2022
Sunday, 13 Feb 2005:
The duties of a Grandfather are numerous and unending.
Pictured left is Russ helping Lucy put together her new doll-house – which Grandpa brought to Lucy from New Zealand. Gabriella continues to do well. She is adjusting to life at home and all that entails. All for now…
Thank you for your prayers.
Saturday, 12 Feb 2005:
As you can probably imagine, we try to follow a regular routine each and every day. When Gabriella (and Lucy) cooperates, Mum and Dad are usually able to meet the minimum requirements. However, there are times when nothing seems to go right and we struggle to complete the simplest of chores.
Those difficult moments have occurred much less frequently since Russ and Sylvia have been here to help us. We are very grateful for all of their hard word and their positive attitude. “Mum and Dad: We Love You! Thank you for all of your wonderful help.”
Pictured left is Russ helping with one of the more enjoyable items on the daily routine. All for now…
Thank you for your prayers.
Friday, 11 Feb 2005:
Gabriella had a quiet and restful night after her busy day at the hospital. Yesterday, we were visited for the first time by one of the nurses who will be stopping by once a week to check on Ella’s progress. As this was the initial visit, there was much paperwork and some time spent getting to know one another. These short weekly visits are the first of three types of nursing support we hope to receive.
The purpose of these weekly visits is to help the parent’s of “medically fragile patients,” like Ella, identify potential problems between regularly scheduled visits to the doctor. The second type of nursing support allows the parent care-givers some time off (16 hours per month) to decompress and relax, hence the name “respite nursing care.”
Although Ella’s condition and our situation merit this type of nursing support, it is currently unavailable due to the shortage of nurses here on the islands. It is likely that Ella will also qualify for the third option – “full-time nursing support” (56 hours per week or more) – however, the nurse shortage is once again a factor.
Your continuing efforts to help us find nursing support is greatly appreciated. And, as always…
Thank you for your prayers.
Thursday, 10 Feb 2005:
Yesterday marked the completion of Gabriella’s first week at home. To celebrate, Mum, Dad, and Ella went to…the hospital (where else?) for her scheduled check-up. Dr. Cable was very pleased with how she looked – both inside and out.
After hearing about how Ella and, Mum and Dad fared over the previous seven days; Dr. Cable inserted a tiny flexible scope into Ella’s trach tube to examine her airway. Everything inside checked good! On the outside, he prescribed some medications for the rash around her neck.
All in all, he was very pleased with her progress. Ella also received a special vaccine (Synagis) to ward off one of the really nasty respiratory illnesses (respiratory syncytial virus – RSV). Ella was weighed prior to her vaccination – she is up to 5.66 Kg or 12 lbs 8 ozs.
Pictured left is Gabriella napping after the first dose of her rash medication – it works amazingly well. All for now.
Thank you for your prayers.
Wednesday, 09 Feb 2005:
Lisa’s parents stopped on their way from New Zealand to Halifax for a short visit. Lucy truly benefits from the additional attention Russ and Sylvia provide. On Tuesday morning, Ella’s three “Aunties” came to check in on their little friend. Auntie Carrie, Auntie Lilli and Auntie Sharon are all part of the Early Intervention Program which is run by Easter Seals on this side of the island (In Hawaii, “Auntie” is used as a term of respect and endearment).
We are all hopeful that Auntie Lilli may soon be able to resume some aspects of Ella’s physical therapy program – she is still incredibly alert and seems to crave stimulation. Auntie Lilli taught Mum and Dad their first few words of Early Intervention Program, which will help in communicating with Ella. We learnt “are you thirsty?”, “are you hungry”, “drink”, “eat”, “please” and “thank you”.
Pictured left are Russ, Sylvia, and Ella. All for now.
Thank you for your prayers.
Tuesday, 08 Feb 2005:
Gabriella was restless throughout much of yesterday and all of last night due to a nasty rash around her neck. Unfortunately, it is fairly common problem for infants with trach tubes. It occurs when moisture from the warm-air humidifier – which conditions the air that Ella breathes – saturates the strap that holds her trach tube in place.
(Trach Tips: Use of “Chapstick, original” – no flavors – on the affected areas. This works amazingly well, Ella had a horrible rash under her chin. The rash literally went away in about 36 hours.)
This presents a bit of a conundrum since she needs the moisture from the warm-air humidifier to keep her airway and lungs in good working order. This seems like a good place to put in a plug for the nose – one of God’s great creations. Ella visits her doctors tomorrow, so we are hopeful they will provide some relief. All for now.
Thank you for your prayers.
Sunday, 06 Feb 2005 (Noon):
Gabriella and the entire family enjoyed a quiet Sunday. Mum and Lucy had a well deserved break at the beach near our home, while Dad and Ella did some light chores around the house. Ella is adjusting well to being at home again – she sleeps soundly each night from about 9 pm until 6 am.
During daylight hours she keeps herself amused by playing with the toys that hang above her bed, eating, and napping. However, her favorite pastime is to pull on the sensor wires that are attached to her heart-rate and oxygen saturation monitors.
This results in the alarms going off, followed by Mum and Dad running to her side. Once everyone is assembled in response to the alarm, she flashes her best “Daddy’s girl” smile to let everyone know that she’s really in charge.
Pictured left is Matt, Lucy, Ella (pre-Trach), and Matt’s Godparents – Ardie and Pete Van Well. All for now.
Thank you for your prayers.
Saturday, 05 Feb 2005 (8 pm):
While at home, Gabriella normally wears two different types of monitors. The monitors alert Mum and Dad if Ella’s heart rate, respiration rate, or oxygen saturation level stray outside of fairly narrow windows.
Additionally, she is required to breathe warm humidified air in order to keep her airway and lungs moist. Ella endures the discomfort of wearing her equipment with the patience of Job. So as you can imagine, bath-time is a very special treat for both Ella and Mum.
Thank you for your prayers.
Friday, 04 Feb 2005 (5 pm):
Gabriella is doing well at home but misses all of the attention she received from the doctors, nurses, and staff at Tripler. Mum, Dad and Lucy all love having Ella home and are adjusting well to the associated demands. Yesterday we received outstanding news from Ella’s pediatric urologist.
The nuclear medicine renal scan showed NO SIGNS of damage to GG’s kidneys. We are so very thankful she is healthy in that department and have high hopes she will continue to make good progress on all other fronts.
Picture left is Dr. Anne Naclario, the Intensivist from the Pediatric Intensive Care Unit (PICU). Anne has looked after Ella with tender loving care since they first met back in September.
Thank you for your prayers.
Thursday, 03 Feb 2005 (4pm):
Gabriella was discharged late yesterday afternoon. Her transition from hospital to home was uneventful – much to the relief of Mum and Dad.
Gabriella’s room at home is now equipped similarly to her hospital room: Pulse and Oxygen Saturation Monitors, Heart Rate Monitor, Warm Air Humidifier, Suction Machine, and Supplemental Oxygen.
Regardless of all the machines, Ella’s room is still warm and cozy now that she is back home. Although we are quickly settling into a routine, it is clear to us that we are in need of additional help. Our search for nursing help continues. All for now.
Thank you for your prayers.
Wednesday, 02 Feb 2005 (6am):
Gabriella had a bit of a rough night last night, mostly due to the commotion associated with getting a new roommate at 2 am. Scheduled for this morning are the final preparations for discharge and the transition to caring for Ella at home.
Both Mum and Dad are excited (and a bit nervous) about the prospect of caring for Ella at home but both are well prepared for this challenge. Pictured left is Gabriella with one of her best friends, Dr Burtis. Dr Burtis is part of the outstanding Ear, Nose, & Throat (ENT) team at Tripler. All for now…
Thank you for your prayers.
Tuesday, 01 Feb 2005 (Noon):
Once again Gabriella slept well overnight – 10 pm to 6 am. Ella’s morning routine began with a light bath and diaper change, followed by a new outfit and new bedding. Once she was swaddled and tucked back into bed, GG received her first bottle of the day. She continues to eat well and we are hopefully she will gain another pound or two prior to her next surgery. Yesterday was a full day for GG. At 10 am the Neonatal ICU (NICU) nurses established an Intravenous (IV) line.
GG is known as “hard stick” because she has such small veins, so we were delighted when the pros from the NICU “threaded the needle” on the first attempt. Since she is a “hard stick” they used one of the veins in her scalp. While some parents are squeamish about “head sticks”, for GG it is often the best choice because the veins there are clearly visible.
Next, Ella received an injection of a radioactive isotope, Technetium-99, which localizes and accumulates in the kidneys. A few hours later she underwent an imaging scan, during which a gamma detector took high-resolution images of her kidneys from several angles.
The purpose of this test is to determine if Ella’s kidneys were damaged by the Urinary Tract Infection (UTI) she had last month. We should hear the test results in the next day or two. Until then we will keep busy disposing of nuclear waste filled diapers (see today’s photo). All for now.
Thank you for your prayers.