Clinicals and Answers, Sort Of, Part 3

After our inhumane treatment at the JerkFace's office, I was at my wits end. I don't get to that place often. I am generally a joyful, hopeful mama. But this was ridiculous.

We went to do labs that he requested. I still wanted my answers. The lab technichian actually injured Isaac's arm! She never even got a good draw, yet she blew out one arm, he was in tears, bleeding, and bruising. We left without the draw for labs. Because, F them. I went directly to our pediatrician's office, showed them the injury and his phlebotamist assessed the injury. Isaac could not even bend his arm for two weeks. She took the draw from his other arm, it took three sessions spaced over 2 weeks. Why? Because the requested labs required that much blood and Isaac's weight indicated that they be spaced out. !!!! The big hospital lab never even mentioned that! Or asked about his weight! I was pissed and grateful at the same time.  Grateful for this tech. She called me later that night personally to check on Isaac and ask about his condition so she could research it on her own and make changes to how we do draws.

We always see her now. She always gets the draw. He barely even cries. Also, about 1/8th the cost of the big lab. Same labs.

In the two weeks that it took to get them all done, JerkFace's office called me three times to let me know how concerned they were that we left their lab and that we really needed to get them done.  I explained each time what had actually happened and that we were getting them done. Each call made me angrier and angrier, but I stayed sweet. Why? Because being a bitch gets you crappy customer service especially from health professionals and my kid's health was on the line.

The nurse called from JerkFaces office a 4th time. The labs said to vaccinate him ASAP. Huh, I said, what exactly did you test for? What were the results? Could you send them to me? She told me no.

She told me no.

She would not explain, only that the doctor's decision was that we needed to get Isaac up to date on all his vaccinations as soon as possible. I asked if we should do one at a time or skip the live ones. She said there was no need to do that. Just get them. I asked her to send me the labs. She then told me our pediatrician could request them.

That's not how we do things. We get copies of everything. We see too many specialists to wait on fax machined requests. We don't make medical decisions of any kind without the data and gosh darn it I paid for those labs, Isaac was injured in their lab, and they had better tell me what labs were done.

After my experience in Iowa City I wasn't going back there, gee, I can Google 22q and read off the main website too folks. JerkFace said we wouldn't be allowed to see anyone in HIS practice (lie, we still see the endocrinologist).  The two big 22q centers were thousands of miles away or may as well have been.

Then my online 22q mama friend K. suggested the 22q clinic in Minnesota.

What a blessing. They scheduled us in 3 weeks. They only do clinics once a month. After fretting about the drive and the time involved and who would watch the kids, my father in law offered to drive us up, pay for a hotel, and take the kids swimming all day while Isaac and I were at the clinic. Huge blessing. Huge relief.

We checked in at 7am into a suite and spent the day there. In one room. We saw, speech, nutrition, immunology, child development, ENT, cardiology,  audiology, we had labs done, we had hearing tests, a cardio echo was finally done (still fine), our case manager nurse checked in with each new specialist and made sure we got lunch. At the end of the day (3pm) we ALL met in a conference room and discussed what each found. I also found out that Dr. JerkFace isn't even an immunologist. He does something else specialized and with pediatrics but not immunology and he was wrong about shedding and wrong about what the right way to go about vaccinations is and he ordered a bunch of tests that really didn't tell us much about Isaac's actual immune function. The real immunologist at MN, ordered those tests and had the results before we left.

Conclusion, Isaac is 60% deaf, maybe 100% and needs an BAER test to confirm in what way. Will need aids or surgery.
Heart is fine.
Palate is fine. All systems present.
Kidneys are both there and functioning.
All glands present.
Hypotonia is the dx reason for motor delay. Makes sense.
Low iron a priority. Referred to nutritionist.
Low D an issue, but willing to treat with nutritional plan. 
Titers run for vax he has had, show fantastic immune response. Learned they could titer. Will use that.
Vaccinations should still be done with caution and wait on the live ones until he is physically stronger. 22q kids have different immune systems and sometimes they look like they work then don't.
Everything else fine.

I was praised for breastfeeding. They made sure everyone knew I was a breastfeeding advocate, would not back down, and that I intended to breastfeed into toddlerhood and practice baby led weaning. I was praised for baby wearing, by the physical therapist, and they all said Isaac looked healthy and was sweet. 

The day was fantastic.

Except it wasn't' supposed to be. I was supposed to be devastated that he was dx'd as deaf. I wasn't. Should I be? I asked again if he should be retested. If the dx was a mistake. His deafness was the same as Chad's. He has so very few symptoms. Could this test have been mishandled like prior tests done at that same lab while I was pregnant? They offered to retest....but if it came back negative, Isaac would still be deaf, but our insurance would not cover hearing aids or the surgery! Insurance would only cover it if it was a genetic "defect". How messed up is that.

To be continued.......