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?