting for updates, prayed for us, supported us, or gotten to be a part of our journey all wishes there was.  Everyone who has their own child similiar to Eli, wishes there was.  But lets face it.  There isn't, and there isn't a damn thing we can do about it....
that being said there is SOOOO much more to the story.  This evening I watched Eli crawl after Ari as they played blocks.  I watched him curl up with Jace watching intently as Jace played nintendo talking to Eli about all the star wars characters.  I listened to Eli bust up laughing at Emily as she shook her pony tail back and forth.  His curiosity as Ben hides toys under his blanket and then makes them reappear.  I hear my kids calling out goodbye to Eli as they run out the door moments before missing their bus.  I see them peaking into his room at night before bed to kiss him goodnight one last time before he falls asleep.  I watch them.  I listen to them.  To them Eli is their brother.  They cuddle him, play with him, and get annoyed with him when he grabs their things from them. 
I also listen to Jace as he wants to invite a boy from school over to his house.   A little boy who can't talk and is in a wheelchair.  Jace says he doesn't have many friends, but that he is this little boys friend.  That he doesn't care if he's different.  He says they talk together in their own way, smiling and laughing.  I hear Ben talking about a boy in class who has only 4 fingers.  Ben talks about how it's different but it's ok and that he's ben's friend.  I watched Ari at the hospital last week cuddling up with her little brother.  I watched her oblivious to all of the medical equipment around her.  She didn't care if they had IV's or wheelchairs.  She just hung out and had a good time.  Emily can go to school and talk about her brother and how very much she loves him and how special he is. 
My kids are growing up learning how to love unconditionally.  They are learning respect.  They are learning determination.  They are watching their brother survive ALL odds, and they are supporting him and loving him thru it all. 
Has it been hard, sure.  Will it get harder?  Maybe.  But why only do it if it's easy?  What is there to gain at that point?
I remember being awake with Jace all night for months on end as he threw up over and over and over.  Sometimes 13 plus times a night.  I remember being so careful with him because the moment he cried he got so sick.  I remember medication trials, food trials, trips to KC to the children's hospital to try and find out what was happening.  It was rought.  It was exhausting.  We gave up alot of things as a family, foods and events because of how hard it was for Jace.  It's been a long road learning what is best needed for Jace and how to best deal with his cyclic vomitting syndrome, GERD, ADHD, and his food allergies.  But it has taught Jace AND the rest of us so dang much.  Jace is amazing at reading his body and knowing what he can and can't do with it.  He's incredibly understanding of people with stomach issues and food allergies.  He's been amazing with Eli and understanding about Eli's "special tummy"
I remember Benjamin as a baby.  He would sleep all day, never wanting to move.  He couldn't walk, crawl, or talk.  He had to be pushed to eat.  He began therapy at a very young age.  As he became older things got worse, the fits were out of control.  Then the diagnosis, autism.  It was hell,  no doubt about that.  Ben had inhome therapy 5 days a week.  it was rough on all of us.  He disrupted life.  We had to leave tons of activities because he couldn't handle it.  Now ben is working in school, making friends.  He's helpful when he wants to be.  He can be the most caring little boy in the whole world.  Helping Ari clean her room, taking Jace's toys down to his room before he gets in trouble leaving them out.  Patting Eli on the head and giving him kisses.
Ari was a struggle unto herself.  She too was in therapy to help her with walking and crawling.  She has sensory issues that take work to overcome.  She is being tested currently for hearing issues.  Again she is sweet and loving and caring.  She can run and climb trees with the boys, no problems keeping up.
What if we hadn't have put that time as a FAMILY into those rough patches?  What then?  We do it because we are FAMILY and that's what we do.  We don't look back.  We don't wonder what if...We don't wish it different.  We all have our issues and because it's us it's just NORMAL.  That doesn't always make it easier, but it's NORMAL for us. 
We have made it this far, it's been an uphill battle, and we sooo aren't done.  But we will continue fighting thru it together as a FAMILY because that's what you do for each other.  Nobody left behind.

If you can't accept this, if this is a problem or an inconvenience then this isn't the journey for you to be on.  We make it a priority to surround ourselves with people who will delight over 1 extra hr off the pump, 1 increase in calories that didn't cause our GI system to shut down, 1 crawl forward onto the wood floor, 1 turning of the head with sister calls his name, 1 week home together as a family.  This is our journey. 
We are ready....are you?

Sunday, February 27, 2011

Quiet Sunday

It really turned into a pretty quiet sunday minus the lightening, thunder and hail!  :)  The kids all headed off to church this morning looking as nice as could be!  The boys all looked so nice with their fresh hair cuts, and jace wore his button up and tie.  Ari had her hair down with a simple headband, it's getting so darned long!  Emily actually wore a skirt today (SHOCKER) and I did her hair for her and she finished it off with some makeup.  They all looked so nice and so big headed off to church. 
Bob and I went on an almost 3 mile walk, and spent some time playing mario and watching TV together.  The afternoon brought housework and some baking.  Eli was in a super happy mood and spent alot of time trying to crawl around, still worried about the wood floors though.  He still refuses to move out onto them!  :)
This evening brought a super yummy dinner.  Now we are getting ready to watch our family movie and eating our yummy baked treats.  I'm hoping to get a project going.
This week will hopefully stay pretty low key but no guarantees. 
I will try to get pictures up before the week is out!

Saturday, February 26, 2011

Home for a week

We are home for right under 1 week...hopefully.  Eli got out of the hospital Friday morning.  He did well overnight with his CPAP and his breathing, only alarming a few times.  We got home and immediately went to his CPAP set up and his pharmacy. 
Today was spent unpacking and getting Eli's things reorganized. 
We have also spent a bit of time with the kids hanging out and watching movies.  It's been pretty quiet.  Hopefully tomorrow will be more of the same.
This upcoming week brings PT and OT as we finish up getting ready for the re-write of Eli's IFSP.  On Friday we have to be in KC bright and early for an appt with the doc who runs the medically complex kiddos clinic.  He has schedualed a 3 hr appt with Eli.  We are super excited for him to be taking over Eli's care as his PCP.  Hoping to get a good plan in place of whats next.
Then back to KC the next Tuesday for feeding clinic and nutrition.  Hemoc and labs at all appts. 

The older 4 are well.  They spent a big chunk of the afternoon outside today.  The boys got haircuts tonight and are all looking super handsome.
More soon.  Hopefully with some pictures.

Thursday, February 24, 2011

Out of the OR, but admitted

Today was Eli's procedures.  The ENT ran his bronchoscopy and larygoscopy 1st.  He didn't find anything unusual with the trachea or vocal cords.  He will talk to the GI to see what the GI's thoughts are for the next testing on motility and his esophagus.  Then it was Eli's ABR, automated brainstem response.  Eli failed.  He has moderate hearing loss, can't hear most consonants, and sounds that are loud and yelling to us are very soft for Eli, almost whisper like.  She immediately did all of the molds for his hearing aids and spent some time with us picking out what products to use.  We selected a chocolate brown hearing aid that he can add stickers to, and orange for the ear piece as orange is his house color!  :) 
After surgery he had some problems with his O2 and apnea so they decided to admit him for the night.  He will be on CPAP tonight.  The goal is to be discharged early AM and drive straight home to meet with his DME to get his equipment delivered and set up.  He's exhausted this evening and fell asleep super early!
We also met with his Infectious Disease doctor.  She discussed the ECHO and the concerns with how the infection raged thru his body and ended up infecting his heart.  She wants another 2 weeks of oral (thru his J) antibiotics to make her feel safe enough.  Her concern is if the infection is still sitting in the blood clot in his heart.  So he will be switched over to that tomorrow. 
They will also be raising his blood thinners as his level came back to low.  He will not be able to restart them  until tomorrow as he had to be off 24hrs before his procedure and 12 hrs minimum after. 

Ari has done really well all in all, considering.  Today she struggled alot more with, and has been a bit of a pain.  BUT she also spent almost 10 hrs at the hospital.  So considering she's done well.  She got a blanket today and has hauled it all over with her.  The volunteer gave her 1 to give Eli when he was out of surgery and she couldn't wait to show it to him when she got to see him after recovery! 

As always Bob and I are exhausted.  I don't think updates on us revolve around anything but exhaustion anymore!  :)

More soon!

Wednesday, February 23, 2011

KC again

This update will be a bit jumbled as it covers a whole week of information!

Eye Doctor ~ Eli's eyes are looking a bit better!  He is going to continue on with the glasses, so we are so happy to be avoiding eye surgery!!!  He will recheck in 4 months, the goal is to get to every 6 months but we aren't there yet.

Last KC Trip ~ We came up to KC for 2 appts and ending up being here for 5.  We saw his GI and did alot of talking about his feeds and such.  He completely agreed that we shouldn't be upping his feeds and that he needs time to adjust to where we are.  He wants only 2-3 dirty diapers a day before we even consider going up on feeds.  He also wanted the GJ changed to a smaller size as his stoma was horrible irritated from the acid, covered with burns and bleeding.  He sent us to have the GJ changed and it's been great since!  We also met with hematology twice.  They were able to draw all of his labs and do all of his dressing changes.  Eli met with preadmissions testing and got all of his info and paperwork done.  They will again follow mito procedures for the sedation.

Then home.  At home we had PT twice and speech one.  He is doing well with PT.  She's super happy about him working on crawling.

CP Clinic ~ Eli had his appt at clinic and we met with the orthopedic doc and tons of other people.  She wants to wait on braces and will recheck in 3 months.  He will be meeting with seating clinic next month to see about getting fitted for his 1st wheelchair. 

Late friday evening Eli's PICC line stopped working and was leaking water everywhere.  We took him to the local ER.  They called KC and adviced us that KC said take it out (it had a large hole in it) and switch the last 3 days of antibiotics to a super strong oral antibiotic.  We  went home 5 hrs later.  We got a call 1st thing monday morning stating that his KC docs wanted an ECHO before just taking it out because of the blood clots.  Wichita didn't do this.
We were told that we needed to head up to KC Tuesday for an ECHO.  We got here and it was done pretty quickly.  Today was Hematology again.  The blood clot has gone from 6 x 6 to 4 x 7, so they are calling it smaller, but unsure if it's just a different angle of measurement or what.  They have however decided to extend his anticoagulants to atleast 4 months instead of the orginal 3.  He also had his labs redrawn today.  If his levels are still within therapeutic range then we can switch to drawing every 2 weeks instead of weekly.  Tomorrow is Eli's sedation procedures.  He's having a bronchoscopy, larygnoscopy, and his ABR.  We are excited to finally be getting this done, but super nervous for the results.  Tomorrow he will also be meeting with infectious disease to discuss the antibiotics and with nutrition to recheck on feeds.  Both just called within the last 10 minutes to add these 2 appts. Go figure.
Next week we will be back in KC, as well as the following week.  Alot of appts coming up and alot going on.

This trip in KC is 4 days long.  It's Bob and I, with Ari and Eli.  Both of the kiddos have done really well.  We've spent the early mornings taking Ari out doing things and then afternoons at the hospital, and evenings in the play room of course!  :)  Ari enjoys the childrens hospital and they have lots of great things in place for siblings.
As always Bob and I are exhausted and have alot on our minds.  We are well on the road to making the decisions that we need to make.  We don't have alot of options, and they aren't quite what we want but definitely best.  We know it will all work out.

The older 3 are doing well.  They are busy with school this week.  Emily finished up state testing last week and is just getting resituated back in normal class.  Jace is still working hard with handwriting and reading.  He got 100% on a spelling test last week and was super excited.  Benjamin is working on learning to read and they are working hard on sight words.  His handwriting is also a struggle with alot of backwards letters and such.  We are currently working on his IEP, and it looks like we will end up in mediation for that one.  Ari is doing good too.  She had her 4th birthday party and got alot of super cool stuff.  She got some jewelry, hair pretties, some things for her leapster, and a doll that she can dress up.

As always we are so blessed to have friends and family in our lives who support us every step of the way!   You guys all know who you are and we are eternally thankful to have you in our lives!
Here are a few pictures of Ari and Eli today at the underwater kids adventure at Crown Center in KC!

Tuesday, February 15, 2011

Busy 2 days begin

Today starts a super busy, long, info packed 2 days. This morning Eli has his recheck with his pediatric specialist eye doctor. Im curious and nervous to know if his eyes have improved any. Then we head over to his CP clinic appt. This is his 1st appt there. He will see a whole group of doctors and specialists at 1 3-4 hr appt. Then we immediately hit the road for KC. Tomorrow he meets with GI, hematology, has his preadmission testing, lab work, and his PICC dressing change. Then the plan is to drive home tomorrow night.
Im nervous. Last time i drove to KC and planned to drive home Eli crashed and 2 weeks later we came home.
Lots of info and knowing Eli's history I'm nervous for the answers. I will update as I can.
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Monday, February 14, 2011

Discharged, Home, Four, and Love

Lots to catch up on.  I'll break it down.

Eli~ He was discharged after a HUGE mess on Saturday the 5th.  The hospital thought they had taken care of his blood thinners and we thought they hadn't.  Eli's nursing agency, DME, and pharmacy all requested a monday discharge.  The hospital said Saturday was fine.  Well it wasn't.  There were no meds.  We had to have them by 9pm.  After 4 hrs of calling around Bob and I were able to find a company in Wichita who had them.  So the docs had to do lots of changing in plans.  We were discharged and had to hurry back to Wichita to meet them for all of his meds.  His IV antibiotics ended up being 45 minutes later, and his blood thinners ended up being on time.  We had minimal nursing.  It was a mess trying to get resituated.  Bob and I were drained after being gone for almost 5 weeks.  It took us days to get unpacked, reorganized, and resituated with all of Eli's new routines.  Eli's had some rough patches but has done remarkably well getting resituated.  The new meds are time consuming.  Sleep is a mess.  We've been working on changing some things with his formula which has caused some GI issues.  This morning he had his 1st nose bleed.  So much he had to be suctioned as he choked on it and his drain bag was a mess.  He has TONS of appts coming up.  We will be in KC 2 days this week, 3 days next week, plus 1 overnight at our local hospital for his CPAP.  Alot of changes going on with his care plan and doctors and such. 

Ari~ She's doing well now.  She had pneumonia but she was the one who got better quickly. She had her 4th birthday yesterday!!!  Such a big girl!  I can't believe that she's already 4.  Her birthday party is this coming weekend.  She wants a princess fairy mermaid halloween birthday!  :)  She's so silly.  She got 1 present yesterday, a purple crown with a crown necklace.  She loves it and it looks super pretty on her!  She's super excited for her upcoming party and cake!

Ben~ He's a mess currently.  He got super sick.  Ended up with 103 to 104 fever and croupy cough.  He was exhausted and didn't eat and had to be pushed to drink.  He missed all last week of school.  He's doing fine now and is back at school and all good.  We will have his IEP meeting this coming friday.  Today is his valentine's party and he's super excited about that!

Jace~ He's Jace.  Lol.  He's been a mess lately.  His behavior has been horrible and the violent side has shown back up some.  He is finally better as well.  He ran alot of fevers and his cough was horrible.  Big deep coughing.  He also missed alot of school.  He's doing well with school and has really been improving with some of his academics!  He also has his valentines party at school today.  His class is doing ice cream sundae's and for the 1st time he gets to participate.  Our local grocery store finally carries 3 different flavors of almond milk ice cream!

Emily~ She's also finally beter. Today was her 1st day back at school, missing all of last week as well.  Again the high fevers and cough, and it really caused her asthma to flair up.  She is preparing for her upcoming tests at school this week and will spend 3 days on them.  Bob has spent alot of time helping her go thru all of the test preparations and she is definitely ready!

Bob and I are exhausted.  He's still on disability leave and it has definitely been helpful to have him home right now as we are all getting resituated.  He has his next doctors check up on the 5th of March.  Hopefully the changes in meds and such will help!  I'm ok.  Alot of thinking and adjusting right now.  During these last 6 weeks we have learned alot about ourselves, our family, friends, the medical system, and life as a whole!

I promise to try to do better about updating more often.  These last 10 days we've just needed this time away from the computer to be a family!  It's been nice!


Friday, February 4, 2011

Morning of Day 13

Yesterday was a long confusing day.  I wasn't able to get on and update because by the time afternoon hit I was at the beginning of a migraine.  By dinner the migraine was in full swing to the point I was dizzy when I stood up.  Not a fun day at all. 
There was lots of talk about getting ready for discharge and alot of confusion.  They finally were able to get an IV pump and all of his meds and saline and heparin and all of the care required for the PICC line and antibiotics.  Then the pharmacist came up to teach us how to administer his shots as well.
They are hoping to have the ENT come today and run a scope to completely look at his vocal cords.  They are concerned by the fact that he makes ZERO sounds.  His attending has also been working with their medically complex kiddos team and they are working to get his care transferred up here as well as contact points when he is ill and needs hospitalized.  We are so impressed with everyone and feel as though they are really working to do what is best for Eli.
The hope is to get discharged Sunday afternoon and get home for meeting 1st thing monday morning to get nursing retrained and restarted!  Docs haven't rounded yet this morning so we are just kind of waiting for that to get it all finalized.
This morning I did his IV antibiotic and gave his shot!  I was nervous but I did it!!
Here are a couple of pictures from the last few days.
Day 10 Playing in the exercauser

Day 10 Cuddling with Dad

Day 13 playing in his exercauser again

Wednesday, February 2, 2011

Day 11 brings more unknowns

Today is day 11.  WOW. Time is blurring by.
The docs came in this morning and bob and I felt like we had been punched in the chest. 
First of all Eli's coagulation levels came back still low, actually they are dropping which makes no sense and is the exact opposite of what they are supposed to be doing with this medication.  They upped the dose by 15% and are redrawing right now. 
Secondly apparently his hemoglobin is still low.  He's anemic.  They ran some other tests and it appears as though he's been anemic long term, like it's an overall health concern.  Levels should be between 10 to 12 and anything under 7 they normally talk blood transfusions.  Eli's is 7.4.  They discussed the pro's and con's of this with us this morning as a just in case, but are waiting to see what happens.
Thirdly his liver function tests are elevated some.  The antibiotic can cause this.  They will keep redrawing and keep a super close eye on it all.
It was alot of information to take in at once, and yet 1 more thing to add to the list of overall health issues. 
Right now we are just resting and hanging out together. 
We will update as we know more.

In other news...our oldest 4 are sick. 
Emily is mostly getting over the upper respiratory crap she had.
Jace has an upper respiratory issue and is on meds.
Benjamin has a sinus infection and upper respiratory stuff and is on antibiotics, meds, and back on nebulizer treatments.
Ariana has pneumonia and is on antibioitics, meds and nebulizer treatments.  She has a fever and is refusing to eat. 
My mom is 1 busy lady keeping up with all 4 of the kids with them all being sick.  Our pediatrician got them all hooked up with meds and with a nebulizer as we have Eli's here in KC with us.  Emily is still using her inhaler and it seems to work well for her.  Hopefully they all get better super fast!

Tuesday, February 1, 2011

PICC, Snow, and Thinking

Today has been a fairly slow quiet day.  He had his labs drawn for his coagulant levels.  He also had his PICC line placed.  This seems to have worn him out as he's spent the rest of the day napping! 
It's snowing.  ALOT.  Bob and I have stared out the window watching the snow come down.  It's been kind of surreal.  I've done alot of thinking.

Thinking about how the hospital in wichita wasn't diligent with caring for my son.  Thinking about how he got gram negative serratia sepsis from their bad care.  Thinking about how the 2nd hospital in Wichita ignored his high fever and heartrate saying it's just a hospital bug.  They didn't check not 1 single thing, just sent him home.  Thinking about being rushed by ambulance into a trauma room.  Being told that the only time they see an infection as bad as Eli's is in 100% immuno compromised patients or when it's to late.  Thinking how close we came to losing our son.  It terrifies me to go back to Wichita.  To go back to these hospitals, to these doctors. 
We have alot of decisions to make right now, and we know this.  We've talked a bit, and will have sooo many more talks.  We don't have the answers, but we know that we will have to figure it all out.
For now all of Eli's care will be transferred up here to KC to the children's hospital.  We are trying to find out if a plan can be put in place that the hospitals in Wichita simply stabilize and immediately transport.  We are unsure how this will all work out right now, being 3 1/2 hrs from the closest children's hospital, BUT we do know that this is something that we have to do!
I need to stop thinking and just relax and enjoy my evening with my man! 
More updates tomorrow.