Hi All,
I am happy to be writing on my blog again (which I have neglected for too many months), but I am not thrilled with the occasion. I find myself back in a Sanford hospital room, eating the same food, watching the same movies on closed-circuit TV (seriously--change the selection every 7 months or so!), and sleeping in the same beds.
But we are incredibly thankful to God that our stay looks as if it will be short. Harper gave us quite a scare this week, but we are hopefully on our way to heading home soon.
Both girls had horrible coughs/colds last week, and I ended up taking Reese in on Friday. They diagnosed her with RSV and an ear infection, and we got steroids and antibiotics, which improved her symptoms. She still wasn't 100% on Sunday, so I stayed home from church with the girls. That's when I started to notice something was off with Harper. She had fallen off the counter that morning--which sad to say is NOT out of the ordinary--but the marks on her body were unusual. There were little spots of blood under her skin, and bruises were forming very quickly. At one point she also fell on one of Reese's plastic toys, not very hard, and a horrible bruise appeared on her back within half an hour. By this time she had that bad bruise on her back, three on her head, and a bunch on her legs.
We went to my mom's for dinner that day, and my sister the nurse also voiced concern over the bruises, especially the little blood spots in most of them (petichae). That made me more nervous, especially when I started googling the term. It usually means there is a problem in the blood, which of course puts up red flags. Reese already had a follow-up appointment at our clinic on Monday afternoon, so I scheduled one for Harper as well.
Reese got a great report on her RSV, but then they turned their attention to Miss Harper. I think the provider probably suspected that we had beat our child until they drew her blood. Her platelet levels were 14,000, a low enough number that they thought it was a mistake. Normal levels are between 150,000 and 450,000. They redrew her blood, which was traumatic for her and for me, especially since I had a sinking feeling by then that something was very wrong. The second draw confirmed the numbers, and they told us they would be referring us to a hematologist in Sioux Falls, but we couldn't schedule an appointment anymore since it was 4:30 by this time. They sent us home.
Of course the first thing Jason and I both did was google "low platelet levels", and the barrage of conditions that pop up are a parent's worst nightmare. My sister urged me to call the specialist's office first thing in the morning and push to get in that day (Tuesday) instead of being put off any longer. Platelets are the clotting agents in the blood, and numbers that low mean that even a minor fall/cut/injury could be life-threatening. If you know Harper, that wasn't good news :) She's a monkey. So after a sleepless night, I called right in right away. Jason and I both had gracious bosses who let us stay home from work, and I got an appointment for 10:30 Tuesday morning.
We loved the doctor we saw here, Dr. Barbour (Dr. B for short), and he calmed our fears pretty soon after we arrived in the clinic. He diagnosed Harper with ITP, which means that her body had an abnormal immune response to the virus she had last week (the cold/RSV virus). Basically, the antibodies that fight the infection also attacked her platelets, which signaled her spleen to destroy them all. As Dr. B explained it to Jason, the ice cream factory (her bone marrow) was still producing all kinds of ice cream (platelets), but the consumers (the spleen) were eating it so fast that there was a shortage. This was good news since this is a short-term problem instead of a long-term one (like a problem in the factory (bone marrow) would be).
They redrew her blood in the clinic, and her numbers had dropped to 8,000 by that time. Dr. B recommended that she be admitted and treated to get her numbers back up, so yesterday they gave her a dose of IVIG fluids, which somehow tricks her body into no longer "eating" all her platelets. There can be quite a few side effects of this treatment, but Harper didn't experience any, which we are thankful for. They waited 12 hours after the treatment was over and rechecked her numbers this morning, but they were not yet where Dr. B would like them. Her level had risen to 19,000, but he wants it over 50,000 before he releases her. So that means another round of IVIG this afternoon/night, and another night in the Castle.
Harper has been handling this all pretty well, considering. She used to love the doctor's office, but I'm afraid that might be a thing of the past :) She has had some traumatic pokes, including an IV placement and several blood draws. But she is entertaining her nurses, and I had to laugh this morning as I watched Jason try to keep up with her in the hallway pushing her IV pole. She was playing "Ring around the Rosie" and he was following her in circles with the pole...funny stuff. She even got a visit from the "zoo guy," who showed her whales and starfish, and gave her some cool animal cards to keep. We have taken lots of wagon rides, colored some pictures, and read books. None of us are excited by another night here, but we realize it could be much worse.
This little incident gave us a very very small glimpse into the nightmare that parents must face when their children are seriously ill. I think of so many parents I know, including my cousin Neal and his wife Barb, whose son is battling leukemia right now. I've prayed for them that much harder the last few days just because I got a small taste of what they must be feeling.
We are grateful that we serve a mighty God whose purposes we can trust even when we don't like our circumstances. On Sunday and Monday, when I suspected the worst, I kept repeating to myself, "She is His. She is His." And so are we all.
I will keep updating the blog with information as we get it, and we again want to thank so many people who have been praying and supporting us.
Jason, Abby, Harper, and Reese
