|
|
Sean's Story Part 2
This photo is Sean only a few weeks old and finally able to be held by mom and dad.
Miracles do indeed happen. Sean was weaned off of the oscillating ventilator within one week of his surgery, and completely off of all mechanical ventilation on the 2 week anniversary of his surgery. The first time we were able to hold him was when he was 22 days old, the most incredible feeling of joy I have ever known. Granted, he still needed oxygen and would for the next 9 1/2 months, but being able to hold him and know that he was doing so very well was truly awesome.
Within a few weeks he was able to tolerate diluted breastmilk through a tube running from his nose to his stomach, and by the time he was 7 weeks old he was learning how to nurse and doing well with it. Then came the grand homecoming.... 1 day before his 2 month birthday (remember, he was still supposed to on a ventilator at this point it time!) we were able to bring our little bundle of immmense joy to his home with us.
Things went well for the next several weeks, though it was very difficult to put weight on Sean. The first month at home he only gained half a pound. When he was 3 1/2 months old he had one very bad night, vomiting all night long, we thought it was his first flu bug. Thankfully he had an appointment with the surgeon the next day anyway, and we decided to hospitalize Sean just in case he needed an IV for hydration. Over the next several hours Sean deteriorated, vomiting bile, abdomen tense and hard, and qutie tender to the touch. Within 36 hours he was one extremely sick baby, I was afraid we were going to lose him. The surgeon came in to check on him around midnight, and told me that he had to operate immediately to find out what was going on inside. Sean was in so much pain that they allowed me to carry him down to the OR in my arms, all of us knew that there was a chance this would be the last time I would ever hold my little boy.
During the rest of that oh so long night I prayed and cried, and finally the Lord allowed me to sleep. When the surgeon came to see me several hours later he told me that had he not operated when he did Sean would not have lived till morning. He found that Seans intestines had kinked up and a large portion had turned gangrene. As a result, he removed 40% of the small intestine, the ileo-cecal valve, and a couple inches of the large bowel. Sean was in PICU on a ventilator and heavy duty pain killers. Because he had such a large portion of his intestine removed, he had received an ileostomy, a place where poop came to the surface of his abdomen and emptied into a pouch.
Gradually he was weaned from the ventilator, and within 4 days was able to leave PICU and go to the regular pediatric floor. He weaned off of the morphine, and was started on pedialyte in very small doses via an ng tube, and did well with it for a day or so. Gradually though he began to be in pain, though it had been 2 days since morphine had been required. He again began to vomit bile, his abdomen was tender and swollen, and he was clearly in alot of pain. More x-rays were done, and once again we were informed that the surgeon was going to an exploratory laparotomy to find out what was going on in Seans tummy. Once inside, he found that a section of the large bowel had became quite inflamed and so removed several more inches of it. Once again Sean was placed on a ventilator in PICU, on strong pain killers, though this time he only remained in the unit for 3 days instead of 4.
This is Sean at 3 months old, shortly before he had his tummy
tucks
Once he was returned to the pediatric floor pedialyte feeds were re-established, and oh so gradually, very weak solutions of special formula were given to him through his ng tube. As a result of losing such a large portion of intestine, Sean would have difficulty absorbing nutrients from his food, thus the formula he would need had to be predigested. The week after his 2nd gut surgery (what we now laughingly call his 2nd tummy tuck) he again went to surgery, though this time it was planned, as he required the placement of a central line (an IV catheter that led directly to his heart). Through this it was anticipated that Sean would receive TPN ( IV nutrition) in addition to the ng tube feeds. TPN is a specially formulated fluid complete with protein, fats and sugar as well as vitamins and minerals. It was expected that he would need TPN for several months, but hopefully not on a very long term basis.
