All The Wrongs Have Been Made Right

I've waited for more than 3 months to post this update as I want to give Theodore's body the adjustment it needs. So far, Theodore has produced normal stools twice already. He still poops numerous times per day but with a decrease  in volume and an improvement in appearance. Stools are no longer as water as before. 

Overall, he maintains a happy disposition. He walked exactly a month after his third and last surgery. He talks - A LOT. He can pronounce simple sentences in the Bisaya dialect. He is his own little person, and he is very expressive of his likes and dislikes. 

The only reminders of everything he has gone through are the two long scars in his tummy. Whenever he meets someone for the first time, he would raise his shirt to show off his battle scars. He has finally gained weight too. Yehey! Two days ago, he weighed in at 10.3kls, which is not bad for an 20-month old baby. 

Looking back, I can confidently say that 90% of the wrongs have been made right. 

It pains me to accept this but we have made a lot of mistakes when he was younger. I allowed myself to be stressed the whole time I was pregnant with him. Although I went to every single check-up, it wasn't enough to compensate for the emotional trauma and physical excursions of working and living in Manila. I knew I should have taken better care of my body when he was still inside. 

We made a mistake in choosing his pediatrician, who I have thanked numerous times in previous posts. She has failed to recognize all of Theodore's symptoms, and have repeatedly brushed off our concerns of his failure to gain weight and frequent illnesses. I remember my husband, Marc, recorded the times Theodore would suddenly develop fever (complete with dates, time and temperature) to show the pedia. But she just said it could be because of the environment. We used to live in a 2nd floor apartment, and in a relatively nice area in Makati. We moved to change the environment, but Theodore was still the same. 

We made a mistake when we allowed the pedia to choose Theodore's other doctors. One doctor said she couldn't find the thymus, and I cried my heart out. It was very scary for me, as a mom, to be told that your child's immuno-compromised because I know that meant a bleak future for him. 

We made a mistake when we waited too long to come home. I was afraid of letting go of my job then because it was a once-in-a-lifetime opportunity for me. I was just getting accepted as a true part of OPAPP-OSEC (although I have been there for more than a year). I have made friends and contacts, and I was finally having fun. If  I had decided to come home earlier, Theodore wouldn't have to suffer too long. 

When we found out that I was pregnant with Theodore, I must admit that I felt disappointed. I've just started a new job and it was not the right time to be pregnant. But I loved him the first time I saw him as a bleep in the monitor of the ultrasound machine. We planned his introduction to his big brother, and we even involved Kuya in all the preparations for Theodore's arrival. 

But you know, all the mistakes we made guided us along this difficult journey. They have made this triumph sweeter. We learn from our mistakes, and we are forever grateful for the people who have supported us, prayed with us, laughed and cried with us, and even stayed up late to wait for Theodore to get out of the operating room. 

It has been a long and stressful journey towards recovery, but Theodore is such a fighter. Today, you cannot even see any sign of his past when you look at him and see him smile. You cannot believe what he went through to continue to live when he talks and plays. 

Thank you for being an instrument of God's grace on Earth!

Theodore 2 weeks after his last surgery. He has forgotten all the pain, and looked completely happy. :)

Theodore's New Extended Family

We are blessed. Despite everything, we are blessed. 

On 27 March, friends in Dubai came together to do a photo shoot for a cause. Their beneficiary? Our little Theodore. We'd like to call them friends...even family...even though we have never met them because they took the time to show their love and share their blessings with our little fighter. These are the people who help us restore our faith in humanity. These are the individuals who are willing to help out regardless of nationality, distance and personal differences. Because of them, we are truly blessed. 

Theodore continues to gain weight. In fact, he has successfully maintained his weight - more than 9kls. - and this is such a wonderful achievement. He stands unsupported, he dances, he smiles and laughs a lot, and he talks a lot too! He continues to have a happy disposition. He has the natural ability to lift your spirits with just a smile. He truly is an angel. 

On April 15, Theodore will go under the knife for the last time. We are confident that like the past two surgeries, this third one will be a success. We are confident that his doctors will take good care of him. After all, they are the best in Mindanao. We have faith in God and we believe He will continue to send his Angels to watch over our little Theodore once he's inside the operating room. 

Theodore is a blessing, not only to us, his family, but to all of us. Through him, we came together as a family. We came together with one cause and that is to save him.

Thank you very much. 

The Gift of Thank You

The past months have been crazy for the family. We found out that Theodore needs surgical help and the required amount is huge. We definitely couldn't pay for all three stages of the operation. But when I asked for help and posted my plea online, help flooded. Prayers overflowed and my family is overwhelmed.

Thank you to...

...my family for the emotional and financial support. Mama was there the whole time. She had to miss work for weeks to be with me and Theodore. Papa had to get a loan to cover some of the expenses for Theodore's first operation. He had to pay back the loan for six years as salary deduction. My sister, Ikit, and her hubby, Daddy Edward, stayed at home to take care of Kuya Nathan and to process documents in my behalf.

...my husband, although he was not there to physically care for Theodore, I know he prays every night for baby's recovery and he works hard every day to earn money for the next surgery. Ate Janette and Fay Ann, thank you for helping us out financially; and to Mamang, who has been crying since Theodore's first surgery, thank you for asking the Carmelite Sisters to pray for him. To Even and Kuya Shernan, I know you are worried; don't be, your nephew is such a strong fighter.

...my relatives, thank you for proving that blood is thicker than water. Thank you for reaching out to extend help Ate Dangkai, Kuya Batit, Mama Becky, Tita Ching, Uncle Bonnie, Uncle Danny O., Auntie Leny, Auntie Gloria, Tita Lulu and Uncle Danny I. Thank you also for finding ways to get Theodore's much-needed blood, Mama Nenet and Papa Tony. Thank you, Te Sharon and Uncle Allan, for the loan and for helping me get funding from Cong. Dayanghirang and soon, from PCSO too. Thank you also, Tita Yndang, for processing my request for financial assistance from Governor Malanyaon, Vice Governor Almario and the Board Members.

...my OPAPP-OSEC family, thank you for remembering Theodore. You have proven that distance will never erase the (good and bad) times we've shared and the memories created. You still have the same love and care for the little fighter.

...my Speedy Publishing family, thank you for being most considerate. This is the first time that a boss from the US called my personal phone to check on me and my child. Thank you for sharing your blessings. Family is family regardless of where we hail and what our nationalities are.

...my two other bosses. Thank you, Sifu Matt, for understanding despite my absences; and for sharing your blessings too. Thank you, Murray, for not kicking me out. I know that since our working relationship started, I've already missed so much work. But despite my absences, you still shared your blessings with Theodore. I shall work harder to make up for the days I was gone.

...Drs. Aquino, Manalaysay and Palabyab, I got the best birthday present because of you. Theodore's first two surgeries have been very successful. You fixed him and kept him safe. You also allowed us to go home and settle the remaining balance when we can. Thank you.

...the DMSF medical staff, especially to Doc Hannah, thank you for taking care of my little boy. I know he was a toxic patient and his case was confusing but thank you for going the extra mile to encourage his speedy recovery.

...my barkada. We all have our problems but when Theodore got sick, you made him your priority. Thank you for the reassurances and for the kind words. I am grateful for the years of strong friendship. We have one more surgery and our baby will be better. We can finally tag him along the next time we have a get-together.

...my high school and college friends and colleagues. I know we have not seen each other for years and yet, you responded when we needed help. Thank you. You are true friends.

...my online friends. You have never met Theodore. Some of you may not even know me and my family personally but you shared our posts for help and you even sent money to add to our funds. Thank you very much.

...my brods and sis. Thank you for the kind thoughts. Brod Rey and Kibz, thank you for helping.

...the owner of Waysingaw, who didn't accept my payment when I needed to print Theodore's pictures and documents as needed requirements attached to my request for financial assistance.

Theodore is OUR baby. I gave birth to him, his father gave him his name but all of you helped to keep him here. Thank you and may God continue to shower you with blessings.

Theodore: Scarred but Still Fighting

On February 2, 2015, Theodore had his first surgery. This surgical correction of the malrotation of his small intestines is long overdue since this is a congenital condition that should have been diagnosed during the many hospital visits and checkups he has had. Unfortunately, none of the seven doctors he has seen in Manila has diagnosed him correctly. Yes, they all saw the distention in his abdomen, they all saw the lab results yet no one pushed for a CT scan for better imaging. To think that they are well-paid doctors from VRP, The Medical City and Makati Med. In short, we wasted over 500,000 pesos and precious time on a wild goose chase. 

Anyway, we finally found a team of doctors who are worth the money. They diagnosed Theodore's problems and they are working on fixing it. That first surgery was to correct the malrotation and to perform a colostomy. The second, which will be in March, is to correct the Hirschsprung Disease and the third, which will be in April, is to close the colostomy.

His kidneys, which were the focus of many laboratory tests and hospitalizations in Manila, are still big and they still have nephrocalcinosis. Unfortunately, they still cannot be corrected surgically so he will be on medication indefinitely - one for the recurrent UTI and one for the calcium deposits - and will need to see the doctor every month.

As a parent, no words can describe how I felt from knowing that my baby boy will be operated on to actually holding him post-op. He had so many things attached to his little body. He had an NGT, a catheter, two IVs, a colostomy bag and a large wound on his belly. He was groggy from the anesthesia and when he woke up, he wouldn't let anyone touch him - clearly traumatized. 

The morning after the surgery. Isn't he a brave little fighter?

The first night, we (my mother and I) couldn't sleep. Theodore won't let me hold him. I guess he blamed me for his pain. He remembered me as the mother who brought him to the OR and the last person he saw before he was put to sleep. As soon as the anesthesia kicked in, I was ordered out of the OR. They started the surgery at 9:15AM and ended past 2PM.

For the first hour, I was just outside the OR, unable to move away for fear that something might happen and I had to be there. The next hour, I decided to go back to the room to force myself to eat something. Of course, I couldn't eat. I tried to take a quick nap to pass time, I couldn't sleep either. 

At around 12 noon, I was called back to the OR. I sprinted. I was excited to see him and to know that the surgery went well. I was greeted by the surgeon. He showed me pictures of what he did. So there I was, gawking at pictures of my boy laying on the operating table, intestines out and all. The surgeon, his name is Dr. Alejandro Aquino, by the way, explained that he had released the tissues that prevented Theodore's intestines from moving from Point A to Point B. He has also removed the appendix since it was just floating around and not where it should be. I have never seen an appendix before but I swear Theodore's looked like a thin earthworm wrapped around a part of an intestine. Anyway, the appendix being removed is okay with me - that's one future problem taken out of the picture. And then, Dr. Aquino said his rectal biopsy was negative. Hearing that, I breathed a sigh of relief. Negative! That's great news, right? No. What the good surgeon meant was that his rectal biospy showed the absence of certain cells that are responsible for peristalsis. So "negative" actually meant that Theodore positively has Hirschsprung Disease - another congenital problem. 

It took two days post op for Theodore to start feeding clear liquids but on the third day, he started vomiting every time he took something in. So they decided to put the NGT back and we were told not to feed him again. When his NGT output cleared, he was given milk and he drank it all without pausing. His tummy seemed to work better then than it previously did. 

Another thing about the past two weeks is that I can't remember how many times they inserted and reinserted his IV line. The doctors and nurses tagged him as a "difficult insertion" because his veins are too thin like that of a newborn. In addition, when they could find a vein, it had problems supporting the IV so they had to find another one. In one particular insertion during the wee morning of a Saturday, they couldn't find any good vein at all! Theodore had been crying for more than 30 minutes and the pressure caused his exposed intestine to have an edema and he had an intestinal prolapse. So now his colostomy looked like a big red sausage. 

All these lines went into the central line.

Back to the IV line, since they could no longer find any and an IV was vital at that stage because he could get dehydrated easily and all his meds were through IV, his attending physician and nephrologist, Dr. Michael Manalaysay, ordered for a central line. A central line is basically another surgical procedure wherein an IV line will be inserted to a major vein in the neck (one that goes directly to the heart). Since Dr. Aquino and Dr. Palabyab (anesthesiologist) were both out of town, we had to seek the services of yet another surgeon and anesthesiologist. This brings Theodore's doctors to 6, including a pedia gastro (Dr. Bangayan). 

Financially, we are drained. We have exhausted all our resources. Physically, we're beat especially our little fighter Theodore. Emotionally, well, I don't know if I can handle more bad news in the coming days. 

Right now, we have zero in the bank. We are neck-deep in debt and I am tired of thinking of ways to raise funds for the next two surgeries plus the checkups in-between. Theodore is also back to drinking Nutramigen as his milk, which is costly. One can costs close to a thousand pesos and we have to restock every two days. 

I hope and pray that God will still provide for this smiling baby. 

If he can smile despite the pain, why can't you?

Haunted

As a parent, I built a wall around me so that if a need arises, I can hide behind it and appear strong for the sake my children. Today, a hole was punched into it.

Earlier today, Theodore underwent  procedure called the Voiding Cystourethrogram (VCUG) at the Philippine Children's Hospital. It is an x-ray examination of the bladder and urinary tract. This procedure requires the insertion of a catheter to aspirate a contrast material into the bladder and from there, take pictures of how urine would flow. VCUG was recommended to rule out vesicoureteral reflux, an abnormality that causes urine to flow two-way or back to the kidneys. 

It sounds simple, right? I thought so too that's why I agreed to the procedure. I know Theo needed it but I was in no way prepared for what it really meant for him. I've never seen Theo cry and beg like this morning. His face and his cries have haunted me the whole day and I don't think I would ever forget. They have been burned into my memory forever. 

I kept kissing him just to offer some consolation and to let him know that I was there with him. I was at the point of breaking all my resolve. What kept me strong was the fact that he needed the procedure. I convinced myself that it was just a one-time thing and for sure, they'll find nothing else wrong with him. 

During the 30-minute "hell" of a procedure, I kept telling Theodore that it's going to be over soon and that the pain would go away. I didn't expect him to suffer for hours today because everytime he would pee, he would cry - a loud shriek of pain that got us all very alarmed. I called and texted the nephrologist but I didn't get any immediate reply. I blame her for not telling me everything about the procedure. She never told me that it's going to hurt for a loooong time! If I had known, arrangements would have been made! I ended up giving him Paracetamol to help with the pain.

Theo has more tests in the next couple of weeks as part of the monitoring of his disease. I honestly don't know if I can still take it. I feel that my wall would collapse anytime soon.

Diagnosis: MSK

On 22 August, we rushed Theodore to the Emergency Room of VRP Medical Center because his fever climbed to 40 deg C despite being on paracetamol every four hours overnight. It was the third day he's had fever. At first, we attributed it to teething. He is, after all, 9 months old already and baby teeth are to pop out soon enough. We also checked with a pediatrician (not his pedia) and she said it's just a viral infection. Apparently it was not. It was UTI.

It was the second time Theodore has had UTI. At the time of admission, the bacteria in his urine was more than 5000. He was having chills and his cries were different - like pleading for us to help him. We were scared. His pediatrician was scared. She called the hospital numerous times that day to check on him. She said she's afraid he would go into shock if the fever still won't subside. 24-hours after the antibiotics started, his fever finally waned.

A day after the antibiotics got started, Theo felt much better.

Kidney Trouble

As I have mentioned earlier, this was the second time that Theodore has had UTI. Suspicious of the real cause, the pediatrician called in a pedia-nephrologist, Dra. Galvez. Dra. Galvez ordered for numerous tests to be done. In fact, Theo might have endured more needles than you and I combined. There was also a kidney ultrasound pre and post void. At that time, I was confident that they wouldn't find anything wrong with his kidneys because he has a whole abdominal ultrasound just last June and they were fine. 

I couldn't explain the emotion when the doctors told me that Theo's kidney ultrasound shows medullary nephrocalcinosis. I felt blank. I didn't immediately understand its implication because I didn't know what that is. So I asked and they said it's a life-long illness wherein calcium deposits are noted in both kidneys. His pediatrician, Dra. Gomez, also happens to have that but hers in particular is renal-tubular acidosis. Theodore's type of nephrocalcinosis is called Medullary Sponge Kidney. 

In Medullary Sponge Kidney, the medular part of the kidney is filled with sacs or cysts; thus it's sponge-like appearance. The sacs would hinder the urine's free flow so in effect, stones would form or UTI would develop. I did some research and found out that only 1 in 20,000 to 50,000 people in the US have this birth defect. So why would Theodore have it? We don't know but we blame the genes.

I guess we're lucky that the condition was detected early. At  least we have a longer time of understanding it in order to manage it. The disease has no cure, sadly. 

Best Advice Received

I work full-time and because I have been absent for a few days, people started asking why. I told them of Theo's diagnosis and many would say that's sad and they won't know what to do if they were in my shoes. The most sensible comment I have received came from a contact in the International Alert. She said "He's young, maybe there will be developments in his lifetime."

That single sentence gave me hope and touched a part of my soul where others have failed to reach ever since Theo's condition was known. 

Double Trouble

Still bugoy despite the dextrose attached to his hand.

After a week in the hospital, Theodore had a new roommate and unfortunately, it was his brother. Nathan was also admitted but his is due to pneumonia, which is the second instance in just two months. It started as Systemic Viral Infection with fever reaching as high as 40.2 deg C and therefore prompted a visit to the ER last Monday, 25 August. Since his CBC and urinalysis came back normal, he was sent home with some medications (note that no antibiotics were given).

At home, though, the fever and cough persisted. I told my husband to go home and bring him back to the hospital that Thursday, 28 August, and he was diagnosed to have pneumonia and was admitted. 

In order to care for both children at once, we requested that Nathan and Theo share a single room and so it was granted. 

Unlike Theo, who nurses joke to be a "resident" in the hospital because of his long and repeat stays, Nathan stayed for only 3 nights and was discharged by Sunday. He was advised to take oral antibiotics for another five days.

Help from Unexpected Sources

Theo's bill reached 112,000 pesos at the time of discharge. Since this was his third hospitalization, with the second just last March also reaching more than a hundred thousand pesos, we desperately needed help. My husband resorted to "begging" in social media for donations. He received an overwhelming response from his friends both here and abroad. 

I, on the other hand, got help from my officemates who pooled money for Theodore and Nathan. Some of my college friends also donated as well as friends in the sorority. We were able to pool enough money to pay for the 70,000 pesos, minus the medical insurance and Philhealth coverages. 

Until now, I still couldn't believe that a lot of people reached out to help our family. We are truly blessed.

The donations we received were mostly via bank transfers. This is the only exception.

Major Changes

Right now, we are paying the rent and a lot of bills here in Manila. With Theo's medical expenses, our combined salaries will no longer be enough to support the family. It is with deep sadness that I would have to say goodbye to my career. 

We are to return to Mati, where we won't have to pay for rent. I will go back to working online and Nathan will be transferred to a new school. My husband, Marc, will stay in Manila, though, as he is just waiting for word from his employment agency for his date of departure. Hopefully that will be soon so at least our financial worries will be reduced.

We already have new doctors for Theodore and they will be coordinating directly with Manila specialists so there is no loss of information and he will be well taken cared of. To see his new doctors, we will need to travel to Davao City every once in a while but that's fine. It's a cheaper setup compared to staying in Manila. 

Theodore is currently on low-dose antibiotics to prevent recurrent infections but it's still no assurance that he will not have UTI again even while on medication. He is required to drink at least a liter of water per day to prevent the formation of kidney stones. When he's older, his diet will be restricted to that of low-protein, low-salt but high-calcium.

Another bad infection defeated. Yey!

Recovering from Malnutrition: A Step-by-Step Guide

Ever since we were told that Theodore is suffering from severe malnutrition due to his infections and malabsorption syndrome, I have scoured the Internet to know what I can do to help him. I have read articles from WHO and while they may have been very informative, they were not able to satisfy my one answer: how long does it take for the child to recover?

The following is a summary of Theo's progress. It may be different from yours.

Theodore at 3months and 12 days.

27 May 2014

It's been more than a month of no infections for Theodore but on the morning of 27 May, he vomited yellow liquid twice. We brought him to the pedia and were informed that it was stomach acid. We also found out that despite the absence of infections, he is still not gaining weight. At 5 months and 23 days, he was still at 4.7kgs.

At that point, we were referred to a pediatric gastroenterologist at Makati Med.

28 May 2014

We got an appointment with Dra. Sophia Calixto-Mercado for 11:30AM. She checked Theo and noted the distention in his tummy. She also asked for his history and plotted his growth in a growth chart. Theo, she said, is severely malnourished but the problem began when he was a month old, around the same time his health problems started.

Dra. Mercado ordered tests to be done. She ordered for a complete abdominal ultrasound and a stool exam. The stool exam is to check for fat globules, which would signify a malabsorption syndrome.

In the meantime, she recommended that we begin giving Theo Metronidazole and probiotics (Protexin Restore). There was another probiotics, which is to be given after the 7-day Protexin treatment but I forget the name. About two days into the treatment, we noticed that the size of his tummy has decreased. The distention is no longer obvious and he seems to be gaining weight.

Protexin is given as management to acute gastroenteritis in babies 2 months old to 2 years old. It contains 7 strains of good bacteria to help fight the bad bacteria and improve gut function. The other probiotic contains one good bacteria that is not present in Protexin.

Also, she advised to start giving him solids to boost his growth. Theo was only 5 months old but since he can already hold his head steady and he has started to show interest to solids, that should be okay. She said we can try the baby cereal available in the market. We did but it didn't help because after eating, Theo would poop fatty and watery stool. That's why we shifted to giving him indigenous foods, instead.

Taken on 4 June 2014

5 June 2014
Weight: 4.9kls

We had the test results. The abdominal ultrasound showed distention in Theo's large intestine until the sigmoid colon. His stool exam was positive of fat globules. It is confirmed: Theo has malabsorption syndrome.

I should note that after Theo got discharged last April, his pedia recommended giving him Similac Neosure in addition to breastfeeding. Her intention was pure, and that is to promote his growth. Apparently, Theo is lactose intolerant so that was one factor for the malabsorption syndrome. Dra. Mercado told us to stop giving him Neosure and to give Nutramigen, instead.

In addition, I have been drinking cow's milk and dairy was an active part of my diet. Since he's breastfeeding, he's getting the lactose from my diet too so I needed to eliminate dairy altogether.

We were also advised to continue the Probiotics and the Metronidazole for another week.

We were also told to be back for a weekly checkup to monitor his weight gain.

14 June 2014
Weight: 4.7kls

Theo's weight dropped again but Dra. Mercado said that's to be expected in patients recovering from malnutrition. However, clinically, he looked better. His cheeks were fuller, his color was better and his tummy is smaller.

21 June 2014
Weight: 5.08kls

His weight improved. Dra. Mercado told us to add olive oil and Spirulina to his diet. Theo did not like eating very much so it's best to make every spoonful count.

28 June 2014
Weight: 5.3kls

He gained weight again. Dra. Mercado told us to continue everything, except the probiotics and the Metronidazole. On top of that, she also gave e-Zinc, which was given at night for seven days.

We were also told that since the weight gain has been going up steadily, we no longer need to go to the clinic every week. Hooray! Instead, we will just have him weighed at the local health center and call the clinic to report. Should his weight drop again, we will need to go back.

The final diagnosis was: SIBO and Malabsorption Syndrome.

Today, Theo is 5.7kls. He continues to gain weight every week. He is still small for his age (now 7 months old) but he is recovering. He is happier and more active than before.

Taken last 7 July 2014

There is no magic pill that can make Theo or any child recover from malnutrition over night. It takes tons of patience and lots of love to help a child get better. It is also important to followup with your doctor to make sure everything is on track. A good support group is also needed. I'm lucky I have Ate Joy and Tita Tessie to help me take care of Theo and Nathan while Mommy and Daddy are at work.