What the Hell are we still doing here??
I'm not surprised our 23 hour admission has turned into a 5 going on 6 day admission. That's how we do things in the Jones' household. Go big or go home. Let me give you the run down about how we started, and why we're at where we are today.
On Thursday, Toby had a NG tube inserted. This is a small flexible tube that is forced through his nostril, down his throat and into his stomach. Once in his stomach, they check the placement by using a syringe and shooting a small puff of air through the tube, listening with a stethoscope to hear it from the inside out. There needed to be a very specific noise from this action, and Parker and I were trained on how to do this and hear the noise we were looking for.
I don't need to give you the details of how this process went. I'll leave it up to your imagination, but it was as awful as you would expect, producing shortly afterward heaps of bloody vomit all over the place. I'm told this is normal. If I have one more person tell me any of this is normal - I might shove a tube down their nose, and ask them how they feel. Now that I'm trained and all. I digress.
Despite the annoyance, we still were able to have some fun this week with our tube in.
Things didn't happen as smoothly as they wanted. Shocking *says with a quick tilt of the head, eyebrows up, and sarcastic tone*. We KNEW this wasn't going to work for our boy. Not only does Toby vomit when he's blissfully and peacefully playing with his cars, minding his own business - he vomits when he cries, when he runs, when he hits his head, when he coughs - you name it - the kid expels it. This is the life we know. So as you can imagine - making the decision to insert a tube down his throat for an unforeseen length of time - only made us cringe at the thought of what could happen. And as we forebode, it didn't work. He continued to vomit when he sneezed, when he coughed, when he stood there doing absolutely nothing but smile, or playing with his trains.
DGE
Leave it to Dr. Lindsey And Dr Parker Jones to diagnose our son's 4th diagnosis. We've been researching and reading, asking our new friends from our new group all their opinions, and I stumbled across a syndrome called Delayed Gastric Emptying. This is a symptom of RSS, the genetic disorder he's being tested for, and its the reason I found that it even existed.
In a nutshell, its a problem with the timely digestion of food and movement through the GI tract. There are a variety of causes but one of them is damage to the Vagus Nerve. And class - what can damage the Vagus nerve??? Hypoglycemia!?! - Something we've just recently learned Toby has had his ENTIRE life.
We read in amazement as we pieced together our new diagnosis for Toby and were sure to explain this to our GI doctor during our clinic appointment on Wednesday. Much to our surprise - he agreed with us, and we made a plan to investigate it further. The attending we've had since we've been admitted is amazing. He's a handsome fellow, in his late 40's??, with a sharp and dry sense of humor - just like we like! Each morning, rounds happen. If you aren't familiar with the medical world - Rounds occur each morning for admitted patients to 1. Give the entire medical team who's working on our son an update about his progress and 2. Use it as a teaching/diagnosis moment for residents still in a learning phase.
So far, each morning has been and explanation of Toby's last day (Vomit, eat, vomit, eat) and a list of new labs that need to be drawn. After our incident last night with Toby's vomiting in his sleep, we had a rush of fire we'd never had before. We were going to intiate some changes. We are done with leaving it up to them - We were going to start calling some shots. I thought we would be met with resistance, but by some Grace of God - he had Dr. K covering, and he was not only in agreement, he was impressed by us.
Standing in our doorway, Toby as sweet as pie running around with a little nose hose, as we called it, dangling about from his shirt - Dr. K was given the rundown about our episode last night, and the vomit that ensued all day long.
Turning to me he asks "Mom, What do you think is happening?"
Now's my chance, I think. I felt like I was a medical student, stepping up to the podium to give a speech in class.
"We think Toby has delayed gastric emptying. I know that this is caused by damage to the Vagus nerve and I know that can happen because of Hypoglycemia - which we learned Toby has had his entire life due to his Human Growth Hormone deficiency. He exhibits every sign of DGE. To complicate that - he also has a very sensitive gag reflex. So we have a variety of vomiting triggers. Our NG tube is just exacerbating his vomiting issues. If he's not vomiting because of the DGE one night, he's vomiting because the tube is tickling his throat. Its not working for us"
I'm watching the 10 strangers, and Dr K, with computer carts nod their heads in understanding and compassion.
Dr K steps in. He outlines the basics of what DGE is for the group - who all know but needed the recap. Everything he said, I already knew. He acknowledged that we can clinically diagnose Toby with this syndrome. When you have a clinical diagnosis - its a diagnosis based on signs and symptoms and not one based on a specific test (like bloodwork or an xray for instance). We know that there is a test that can diagnostically diagnose Toby with DGE but they require him to eat 2 whole scrambled eggs. That is not happening any time soon. Essentially a substance is put in the eggs which can be detected through scans and when he vomits, we would know exactly which part of his stomach is malfunctioning and take a medicine specific for that issue. After our brief acknowledgement of this disease and tests, he directs his next question to the residents "Given this information - what do you think we should do?"
A soft spoken gentlemen in blue scrubs speaks up "I think we should put him on medication for DGE, leave the NG in and hope that it helps with the vomiting".
Dr K then turns to me (I feel in excitement hoping I'm going to disagree.) I was soooooo ready to disagree, my own excitement building up that I was finally be ASKED for my thoughts, instead of forcing them. "Mom - Do you agree?"
"No, I don't" Dr K getting a big smile on his facing responding - "I love it! What would you do?"
Stepping in for the kill shot, I continue the plans Parker and I scripted laying in the dark the night prior. "We want the NG removed. Prior to last night, I may have agreed with you (I said directing my eyes to the resident who just gave me his thoughts - him acknowledging my constructive disagreement with a nod). But I watched while my son vomited sound asleep on his back in bed. I will not take that chance. What if I was changing a load of laundry around, what if I was tending to our 8 month old and wasn't watching the monitor?? He would have aspirated on his own vomit. Aside from that issue, our quality of life will be miserable if for every sneeze or cough, every wiggle of that tube, he throws up."
I am comforted by the looks of agreement in the group, and I continue.
"We want him started on the DGE medication. We want to get as many calories in him as we can on our own. We will hope that the DGE meds and the addition of the Growth hormone, plus our added pressure of getting as many calories as we can in him, will be enough to get his progress moving. ONLY after we've tried this for a month, will we consider a tube, but we will ONLY do a G-tube , not an NG tube." I am direct and confident as I am speaking.
For those of you who do not know much about tubes, and why would you???, I'll explain the difference. An NG tube is one that goes through the nose and into his stomach. There is an NJ tube that goes through his nose and into his intestines - its a longer, weighted tube, and it can be used for children that have DGE so the food bpyasses the stomach alltogether and wont get vomited up. For Toby, not only does he have the DGE, but he can't tolerate a tube down his throat (as we can CLEARLY see). For this reason, I would want to go directly to a G Tube. A G tube is a tube similar to the one that goes through his nose, but is surgically placed directly into his stomach and comes out of his belly. We would hook him up nightly, like we would have to do with a nose tube, and like an IV, Pediasure drips all night long into his stomach. Only with this option, we don't have to worry about his gag reflex because nothing is in his throat. This is a major surgery that brings along with it is own complications and complexities, and a change in way of life. Its not to be taken lightly.
Dr. K likes our ideas, and uses the opportunity as a teaching moment. Resting on the door to our room, he starts drawing pictures of Toby's insides, and covers the complexities of DGE and how we can use the medication to treat it.
To make a very long explanation short - we are starting him on 2 medications that help to regulate digestion in certain parts of the stomach. Because we are unable to preform the diagnostic test to isolate the exact part (and mediation) he needs, we chose to put him on both - to cover all of our bases. The side effect of the meds? - Drowsiness and increased appetite. Both of which sound amazing to me - as I watch my little man running up and down the halls in his reds slippers, tube flying behind him as he scurries. We could all use a little more nap time, I think as I let out a big yawn.
10 minutes after Rounding - his tube was out. A validating moment for all three of us. His cheek red and irritated after just 3 days with it - my eyes cringing at the thought of how bad it would be to have it in for months at a time.
We are still here because we have to keep track of everything Toby is inputting and outputting. I am hoping and praying they will let us leave Monday but I'm thinking Tuesday is more realistic. Toby vomited once today - and only because I was injecting his medicine in his mouth - which made him gag and throw up. I got the OK to mix it in with his pediasure, and our second try was ingested without any issue. Thank God.
We are waiting, and praying, for things to settle down so we can go home. Rumor has it, if we do have to stay through tomorrow - they might let us leave for 4 hours. We're thinking a quick trip to the splash park might be in order. Sissy got to come today and spend time with us. We all needed badly to see her smiling face.
Please keep praying that things stay on track. Please keep praying Toby stops vomiting and starts growing. I am completely touched and elated about the response to Toby's story. His life has been a blessing to us, an even though its been challenging, these challenges just highlight everything good in the world. Everything good about our love of life, our love for each other, and our love of GOD. If you read this from your phone, you can't easily see, but this blog has had almost 14,000 hits. I can feel the warm prayers from you. Toby can. Thank you from the bottom of our hearts.
And, Thank you for listening.
Lindsey
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