For the Love of Ivey

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...

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 ma...

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