2022
Ella was very cooperative when the doctor removed her “chin to chest” sutures this morning.
She was less so when it came time to remove her PICC line – once she was wrapped up like a burrito she came around and the line was removed.
After one final check by Dr. Rutter, Ella and Papa left the hospital and headed for the hotel in Blue Ash.
As you can see from the photo, our little “Kailua Girl” is bracing herself for the cold weather outside.
Thank you for your prayers.
Ella likes to start her weekend with a routine she calls “Spa Saturday.”
The day begins with a relaxing pink bubble bath that lasts at least 30 minutes. Once warm and toasty in big white towels, Ella likes a scalp massage. A chignon by her stylist conveys the duality that is Ella’s essence: carefree and classic.
Next comes some fun time with her cards and sticker book. After breakfast in bed, Ella has her “healing touch” body massage and a nap.
Check back later to find out about the rest of Ella’s Spa Saturday.
Howzit!
Kailua Girl Ella here with ya Cincinnati surf report.
It’s been cool and sunny here da last few days. But dey no got any waves on dare skinny ocean so I tink I gonna come back to my ohana on da winwade side.
You down for mo pizza when I get dare? Eh Brah? See ya soon!
“Pinch, Punch, First of the month…
Ella continues to improve! Each day she is a bit stronger and a bit healthier. Today, during her first post-op trach tube change, we were able to get a good look at Ella’s surgery site and stoma.
Everything looks pink and healthy. Best of all, we are once again allowed to use Ella’s regular velcro trach ties – they are much more comfortable than the white cotton ribbon that is used during surgery to literally tie the trach in place.
Ella will soon get her “liberty card.” This will allow us to leave her room to use the play deck and play room – we can hardly wait.
Lastly, Ella is helping Papa readjust to civilian life. She sounded her version of “General Quarters” shortly after midnight on 01 Nov 2008, in honor of the historic passing.
Thank you for your prayers
Happy Halloween!
A whole cast of characters has interacted with Ella today – from Batman to Snow White. Halloween is a very special holiday at Cincinnati Children’s Hospital – everyone is in costume and full of “Trick or Treat” mischief.
Ella was able to play her part today, thanks to Ella’s “child life specialist” Allie, who brought her a big bag of Halloween presents and a Disney Princess costume.
Ella loved it all and smiled throughout the day.
Ella has done exceptionally well during the first 24 hours since her surgery. She is eating and drinking with few difficulties.
The Pain Management Team here is doing a great job to ensure Ella’s comfort during her recovery.
As we expected, ice cream still ranks highest on Ella’s list of favorite hospital foods.
We arrived at Cincinnati Children’s Hospital on Monday morning, shortly before the 08:15 “show time” for Ella’s 09:45 surgery. The “pre-surgical routine was brightened by the many friendly faces we have come to know over the past 18 months. Beth, one of our favorite PACU (Post Anesthesia Care Unit) nurses stopped by and played with Ella for about 15 minutes.
Four hours into the procedure, Ella’s surgeon sent word that he was unable to perform the planned procedure. Infection had compromised tracheal cartilage repaired in last April’s resection.
Instead, he performed a second “tracheal resection.” Thankfully, Ella was stable and safe through it all. The surgery concluded several hours later then originally scheduled. After debriefing with the doctor, I spoke with Lisa from the PACU. However, I could only bring myself to tell her Ella was safe. I called early the following day and told her the unhappy details.
Ella will remain in the hospital for two week. During which time she will undergo an IV antibiotic treatment regime of Zosyn (piperacillin/tazobactam, 1500mg/8 hours) and Vancomycin (254mg/8 hours).
Thank you for your prayers
Papa received big hugs from Ella this morning when he arrived in Cincinnati. Later, Mama conducted a proper “turnover brief” with the new troops (Papa) who would be relieving Mama.
As usual, Ella delighted in having so many family members together at one time. “Big Hugs” for everyone was Ella’s contribution during the transition.
Gabriella’s had a quiet Saturday – her condition remains essentially unchanged. The burn to her lip and tongue continue cause her significant pain and discomfort. As such, she requires regular doses of morphine.
As can be seen in today’s photo, Ella’s lip appears to have improved slightly. However, the blister on her tongue appears to be about the same as it was yesterday. Ella’s ability to eat from a bottle remains but at a much lower level.
On a brighter note, the test results on Lisa’s hemorrhagic thyroid cyst came back negative – no cancer! About three weeks ago a goose egg size lump appeared on Lisa’s throat. The doctors believed it to be thyroid cyst which had filled with blood. Last Wednesday, at the same time as Ella was in surgery, the doctors used a needle and syringe to collect cells for testing.
Bottom line: Lisa’s neck is back to normal and we all breathed a huge sigh of relief. All for now.
Thank you for your prayers.
Gabriella had a quiet night and rested comfortably – thanks in large part to the strong pain medications she receives every two to three hours.
When awake, Ella has been surprisingly lively. She seems determined to get her hands on the feeding tube in her nose. However, her endurance is extremely limited. After just a few goes at the feeding tube she runs out of steam and rests in a semi-sleeping state.
The large blister on Ella’s tongue remains 80 percent inflated, nevertheless, she managed to take several ounces of formula orally this morning. Encouraged by her ability to feed and overall condition, the doctors agreed to let us take Ella home rather than transferring her to the General Pediatrics Ward.
She arrived home shortly after noon and is resting comfortably in her own bed. Ella will continue to receive strong pain medications for the next few days. We are so very grateful for the outpouring of support we have received over the past few days.
Your prayers and encouraging words sustain us during these most difficult times. All for now.
Thank you for your prayers.
Gabriella spent three hours in surgery yesterday. During which, the doctors placed a plastic stent (hollow plastic tube) into the narrowing portion of her airway.
Unfortunately, Ella sustained a nasty burn on her lower lip (right side) and tongue (right front) – both her lip and tongue have large blisters. Although these injuries are clearly very painful to wee Ella, we are pleased the staff is working overtime to ensure she has ample pain medication available.
It appears the burn was caused by a piece of equipment which overheated. Thankfully, Dr. Cable discovered the problem before Ella sustained permanent damage.
A nasal feeding tube (NG tube) has been inserted so that food and oral medications can be introduced away from her mouth. All for now.
Thank you for your prayers.
Thank you for your prayers.
*This is the last picture taken of Ella before her lip was burned on 28 April. (This note * added on 28 Feb 2009.)
All for now.
Thank you for your prayers.
We had a truly frightening experience today when Gabriella’s trach tube blocked.
The Masimo Pulse Oximeter alarm alerted us to the possibility that something was amiss. Ella’s face was blue and she was not breathing when Mum and Dad arrived in her room moments later.
Everything happened very quickly but seconds felt like minutes. We removed the blocked trach tube from Ella’s neck and inserted the emergency trach tube which was close at hand. However, even with a clear airway Ella was not breathing.
Rescue Breathing: Although Ella’s chest inflated with each of the first two breaths blown into her trach tube, she still refused to breathe on her own. It wasn’t until the fourth rescue breath that Gabriella came sputtering back to life. She regained her normal pinkish color after just a few seconds of hard crying and coughing.
By the time the 9-1-1 Paramedics arrived (less than 5 minutes after we called), Ella was on oxygen and fairly stable. An hour later, Ella was almost back to normal – but still somewhat shaken.
We decided to keep Ella at home vice going to the Emergency Room, since the period of oxygen deprivation was so brief and since she seemed to be doing so well. The Paramedics supported our decision to remain at home since a trip to the ER would have undoubtedly resulted in her spending the night in the infectious environment of the pediatrics ward. Details to follow.
Thank you for your prayers.
