To say the last three weeks have been a whirlwind is an understatement in every way. This story will likely be a long one, so the short and sweet of it is this - we have decided that Benton will get surgery. At this point it is looking more and more like he will have a gtube, nissen and a circumcision but the one thing that has still not been fully decided is the nissen. To get the long version of our saga read on.....
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| My little teddy bear |
After our previous tension-filled visit with the doctors, we started to gather appointments with a variety of specialists in the hopes of getting second opinions on surgery for Benton. In the matter of a week we had appointments scheduled with the top pulmonologist at Childrens hospital, a feeding tube specialist, a GI doctor at Georgetown, a speech therapist and an appointment for a swallow study. We first saw the pulmonologist and he said based on everything we told him Benton doesn't necessarily need a gtube or a nissen as long as we are seeing steady progress in his feeds and he is not aspirating. Similarly, the feeding specialist emphasized that we were past the point of needing a gtube and we just needed to wean Benton off his tube feeds - to do this he needed to be hungry and we should cut back on the amount we were tube feeding him in order for him to make up the remainder orally. After meeting with both of these specialists we felt re-energized in our efforts to avoid surgery and we went to our regularly scheduled NICU follow-up appointment with hopes of tube weaning by increasing Benton's appetite rather than through surgery.
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| Trying out solids in his new fancy high chair!! |
However, any hopes of tube weaning were dashed once we arrived at the appointment. Instead of getting to discuss feeding strategies the focus was Benton's increased oxygen requirement. Over the weekend Benton had been requiring closer to 1 liter of oxygen rather than his normal 3/4 liter. We had chalked it up to his massive weight gain (2 1/2 lbs in just 3 weeks) rather than anything serious. However, when the nurse tried to take Benton's oxygen saturation he was satting in the 50-70s not his normal 90s. In the doctor's office we turned Benton up to 2 liters and got an echocardiogram of his heart. It showed that his pulmonary hypertension had increased significantly from just 3 weeks before. Any hopes of going home that day were dashed and it was time to go to the Pediatric ICU (PICU) instead. The doctors hoped that it was just increased liquid on his lungs from his rapid weight gain and that an IV dose of lasix (a diuretic) would fix him right up, but there was a chance it could be pneumonia or something else more serious. Hearing these scary prognoses terrified me to the core and I couldn't help but start crying right there in the doctor's office.
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| At the doctor's office moments before being rehospitalized |
Arriving back at Georgetown hospital and getting re-admitted was surreal. I couldn't believe we were back and yet everything was so different. Benton was now 14 lbs - no longer a little 1 lb bundle of joy - and despite the fact that he was requiring more oxygen he was in good spirits, smiling and playing. In addition, it was weird to be back in the hospital, a place that had been like a second home just a few months prior, and yet we didn't know anyone. It wasn't the NICU, it was the PICU, and with that came new nurses, new doctors and new rules. In the NICU each baby is in a crib or isolate and there are 20 babies in a room with nurses just steps away. In the PICU each child has their own room, but the doors are closed and nurses don't come in unless called or to give meds, check stats etc. It is a much quieter experience and one in which you never had to leave your child's side - you could stay the night and be there all day even during shift change. It was definitely an adjustment for me to get used to not having a nurse just steps away and having to explain how to mix Benton's milk with extra calories, when his meds should be given to him and what time his feeds are.
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| Benton with the CO2 probe on his head |
As we arrived at the PICU we were whisked into a private room and Benton was weighed, measured and hooked up to oxygen and the requisite monitors. They also placed a device on his forehead to measure his CO2 levels and took a chest x-ray. Within minutes of his x-ray being developed it was clear that Benton had a pneumothorax. A pneumothorax is when air escapes your lungs and is stuck between your lungs and the chest wall. The air then causes your lung to start collapsing and this was why Benton was requiring more oxygen. FYI, in large pneumothoraxs the insertion of a chest tube to drain the air is required, but luckily Benton's was small enough that they wouldn't need to put in a chest tube. The doctors increased his oxygen to 8 liters at 100% and allowed it to slowly reinflate his lung. By the very next day his pneumothorax had resolved! Yay!
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| The crazy beds in the PICU |
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| Love in the hospital |
With the pneumothorax gone the doctors tried to drop Benton's oxygen from 8 liters to 2 liters. Now this quick wean might work for people without chronic lung disease, but it did not work for Benton and his sats plummeted. So the doctors had to slowly wean Benton off the oxygen and back to his baseline of 3/4 liters. By the end of the second day, Benton was back to 2 liters, but that last liter took 3 more days to wean. Each night Benton would wean down to 1 liter but then would get all excited during the morning rounds and kick his feet so much that he would desat and require more oxygen. It was like deja vu each morning - he would start off at 1 liter and then he would want to play and require 2.5 liters and then it would take a few hours to wean back down to 1 liter before it would start all over again! His nurses didn't realize that Benton didn't really need the extra oxygen because as soon as he would calm down he would be satting 100s all day and they were so busy they didn't get around to weaning him. Luckily after 4 days of this same nonsense, we were able to pin Benton down so he wasn't playful during morning rounds and we were able to be discharged!!
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| Playing at the hospital |
One side effect of Benton being hospitalized was that we had to take a giant step back on his feeds. While he was hospitalized and requiring high flow of 8 liters he couldn't eat by mouth. Once he was on low flow again the speech therapist came to see him and thought it sounded like he was aspirating (breathing in) his milk. She recommended that we stop all feeds by mouth except purees until he had a swallow study done. In addition, the GI doctor came to visit Benton and review his case and she thought that it was clear that Benton needed both a Gtube AND a nissen. She was so adamant in this fact that she went as far as recommend a ND feeding tube until surgery could be scheduled. An ND feeding tube is different from what Benton currently has - it is a feeding tube that goes through his nose into his stomach and then into the intestine so that food completely bypasses the stomach. We listened to her recommendations, but decided that we would just completely hold off feeding Benton orally until the swallow study was done and then make a decision on what surgeries were necessary.
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| Hoping to go home! |
Following Benton's hospitalization, we had appointments with the NICU follow-up clinic to discuss next steps and check his oxygen saturations. In the appointment we discussed possible studies that could be conducted so that we would be able to make a decision on the gtube/nissen surgery. Possible studies were rattled off: swallow study, impedance study, milk scan, bronchoscopy, endoscopy, ph probe. As I listened, the names of studies swirled in my head. Many of these studies could help identify if Benton was aspirating his milk or his reflux, but they all had their pros and cons. Some were invasive, in and of themselves, and would require that Benton be intubated just to perform a test to see if he might need a surgery. It seemed crazy to put him under just to decide if a nissen was needed. The more and more I listened, the more and more I just wanted to have this whole saga be over. I told the doctors that if they would agree to take the nissen off the table then we would agree to a gtube. The doctors agreed and I left the appointment thinking we had won a small battle.
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| Fun with purees and toys |
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| Messy little man |
However, in the days following that appointment Benton started to cough violently each morning and began vomiting and choking on his own spit up. This was a new development and it had nothing to do with feeding as he was receiving all nutrition via his NG tube. Each episode scared us more and more because he would turn kind of blue and not sat well for some time after the choking subsided. At first I blamed the introduction of applesauce into his diet and thought it could be a food allergy; as each episode had followed a taste of this puree. However, when I took away the applesauce it continued to occur. These episodes prompted yet another visit to the doctors since he was now requiring 1 liter of oxygen rather than his 3/4 liter. The doctors explained that he was coughing up mucus from his lungs and this could trigger his gag reflex which caused him to vomit. They also explained that this could seriously endanger his lungs if he was aspirating his own vomit and they wanted us to reconsider the nissen.
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| Showing off his new talent for spitting up |
So there you have it - the long and short of it. We started off believing we could avoid surgery all together, then we came to accept that the gtube surgery was inevitable and finally we have come to the conclusion that the g tube/nissen surgery combo may be our best bet. Tomorrow we have the swallow study and that should really shed some light and help us make a final decision regarding Benton's surgeries.
Please pray that we are making the right choices for our son and that he will benefit from these surgeries. Pray that he continues to grow in leaps and bounds and that these surgeries help his chronic lung disease and pulmonary hypertension heal so he can finally come off oxygen. We love this little guy more than life itself and hope that these decisions will help ease his work of breathing, protect his lungs and make his life even better.
