Healthcare for Arlene

Update posted by Shalimar Sulisto On May 11, 2017

Weight: 3.9kg

It has been almost three weeks since the last update. Not much has changed other than Arlene's weight and it's steadily going in the right direction. She briefly struggled coping with the tube the first few weeks, and the discomfort led Arlene to rub her face quite frequently that the tube would have to be adjusted so it wouldn't interrupt her feeding. Now she seems to have completely adjusted to her new normal. Unfortunately, there's no progress with the strength/development of her throat muscles. The doctor recommends we continue the physiotherapy and wait.

Thank you to those who have donated and are following her updates. Your financial support has helped tremendously with hospital bills, tests, follow up doctor visits, and when the time comes it will also help her get the palatoplasty surgery she needs.

God bless and peace be upon you.

Add a Comment

Update posted by Shalimar Sulisto On Apr 20, 2017

Weight: 3.45kg

Arlene is sleeping more these days and beginning to have chubby cheeks. Yesterday she had another follow up visit to the doctor, her feeding tube was changed and she got her first PCV vaccine. https://familydoctor.org/pneumococcal-conjugate-va...

The doctor and the rest of us here are very happy with the most recent weight gain, and we hope she continues to make progress with her feeding/swallowing mechanism.

Thank you all for your time and support.



Add a Comment

Update posted by Shalimar Sulisto On Apr 13, 2017

Weight: 3.1kg

Age: 2months and 24 days.

Arlene is finally back to her birth weight and steadily showing progress. Yesterday we went for her first doctor's appointment after being discharged from the hospital last week. Dr. Klara changed her feeding tube and gave DPT, Hepatitis B, and Polio vaccines.

Doctor also encouraged Arlene's mother to stay positive, and reminded us that Arlene must be at least 10kg before she can proceed with the cleft palate surgery (palatoplasty). She consulted with the oral surgeon, who recommended waiting until baby is in prime condition before considering a procedure.

For the time being, we wait.....and as we wait, we closely monitor her oral/respiratory muscles and hope they'll develop stronger as she gains more weight.


Add a Comment

Update posted by Shalimar Sulisto On Apr 06, 2017

Weight: 2.99kg

Arlene was discharged from the hospital this evening and is now on her way home to stay at our house.

Eye test result from April 4th showed no signs of CMV infection present, and the newest liver test taken yesterday revealed a surprisingly positive turn in her GOT/GPT levels. As the doctor said this morning, "it seems to be improving on its own". For Arlene, this means not having to endure one month long hospital stay and daily injections to treat the infection. The tests are completed, and she's safe from long term organ issues.

She is still connected to the feeding tube, and unfortunately will remain so until doctors can see more development in her respiratory muscles / feeding and swallowing mechanism. Without the tube she doesn't get any nutrition, therefore it's necessary. The follow up doctor's appointment will be next Wednesday, April 12.

The objectives now are:

1. Get Arlene up to speed with her weight, by gaining 200grams or more /week.

2. Train respiratory muscles with physiotherapy so she can consume food normally and therefore be free from the feeding tube.

3. Cleft palate surgery.

I'd like to note that she was admitted to the hospital at 2.5kg and today she weighs almost 3kg. Arlene's mom was smiling as we were leaving the hospital. We know the journey is nowhere near the finish line, but it's such a great feeling to see hope in her mother's eyes and a sense of relief to know that her baby is doing better than where she was a week ago.

Thank you to those who have participated in this campaign and we hope for your continuous support.

Add a Comment

Update posted by Shalimar Sulisto On Apr 04, 2017

Weight: 2.96kg

Met with the doctor at Bunda this morning at 6.30. Hearing test that was done yesterday at RSCM came back normal. Abdomen ultrasound result from April 1st was as stated in the last update (all is well except for liver which shows enlargement). Today she is scheduled for her eye test at the Jakarta Eye Center.

Altogether the main issues now are:

1. Congenital CMV infection - which can be treated with Ganciclovir. First we need to complete the round of tests, and we are now close to the end. After the eye test today, one more liver test tomorrow and doctors should be able to determine how extensive the treatment will be. https://www.drugs.com/cdi/ganciclovir.html

Due to the high volume of patients and different location of each test, the nurses haven't been able to schedule more than one test per day.

2. Laringomalacia - (literally, "soft larynx") is the most common cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. It can also be seen in older patients, especially those with neuromuscular conditions resulting in weakness of the muscles of the throat. However, the infantile form is much more common. Laryngomalacia is one of the most common laryngeal congenital disease in infancy and public education about the signs and symptoms of the disease is lacking. (https://en.wikipedia.org/wiki/Laryngomalacia)

Arlene has weak respiratory muscles that is affecting her food intake. As previously mentioned she struggles with sucking and swallowing milk. Growth and Development doctor has switched the feeding tube to come in through her nose, so the mouth is free for Arlene to train the muscles with a pacifier. We hope as her weight improves, her feeding and swallow mechanism can develop as well. In the meantime feeding tube and daily oral/respiratory physiotherapy are required.

Thank you all and have a great day.


Add a Comment

Update posted by Shalimar Sulisto On Apr 02, 2017

Weight: 2.86kg

Yesterday evening Arlene had the abdominal ultrasound to see if her organs are functioning normally. In preparation for the test, she had to fast for six hours, which is why she only gained 30grams from yesterday. Nonetheless, she's still gaining weight. The results of the test came today but I haven't received the update from the doctor. When I spoke with the attending nurse, she could only share that Arlene's kidneys are normal and her liver is still enlarged. The nurses are scheduling an eye test for tomorrow at Jakarta Eye Center and hearing test at RSCM (Rumah Sakut Cipto Mangunkusumo) for Tuesday. This is to see whether the CMV virus has affected both her sight and hearing. If it has not, then she is safe from having to undergo futher extensive treatment.

I plan on visiting Arlene early tomorrow morning and hope to see her doctor for a detailed explanation on her test results. Thank you all for your kind support.



Add a Comment

Update posted by Shalimar Sulisto On Apr 01, 2017

Weight: 2.83kg

Arlene gained another 130grams, weighing at 2.83kg this morning.I met with one of her doctors who said her sucking reflex is quite poor, which was the major cause of her weight loss since birth. She has a hard time latching on to her mother and bottle, so after a short time she would get tired of drinking. In addition, the CMV infection has resulted in inflammation of her liver and minor infection of the bladder. Lastnight they administered the antibiotics for bladder infection, but in order to determine which path to treat her liver, doctors still need to conduct the ultrasound for her bladder, liver and kidneys. She was taken to the Hermina Hospital in Jatinegara this afternoon for the scan, and we will receive the results tomorrow. The brain scan lastnight shows the infection has NOT spread to the brain (no midline deformity/no presence of brain calcification). Thank you to all of you who donated today. With much gratitude for your contribution, I wish you all good health and peace. Let's hope for a better tomorrow.


Add a Comment

Update posted by Shalimar Sulisto On Mar 31, 2017

Weight: 2.70kg

Arlene has gained 140grams with help from a feeding tube and was discharged from the NICU (Neonatal Intensive Care) this morning. She is now rooming with her mother (Ros) in the Children's ward. However, the TORCH (toxoplasmosis, rubella, cytomegalovirus, herpes simplex and HIV) test results revealed that she has CMV (cytomegalovirus) infection. http://kidshealth.org/en/parents/cytomegalovirus.h...

Before deciding on a treatment, the doctors will conduct brain, and abdomen ultrasound. We will receive results of the brain scan tomorrow morning. At this time everyone is just relieved that she is back together with her mother. We continue to pray together and hope for a better tomorrow.

Add a Comment

Update posted by Shalimar Sulisto On Mar 30, 2017

Weight: 2.56kg

Last night, Arlene spent her first night away from her mother at the NICU. Today she had a full blood work done, urine test, liver test, TORCH, and had visits from the nutritionist doctor and growth and development doctor. After observation, doctors concluded that her sucking reflex needs to be improved with physiotherapy. In addition, there seems to be a layer of soft tissue in her throat that prevents her from swallowing normally. Therefore tomorrow the ENT doctor will perform an endoscopy to hopefully find the source of the problem. We hope Arlene can be moved out of NICU tomorrow into a regular room, so that mother and baby can be reunited.

Add a Comment

photo

Miroslav Villacorta

Backed On May 17, 2017 Amount Hidden

photo

We are thrilled to have this opportunity to make our first charity contribution as a married couple!

Clark & Yumi Griffith

Backed with $400.00 On May 01, 2017

photo

Tom & Shal, Great cause supported by great people. Honored to participate. Hope you both are well. Larry

Larry Cohen

Backed with $300.00 On Apr 18, 2017

photo

A very noble thing you guys are doing, good luck with the rest of the campaign!

Patrick Archambault

Backed with $200.00 On Apr 11, 2017

photo

Kim and Matt Yu

Backed with $100.00 On Apr 10, 2017

photo

Anonymous

Backed with $500.00 On Apr 07, 2017

photo

Anonymous

Backed On Apr 06, 2017 Amount Hidden

photo

Anonymous

Backed with $25.00 On Apr 06, 2017

photo

Anonymous

Backed On Apr 06, 2017 Amount Hidden

photo

Anonymous

Backed On Apr 06, 2017 Amount Hidden

SHOW MORE COMMENTS
Add a Comment

photo

Shalimar Sulisto

Campaign Owner

send a message

photo

Dhaval bhatt

Following Since Jul 04, 2017

photo

Kerry Courtice

Following Since Apr 06, 2017

photo

Nurbaiti Hafmaya

Following Since Apr 06, 2017

photo

nea luiginni

Following Since Apr 06, 2017

photo

bas paumen

Following Since Apr 02, 2017

photo

Mardiana Budi

Following Since Apr 02, 2017

photo

Adam Worthington

Following Since Apr 02, 2017

photo

C. Waite Maclin

Following Since Apr 01, 2017

photo

David Burke

Following Since Apr 01, 2017

photo

David Burke

Following Since Apr 01, 2017

SHOW MORE FOLLOWERS