Last night Dylan vomited up a large amount of blood, which the nurse confirmed with some sort of test. The resident doctor was not overly concerned as the blood seemed old in color, but it scared the crap out of me! Dylan’s temperature reduced over night, it was up and down between 37 and 39.4 TPN was given for 14 hours during which high glucose became an issue, so an insulin drip was started. From what I can gather they had too much fluid going in conjunction with the TPN so his glucose went up to 187 and the normal range is approx 70-120 (I think). The doctor came in early this morning and discussed the Blood pressure issue and the nurse explained that without the dopamine his BP drops to 60/30 and then his heart rate increases to compensate. Looking at the machine now with dopamine, his BP is 90/60. The doctor said that he is hoping they can get him off the dopamine soon and we can get back to MSKCC as early as tomorrow. They also have to make sure there is room at MSKCC POU (Pediatric Observation Unit). From memory there are only 3 or 4 rooms in the POU.
Dylan was happy this morning, watching television until the nurse came poking around his lines. So far today’s scare was at lunch time, when Dylan’s blood glucose test was 35 and then the nurse tested it a second time to confirm as that reading was far too low. The next thing I knew, the doctor was being paged and they quickly gave him a shot of glucose (or something similar) to rise the levels. Then his blood pressure went very low, alarms were sounding and 5 doctors surrounded the bed, the dopamine was then bumped up to 8ml. Dylan was either asleep or unconscious (I am not sure) the nurses were trying to wake him. As quickly as it all started, they had him stable again. They tested his blood glucose and it had bounced up to 360!!! Fluids were started as it was now way too high, the nurses and doctors were shocked at how high it went from 35 to 360, but then I heard them discussing that the insulin drip was not stopped when the TPN was stopped so that explained why he had dropped to 35 in the first place. Dylan seems fine now, well I assume he is, all the monitoring machines show his vitals are good and the doctors and nurses have stopped surrounding him, but he is still sleeping and unaware of what happened. The nurse just informed me his blood glucose is now on track and reading at 124.
I have my doubts now that we will get transferred to MSKCC tomorrow because his dopamine yesterday was at 3-4ml and overnight it was increased to 5ml and after the glucose issue today, it is now up to 8ml. The nurse today said his temperature is very good, infact it’s on the low side, so hopefully that means the antibiotics are kicking in. The CBC blood tests shows his white cells have increased to 2.5 so at least he is not neutropenic and has something to fight this infection with. We still have not had any bugs identified and the source of infection remains unknown. Dylan now has 6 syringe drivers, 3 pumps and the vital sign monitors all attached to him. He is particularly sensitive to the A line in his wrist that has been stitched in to monitor his BP and the new temporary central line in his groin, which has also been stitched in. Surprisingly, Dylan had no diarrhea yesterday or today, the first time in months! I am so glad because I am not sure how we would maneuver to the bathroom with all these lines attached, and Dylan hates using bed pans.
Everytime we get a visitor here in ICU, they are asked by the front desk if they are family, so I have now gained American relatives! Rebecca is now my sister (I always wanted a sister) and Barbara is now my aunt, I didn’t ask Greg what he came up with!
Thank you to everyone who has been signing the guestbook with support and love. Thank you to those who have shared their experiences of the PICU. It always helps to know you are not alone, and that Dylan will make it through this. I know in my heart he will be fine and we will be safe and sound back at MSKCC very soon. The PICU is a very scary and depressing place, seeing all these very critically ill children, then realizing your child is here too. We will get through this, we are still strong, we are still brave and we still believe.