Thursday, May 29, 2014


So shortly after everyone left (like, the DAY everyone left) I spent the day trying to get in touch with our GI for ultrasound results and lab results. I'd spent two days trying to get those results from that dr when I finally decided I'd had enough. Peter was looking jaundiced, and I didn't want to wait any more. Off to the ER we went. I figured they'd have the results, they were in the same network. And I anticipated a late night at the hospital.
In the E.R.

 Instead we got four days. Four days of tests, blood work, stool samples, the works. Peter was not amused.
 He did, however, really like the glove balloons.
 It took 24 hours but we were finally moved to a hospital room where he was kept in isolation.
 He was admitted for acute anemia with a hemoglobin at 6.6. After flooding his system with IV fluids they re-did the test and his hemoglobin had dropped to 5.6 In an hour. Yikes. There was talk of transfusion, the blood bank got to work finding a match for him, he got stuck a million different times... We saw our GI doctor who asked why we hadn't called him (GRRRRR!!!!!!!). We found out that his reticulocyte count was abnormally high: 12% instead of the average 1-2%. They wondered if he were bleeding through his GI tract somewhere. So they did this test:
 Nothing. They started calling him the Conundrum Kid because he'd have all of the symptoms for one disease and then the key symptom would be fine. It was a mess.

Finally in our own room, Day 2.

On top of all of that not one dr actually sat down with me and explained exactly what was going on. They used these big words that meant NOTHING to my frazzled, tired brain. And then they'd turn to each other and whisper different things. That drove me nuts.
 Poor little guy got to the point that they just could not draw any more blood, though. He had nothing, and his veins were so incredibly flat. He'd scream every time he saw navy scrubs because he knew he was going to get poked, but there was no helping it. By the last couple of days they could not do any of the follow up tests they wanted to do.

 I kept trying to be patient, but I only have so much patience when it comes to drs not communicating with me. Fortunately I had amazing nurses, and they were always more than willing to help me understand what was going on and explain what tests they were doing and why.

I also have to give a shout out to our amazing bishop, Relief Society, and my visiting teachers. The bishop visited to make sure we had things we needed, and then got the ball rolling with the Relief Society president so we would have meals at the house and people to watch the other kids while Jonathan worked. Then my visiting teachers arranged a ton of things at home and brought me an overnight bag (remember how I'd only planned on a late night at the ER? Yeah. I needed clothes. Badly.).

Day 3: We're tired of the food and the four walls.

 Thursday evening, 48 hours after we'd been admitted, Jonathan was able to borrow a car and come visit us. It was incredibly refreshing to have Jonathan come and support us. He was only there an hour or so, but it was a much needed hour. We made plans for us to switch places the following night if Peter were still there.

So Friday came and went, Jonathan and I switched (hardest thing EVER, by the way. Leaving my baby behind at a hospital an hour from home about made me sick). I spent Saturday making two weeks worth of freezer meals so I could be prepared if we had to a) stay at the hospital longer or b) go back into the hospital at some point. Another big shout out to my visiting teachers and RS president who helped me get those meals together.

Saturday Peter was released. I fought it, actually. They had not been able to confirm that Peter's hemoglobin was on the rise, and I was afraid we'd end up right back at square one. Bur they were sneaky and dodged Jonathan's request for another CBC until they'd already filled out the discharge orders and had him released as a patient.

Come to find out a week later Peter's hemoglobin had dropped again.

Peter has hemoclytic anemia. Somehow his red blood cells are being destroyed either through an internal bleed of some sort or his bone marrow is making bad blood. We are on the top of the wait list at the hematology/oncology department at a different hospital (I really didn't like the experience we had with this one) with a regular appointment scheduled June 9th.

Peter also has iron-deficiency anemia. After just a week on iron supplements we found out today that Peter's hemoglobin is at 10.4!!! The doctor was amazed we saw that kind of increase in his red blood cell count, we really aren't supposed to see those kind of results until he's been on supplements for a month. We are hoping this a good sign and that it leads to a full recovery soon.

Jonathan, ever the wet blanket, reminded me today that this could be a fluke. He's right, the doctor said it was very unusual that his hemoglobin levels jumped up 4 points in a week. That is incredibly weird. But I'll take it. I know this isn't done, I can't shake the feeling that there is something more, but that's why we are going to the blood/cancer clinic. We're going to figure out this beast before it gets the best of us.

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