GETTING FURTHER. GETTING BETTER

The event, Fitness for a cause for baby Rusver under the MOGCHS Batch 1996 Project was a successful one!

First, we thank God for guiding and helping us generate funds for our son’s sake in a very fruitful manner. To all the people behind this endeavor, fitness for a cause and to all the people who had voluntarily joined this activity, thank you so much. https://www.facebook.com/photo.php?fbid=10200813281004911&set=t.100003238988185&type=3&theater

My family was overwhelm by the response of the people around.

APRIL 22, 2013

This month since Rus came out from the hospital, his vitality never sags down. His body is coping well from the previous stress and strains. Though when you look at him, he may looks like a new born even though he was already 3 months old.

So many interesting things that happen to him like he coos and smiles a lot. He loves to bath, no more agonizing cry. He enjoys watching the red-black and white pictures as he response to our phonetics and teachings. No more mittens as he can freely move his little fingers. Often he licks his little fingers.One incident that he was able to put his hand in his mouth while he was crying. Weired in deed! Though he has a little mouth.

GOOD NEWS! His septic arthritis was completely healed. We praise  GOD for that. No more swelling and he was able to move his right leg freely-both flexing and straightening. On the other hand, this is now the transition of his omphalocele wound. We are hoping for the best because his surgeon plans to repair him after 3 years. In God's grace, it will be a successful operation again with no  more horrible complications.

Here are the sequential photos of his tummy.

 

The upper right corner picture, the tummy looks like oblong because he do not have muscles to support his small intestines. What his surgeons prioritize is the liver because he has no more muscle during the 2nd surgery.

By the way, we are still working on his fistula yet I can give you the transition of it, too.


APRIL 24, 2013

I've been a mother for 13 months already (since I got pregnant) and I just cannot believe the change of emotions involved in the process. Everything I do is to make sure that Rus is comfortable or receiving the best care or being entertained. 

This day  we visited his doctor. He  got a jab, 6 in 1 vaccination (Hepatitis B, DPT, OPV/IPV and H. influenza B). He just shouted upon the the doctor poked his thigh with the needle. Then, I carried him reassuring that things were just fine. We talked to his doctor his possibilities for outdoor. He replied. "It's okay, yet avoid the crowd."

 He got no fever and no swelling. We are looking forward for his recovery though he still suffering his SBS.

Rus appearance after the many dosage of antibiotic.

Sequential photos of his fistula

Fistula with calmoceptine

Fistula with skin ulcer

Fistula with a clear skin. At this time we wear colostomy bag for protection

I created this video in order we can recall how Rus hurdle the tough times he had in the hospital.

RECONFINEMENTS

Checking of vital signs prior blood transfusion. Below is the blood being transfused to him.

SECOND CONFINEMENT

It was the last day for Rus to have a follow up-check up from his surgeon. We went to Capitol University Medical City. We had him do the complete blood count test (CBC) prior seeing his doctor. Bringing the CBC result, we heed our way to his doctor.The baby was having tantrums.  We couldn't decipher want he wanted. Only to find out that his fistula squirted a lot of watery poohs, all mess out in his belly.


We clean him up. Then, we gave him milk to keep him calm. He went to sleep. We gave the CBC result to his doctor and she observed our son. She decided immediately to admit him at once. She called our pediatrician, Dr. Absin for the urgent appointment. We left the hospital immediately and proceed to Madonna and Child Hospital.

It was so sad to know that baby Rusver was reconfined since from the week he was out fro the hospital.

The issue on the second confinement was his low  hematocrit  and hemoglobin. He needs  blood to be transfused to his body. It also shows from his series of CBC (complete blood count) that his white blood cells is high, showing the high presence of infections.

 It was 120cc of blood was consume on his second confinement.

At this point we had realized that our son frequently dislodge his intra venus (IV). A lot of  shooters tried. The maximum span of his IV is only 2 days. Each time they poke him,my boy would scream to the top of his lungs.I couldn't describe the pain he gone through specially when the IV will not draw back because they had to poke him again. Their could be a time that at the five attempts, all failed.How I would like to cry with him yet I felt numb already because I am helpless. Frequently I said "It's okay." although it's in contrary.

This second confinement, a lot of philanthropist came  to help the baby. We meet a lot of people from different walks of life. They came across in our path to help us. I owed so much their gratefulness.


We stayed only in the hospital for 8 days then we were discharged.

Cleaning of the omphalocele wound.

Just a day from discharge, we visited his pediatrician again. Rusver suffered cough and colds. The doctor just gave him oral medications for his cough and cold. Meanwhile we still continue his vitamins and other supplements.

Cleaning the fistula.

Three days after we went back to the doctor again because we noticed something strange on his right knee. His knee swollen and he can not straighten it, a;ways flex.  We go for x-ray. His pediatrician referred us to the orthopedic surgeon. His doctor worried upon the result because he was diagnosed of septic arthritis.

Worried of the news but we look forward of a better hope for him. We were very happy to have him home though we had many sleepless nights. We cleaned his fistula and omphalocele wound each time he asked for milk. Old friends and classmates came to visit us and gave donations We received a lot of donations from Non Governments Organizations(NGO's). too. In fact the ROTA Pilipinas come across about a trekking activity in benefit of our baby. http://rota.ph/th_event/trek-treat/

The eve of March 9, Rusver was rushed to the hospital because a lot of red spots spread all over his body.

I am a bit worried because his father was not with us. He was still on work duty. It was my family who bring me to the hospital. Reaching the place, we rushed to the emergency room. Rusver was nebulized after taking the vital signs.  He was crying a lot due to the discomforts. Then they put oxygen on him. I carrried him as we were transported to our room on a wheelchair.

THIRD CONFINEMENT

The third confinement was so difficult for us.He was diagnosed with septic arthritis, and neonatal pneumonia,
He had to take a lot of antibiotics and anti inflammatory medicine to heal the rashes. We met Dr. Diola, a infectious disease specialist. she is in control over his problems.

The following  day, Dr. Diola refered us again to Dr. Pimentel, a orthopedic surgeon, regarding his septic arthritis. Dr. Pimentel planned for knee surgery on his right knee. We agreed on it, yet at the realm of our hearts we tend to refuse because our son undergo a lot of surgeries already. It would be very traumatic to all of us.. However prior to the onset of the knee surgery, Dr. Diola issued us for X-rays. It was found out that his lungs is not yet healed  due to his pneumonia.So, immediately Dr. Diola called the surgeon not to continue the surgery because it might lead to severe complications.However, the surgeon still came and see us. Instead of having surgery, his knees was only suctioned to extract the puss. My baby cried again and again even though he had an anesthesia prior to the suctioning.
After a few days stay in the hospital, the issue on IV came again. A series of poking came along. How could a little one could sleep better if he will be awaken  again and again just for IV insertion?  I knew its very painful because he always produce a far flung cry. All the shooters in the ER and nurse station left no choice but suggested to his attending physician for cut down. The frequent dislodge lead him to a cut down issue. I have no choice because all his veins collapse and he had missed his medication 24hrs already. It takes four hours before the surgery was all over because Rus was keep on wambling during the procedure. He was not fully sedated, only a jab of anesthesia to numb the area for cut down. That night, the boy very uneasy. He had a loud cry. He was agonizing.  We do not know what to do.  We rushed  to the nurse station to ask assistance. All the types of pacifying techniques does not suit him. Then, the nurse gave him a paracetamol and it ends his discomfort. He made a sounds sleep.And of course as soon as I got her back to sleep, his nurse came in to do vitals and woke her back up. I know that they need to do vitals, but how is a kid supposed to get any better if they won't let them sleep?

The next day a horrible scenario happened. Rusver suffered a horrible diarrhea. A lot of liquid poohs  came out to his fistula, like water in a drain! It pretty awful. He keep on poohing and we clean him every hour or sometimes less. He always cried because he can't sleep. So my disturbances. It' s painful. I could fell that the liquid that comes out was warm. Each time the warm liquid will come out, his skin will turned very red. A lot of rashes came due to the irritations of his pooh. Indeed, the liquid was very acidic. It could peel off his skin. so many stresses. It was so pathetic in our part because we don't have enough rest. We make a triple shift in order one can assist me in time of dressing because Rus will have a tantrums and dressing session would be very hard while the rest of the family member can rest.Their must be three people to assist him while doing the dressing. The first shift was me, my hubby and the nanny. Next was me, my mom and dad.Third was my mother-in-law, nanny or sometimes my hubby again and me. Never I was isolated with my son. Every inch of  him I was there with him.

It came also that my helpmates were sick. My hubby was getting sick. My mom was sick. All got sick due to lack of sleep. Luckily I am the one was not sick in the room. For some reason this was one of the worst hospital stays we have had. Rusver was miserable in his situation and my hubby, Rosevelt and I weren't much better. I think a lot of it had to do with not getting any sleep. Rosevelt and I had to sleep in his room both of us shared in one bed.

The diarrhea was the reason of our prolong stay in the hospital.The cause of  the diarrhea was the in take of the weird antibiotics.

On the 1st day of April, we were discharge and we were happily bringing Rus at home. His doctors gave us his home medications for 10 days followed by recheck ups after a week. He seems to be doing much better now despite of the pooping.

Philanthropists who traveled very far just to gave their blessings to us. Thank you guys for your warm and loving heart. Actually, their still a lot of them yet I was not able to documented their presence.God knew who they were.
 
Recovery from Hospital Reconfinements

Rus was enjoying the serenity at home.  

 

This is philanthropist Madame Ana Barbara Oledan Lacandazo. A law student from Leyte who came to knew us through the net posts. She helped us in many ways for our son to survive. She just traveled from Leyte and visited us at home just to give his blessings.

A HEART THAT CARES

It was a dead end journey for our family to finance the day to day maintenance of baby Rusver. In spite of the situation, we were not hopeless about it. Through the initiative of Joann, my sister-in-law, we were able to sustain the maintenance of the baby. She went for a solicitations to her friends. I, too, make moves and solicited some of  my friends. My brother, Regie asked helped from different  agencies and other politicians under their foundation. Indeed many people from different walks of life came and donate for the baby's sake.Others were complete strangers but have a big heart to help those who were in need.

A package from Sandra Ligutum of Davao

I received unexpected response also from my classmates and friends.They were also willing to support my child. I received donations in fa form of cash, baby's toiletries, diapers, and other dressing stuffs.

Many people to pray for us also. Through prayers, our faith was strengthen. It brings bright hope from every dusky circumstances.

A group of NGO posted Baby  Rus story and my letter to the public through the CDO Blog to ask more charity.http://cdobloggers.com/save-a-little-angel/ 

HOME SWEET HOME

It is always part in our prayer that we wanted our Baby Rus would come home safe and sound Indeed our baby was subject for discharge last 8th of February yet due to some circumstances which beyond our control lead us to stay back for another day. The baby got fever and our bill worth half million pesos was still unsettled. 

On the9th of February was a very daring and breath taking episodes for us. My hubby and I went to the different doctors of our baby and asked for promissory and made negotiations with them regarding with the payment of their professional fees. His surgeons pay was waived and became 295,000.00 pesos instead of 327,000.00 pesos. We only paid them 200,000.00 pesos cash on hand and the rest of the 95,000.00 was made in a promise to pay it in a staggered basis. We promised to pay them 10,000.00 pesos per moth starting March 2013 to December 2013. Meanwhile his pediatricians was made into a promise to pay them by bulk when the sponsor from Philippine Charity Sweepstakes Office ( PCSO) worth 80,000.00 will come.

The PCSO helped was done through the initiative of the hospital and the follow ups of my husband. I could say that we were indeed blessed because the PCSO office dispensed money of greater value like us. Nonetheless, the office will usually give a monetary help of 10,000.00 pesos only as the peak for those who asked for financial aid.

On the other hand my sister-in-law, Joann, was so supportive in raising funds for us because the toiletries for the baby and other dressing maintenance was so expensive.She never hesitate to ask solicitations from her friends.My brother, Regie, made arrangements on our bills from the hospital in order we can go home considering we are subject for discharge already. Both the couple worked hand in hand in order we can eventually go home.Since our hospital bills sum up into 140,000.00 pesos and the only way to get out from the hospital is to pay it by bulk or to make a collateral item worth the amount of the bills and in payment of staggered basis. We came up to a decisions to pay 30,000.00 pesos cash as the initial payment and to collateral Rosevelt's motorcycle.Luckily, everything was settled and it pave all the way.

Before leaving the hospital our baby got fever again. I beg to his pediatrician not to hold us anymore but just to give us necessary medications for him.The doctor issue us for laboratory check. The baby must have Complete Blood Count (CBC) laboratory test prior leaving from the hospital. So far, the lab result was okay. He did gave us antibiotic to combat the infections of the baby.

We arrived home past 8.00 PM already. We were very happy because the baby was home at last!!

ICU LIFE

Rus life in the ICU was painful to us. Each time we will visit him a lots of "wiring" we could see. The monitoring of the heart rate will be very noisy each time he will cry. It will alarmed us.We hope and pray that he could eventually leave this place and go home safe and sound.

Each time we visit him, we contentiously pray over him.We still continue to witness how the nurses do the  dressing of his surgery. The mother wound (omphalocele operation) was still big and dusky in color.

One significant happening on this day was he was slowly extubated and he left from the incubator to the bassinet giving him a little freedom.

 
How happy we were that we were able to touch him freely.

FROM NICU TO ICU

Its been three days today after the repeat operation of baby Rus. This day we made a emergency baptismal for him. The officiating priest was from Mt. Carmel. Our immediate family came to witness the ceremony. His vitality is okay yet the main focus of the doctors was his wound and how to battle the infections. His platelet and albumin was low. The one of drains from his sides was still greenish while the other was clear.The greenish indicated the presence of the infections. His urine output is okay.They still on tract with his wound in order the infection will not escalate.


This photo (left side) shows conference between Rus's neonatologist, Dr. James Absin. He told us the condition of our baby. His surgeon, Dr Dures Fe Tagayuna informed us that our baby under blood culture sample to determine the type of bacteria or virus that lead his infections. Both agreed to transfer him to incentive care unit ICU in order the nurses can closely monitored him because the ratio for nurses and patients is 1 is to 1. Moreover, Rus's infection will not escalate to other newborns especially the premature ones.The infections were still prevalent in his body.

In the afternoon of that same day, he was transferred to ICU. Seeing him swept me with more pity. His operations were more visible here in the ICU than in NICU. Each time the doctors and nurses do nursing care for him, I could see it inch by inch. His tummy size, it seems bigger than his head, and the color is reddish-dusky.  The only advantage we had while he stayed in ICU was we could stay in the his room 24 hrs, 7 days a week and could also touch him.

We always visit Baby Rus  in the ICU. Sometimes we spent there, the whole day and night just to guard him. As a mother, I felt more at ease when I stayed with him. I felt the increase of our faith in our family. We became united as one family as we rendered our prayers for him. At this point only prayers is our weapon.

Lord increase our faith. Touch the baby my Lord for healing. Heavenly Father, greatest physician and healer. We need you for the recovery of our baby.