I don’t mean a new shirt or an electric screwdriver. I mean the intangibles, the things I experience and learn. As a dad of children with special medical needs, I’ve learned not to be afraid of the next “new normal,” whatever that may be.

Our 7-year-old boys, William and John-Raven, are identical twins with a unique form of muscular dystrophy. As identical twins, they inherited the same genetic variations, so their neurological development has been almost the same as well. They are non-verbal, non-mobile and tube fed. To go into the boys’ full history would take much more than a blog entry, but suffice it to say, they’ve logged quite a few surgeries and hospital stays in their short lives. In the last nine months alone, we’ve spent almost 90 days inpatient at Cook Children’s. I’m writing this from William’s room right now, actually, having been here over a month. During this stay, William got a tracheostomy, so we’re getting thoroughly educated on the ins and outs (literally) of trach care.

From before the boys were born, we’ve had to learn to adapt to new developments that most parents don’t encounter. The kinds of things that mean you have to shuffle significant parts of your life (both emotional and physical) to make room for new day-to-day processes and situations. From the very first sonogram, when we found out we were having twins and that they might be monoamniotic (sharing the same amniotic sac, which is risky for the fetuses), we learned not to get too comfortable. As it turned out, they weren’t monoamniotic, but they did have hydrocephalus (excessive fluid buildup in the brain).

They received shunts shortly after being born to treat the fluid buildup in their brains. They were hospitalized with aspiration pneumonia and received feeding tubes a year later. In the coming years, more things would change. They had corrective eye surgeries. They had their tonsils and adenoids removed. They contracted RSV and went to the Cook Children’s PICU, where both boys had to be intubated, and John-Raven spent several days on life support. Eventually, we received the genetic results that informed us our boys have muscular dystrophy. We’ve had to make numerous 911 calls and taken quite a few ambulance rides. These experiences have taught us to keep ourselves always prepared for a “new normal.”

I take an active role in the care of my kids, and that applies equally to when they’re home and relatively healthy as it does to when they’re at the medical center. For that reason, I am a big fan of the family-centered care approach at Cook Children’s.

I appreciate the way the professionals here involve me in the decisions that are made about the plan of care for my children. I wouldn’t have it any other way. With all of our stays, Cook Children’s has basically been our home-away-from-home. Certainly, we wish our boys did not have to be hospitalized so frequently and for such prolonged periods, but if they have to be, Cook Children’s is our preference. Being in a familiar place with people we trust helps us deal with the challenges that occur so often for a family like ours.

I’m also a member of one of the Family Advisory Councils, and in that role, I get to be more directly involved and improve the connections between the medical center and the families served by it. I think of that as my opportunity to give back and participate in a different way as a parent-partner at the hospital.

I think of Father’s Day as a time to celebrate the joys and opportunities and adventures I’ve had as a father, even the things that are difficult. Thanks to the guidance of the professionals in the Transitional Care Unit, my wife and I have finished our tracheostomy training so that we’ll be better prepared to care for William and his recently acquired trach. It’s just a matter of time before we’re back home again and adapting to our new situation. It isn’t easy, but to me, being a father means celebrating the little wins and making sure I’m ready for the next new normal, regardless of what that is.

About the author

Matthew Plummer Cobb is the father of two identical twins, William and John-Raven, and a member of one of Cook Children's Family Advisory Councils.  

That’s around the time tonsillectomies, the surgical removal of the tonsils, begun. One of the most common surgeries today, tonsillectomies are a routine surgical procedure used to fix repeated infection of the tonsils or big tonsils that cause difficulty breathing, sleeping problems or block the food passage. Although it dates back to ancient times, the procedure still comes with risks. You may be worried about news reports of weight gain, pain and even anesthesia-related deaths after surgery. However, serious complications after a childhood tonsillectomy are actually quite rare.

It is better  to undergo the procedure as a child, as the risk of complications is dramatically less than that in adults; studies show about twenty percent of adults face complications after the surgery. Our kids consistently experience an easier recovery, so if tonsils are causing problems, it is recommended to get them removed sooner rather than later. According to Cook Children’s Otolaryngologist Dr. Natalie Roberge, the ideal time to remove problematic tonsils is between the ages of three and 12.

There are many different reasons one may consider scheduling a tonsillectomy for their child. Dr. Natalie Roberge says the most common reason tonsils are removed is for sleep apnea, when a child cannot breathe well at night. “This can slow down development and growth and even impact behavior during the day when the child is not well rested,” Roberge says. The second most common reason to remove the tonsils is recurring tonsil infections, such as six to seven in one year or four per year for three years in a row. Some less common causes include tonsil infections that do not respond to appropriate antibiotic therapy, a tonsil mass, tonsil stones and even bad breath.

“We could literally hear his snoring across the house,” explained mother of two Jennifer Creecy. Over the last year, Jennifer’s youngest son, Bradyn, has had chronic coughing and snoring, and needed at least 12 hours of sleep to feel rested. Jennifer’s oldest son experienced the same symptoms and previously received a tonsillectomy with Dr. Roberge. From past experience with her oldest son, mom knew something was up, so she packed up again to visit Dr. Roberge, this time with her youngest boy. Mom and Dr. Roberge decided surgery would be the best option for him, and although Bradyn initially said, “But I like my tonsils,” he is now experiencing a pleasant, speedy recovery full of milkshakes for dinner, all the Jell-O jigglers he can eat, movies and even swimming! Less than a week after surgery, Jennifer and her husband were happy to see Bradyn’s shining, rested face waking them up bright and early each morning. 

All surgeries come with their own risks and benefits, and a tonsillectomy is no exception. Not every child should have the surgery; those with a bleeding disorder should explore alternatives with their doctor. However, according to Dr. Roberge, complications for a tonsillectomy are rare, with the most common being bleeding after surgery. “In general, yes, there is a small risk of bleeding in the very few percentage points. It tends to happen a week or so after the surgery when scabs come off. In most cases, kids can gargle with ice cold water to shrink up the blood vessels and stop the bleeding; very rarely does a child have to go back to surgery.” Only in very rare cases are complications beyond discomfort, bleeding and infections seen. These are typically heavily publicized cases, giving the perception that a tonsillectomy is very dangerous. In reality, it is unusual to be out of school more than a few days.

If your child’s tonsils are causing problems but a tonsillectomy isn’t recommended for their particular situation, there are other ways tonsils can be removed or reduced in size. For example, intracapsular tonsillectomy is a technique used to remove the majority of the tonsil instead of the entire tonsil itself. This method can result in less post-operative pain and bleeding, but can also increase risk of infection or the tonsils growing back.  According to Dr. Roberge, what is most important is that the surgeon be experienced and comfortable with the tools used for the method chosen.

At your pre-operative appointment, be sure to ask questions until you are comfortable with the process. The day of the appointment, Dr. Roberge says “kids are given a dose of relaxing medicine and able to go off to sleep without any shots or needles.” After the 15-30 minute surgery, your child will wake up with you by their side and most likely be released within hours-- occasionally the next morning-- once any complications are ruled out and pain is under control. Overall, tonsillectomies are a very safe procedure. Your biggest challenge may just be coming up with two weeks of a soft food menu! (Dr. Roberge recommends Popsicles, Jell-O, soft noodles and mashed potatoes.)