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Seeking advice for first time Mayo Clinic visit with toddler (patient)
Visiting Mayo Clinic | Last Active: Oct 23, 2019 | Replies (15)Comment receiving replies
Hello @kristap31,
Although I reside in Rochester, I continue to be impressed about the accommodations that Mayo Clinic makes to suit patients’ schedules, especially if you’re coming from out of town. I would start by calling Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
I’d like to invite @rosemarya @flor @50surgeries @jillnc @badboys1965 @cap217 @rosannen @user_chdb5e8ac to join in with their insights too.
For more tips from Connect members, please see these discussions:
– Tips for first dr visit and tests/appt schedules https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/
– New to Mayo and first time traveling to MN...https://connect.mayoclinic.org/discussion/new-to-mayo-and-first-time-traveling-to-mn/
– First Time and Terrified https://connect.mayoclinic.org/discussion/first-time-and-terrified/
Here are some quick links:
– FAQ about Visiting Mayo Clinic: https://www.experiencerochestermn.com/mayo-clinic/faq/
– Parking at Mayo Clinic, Minnesota https://www.mayoclinic.org/patient-visitor-guide/minnesota/travel-lodging-maps/parking
May I ask if you are able to share some more details about your son, @kristap31?
Replies to "Hello @kristap31, Although I reside in Rochester, I continue to be impressed about the accommodations that..."
Yes! Sorry it took so long to respond. He is 18 months old and has quite a scary history. He was born healthy and happy then started having sporadic traces of blood in his stools. Following with his PCP, it was thought to be a milk protein allergy. When eliminating dairy did not seem to make a difference, I requested a GI consult. All this while there was no urgency from the doctor because he was super happy, no discomfort, gaining weight, eating great...etc. While waiting for the GI consult, he received his six month immunizations. The next day he was lethargic and threw up (new symptoms). Took him to his PCP who said give him Tylenol because he probably just had a virus or wasn't feeling well from his shots. He was NOT right that night...super lethargic (very unlike him) not eating, threw up again. The next day I decided to take him to the ER. They still were not really concerned as he had no fever. Still, I asked if they could run some tests. They showed he had an inflamed colon. Sent us to Children's Hospital via ambulance but no sirens, four hour drive, no monitors or urgency. The paramedic thought he was just sleepy and would be back in a day or two. After being in the ER several hours and waiting for bloodwork, nothing obvious was showing up (no signs of infection). But all his labs were off. Then it became terrifying. He wasn't breathing right. They sent us to the PICU and from there he went into multi-organ failure. He was intubated for five weeks, his kidneys completely shut down so was on CRRT for weeks. His whole body went into an auto-inflammatory response.
He had several open abdomen surgeries and ended up with colostomy though there was no dead bowel present or any obvious problem with his colon other than inflammation. Specialists from every department tried to figure out what was happening and there were no answers. There are still no answers. He has had nine surgeries, and one year later is doing incredible. (very long story short)
During the course of his PICU stay (many other things happened during the PICU stay) he developed a blood clot in his left groin and ended up with non-traumatic compartment syndrome in his left leg. At the moment, it was the least of concerns. Now it is really the main thing we are dealing with and the reason he is coming to Mayo. He has a severe left ankle contracture and foot drop. Severe damage to his peroneal nerve. His ortho doctor here is recommending Achilles lengthening surgery and I want to make sure that is the BEST thing for him! He will see neurologists and an ortho doctor at Mayo and have an EMG under sedation. It is rare for babies to have non-traumatic compartment syndrome injuries, so I am hoping there is anything else that can be done before resorting to lengthening his tendon--which could result in permanent weakness or life-long brace. Overall, I am grateful that our son is alive and well. I'm trying to do everything I can to give him the best possible outcome for his little leg and foot.
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Ok thank you!