Gavin / Immunology / My thoughts

I’m scared but we need answers

Today is a really big day because we will be making the trip to Cleveland in order to visit the immunologist. I'm unsure of what to expect because we don't know what is causing this issue with Gavin's blood.  One of the things that concern me is that I haven't been able to get the results of Gavin last blood draw from Tuesday.  There are several things we hope to learn at this appointment. The biggest is what are we going to do about thays happening to him. That's something we may not have an answer to until we know what's causing his levels to drop in the first place.  My thought is that we will either be returning to the hospital to do much larger infusions or we will…

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August 9, 2017
Gavin / General Medical Stuff / My thoughts

Good News, but I’m cautiously optimistic 

I wanted to share a bit of positive news tonight before I go to bed. This will be quick because I'm emotionally and physically exhausted.  The doctor called with Gavin's lab results, and things have improved.  His platelets are at 160, his WBC count is 4.4, and his Neutrophil is 2.4. These are all movements in the right direction and that's good. The problem/concern is that we have no idea why they are rising, or why they fell in the first place.  For that matter, we don't know what to expect as we move forward. Until we do, I feel like we're flying blind and that's scary. His numbers went down so fast, it was literally overnight.  At the moment, I'm counting my blessings and will take things one day…

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August 7, 2017
Gavin / Immunology / Medical Crisis / My thoughts

Here’s what we’ve learned so far today

I'm still unable to reach the nurse who let's me know Gavin's lab results, but I do have something to share in the meantime. I received two followup calls from Gavin's immunologist's office this morning.  The first was to check and see how he was doing today. They also wanted to find out his lab results from Friday. I'd forgotten to relay those to them Friday's afternoon. I was too distracted and I screwed the pooch on that one.  I received the second call after his doctor heard the results of his labs. She wanted him scheduled and seem with her as soon as possible. She's not liking the fluctuating levels, and frankly, neither do we.  We will be driving him to a Cleveland on Thursday and from there, figure…

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August 7, 2017
Fragile Health Parenting / Gavin / My thoughts

I’m incredibly nervous

We head into today, unaware of what it's going to bring us in regards to Gavin's and his ever changing health.  It's a somewhat busy schedule today. I need to get Gavin in for his bloodwork, first thing in the morning. I have his IVIG infusion after that as well. We also have two appointments for Lizze in the afternoon.  I'm incredibly nervous about how Gavin's labs are going to turn out.  The labs from Friday were a mixed bag. It was like a free for all with his numbers. There are three main things we're watching. We're closely tracking his Neutrophil levels, WBC count, and his platelets.  This past Friday, his Neutrophil went down again, his WBC count remained the same from the previous day, and his platelets when…

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August 7, 2017
Autism Parenting Insight / Gavin / My thoughts

Just because he can speak doesn’t mean he can always communicate 

Gavin has been sleeping most of the day thus far. He says he's feeling fine but this is unusual for him.  It's really difficult to know how he's feeling because he's not a reliable source of information about himself. I know that sounds weird, as everyone should be the best source of information about themselves, but not in Gavin's case.  Gavin lacks a great deal of self awareness and that's needed in order to convey to others, with any accuracy, how he's feeling.  Merriam-Webster defines communication as a technique for expressing ideas effectively (as in speech) He may say he's feeling fine because he's not in any physical pain. That said, he might be feeling run down, tired, nauseated, or sick. It's really hard to know with any certainty, how Gavin's…

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August 6, 2017
Read more about the article There’s good news and bad news
Gavin / My thoughts

There’s good news and bad news

Yesterday was a really challenging day, for a great many reasons. I didn't share the results of Gavin's bloodwork from yesterday, mostly because I was too overwhelmed.  I wanted to bring everyone up to speed, because I'm getting a lot of inquiries from readers. They're concerned and I totally appreciate that.  Gavin's labs yesterday were a mixed bag.  The good news is that Gavin's platelet count in up to 152, which is good. His white cell count remained the same as the previous day, and came in at 4.0.. Unfortunately, Gavin's Neutrophil level dropped to 2.1 from 2.2 the previous day.  Like I said, it's a mixed bag. I'm still very concerned because his levels are still low. I'm also concerned that his Neutrophil levels are moving in the wrong…

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August 5, 2017
Read more about the article I’m so proud of Gavin 
Gavin / IVIG Infusion / My thoughts

I’m so proud of Gavin 

Gavin's labs have been drawn and I'm waiting to get the results. I'm cautiously optimistic about today's numbers because yesterday they were coming back up.  In the meantime, I need to get Gavin's IVIG infusion started.  We are supposed to get a new delivery of his supplies today but they haven't arrived yet. There's enough to do today's infusion but we have nothing left for Monday.  I'm so proud of Gavin because he's taking this like a champ. He's already had his blood drawn four times this week alone and that will at least continue into the middle of next week. It depends on the results of said bloodwork.  He's not complaining, although he'd prefer not to have to go through this.  As hard as this is for Lizze and…

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August 4, 2017
Read more about the article Fingers crossed, prayers sent, and positive thoughts… 
Gavin / My thoughts

Fingers crossed, prayers sent, and positive thoughts… 

We're off to get Gavin's bloodwork done for the four time in four days. I truly hate doing this to him but it's what has to be done. I was hoping to go for a walk but the weather isn't looking too good.  I'm going to be very much on edge until we get the results back this afternoon. Based in the results, will likely determine how I proceed.  Waiting for the results to come in is absolutely torturous, and it eats me alive.  Finger crossed, prayers sent, and positive thoughts... 

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August 4, 2017