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!