Month: February 2005

Monday, 28 Feb 2005:

Today we met again with Barbi and Leilani, two of the kind ladies who are attempting to help us arrange nursing care for Gabriella.

Initially, we thought the shortage of nurses here in Hawaii would be the primary obstacle to home nursing care. However, that has not been the case, primarily because of your efforts to help us find nurses by getting the word out.

Instead, the problem is one of funding. TriCare, the military’s insurance company, denied the doctor’s request for home nursing care. They denied the request even though everyone, including Tri Care, agrees that Ella’s condition meets the “need threshold” for home nursing care.

It appears the basis for their denial is the fact that Tri-care knows other agencies, such as Medicaid, will eventually provide some funding for home nursing care.

Until then, Mum and Dad are on watch 24 hours a day / 7 days a week, except for the four hours of “respite nursing care” we receive each week. All for now.

Thank you for your prayers.

Sunday, 27 Feb 2005:

Gabriella continues to do well. She looks great and she seems very comfortable. Today one of Ella’s friends from here in Kailua stopped by for a visit. Thanks for visiting Laurel, you always lift our spirits. Pictured left is Laurel and Ella. All for now.

Thank you for your prayers.

Saturday, 26 Feb 2005:

Gabriella had another good night. It seems that she is completely over the virus which gave her so many problems last weekend. What a difference a week makes.

Earlier this week, we had our first “respite” nursing visit. Although it was only for four hours, it is clearly a step in the right direction. The nurse, who is named Pixley, is exactly the type of individual we hoped would be assigned to care for Ella.

Having worked for a number of years in neonatal intensive care units (NICU), Pixley clearly appreciates the seriousness of Ella’s condition. Moreover, her experience as a NICU nurse and attentive professional manner, enabled Mum and Dad to relax for a bit.

We are hopeful there will be sufficient funding for her to make additional visits in the not too distant future. Pictured left is Pixley and Ella. All for now.

Thank you for your prayers.

Friday, 25 Feb 2005:

Yesterday we had the good fortune to meet with two especially caring women, Mary Lancaster and Leilani Mejia.

Mary and Leilani work as Case Managers for a non-profit organization that supports Medically Fragile Patients such as Gabriella. They helped Mum and Dad gain a thorough understanding of the various programs and agencies which are available to provide support to Medically Fragile Patients and their families.

Additionally, they are able to remove some of the roadblocks that have prevented us from receiving home nursing care for Gabriella.

In short, they are an answer to our prayers and we are truly grateful for their expertise and compassion. All for now.

Thank you for your prayers.

Thursday, 24 Feb 2005:

Gabriella’s physical therapist, Aunti Lilli, visited today.

She continues to be amazed by Ella’s ability to bounce back after each of her medical procedures. Both Ella and Mum love their sessions with Aunti Lilli, as they are a welcome break from the routine. Moreover, it is so rewarding to see the improvements that Ella makes with each visit and to learn new things.

Pictured left is Ella in her new “Bumbo” seat. It is a very stable seat that provides a great deal of support to Ella as she works to develop upper body strength and balance.

Later, Aunti Lilli taught Mum how to give Ella a proper massage. As you can probably imagine, Ella LOVED her massage therapy. All for now.

Thank you for your prayers.

Wednesday, 23 Feb 2005:

Gabriella made her weekly visit to the Tripler ENT clinic today.

Dr Cable was pleased with her overall appearance as well the status of her trach tube and airway. Naturally, Ella showed no signs of having been ill over the weekend.

Instead, she was her bright and lively self.

The big news from that visit is that we set the date for Ella’s next surgery – March 9th. Now we just have to decide which surgical procedure to choose.

Pictured left is Lisa’s Mum, Sylvia, feeding wee Ella. All for now.

Thank you for your prayers.

Tuesday, 22 Feb 2005:

Gabriella’s condition has improved slightly over the past 24 hours.

Her temperature appears to have stabilized and she seems more comfortable. Although it is likely that it will be a few more days until Ella is back to normal, this improvement is a huge relief to both Mum and Dad.

Pictured left are Lucy and Mum at the playground on Kaneohe Marine Corps Base from last week when her parents were here visiting.

Thank you for your prayers.

Monday, 21 Feb 2005:

Last night was another difficult one for Ella. She was awake from 2 am on with a fever.

The monitors we use to ensure Gabriella’s safety seem at times to be a mixed blessing. While they enable us to know her precise heart rate, oxygen saturation level, and respiration rate, which is helpful to us – it is unsettling to watch her heart race and oxygen levels fall as she fights against the fever.

Since her fever has not “spiked” above 102F we are fairly confident her fever is not due to a bacterial infection (which would mean a trip to the hospital). We continue to watch her very closely and try to keep her as comfortable as possible.

Pictured left are the two monitors we use to track Ella’s vital signs.

Thank you for your prayers.

Sunday, 20 Feb 2005:

Gabriella’s fever continues to present problems for us. Luckily, she is responding well to the alternating doses of Tylenol and Motrin, which is how we are trying to keep the fever in check.

However, she still has periods where the fever breaks through and she becomes distressed – those times are no fun for any of us. Last night was another night of little sleep for Ella, Mum, and Dad. Details to follow.

Pictured left is a photo that was taken a few weeks ago of Lucy and her wee Sis.

Thank you for your prayers.

Saturday, 19 Feb 2005:

Gabriella had a difficult time last night. It appears that despite our best efforts to protect her – she may have contracted a cold virus.

While such illnesses are merely an inconvenience to most folks, the fever and additional secretions pose real problems for Ella because of her trach tube.

Details to follow.

Pictured left is a photo from last week of Ella with her “Gran”.

Thank you for your prayers.

Friday, 18 Feb 2005:

Yesterday, Lisa’s Parents (Russ and Sylvia) resumed their journey back to their home in Halifax, Nova Scotia.

While here, they helped out with every aspect of caring for Ella and Lucy. They both worked hard from sun up to sun down, and always with a smile.

In addition to all of their hard work, they provided the love and moral support we needed so very much during this difficult time. We miss them greatly and look forward to their next visit.

All for now…

Thank you for your prayers.

Thursday, 17 Feb 2005:

One of Gabriella’s new best friends, Barbi McAllaster, stopped by this week to meet Ella in person. “Auntie Barbi” is the coordinator for Castle Medical Center’s Home Care Division. She is one of the people who are helping us arrange home nursing care for Ella.

Even though wee Ella is not a patient at Castle Medical, Barbi has – out of the goodness of her heart – devoted many hours to our case. We are especially grateful for her expertise and her willingness to lend a hand.

All for now…

Thank you for your prayers.

Wednesday, 16 Feb 2005:

Yesterday, Gabriella made her weekly visit to the ENT (Ear, Nose, & Throat) clinic at Tripler. In order to minimize Ella’s exposure to the infectious environment of the hospital, each of these visits are very brief. The ENT staff is exceptionally helpful in this regard. They whisk us into a treatment room, well away from the other patients, as soon as we arrive.

The doctor then uses a thin fiber optic scope, which is inserted into Ella’s trach tube, to view her tracheal airway. Everything checked good, so we were on our way again in less than 15 minutes.

The doctors continue to emphasize the importance of keeping Ella healthy prior to her next surgery – currently scheduled for the second week in March.

Pictured left is Lucy doing one of her favorite things – using the instant hand sanitizing gel “Purell” so her hands are not “mucky”.  All for now…

Thank you for your prayers.

Tuesday, 15 Feb 2005:

Valentine’s Day is a special holiday in the Gentry household. The addition lady Ella makes it even more special this year. Cards, gifts, hugs and kisses were exchanged all around first thing in the morning. Ella was in high spirits – as she most mornings – and enjoyed being off all of the monitors and machines in her nursery.

Lucy made lovely cards for the occasion and enjoyed opening (and eating) her presents. Mum dressed in Valentine pink for the occasion and showed the girls how to enjoy Godiva chocolates for breakfast!

Dad reflected on how lucky he is to have so many beautiful ladies in his life. All for now…

Thank you for your prayers.

Monday, 14 Feb 2005:

Each day we are reminded of our good fortune, good friends, and God’s love and blessings. Some days it may just be something small, like the twinkle in little Ella’s eyes when she smiles at us as we care for her. Other days it may be a card in the post, an email, or note in our guestbook, which warms our heart and reminds us of the many prayers that are said each day for our family.

Sometimes it is just the firm handshake of a friend with a – look you square in the eye “howyadoing?” A full meal – prepared and delivered to us by Sandy (a friend of our neighbor, Carol, who we had never met, but who has been praying for Ella) provided one of this weekend’s reminders.

Another was when Lucy’s friend Elsa stopped by for a visit.

Pictured left is Lucy and Elsa playing in the sprinkler.  All for now…

Thank you for your prayers!