Hospital Visits and Road Trips

We have been busy!

Packing, more packing, temperatures and packing, then a hospital visit….before heading off on a 14 hour journey home.

Let me first say, I have still not caught up on sleep, but I think Theodore has begun to feel better.

Over the last two weeks I have been getting ready for our journey to North Carolina. We have been so sad that we will be leaving family, but we are excited to be reunited with “dada”.

We have been “shacking it up” at my parent’s house, in Indiana over the past 5+ months and we have accumulated many, many items. I already have too many things myself, and then we went and added children. Soooooo… You can only imagine.

To sum it up it has taken a great deal of time to get it together, organized and ready to go.

In the midst of packing life continued to happen. Theodore got his FIRST TOOTH!!! Yes, he  proved us all wrong and has a “toother” before his first birthday.

Very Exciting milestone

Then he started getting a tempurature…. Not sure if it was a teething temp. and we just continued to monitor it…..

Well…

It got bad, real bad and NOTHING worked…… and because of his low muscle tone he was not able to burn it off himself…

I went crazy mom(as instructed to do by his genetic neurologist) and……An hour later we were at the emergency room in Indianapolis at Payton Manning Children’s Hospital.

Tests, blood, urine, scans, pricking, more pricking and finally an IV later… Our new normal, hospital routine was partially  completed.

We tried sleep and rest. (This involved me crawling in the bed, like an ape with my son so he would calm.)

Results, results and more results were given and puzzles were created. However, nothing was resolved. There was a missing piece and it was not to be found anywhere.

Believe me we continue to search.

No bacteria, no abnormal white blood cell count and no clear abnormalities were found… Great right?? But temp was still spiked.

Meds, IV, rest and more meds, IV and rest later it dropped and it was time for us to go home.

We had no answers and well for us this has become the new normal! It has happened before…

Frustrating, right??

Yes, VERY!!

Through this journey we have had many things that have occurred and well we still have not found answers. We understand that Theodore has a rare diagnosis and it can be tricky.

But try, just try doctors. Research and try.

It is all extremely emotional, but most off all I hurt for my son.

I hate he has to struggle and feel pain and no answers are generated. Some doctors work, and continue to work their buns off to help us find answers.

BUT….

A great deal of them DON’T CARE or LISTEN and this makes me sad.

Luckily, we have found the drive to continue until we get a viable answer. However, I know there are many families that never find answers and sometimes it is too late.
Some doctors are aware of this process and one of Theodore’s doctors is very aware. He told me to be the “crazy mom” when he or another person/child near him is sick. I have resent my been growing into the pants and they are beginning to feel quite comfortable.

And…..I take this role seriously. I will continue to push for answers instead of excuses. I will wear the pants.

Nonetheless, after a 3rd shift hospital visit Tuesday night I had to make sure we were ready for a 14 hour Road Trip early Thirsday morning…and well with some BIG help from the fam. I succeeded.

Now, 14 hours and a few ml of acetametophine later …..we are in North Carolina. The Tempurature is down, his eating has taken two steps back, he was a champ during the trip, and we have no real answers ……but we are, Reporting to Duty, in pushing to find answers and repacking to head on a family vacation.

No time to dwell.

We are finding the light!!

Wish us luck as we continue the crazy journey in getting ready for Theodore’s first birthday, traveling and finding real answers. We know this isn’t getting resolved today, and that we will have many more hospital visits, tests and pricks.. But we will fight for real answers!!!

Until Next Time,

Reporting to Duty

Xox

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