Fingers crossed and prayers sent

This is take two for this post cause the first one glitched out and disappeared. I'm gonna try to reproduce it as best I can. I played phone tag with Akron Children's Hospital today. I called this morning to get the results of Gavin's labs from last week and it turns out, they never received the results. We went back and forth a couple times but finally connected in the late afternoon. The nurse had managed to get the results and it turns out Gavin's labs came back normal. I love hearing those words in the same sentence when referring to Gavin. That was good news and it meant that we could move forward with his endoscopy. She went over the intake questions and when we hit the one about…

0 Comments

Anxiously awaiting Gavin’s test results

I just left a message with Gavin's Gastroenterologist at Akron Children's Hospital. We're supposed to call towards the end of this week to get the results of Gavin's labs from last week. We're looking for his ANC or Absolute Neutrophil Count. If his numbers are high enough, they will schedule the testing that needs to be done. If his numbers are low, which they have been for the last year or so, they will not be able to go forward with the testing he needs to have done. I'm nervous about getting this returned call because so much hinges on it.

0 Comments

Here’s what happened at @AkronChildrens today

We ended up not seeing the doctor we thought we were supposed to and while we were initially thrown off at first, we really like the new one.. There was a great deal of information but I'm going to make this as quick and concise as possible. Basically, there are at least a few tests that need to be done but there are some complications. We don't really know anything until this testing gets done. Unfortunately, because of Gavin's immunological problems, specifically the Neutrophilia, there's a significant increase in risk of infection from the procedure and until that's resolved, they won't do it. If he was having life threatening gastro issues, they would do it immediately and regardless of his ANC. She explained that what Gavin's needs is semi-elective at…

2 Comments

We’ve arrived at @AkronChildrens Hospital

While the insane amount of never ending construction didn't make it easy, we have arrived at Akron Children's Hospital. Gavin's all checked in and we're waiting to be called back. It's really a strange feeling being back after all this time. Between Gavin and Emmett, we've spent so much time in this amazing hospital but it's been a minute since we've had to return. It's quite nostalgic to be here today.. I'm hoping this is going to be positive.

0 Comments

I feel like we’re off to a good start

The boys have been safely delivered to school and I've been to the track. I feel so much better after walking and I'm ready to take on the day. It was perfect weather for walking and while I had to push myself to go, I'm so glad I went. ☺ My Mom is going to be picking the boys up from school today and hanging out with them because we will likely still be in Akron. She was going to hang out with them yesterday but we moved it to this afternoon, in order to kill two birds with one stone.. We don't have to leave for Gavin's appointment until lunchtime, so I'm going to get some work done and maybe a load of laundry. Gavin is in a weird…

0 Comments

The last time we were here, we received devastating news

Today is going to be one of the biggest days we've had in awhile, at least as far as Gavin and his health are concerned. Gavin finally gets back into Gastroenterology. We've finally come full circle and I'll explain why. It's been awhile since he's been seen and that's only because we were basically overrun with unrelated, but life-threatening health issues that took priority. Gastroenterology was actually what began a huge part of our journey. We made it to one appointment and within a week of that appointment, the Gastroenterologist called, telling us we needed to get Gavin into Immunology immediately. In fact he'd already made the appointment for us. He's the one who discovered Gavin's severely compromised immune system. From there it was a diagnosis of Common Variable Immunodeficiency.…

4 Comments

When good news is frustrating 

I try to document our adventures as best I can, but not at the cost of being present in the moment with my family. Part of why I do this is because it helps to provide further context into our journey.  Yesterday, I had to get Gavin to Akron Children's Hospital for an eye exam. He's been complaining of episodes where his vision goes dark and all he can see is blackness.  As it turns out, his vision issues have nothing to do with his eyes. That's good but frustrating at the same time. We still don't know what's going on or as one of my readers pointed out, whether or not these are really happening.  No one thinks he's making this up but at the same time, perhaps he's…

0 Comments

OMG.. This is taking FOREVER 

Gavin and I have been at Akron Children's Hospital for two hours now. Not much has happened. Gavin had a basic eye exam and then some more specific testing as well.  We've spent more time waiting for someone to simply speak with us, then anything else.  My brain is still fried from this morning and this wait is not only killing me, but it's not been easy for Gavin as we. 

0 Comments