ICU... again

It’s amazing how fast things can change in less than 72 hours.

Little Miss "Cute as a Cupcake" in an adorable t-shirt from Mighty Max and his amazing mama, Amy!

This is what Gracie looked like late Tuesday afternoon. By Thursday morning she wasn’t feeling well… she had a low grade fever and another bleed in her stomach. By evening, she was pretty uncomfortable. I was about to take her into the ER, but we opted to try and ride out the night and see if we could keep her comfortable at home. We hesitated to head back to the hospital because she almost always catches something while inpatient and it is far better to be miserable at home than miserable in the hospital. But by Friday morning she earned herself a trip to the ER with a 104.4 fever, rapid breathing and awful coloring… exactly two weeks after she was most recently discharged and exactly one month to the day of receiving her PICC line.

Because her fever was so high and her coloring so poor (pale, mottled extremities) and her lower legs and feet were very cold, the ER doctor was afraid that she was in septic shock. After a few hours, the coloring and temperature of her feet improved, while her fever remained high and breathing remained fast. The PICC line appeared to be the culprit, but I was holding out hope that the source of the fever was something else. Her chest x-ray came back clear – great, as a matter of fact. I don’t think I’ve ever actually hoped for pneumonia until Friday. A line infection is much scarier, quite frankly. Her echo looked good…so it wasn’t her heart. But her heart is in danger with a line infection, especially because such an infection presents risk to her pacemaker leads and bad cells more easily cling to her heart due to blood regurgitation from her mitral valve and subaortic membrane.

She has had a bevy of tests over the last 36 hours. (In the ER, sweet girl signed “no, what’s wrong?” while the nurses were catheterizing her to get a urine sample. While I was so sad to see her upset, I was so grateful she was communicating. We haven't seen much of that since.) Her blood levels are positive for infection and were worse on Saturday than Friday. Because of anemia, she received a blood transfusion on Friday night. They have yet to determine the exact cause of the infection, that is, whether it is the PICC line itself or in her bloodstream in general. These things will take time to determine, but if she worsens at all, the line comes out. The hope is to save the line (within reason, of course), especially because getting it in was so difficult in the first place. Her fever has fluctuated up and down, but the high is now in the 102+ range instead of 104+.

In hindsight, we’ve been seeing signs of probable infection since before she was discharged on July 2nd. We’ve shared details of changes… literally every little thing… with the doctors all along. And, it’s not that they have necessarily missed something, as there are so many explanations for all the things that have changed or evolved since Gracie got her PICC line. For instance, her breathing started to change pretty early on - - since she was admitted for tracheitis and a respiratory infection at the end of June, it was just assumed that the breathing was because of that. However, once her lungs looked and sounded better, her respirations were rapid. Her baseline heart rate increased over the last few weeks. She fatigued more easily. She fought all walking and cried nearly every time we tried. She was more short of breath with increased activity. A lot of this could be expected with the rapid weight gain - - her body certainly had to make adjustments for a 25% body weight increase in one short month. We now can deduce that these symptoms were likely signs of brewing infection. (She's had some strange behaviors brewing as well… an increased need for sensory input, she was rough… pulling my hair to get me closer to her, pinching me hard, grabbing legs or arms of anyone nearby to pull them to her, grabbing Preston’s leg and pulling him to the floor to wrestle - - which was actually funny - - but “off.” She was also staying up at night laughing hysterically - - uncontrollably. It was all very strange, but we figured that her body was changing, so might her vestibular/sensory input needs.)

I just can’t believe she has an infection. We were so very careful. I take little comfort in knowing that these things can just happen, regardless of how careful we’ve been or how careful the hospital staff was while she was inpatient. I take little comfort in the fact that this has probably been brewing for a while and was undetected at the fault of no one. She is sick… regardless of cause, regardless of the likelihood… and it just stinks.

This is her third hospitalization in a month… one scheduled because of the PICC placement and two as a result of illness. Up until June 15th, her most recent stay was in August of 2008 (scheduled surgery, not illness), so we should be grateful for the extended time away. Granted, there have been many occasions where she was borderline “hospital worthy,” especially since January. When I break it down, she has been so sick this whole year - - every two to three weeks she has had something that’s knocked her out, either illness or an abdominal migraine.

Wondering, at what point, this is going to stop. Wondering when she catches a break. Wondering why she continues to suffer so much… the bad days have been outweighing the good for a while now, just like they did up until she was about four and a half. Plain and simple… it’s just not right.