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Making Music

Submitted by kim on Wed, 09/24/2014 - 20:05 in Nathaniel's Story

I hit publish on my last blog post Monday afternoon knowing we would be headed to the hospital that evening. I like to write while Nathaniel naps and getting the blog post finished was a challenge because Nathaniel's oxygen levels were hovering in the high eighties for most of his nap. Oxygen levels below ninety-two require intervention. Repositioning and suctioning are the tools I have available to help clear his airway immediately and bring his level back into the nineties. It is a delicate dance to reposition a sleeping toddler into an uncomfortable, but open-airway position, and keep him sleeping. Even more tedious to turn on a suction machine, stick a catheter into his body, draw up secretions, and keep him sleeping. Repeating the process multiple times in a two hour nap ruins all hopes of writing. It also signals something more serious is going on.

Nathaniel had increased secretions on Saturday and Sunday. Monday morning his nurse told me that his secretions were thick. To the point of creating a mucus plug. Later that morning they were discolored. Nathaniel was cuddly all day. He feel asleep Monday night in my arms shortly after we started his dinner g-tube feeding. Rich and I checked his heart rate. 157. Too high. We checked for a fever. 99.7. While Rich continued to rock sleeping Nathaniel, I took a shower and started packing for a hospital stay. We checked his fever again and it was 101.5. He was laboring to breath, drawing in his belly and his ribs with every breath. Time to get help.

We are now almost forty-eight hours into our hospital stay. That hour count is significant because while the lab runs preliminary tests on a trach aspirate culture, it is at the forty-eight hour mark that doctors look for some definitive answers. Nathaniel is growing five bacteria. Sounds horrible and a slight bit disgusting, but life with an open airway gets bugs. Bugs even take up residence. The ones that live there all the time do not usually make Nathaniel clinically sick. Hooray for dependable tenets! New ones cause the problems. At the almost forty-eight hour mark we see indications that Nathaniel has a new bacteria in his culture that has never grown before. Bingo. Probably the reason for his clinical symptoms. Nathaniel has responded well to the two general antibiotics he's been receiving through IV. His heart and respiratory rates are coming down. His need for supplemental oxygen is decreasing. Now that we might have identified a specific bacteria, we can identify the needed antibiotic, come up with a care plan, and get this little one home.

I once told someone that as a parent these hospitalizations are like conducting an orchestra. Like the instrumental sections of a symphony, there are vast number of resources at a teaching Children's Hospital. Talking with pulmonology one hour, ENT the next, and therapy services the third hour makes me feel I am the conductor waving my hands at the flutes, the French horns, and the percussion. Sometimes I wave really big at one particular section "I need you to be louder NOW!" This hospital visit, those big waves were directed at ENT.

I needed ENT to process the news of Nathaniel aspirating with me in a significant way.

Last week in x-ray when the speech therapist talked to me about the swallow study test results, I realized immediately that aspirating in the way Nathaniel is aspirating was a huge game changer. Not just for how we feed Nathaniel, but possibly for how we look at trachea reconstruction. I cried late into the night on Rich's shoulder because when I thought through all I knew about Nathaniel specifically, all the conversations I have had with his medical team, and all the research I have done personally, I questioned if reconstruction surgery would still be the best decision for Nathaniel. 

Nathaniel's ENT took a few hours at crib side to talk with Rich and I this evening. She was patient. Listened well. Spoke softly. Thought hard. Presented gently. She helped make music. It is odd that beautiful things like music and symphonies is what comes to mind, because this doctor really delivered devastating news. Because of the aspirating, we may have some very hard decisions to make as parents regarding Nathaniel's airway. Decisions that might include Nathaniel keeping a tracheostomy his whole life.

Rich and I will have a lot of emotion to sort through in the future as decisions are needed. I can only assume there will be plenty of nights that we cry together about Nathaniel's conditions and suffering. But like sitting in the back row of the balcony and taking in the entire splendor of a night at the symphony, today's conversation with ENT gave a fuller understanding of Nathaniel. And that boarder perspective gave peace. Reconstructing his trachea or getting him to talk or getting him off the g-tube feedings are all good goals. Those things might happen. It will be fantastic if they do. But our original goal in adopting Nathaniel, that he be surrounded by a family and loved well through his medical conditions and suffering, can still be our most important goal.