For the Love of Ivey

Transition is a big moment for someone with disabilities. Transition to school, in school, and out of school. But medical transition for a medically complex patient with multiple specialists, is a massive transition. Even though Ivey has the Medically Complex Care Program at Children’s, the transition is vast. Passing the torch cohesively to the adult medical world is near nonexistent. Children’s is talking and prepping me, but the actual transitional move of Ivey’s medical care is all in my hands. She will no longer be under one umbrella with a single medical home with no one who knows her history. Depending on the body system, she will be dispersed across hospital campuses. The sprint to 21 is in motion with one to two office visits left with her Children’s team members. So many major decisions to make, new doctors to meet, protocols to be formed in the next few months, with everything to be in place and ready the day she turns 21. Twenty years ago, as overwhelming as it was in...

Today Ivey and I will head to Emory.  Specifically, we are heading to Emory's Department of Human Genetics.  We are going back to hopefully find answers to a question that has materialized in the past few months.   Ivey's inner circle is aware of changes that have occurred and the steps we have in front of us in a search for an answer, if there is an answer.   In Ivey's last sedated procedure(s), an ABR was conducted.  An ABR (Auditory Brainstem Response) tells us if her inner ear (cochlea) and the neural pathways for hearing are working.  Over Ivey's lifetime she has had several ABRs.  An ABR is the only accurate way we can test Ivey's hearing because of her limitations in communicating what she hears.  Where Ivey has consistently maintained a mild/moderate hearing loss, that has now shifted.  The latest ABR indicated that Ivey's hearing is now a moderate/severe hearing loss.  Her right ear having a moderate loss; her left ear...

Last night I got my girl bathed and dressed for bed.  Our usual nightly routine.  Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery.  The routine is necessary.  We discuss what will happen to her once her surgery begins.  Who will be with her.  Possible things she might feel and hear.  I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of  anesthesia   and that she may not know where she is, but mom and dad will be close by, just waiting to get to her.  I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart.  They will be as gentle as possible. And as always, this is the point where I cry.  I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is b...

I have said this before and here I sit saying it again, the laundry room of Scottish Rite is the most beautiful ugly place I have ever been. I think it may be the place that grounds me even more than Ivey. The laundry room is the equalizer of all equalizers. No amount of money, race, or social status exists there. It's just parents trying to get to the next day. Some praying there will be a next day. I have met some of the most beautiful people there in the laundry room. In the brief time it takes to wash and dry a small load of laundry a friendship is formed. I think the bond is already there, we just have to meet for the first time. We rarely get past first names, yet, we walk away knowing the dark scared corners of our hearts and minds. The Beautiful Uglies. We move a strangers wet laundry to the dryer to make room for our own clothes to wash. We exchange the superficial reasons why we are washing laundry together. Then we dive in without noticing. We talk abo...

and enjoy the ride. Well, Ivey had a visit with her cranial-facial surgeon today and it looks like she is ready to have the distractors removed.  Surgery is next Tuesday.  Wow.  That came out of the nowhere.  The surgery has been on the books for the end of April - for weeks. Looks like light is shining from underneath a door. This will be an involved surgery and will require Ivey to stay over in the PICU for a couple of days. Happy Easter +

I realize that we are in a desperate need for an update.  Last update was brutal being that it was the beginning of the home stretch for Ivey following this last surgery.  To say the least this has been one of the most difficult times with Ivey.  For Ivey it is the healing, for her momma, its the continual schedule of nothingness and not being able to help my girl to not hurt.  Despite my frugal efforts, I am deemed useless. This procedure has been topped with pain.  She has her good days, but now she cries without warning.  She cries.  She has NEVER been someone to cry.  I try to comfort, but I do not know how to help.  There have been many days that were good, a couple, great, but all outlined with being uncomfortable. My girl looks different.  I still haven't wrapped my mind around the new look.  And soon, this look will change.  The distractors will come out and a newer look will emerge.  No matter how hard I try, ...

Quick Update: Ivey had an appointment with her surgeon today - that was great!  Her upper jaw has moved forward enough that no more turns of the distractors are needed!  This was sooner than planned. From here the distractors will stay in place and she will heal for the next 6 weeks.  Let's hope that this will allow pain to subside and swelling.  Most importantly, let's hope for a little sleep, something that is a mute point as of now. At the end of the 6 weeks, Ivey will return for another surgery to remove the distractors and plates. The surgery has allowed space for her breathing to improve.  Still there is a lot of swelling that gets in her way, let's hope that improves too.  In the meantime, I leave you with this, our sweet girl when she does sleep - with distractors, plates and swelling... if the stress of this doesn't kill us, her snoring will. But it is the sweetest nerve wracking sound I've ever listened to, even from across the house. Enjo...

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 proced...

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...

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 decre...

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 ...

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 switc...

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.

 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.

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.

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

Just a quick update: Ivey had a x-ray this morning to check the location of the capsule.  It is in one of the lower quadrants of the intestines.  She cannot be discharged until the capsule is out of her.... She also went to IR to have her j-tube replaced.  It was removed during the placement of the capsule. The morning was a little rough with one seizure.  However, this afternoon she is getting her groove back.  Smiling.  Playful.  Terrorizing us by making the pulse-ox alarm every few seconds because she is kicking that leg of hers.  This is the true sign that Ivey is almost back.  She hates the pulse-ox on her toe. The information from the capsule showed ... nothing.  No lesions. Still do not know the cause of the bleeding.  But the lack of discovery has nothing to do with the effort that has gone into trying to find the cause. As to going home, it should be soon.  She must be rid of the capsule first.  Her po...

Today was a lull day.  These days are always the hardest in hospital stays.  We are here.  People float in and out of the room but overall we are at a lull in the waiting game.  The waiting for something to happen.  To avoid the hurt, we get up, get dressed and we walk the grounds of the hospital. It is these times that I see what surrounds us here in this hospital.  One, I am reminded that each floor, each room holds a child.  This is a children's hospital.  And in this place sits families temporarily split apart just like my family.  It is a hard road somedays.  Two, I always meet someone who makes me really think about, quite frankly, Life, and how fragile it really is. It is this place and time in my life that makes my other life so difficult sometimes.  I see the tragedy of this world play out in miraculous ways.  Stunningly real life.  It makes going back to the other life seem like shades of beige sometimes. ...

She was up and moving today.  Still very sore.  We strolled around the hospital and she even came down to the cafeteria for us to have lunch together.  As you can see, the handy-dandy pole with said attachments which are all attached to Miss Ivey must tag along. Moving Ivey around is painful for her.  However, she has to move.  Being too still makes her stiff and seems to hurt around her incision more.  She is still on morphine every few hours to help control the pain. Yesterday we started Ivey back on her feeds.  She has not had a feeding via j-tube since last Wednesday, so this is a test to see how she handles it.  She has been on a continual feed on half-strength formula with us titrating the volume up over the hours.  At nine o'clock tonight she switched to full strength formula. I think everyone is holding their breath to see if this triggers her intestines to bleed again. It looks like Ivey will be here several more days. ...