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My Pectus Love

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photo courtesy of my father-in-law, Nicasio Orcullo

Today is Good Friday. As with the rest of the Catholic congregation, I, along with Ryan, my husband, remember how 2000 – something years ago, an ordinary man from Nazareth did something extraordinary for me to be able to cherish today.

Speaking of pain, let me share with you an event which forever reshaped our lives. Without pain, without sacrifice, successes wouldn’t mean anything. And without prayer and a strong-will, healing wouldn’t be possible at all.

February 16, 2016, 2:00 pm.

Six months after we said our “I do’s”, I was standing outside of the operating room at Vicente Sotto Memorial Center while my husband was wheeled into the operating chamber. It was the start of an agonizing six-hour wait after he would be wheeled out after his chest reconstruction surgery.

Ryan was born with pectus excavatum, also known as “sunken” or “funnel” chest, which caused him chronic problems with his heart and lungs. It has been a source of insecurity for him for as long as he could remember. That was about one of the few things I noticed last about him, since he made it a point to hide it with clever dressing and polo shirts. I told him onset that it didn’t bother me at all, and unless needed, he didn’t have to had it fixed.

Not much is written about pectus excavatum cases here in the Philippines. In the United States, it occurs in 1 in every 300 births, more predominantly in males rather than females, and comprises about 90% of chest wall deformities (reference here.) This condition can be fixed, however, it would take a great deal of resources to do so, starting with getting a good surgeon. Post-operation recovery would normally take around 6 months to a year, depending on the health of the patient.

In Ryan’s case, we had a pulmonologist assist us in coming up with the decision to finally have his operation. Ryan’s had asthma since he was a child, but starting November 2015, we were going in and out of the hospital due to pneumonia and bronchitis, which was draining us both physically and financially. We both decided that if a solution had to be made, we would go for a one-time, permanent solution instead of numerous temporary ones which would instead complicate and worsen his condition. After his last admission during January 2016, his doctor advised us that he needed the operation, since his CT scan showed that his left lung and heart were displaced between within his left ribs, which we surmised was the cause of his asthma, hypertension and tachycardia – which also, according to my research, were some of the sub-problems people having pectus experience.

We were briefed by the surgeon of the risks this would entail. His would be an uncommon procedure for pectus patients because his case was so severe that neither Nuss nor Ravitch procedures won’t permit (an index of 3 – 5 is okay for both procedures, Ryan’s was a 10, according to a resident who attended to him in the hospital). He would still have a metal bar placed in his chest, but it wouldn’t be taken out anymore. Bulk of the work wasn’t on the doctor nor the surgeon – he had to be brave enough to wade through the pain and breathe so his lungs would expand. His chest wouldn’t be perfectly un-sunken, but at least it would hopefully put an end to all these ailments he’d been having.

A million thoughts raced through my mind during that day. We were told that anything could happen – heck, the worse COULD happen. For every step of the journey, my only was prayer was “Lord, please keep my husband safe, please heal him completely. I leave everything up to You.”

He was finally wheeled out of the OR at 8:50pm and into the recovery room. The breath I was holding in whooshed out of me and had me feeling like a deflated balloon. I was tired, jumpy but at the same time relieved. The surgeon allowed me to see him, and after I was all scrubbed up, I stood at his bedside. His first words were, “Love, sakit,” (painful). I wanted to hug and kiss him, and tell him that everything is all right now, that it was over and he was going to be fine. By 4 a.m., after a series of x-rays and lab tests, Ryan was wheeled back to our private room. All was well.

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February 18, 2016

Ryan had a total of five doses of morphine thru an epidural to help him manage the pain, along with tramadol. The resident pulmonologist advised us that he needed to breathe deeply, as much as he could muster, so his lungs would be able to adjust. Apparently, he wasn’t breathing enough because he developed respiratory acidosis on the 2nd day after his operation. This was the very reason why he had to breathe deeply, otherwise his body could not expel the CO2 that was pooling in his body. This was found out after the doctor ordered an ABG (arterial blood gas) lab test after she observed Ryan’s rapid shallow breathing, with his shoulders going up and down with every breath.

His results showed that his ABG had dropped to 7.2 that night (the normal level is around 7.3-7.5), meaning he had to have more oxygen to up his ABG levels. Which meant, as a measure to prevent a breathing tube from being placed, he had to wear a CPAP and had to be transferred to the ICU where he could be meticulously observed.

His time in the ICU were the longest three days of my life. If you’ve ever been to the ICU, you’d know that that part of the hospital is restricted to visitors, even to family, except for appointed visiting hours. For me, it was hard not to have to sneak in and see him, even for just a few minutes aside from visiting hours. I had to be content with just watching him from a window, without knowing how he was feeling – was he in pain? Was he hungry? Was he even still breathing?

February 22, 2016.

Ryan, being the fighter that he is, finally got out of the ICU that day with an ABG level of 7.4, three days after he was admitted in the ICU. I saw the positive changes right away – though he more often cringed because of the pain, and when his tubes were moved, at last he was becoming mobile, which contributed to his speedy healing. He was already sitting up, eating solid food by himself instead of just drinking Peptamen, and was going to bathroom with minimal help, slowly but surely.

March 1, 2016.

Finally, after two weeks, we were allowed to go home. He had a spirometer which he had to use to help his lungs expand, and initially we had to rent an oxygen machine to aid him whenever he was short of breath. After all, it was just less than a month after the operation and he was entitled to a few difficulties.

March 16, 2016.

It has been a month since he went under the knife. Since then, he has had a thorasynthesis to suction the pooled fluid and blood in his chest cavity, had both his tubes taken out, and is improving on his breathing, all in a span of one month.

My wholehearted thanks to everybody who were with us in our journey towards healing – my family and in-laws; the very competent team of doctors of Chong Hua and Vicente Sotto  who tirelessly looked after Ryan and answered our questions, and to God, who I felt was always there, especially during those times when all I wanted was to sit down and cry my heart out of helplessness and anxiety.

I look forward now with renewed hope that I’ll be growing old with my pectus love. With or without his sunken chest, I love him just the same, and I thank God each day for giving me a strong – willed man as my lifetime partner. I couldn’t have prayed for someone better.

 

P.S. I am not a doctor, so please don’t substitute my word for a doctor’s consultation. I would, however, be glad to help if you need one, most specially for those living in Cebu or near Cebu.

This blog post is intended for those who have the same condition and is willing to go through the pain to get better. There is a way in which you CAN get better, if you WILL to get better. It’s quite pricey though, but if you opt to have it in a reputable public hospital, it wouldn’t damage your pockets as much as it would in a private hospital.

 

*pictures are posted with Ryan’s permission.

 

 

 

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6 thoughts on “My Pectus Love

  1. What a heart-swelling story, Ms.
    The stitches on Sir Ryan’s chest gave me chills.
    God is just so good and loving.
    Wish you both happiness!
    Thanks for sharing.
    To God ever be the glory! 🙂

      • Catherine Kay Abante says:

        Mam, my child is with PE. He is one year old now. Not seeing symptoms of PE now. Good to hear your husband is okay now. Would you mind if I ask sang hospital and which doctors sin the procedure for him? Many thanks po.

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