the boy is boggling

So a quick recap of the past week or so...

Wednesday 4/14: Scheduled clinic visit at Riley to see the immunologist. Dr. N says that because of Chi's full-body red raised rash and swollen lymph nodes, he needs to be admitted. We wait for hours for a bed in the PICU to open up. Finally admitted, but nothing can really be done yet.

Thursday 4/15: PICC line placed. Full body CT scan revealed swollen lymph nodes throughout entire body.

Friday 4/16: Skin biopsy. (Lymph node biopsy canceled because the risk of infection was too great.)

Weekend 4/17-4/18: Doing better and transferred out of the PICU to Infant ICU. Still requiring more oxygen than usual, but okay.

Monday 4/19: Through the night, his oxygen support had even gotten down to room air (21%) Cleared for discharge by Dr. N. as his nodes and rash didn't appear worse. Cleared for discharge by developmental peds. Cleared for discharge by pulmonology. A ton of labs were drawn and sent off site (Cincinnati Childrens and Correlagen Lab in Cambridge, MA) from him and me. By the time I arrived at the hospital to get him ready to come home (John was going to meet us later), he was puffy to me. His poor little fingers looked like little sausages and his eyelids were so swollen that he could barely open his eyes (even his good eye!). Before we left, I wanted a doctor to take a quick peek at him. As much as I wanted my baby home, I didn't think I could handle a sick Malachi. Sure enough, when they went back and looked at his ins and outs over the last few days, he was positive by like 400. The doctor wanted to give him and extra dose of IV Lasix and a chest x-ray and see how he did through the night. Discharge would have to wait. Oh, and because we were set and cleared for home, they had pulled his PICC line out just an hour before the doctor saw him.

Tuesday 4/20: I called first thing in the morning to see what the plan was and when I could pick Malachi up. Through the night Malachi had required elevated oxygen support to the point where they thought his trach might have been occluded. They did an emergency trach change, but no improvement in his oxygen saturations. Discharge would yet again have to wait. He still looked swollen, but the extra dose of lasix had helped to spur on some good diapers and he gradually seemed to be getting better throughout the day. We'd be going home tomorrow!

Wednesday 4/21: We were set for home. I had arranged a sitter for Emma and a friend came to the hospital with me to help bring home Malachi so John didn't have to take off time from work. When we got there, Malachi was on 40% (the maximum oxygen support he can go home on), but he was only sating in the 60s. Really?? At that point, it didn't seem to matter if he was on 40, 50, or 60% O2 support, his sats rarely came above 70%. The nurse decided it was time to get someone--and NP, a doctor, someone. As soon as she walked out of the room Dr. B (a familiar doc from the PICU) was walking in to say goodbye. Then he looked at the monitor. They immediately wanted to draw some blood for a CBC to check his hemoglobin level. If that was low, they were going to attempt an IV and a blood transfusion just to get more oxygen directly into his blood stream since changing vent settings wasn't helping. Also, even though he looked a little better, he was still very positive on his fluids. Again, another additional dose of lasix and a chest x-ray. The blood test revealed that his hemoglobin and hematocrit were fine, but his white count was 32,000 (normal high is like 12,000). With that and Malachi's already suppressed immune system, blood and urine cultures were ordered and he will remain inpatient for at least the next 48 hours.

on a good note: i didn't think i had my camera with me (i even checked my purse and didn't see it) so i didn't get a pic, BUT chi was completely sucking his thumb with his forefinger hooked on his little nose... AMAZINGLY PERFECT! there will be a picture to follow... promise... sooner or later.