Is it hard always taking him to the doctor?

Though people with Down syndrome are at an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, ear infections, and thyroid conditions, advances in health care and treatment of these conditions along with vaccines have allowed for most individuals with Down Syndrome to lead healthy lives. We do take Henry to several different specialists, but overall he is a super healthy little guy. He’s only had minor colds, one really bad cold/croup, one ear infection, and only had one minor procedure and one surgery to date.

Henry takes vitamins. We obsessively wash hands. James and I give him Debrox ear drops once a week or once every other week to keep his tiny ears from getting blocked with wax leading to ear infections. We just started medication for his thyroid. We watch him closely and try to prevent any sickness we can. We even quarantine ourselves when we get sick; wearing masks, avoiding hugging and kissing, and constantly monitoring Henry.

Over the course of our many high risk maternal fetal medicine appointments, we were constantly undergoing ultrasounds to monitor Henry’s lungs, heart, kidneys, and stomach… He never ever showed his precious facial profile and constantly tried to escape the view of the probe turning completely around and burying his face into my spine with his with his back towards my belly (which was precious and endearing to us). We said he was a private little gentleman. His every move was precious.

As our appointments progressed, Henry never turned head down. He was breech and not turning. We were a little under 3 weeks from our due date, when at one of our appointments the doctor became concerned about fluid on Henry’s lungs. We were scheduled for a cesarean section. It was traumatic and mind- blowingly beautiful and I have never ever experienced every emotion at once except for Henry’s birth. The scariest medical event we have experienced with Henry was his birth and NICU stay. And the most intense medical event so far has been the past week.

Henry had to have his tonsils and adenoids out. The day had come. My mom came to be with Ezra so James and I could both be with Henry. I made a laminated sheet with a brief, bullet point section detailing what works and what doesn’t work for Henry. He likes bubbles and he hates stuffed animals. That kind of thing. I wanted everyone who touched him to be in love with him. I dressed him in his Paddington shirt that read, “Please look after this little bear.” On the back of the information sheet I detailed the different physiological aspects of Henry in relation to Down Syndrome that would require attention preop, in surgery, and postop. I wanted him to have the best care and everyone to be prepared. I wanted everyone who touched him to know his mother knew her stuff. Momma is a nurse. I wanted it tattooed on my face.

Sometimes people in medicine will treat the patient differently if there is a fellow nurse or doctor in the family. It shouldn’t be so, but it is. The girls came to take Henry. They introduced themselves but didn’t really identify their role or what would happen next. I knew what was happening but I was still anxious. Henry was all smiles and not acting afraid at all. He very willingly rode off in his little red wagon with these gals.

Watching him round the corner without me was the hardest thing. It was like watching your heart and soul leave you. I was really expecting one of them to invite one of back for induction… maybe they don’t do that anymore. Or maybe someone flagged me as one who knows too much and should be kept out. I really wanted to look his scrub nurse in the eyes though. I wanted to tell her to guard my baby from eager residents. They all want to do a good job and be a hero, but I just wanted the best touching him. No one else. I realized I had been ringing my hands. Who am I? I don’t do that. But my baby is at his most vulnerable and totally dependent on the team in the OR. Every adverse event I’d ever witnessed or heard about from colleagues flooded my mind. I want to be there. In there I’m tough and I know exactly what to do. Out in the waiting room I was just another anxious mother. Helpless and waiting for news.

Henry did great in surgery and had a wonderful recovery in PACU. We had an overnight hospital stay then got to go home. It is hard relying on others to care for Henry. I am exhausted after appointments and especially after his T&A surgery. I am probably hyper vigilant. I don’t know any other way to be.

And today is post op day 6. I can 100% tell you that I’d rather have a whole extra year of newborn care with feedings and changes at all hours of the night than to do postoperative care for another week. We are beyond exhausted. He’s cranky. He’s sore. He’s clingy. He whines. He cries. He’s pitiful. He refuses to eat much. When he swallows he does an exaggerated gulp and cries. He is weak until it’s time for medicine and then he fights like a grown man… and that has been every 3 hours for the past 6 days. He cries so hard at medicine time he starts gagging. It has take both of us to cuddle and hold him down for medicine. He won’t be tricked into taking it in any yummy disguise. Not ice cream, not pudding, not yogurt, not milk, not juice, NOTHING. And he will hold his breath for as long as it takes in order to avoid swallowing then spray the medicine we just gave everywhere. I try every trick in the book to get him to take sips of liquid hourly so he doesn’t dehydrate. He wants to be held upright while he sleeps and held him we have. Every night. And I’ve watched Mary Poppins approximately 20 times this week. Here I am with less hair, sticky from Motrin, and sporting a 27lb tiny person attached to me 24/7. Day 6: please let the worst be over.

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