Kai - Hospital Stay

Two Fridays ago, Kai started complaining of her ribs hurting on her right, lower side. As the day progressed, the pain increased until she was laying in bed, curled in a ball, crying. When I would make her get up to go to the bathroom, she would crouch over and cry. She wouldn't eat or drink. It was time to put a call into Georgetown.

The nurse coordinator called back promptly and advised us to bring her into Georgetown ER as the transplant clinic was closed (which always seems to be the case when we have an emergency illness that she needs to be seen for).

After a two-hour drive to DC, the ER was packed to standing-room only. The charge-nurse gave us his office to sit in to minimize Kai's exposure to any additional illnesses that might be wafting around the ER waiting room, which was nice, because I had Ama, Kai's baby sister, with me as well (little brother, Reef, was at home with Daddy).

After waiting for several hours, we were taken back to a room, where we spent the next 8 hours, during which time, she developed a fever which continued to climb. During examination, she was obviously tender on the right side. She had an ultrasound and an Xray, which showed a small spot on the lower right lobe of her lungs, indicating the possibility of pneumonia. They called the PICU down to try and get an IV in Kai's notoriously difficult veins around 4am. Just as they were getting ready to poke, our dear friends arrived to help with Ama. After an hour or so of sticking, the IV was in and blood was drawn. After the labs came back, it was determined that she would be admitted to the pediatric transplant wing. 

There was some concern that it could be an issue with her portal vein, as she has had issues with blood clots and blood flow issues there, in the past. The portal vein is the primary cardiovascular vessel running to the liver. They were also concerned about the possibility of gastroenteritis or hepatitis due to the placement of her pain.

They put her on IV antibiotics and continued testing and scanning to try and determine the exact cause of her pain/fever but no definitive evidence presented itself. It was agreed that the most likely cause was pneumonia, possibly developed after a bad bout of bronchitis and perpetuated by her asthma and immune suppression. The resident on the floor when she was admitted said that we caught it early and, had we waited a day or two, it could have become a critical situation. After 4 days, she was sent home on oral antibiotics and an assortment of inhalers with follow up scheduled in 2 weeks with her specialist at Georgetown.

During this stay, it was apparent that she had gotten used to the "norm" of not being in the hospital (whereas, before, it was just something she did when she was sick and she knew no different). She cried a lot to go home and became very irritable and angry - mostly with me because, "I let them do this to her".  I have to come to terms with the fact that I will bear the brunt of the blame as I am the one who is with her every time she must go through testing/treatment and I am the one that holds her down. There is a lot of trauma and frustration buried in her young mind that gets triggered by these episodes and, even when circumstances are ideal, they can be made worse than they really are due to resurfacing memories from previous experiences. She must have an outlet for this pain and frustration and I am the closest and easiest target, which I accept and understand.

This was her first hospital admission in over 2-years. So, while it underscores that she is still obviously somewhat fragile and a "normal" virus for most can become critical for Kai, it also is a testament to how well she is doing.

We're still battling with the insurance weekly; sometimes daily. The most recent battle was to get them to cover her prescribed oral antibiotic upon her release from the hospital. After a full day on the phone trying to get them to cover it, the doctor finally wrote her an Rx for a less expensive (possibly less effective) antibiotic just so she could receive it in time to keep the pneumonia from reestablishing and sending her back to the hospital.

A couple of days after we got home, Kai's brother became very ill with what looked like a tummy bug. We pumped her full of fluids in anticipation of having to take her back in but, luckily she hasn't showed any signs, so far. 

A little over a week out of the hospital and she's doing great. Hopefully it will be another two-years (or more) before her next visit!