Medicine Meets Business

We have started typing out an agenda for every doctor visit we have. The doctors we like the best seem to love it. A couple have been taken aback. I feel like we are getting better "service". It shows we're watching every aspect of Mitchell's care. The only appointment of note last week was a visit to Mitchell's GI, Dr. Ajay Kaul. While other docs haven't been too concerned with Mitchell's aspiration, he is. He referred us to the Feeding Team. This is a group of multi-practice doctors who meet with you at one time, including Speech Pathology, GI and ENT. Ah, more efficiency! I understand there is some overlap with what they call the Aero-Digestive Team as well and that Mitchell's case is to be discussed in advance at an Aero-Digestive Team meeting this week. Dr. Kaul thought we should prepare ourselves that a feeding tube (g-tube) might be necessary. A lot more research to do on that.

We also told him of Mitchell's increased spitting up and vomiting. He believes Mitchell may have Eosinophilic Esophagitis (EE) based on the timing after feeding and bloody streaks. Described to me as asthma of the esophagus, it is common in the Cincinnati area because it can be triggered by seasonal or other allergies and exacerbated by reflux. http://www.medicinenet.com/eosinophilic_esophagitis/article.htm. The Feeding Team will likely schedule us for an endoscopy. Given that, we decided against the hearing test after all. Dr. Kaul graciously told us about a Concierge Service Children's Hospital offers. The phone attendants will coordinate appointments that involve multiple specialities so I don't have to figure out how to do that myself. Now why haven't I heard of this before?? Soon, even more efficiency! After this round of doctor visits are done, we'll coordinate one sedation for tests now to include: hearing, endoscopy and muscle biopsy.

Only one doctor visit this coming week and that is with Genetics. We see Dr. Hopkin.

On rare occasions it seems like words come through others right when I need them that I swear are from God. Recently, I was sincerely moved when a boy sat next to me in a waiting room. He read a book while his mom checked him in. When done, the mom came over to us and said to me unprovoked, "Don't give up. See my son. He's done everything the doctors told me he'd never do. Sure when he talks, he's sometimes hard to understand. When he walks, his gait is awkward. But he's 8, in school and is doing very well. He too had low tone until 2. He wore orthotic boots like your son has on. At 3 we found out he has Muscular Dystrophy so we were undiagnosed for some time. Don't give up and keep pushing your son because he'll do more than you expect." Just as she was done, Mitchell's name was called by the nurse and I mumbled some reply. I really wanted to know more, but I already had heard what I needed to.


"All children will learn and succeed, just not in the same way or on the same day."

By the way, good news. My brother has just about recovered. After the surgery to remove the infection, he was allowed to go home awaiting clearance to return to work.

What a Day!

April 25 turned out to be quite a day. Kirsten, Luke and Mitchell's nanny, called me. Mitchell had thrown up at his massage appointment, then continued to get sick in her car and at home. About 15 times all told with the final heaves bringing up some blood. I rushed home and got him to our pediatrician's office. He looked pale, but didn't have a fever. Even with ok vitals, the doctor said we needed to go to Children's for evaluation. After going to the ER and being checked out we started offering liquids and he seemed to keep them down. They suggested we carefully watch him and follow up with GI. It could be that it is reflux related or that capillaries broke after being sick so many times. Fortunately we have an appointment on Tuesday, but poor little Mitchell. This kid needs a break!

While at the pediatrician's office, I received a call from my sister in law, Carli. My brother is in the hospital with a serious, yet not specified infection on his back. MRSA is suspected. He had terrible pain, fever, redness and swelling. Some of those symptoms are easing, but test results on the cultures are not expected until early next week. The surgeon will be removing more of the infection this weekend.

Some other not so great stuff has been happening to those around me so I feel compelled to pray for God's protection of my family, especially Mitchell and Craig, and my dear friends and loved ones.

We are particularly thankful that some good news came this week. Pulmonary found Mitchell's lungs to be in excellent shape. That means whatever aspiration he is having is not causing long term damage as of now. An appointment with an RN in Children's developmental pediatrics helped me navigate some of the issues we've been having. For instance, I think we will go ahead and have a hearing test done Wednesday. The RN is also helping to assign us to the Cerebral Palsy Clinic even without a clear test providing a reason for Mitchell's motor issues. While I've shunned the CP label, being assigned to a clinic consolidates some of the services we need so our care will be much more efficient! Mitchell got orthotics this week. He'll start being put in a stander during PT appointments now that he has these.

I Am My Son's Advocate

"We are so lucky to have Children's Hospital." That's the general message you hear around town. Yes, there are incredibly talented professionals working there. So why am I tired of the appointments, the waiting rooms, the phone systems, being asked the same questions by each department because systems are not shared? Well, I recently figured it out. The answer is simple: we don't have a diagnosis.

The hospital is organized around specialties. There's the Spina Bifida Clinic, the Diabetes Center, the Jane and Richard Thomas Center for Down Syndrome Services, etc. Within these disciplines, you are assigned a care manager to help you navigate the hospital system. While Mitchell has been characterized as having Cerebral Palsy, it's by observation only. And, his issues are multiple-system oriented so we've not fallen into any specific center. Therefore, I'm having to figure out what step to take next, who to call and feeling like a pinball between specialists. Like with Mitchell's vision. Ophthalmology says his eye structure is better than typical for his age - vision issues are brain based, "See Neurology". Neurology says the pathways between his eyes and brain can't be tested because signals stop at the retina, "Go have Ophthalmology check the structure of his eyes." Or a neurological test cited a fractional hearing delay. What does that mean? "See ENT." ENT/Audiology says they can't understand the test results because they are written in neurology's language. "We need to put him under again and test our way." Why do we have to take time and subject Mitchell to anesthesia again, just because they can't interpret each other's code? Can't they call one another? You get my point.

I talked to a VP within the organization to try to get a social worker, customer service or some other kind of ombudsmen on my side. I was flat out told they are proposing a system for assigning care managers to children who fall outside of a diagnosis in the fall. Not to worry, I'll continue being the advocate for my son's care. I aggressively follow every redirection I get, never wanting to look back on this time only to say, "I should have..." or "If only we..."

There are a lot of benefits and great care that comes when a child's situation is finite, especially at Children's Hospital which is truly a wonderful organization. But I see benefit and actually hope in not exactly knowing Mitchell's make-up. He can't be fit into a box. He continues to progress. There isn't a limit on our thinking. We expect this kid to do a lot. Of course it will be according to his timing. Who ever said I didn't have patience?

We have found an organization that might be a good fit for Mitchell. www.clcgc.org. It's an intensive way of breaking through a child's motor or movement inabilities via repetition.

We have an appointment with Pulmonary and the Division of Developmental and Behavioral Pediatrics this week. Next week Neurology and maybe that additional hearing test -- have to keep asking questions and advocating to see.

Family To-Dos

Boy, it's a Saturday and we are feeling a bit overwhelmed with all the spring to-dos. The list includes making our yard presentable after having a few trees bite the dust during last year's hot summer and shopping for a new car since Chris' Jag needs an investment about equal to its worth.

Mitchell's schedule of appointments keeps us busy too. We are still working on his feeding. A FEES test that will put a camera down his nose to watch his swallowing in action is next on our list. He's also waiting to get into regular speech therapy at Cincinnati Children's Hospital. We are excited that he is occasionally rolling over by himself and his neck strength and ability to push up is improving. Best of all, he seems to be interacting and aware of his surroundings more.

Luke's our steady and we appreciate every joy he gives us. He is playing a lot of base-eh-ball (Luke says baseball with 3 syllables, more like bas-ket-ball). His weekend to-do list includes a trip to the mall where he has a routine he directs us through, from eating at the food court, visiting "Pop-Pop" at Dillards, playing on the big beanbags for sale, going up and down the escalator and throwing coins into the fountain.

Chris visited with his Navy buddies in Reno last weekend and had a great time. The boys were thrilled when he returned. Although life is frantic most times, Mitchell has been regularly sleeping 7 hours at a stretch at night. We sleep when he sleeps. So, although our plates are full, we keep commenting on how much easier it is to tackle things when we've had rest.

Wishing good slumber to all!