Is it Thursday?

The calendar says that it is Thursday.  Thursday, but I couldn't tell you the date if you tried to beat it out of me.  Ivey's already beaten you to the punch, literally.

Our girl came home on Tuesday afternoon.  Orders were written and we waited for Matt to drive to the hospital to follow us home considering that the temp was just of 32 F.  Of all the weeks for snow to be in the forecast.  Since arriving home it has been the mental swing back into a schedule that we have not experienced since the days of Ivey's trach and the physical snap of organizing, pulling up meds, administering meds and fighting fatigue.  Oh, and also trying to be a present mom to two boys I have missed desperately are part of the mix.  The realty check reminds me that Matt and I are a great team.

Ivey's swelling is down significantly; however, I can't say the same for her pain.  And to think, there are many more days ahead of us.

Where we have been through many procedures with Ivey, this time Home is different.  This is the first big procedure without support from home health nursing during the night time witching hours. The nurses would sit with her at night managing her health needs while we slept.  Ivey lost her nursing hours over a year ago.  This time there is no end to the day or night, they are merged endlessly together.  Her regimen of medications runs every four hours with some scheduled in the in-between hours, this does not include her normal daily medications and feeding.  Not to mention, she is not sleeping except in spurts and her pain is around the clock ebbing and then increasing.  I am optimistic that this will improve as the days pass.  Part of me wants back in the hospital, no matter how homesick we get, the other half of me knows we will push through this and come out better on the other end.

She is actually sleeping now, hence the update.  It is sweet to watch.  Mostly, it is a relief because she is at peace for a moment.

Ivey is enjoying staying in one spot.  Moving around agitates her, and rightfully so.  She is loving to snuggle and once comfortable will leave ice packs on her face - not something she would tolerate under normal circumstances.  She is also wanting to sit and hold my hand, which is not something she has ever really done.  Hugs, kisses and hand holding are not Ivey's means to affection, all of which most of us take for granted under normal circumstances because that's just what most kids do.  Typically when Ivey does hold your hand, which is a large majority of time,  you are expected to play a game or sign with her.  In the past week she will just hold my fingers.  That's all.  Hand holding is very endearing.

This week is a reminder of Ivey's need for touch and its significance in her life.  Touch for Ivey is everything.  Literally - everything.  Security, stability, reassurance, anchoring, attachment to this world, my voice to her and her voice to me.  It is everything you can imagine and then some.   She held Matt's finger the other day and he would not move a muscle until she finally let go because in the past it has been such a rare occurrence for her to want to hold on to us.

Well, our girl is up.  Spurts of sleep.

You are all so appreciated for thinking of Ivey and our boys over the past days - years really.  Thank you for every text or phone call and card.  Time is so limited that I can't get back to everyone, but please know it very appreciated.  Please text and/or call.  I'm locked in for a while with our girl.  I may not be able to get back to you for days, but knowing you are there gives the spark to push through.  It's almost impossible to explain, but thank you - .

G.

Already very noticeable movement of her upper jaw and the mid-face.  Bruises are still fading.  Her upper lip area and cheeks are full because of the hardware in place underneath the skin and a little swelling.  Can you believe she will leave the headband on?  It holds the distractors back that are exposed through the skin on either side of her little face.

One Week In: Monday Night Update

Ivey seems to have made the necessary turn over the past 24 hours.  She is managing pain without the morphine, which is necessary for coming home.  There is still a regimen of pain medication, but that can be monitored on the home front.  All of which means we are one step closer to coming home.  Pain has been Ivey's biggest obstacle.

Ivey's swelling is down immensely, still swollen, but nothing comparable to the past week and bruising is fading.

Seizures still hit periodically, but they tend to go hand-in-hand with pain.  Another thing that is normally monitored on the home front too.

This afternoon her IV went and was removed.  She has been a pin cushion over the past week, with lines from every extremity at some point, so everyone was in agreement to go without an IV and switch all meds to her feeding tube.  She is up to full feeds, so IV fluids are not needed any longer.

It is a noticeable that her upper jaw is moving forward.  With it her little nose is getting "perkier" and her lips fuller.

We can all breathe easier for now.  It's hard to fathom that a week ago she plummeted and now she is signing for "The Wheels on the Bus" and "Itsy Bitsy Spider".   Once again she has been a warrior.

Hopefully we are closer to going home.

G.

The Conditions of Unconditional Love

I think most people walk around expecting to find someone who will, at some point, give them unconditional love.  Others look to their children or to their parents and expect unconditional love.  You know, being loved for who you are, just you, nothing more, nothing less.  No stipulations.

I also think that we purposely gravitate toward others who we feel can love us unconditionally, despite all of our faults and flaws.  Or at least love us in the terms that we assume loving unconditionally means.  I am not so sure I want to be loved unconditionally.  Most often unconditional love is described by the flaws, the things we do that make life harder for the other person. It is our pros out weighing our cons. We will love someone unconditionally and somewhat pretend the other does not exist or that we can merely overlook the things that are not so lovable.  Rarely does unconditional love describe the joy we bring into someone's life.  Joy does not make it hard on another, but the sandpaper and baggage we carry around sure does.

If you look up unconditional love you will find that it is defined as affection without any limitations or love without conditions.  

After 8 years and 10 months in this world with Ivey and loving her with every breath taken since then, I can unequivocally say that there is no such thing as unconditional love as defined by a dictionary or what we imagine it to be.  Our humanness has programmed us with limitations and conditions necessary for us to be comfortable in this world.  It is who we are.

Rather, I would say that we love despite the limitations and conditions we must face in the presence of another person, be them intentional or unintentional conditions. We love them all, the pros and the cons, the faults and the flaws.  It is us choosing to love over and through our limitations and push into the unknown chaos of another soul and their world.  It is taking that risk.  Love is risky business.  It is knowing that your heart will break, you might break, the one you are loving may break and that the comfortable world you live in may come crashing down around you- and despite all that, you love them with your all, all you can give, for as long as you can give.  It is seeing the conditions in which you love them are at times full of joy, and at other times, those conditions will take you places that rip your heart from your own soul.  But you still willingly rip out your heart and give it willingly to the other and you love them despite and in spite of it all.

So, no, there is no unconditional love.   

It is love that accepts the conditions you must sometimes face 

while loving that person with your whole heart, your whole being.
Loving their whole heart, their whole being.

It is risking to love despite the conditions.

G.

Ivey's Friday Update from Scottish Rite

TGIF!

It’s been a bumpy road the past couple of days.  Ivey has been more playful during the days.  The evenings and nights have been long and painful.  Managing Ivey's pain at night is difficult.  She is not tolerating her continual night feed.  She is not sleeping and the little spurts that she does are very restless.  Even after Lortab, morphine and Motrin, last night she was up and agitated until she finally exhausted herself around 3 am.  They were in at 4:30 a for labs - rest over.  She is also having little episodes that seem like jolts of sharp pain maybe hitting her.  Seizures are spiking in every so often.

This afternoon Ivey was moved from PICU over to the Floor.  She will be here through Monday for sure.  Coming home after Monday will depend on how well she does over the weekend.  

She is still very swollen and bruised.  Wednesday night the swelling peaked, hopefully swelling will continued to decrease even though it seems to have increased again this afternoon.  

Ivey had chest x-rays Thursday morning.  Her left lung is fuzzy.  We do know that she did aspirate blood on Monday. There is nothing to worry about yet, but we desperately need her to lay on her right side, but she is not cooperating.  

Stay warm.  I haven’t been outside since Monday, but they say it is cold outside!! 

I am attaching pictures of the mold of Ivey’s skull.  Maybe seeing the mold will help to illustrate what happened during the surgery and what we will be doing over the next several of weeks.  

Ivey’s upper jaw is EXTREMELY small.  Her air passage was being a little obstructed and would continue to be as she grows.  You will see pink, that is her teeth.  But right next to, not quite below, her nasal bone, you will see black lines.  The lines are where the surgeon cut her maxilla bone.  Basically, in blunt terms, we broke her face.  The procedure is called a La Fort Osteotomy.  It is an extremely painful procedure.  Her maxilla bone would be “free floating” except that it is secured by hardware.  There are devices sitting on the cheek bone area that are distractors connected to the pieces securing the jaw.  The distractors come through her skin like little antennae.  We use a wrench to turn the screws and move her upper jaw forward, giving her space in her nasal/palate area.  

During the surgery Dr. Williams moved Ivey's jaw forward 5mm.  I am turning the distractors twice a day.  Starting tonight we will begin turning each distractor two rotations, where we were only turning once.  Despite the swelling, her jaw has moved a small noticeable amount.  Yes, there are areas of her skull that are still open from the cranial vault expansion she had a couple of years ago.  That is good, there's room for her growing brain!

G. 

Wednesday Morning Update

Good morning.  Thought I would give you all an update on Ms. Ivey-Lou.

I don’t really remember where I left off yesterday, so I’ll pick up somewhere in the middle.

Ivey did have a relatively good day yesterday.  She did want to play “wheels on the bus” , “its-bitsy” and “row row row your boat”.  Not with much gusto, but would wiggle her hands.  She signed “Ivey’s momma” a lot, which is a good sign.  And she BEAT the switch to her dog Scout to death, which was a great show of her sassy normal attitude.  She also put her thumb to her mouth and then moved it and looks so very sad.  If I could give her one thing, it would be her thumb.

She did have seizures last night, again.  Ativan was given.

During the night she continued with her Lortab and alternated with morphine.  Apparently she is super sensitive to the morphine during this stay, so her heart rate and respiration dipped really low again.  So we will have to watch her closely.  The benefit to pain medication,  she slept well.  

Okay - today:  She has had both pain medications so monitoring her closely.  Respirations are low right now but heart rate looks great.  O2 is 98!!  Dr. Williams and team came in and he turned the distractors.  We will turn them twice a day.  Ivey did awesome, but keep in mind we prepared her with the pain meds, so she was feeling very sedated.  It took all of 2 seconds to turn the distractors.  It looks simple but dear God we are moving her jaw out.  Just thinking about what we are doing to her insides is overwhelming.  

Dr. Williams requested to have her stay in the PICU again tonight due to her seizure activity. The PICU doctor agreed.  We are in  PICU South, the new PICU wing.  It’s awesome - PICU South is for trauma, neuro and cranial-facial kiddos.  

Dr. Hemre, PICU doc, likes that Ivey seems to be rebounding.  She did talk a little about Ivey’s crashing episode on Monday, which is also why we are having to watch things so closely with the morphine.  I love hearing her thoughts in hindsight. Luckily, Ivey had this same doctor in the TICU after her tracheostomy.  At one point Ivey began crashing during an episode after her trach.  I remember Dr. Hemre's face of urgency from way back then and her telling a visiting friend they had to leave immediately.  So Monday seeing that same face on Dr. Hemre again flipped my switch and I knew how bad things were possibly swinging into motion.  She said it is her look of focus.  It’s funny the snapshot memories that have stuck with me over the years.  They are blessing in disguise sometimes.  Ivey is in great hands across the board.  Nurses are the best of the best - literally.  

Ivey’s face is extremely swollen and bruised.  Today will most likely be the worst day of swelling since we are 72 hours out from surgery.  Blood still draining. Other than that things are going well.  We painted her toes pink this morning, something Ivey does not normally enjoy.  Another perk for the momma thanks to the lortab and morphine.  Gotta find that silver lining. 

G.

Pre-Surgery Super Girl

Tuesday Morning Update

Good morning! It's 7:15 am and shift change is in motion. Ivey has had a relatively good night.

As of now her heart rate has increased and is fluctuating in the 90's.  We would like for it to be a little higher, but is great improvement over the 50's and below yesterday.  Ivey's respirations have also improved.  Her numbers are floating between 13 and 20.

As Ivey's  heart rate began dipping into the 30's yesterday, she was also only taking about 9 breaths per minute and they were very shallow and labored.  This was the time that she created a little scare.  She was on a high volume of oxygen and at one point they needed to bag her to assist her breathing and were prepping to intubate her.  The concern of getting the tube down due to her surgery was there and a back up plan of re-accessing her trach site was discussed.  All cart was pulled into the room and the PICU doctor and teams were moving into place.  Yes, that was the point my switch flipped back into a mode that hasn't been needed in awhile.  She had a room with the doctor, full of nurses, respiratory and more waiting in the hallway.  Seeing the chaplain move into the room was, well, there are no words.  It's comfort and paralyzingly fear all rolled into one.   With work, they did get Ivey stabilized.

During the night she held her own.  She only has a canula and they are lowering her O2 levels now.  It seems her pain is being managed. We can gear that by monitoring her seizure activity and heart rate. She did have several seizures during the evening, but we seem to have them at bay for now.  Ivey's CO2 levels are okay.

As for the surgery itself, it went well.  The cranial-facial surgeons (4) came in last night and this morning and gave a good report.   She did have bleeding in post-op that required her cranial facial surgeon to be called in. The maxilla bones were cut and now screws are holding it in a stable position.  The hardware is running under her skin.  On either side of her face just in front of her ears near her top teeth area, there are wires protruding from her skin.  They do look a little like antennae.  These are the distractors that we will turn to move her upper jaw forward.  Turning will begin on Wednesday.

Ivey's surgeon did give us the 3-d copy of Ivey's skull that he used to decide where he would make the cuts.   Seeing her skull is amazing.  To see it truly clarifies how this surgery will be a positive for her in the long teem.  Her breathing was compromised and would be more so as she grows if this was not done.  Ivey has never stood a chance at chewing or swallowing properly.

I'll update if anything new comes up.  She is very swollen and bruised.  There is still a good bit of blood draining from her nose, mouth and old trach site.   The blood is on her but it's not worth the pain to move her to clean her up completely.  Matt actually described her to someone as looking like  Rocky after a fight, which is pretty accurate.  But she is still our beautiful girl.

Looks like we are giving up sleep for Lent.

And please say a prayer for a family just a couple of doors down that lost their 9 year old son yesterday.  They need support now.

G.

PICU

Ivey did finally make it up to the PICU after a couple of hours post-op.  She has struggled throughout the afternoon.  Ivey is having trouble maintaining her her heart rate and blood pressure.   Along with that, they are monitoring her CO2 levels.  If she does not improve, there is a possibility of intubating  her.  She has lost a good unit of blood and may require another transfusion.  Blood did asperate into her lungs which is hindering her breathing as well.  She is on an antibiotic to prevent infection so hopefully this will hold off pneumonia.  To top it off her seizures have begun.  Both pain medications and seizure medications suppress the respiratory system, so there is a balancing act taking place.  Nights tend to be long.  Cross your fingers and pray for a good night.

A Glitch

 Had a glitch.  She has had some bleeding.  Surgeon is back with her.  It may be another 30 minutes to an hour before they move her to the PICU.

Out of Surgery

She is out of surgery. Surgeon just left the room. She is in recovery.  Things went well. They will move her up to the PICU. I'll let you know more soon.

SuperGirl- maxillary distraction

Ivey was taken back to surgery around 10:00 am and they got started around 11:00 am.  Surgery is expected to take around 2 hours.  I'll update as soon as I hear from the nurse in the OR.

After surgery, it is planned for Ivey to be moved to the PICU for a couple of nights and then out onto the floor.

This surgery is a maxillary distraction.
Gwen