7 months old and coming home!

7 months old (5 of them in ICU)

Steele was finally captured with all the medications in the CVICU on Thursday. The Fellow and Attending Doctors began the removal of his arterial line and central line by Friday. There was talk of putting in PIV line for access, just in case Steele needed additional rescues or blood draws. Rachel and I advocated against this during rounds because of his history and they agreed! Next step, move out of the CVICU up to 3 West (Transition Floor). Steele was still dealing with another issue with potassium levels. His blood panel indicated that he was low on Potassium, so he was on a huge dose that was being mixed with his food. Potassium is really hard on your gut, almost acid like and burns. Everytime he was getting this dose, he would vomit most of what was in his stomach.

When you are moved to 3 West, you must be present with the patient all the time. Rachel and I quickly came up with a schedule that would allow at least one of us to get sleep every other day. You will loose time and even days when you are on this floor. Rachel volunteered the first shift, Steele was writhing and could not be consoled all night long. I dropped Ryleigh off at school and headed over to the hospital to clock in for my shift. The Charge Nurse had persuaded the Fellow Doctor to a regiment of Tylenol and Motrin for his headaches. After a few hours of this combination, he seemed to be less fussy and was starting to sleep for about an hour before waking up. The headaches continued to persist, but he was getting some relief.

It was my turn to do the zombie shift on Friday. Steele was still agitated and needed constant pushing in is swing to settle him down. At 3 am in the morning, I had to take a break and fell asleep. The night nurses made a mistake in his Atavan dose at 10 pm, I questioned them about it, but they indicated it was correct. I would later find out that the dose was way off, he only got a fraction of his prescribed dose. When I awoke around 5am, they had given him a rescue PRN to balance him out after hours of soothing and getting him settled down. They both apologized when I woke, up, but the damage was already done at that point. 

Rachel came in to relieve me in the morning, I went home and slept for a couple hours and returned to LPCH. While I was gone, a blood panel was taken to check on his potassium and electrolyte levels. Steele's potassium levels were 200 points above the normal range. Side effects from this are irritable behavior, diarrhea, and vomiting. Hummmm....no kidding! It would take a while for his levels to come down, which mean more of the same described above for another day. In the evening, Rachel had enough of this. He was getting dehydrated, loosing weight, and not holding his food down. Luckily we have a brilliant Pediatrician in the family, Dr.Miriam McAtee. It was 11pm EST, Miriam picked up her phone on a Saturday night and gave Rachel a plan to get Steele back on track. It took some convincing with the Fellow Doctor that evening, but he agreed to the plan and wrote the order. Sure enough, Miriam's plan worked! Steele was holding down his food, less fussy, and was finally sleeping in larger chunks of time. Thank you Dr.McAtee!!

Yes, no more headaches and canulet!

After getting a night of rest, it was my turn to do the day shift. Steele was looking good on Sunday. He was holding down his medications, less issues with vomiting, and was sleeping much better. Around noon on Sunday, his oxygen was turned off and he would give room air a trial to see if his SP02 saturation levels could stay above 70. After a couple of hours, the nasal canulet was removed from his face! Steele was free from the tether!! They only thing left was getting him to gain some weight after all the loss of his food over the course of 2-3 days. Steele was moved to a shared room that was much closer to the head nursing desk.

Early Monday morning, Steele's nurse took a break, and the Charge Nurse was watching him. He was slightly desating into the high 60's. This happens after he vomits or is going poop. While Rachel was asleep, the CN came in and threw a nasal canulet around his head and walked away without notifying Rachel. Rachel then gets up to find Steele's bed covered in vomit and he's back on the 02. Needless to say, she was not thrilled about this decision. Once, our assigned nurse came back from break, she took off the canulet and he was just fine on room air.

Ryleigh and I showed up for rounds and we pressed the medical team for a discharge timeline. It looks like Wednesday! The unfortunate piece is that Steele will have to be on oxygen the entire trip. The plan to fly him home quickly fell apart because there is not a portable oxygen device made for infants his size. The airline would not allow the standard tanks aboard for obvious reasons. The only options we are left with are going by train or driving. Rachel chose the first option. We are scrambling to get our travel plans in order. Rachel's Mom, Sarah, is flying into San Jose on Thursday to help assist with getting home. Sarah, Rachel, Ryleigh and Steele will ride the rails up to north to Portland starting on Friday and arriving Saturday evening. I will be packing up the car and try and beat them home. Steele will be on .5 liters of tank 02, which we already have. Each tank lasts about 22 hours at the .5 liter mark, so they will be hauling those bad boys around on the train. 

That's the latest from Palo Alto. The Thwing's are coming home with Mr.Steele!!