Here's what you missed last week on Highway Lively

I've been too tired to update in the last 8 days, so here's a recap of the highlights.

Saturday April 24 (Hospital day 5, Ventilator day 2): Lively was extubated and reintubated, as I described already. He was very puffy, mostly due to the Cushingoid effects of the ACTH. Overnight Friday he lost all of his IVs, and with the help of the vascular access team as well as the anesthesiologists (the IV experts), he finally got a tenuous IV in his left foot. The PICU team spent almost the entire day trying to get a line in him. The PICC nurse came and tried both arms, unsuccessfully. The PICU team tried to get femoral lines. They worked really hard on his left leg. No dice. Finally the attending put a central line in his internal jugular vein. Pete stayed for almost the whole time, but I couldn't watch.

Due to his history of a stroke, as well as the fact that we know that he is heterozygous for Factor V Leiden, the hematology team recommended prophylactic Lovenox to try to prevent him from clotting.

Sunday April 25 (Hospital day 6, Ventilator day 3): This was the worst day and night that we had. Lively became extremely edemnatous because of his IV fluids. He was on the ventilator, but struggling against it and very uncomfortable. His legs, especially his left one, were tense with fluids. His heart rate was in the 200s and his blood pressure was very low. His hematocrit was 20. He received a blood transfusion and we expected him to quickly improve. He didn't. He was still acidotic and obviously uncomfortable, despite the fact that he was very sedated. I started to worry that he wasn't going to get better.

Monday April 26 (Hospital day 7, Ventilator day 4): He got better! New ventilator settings made him more comfortable. A new attending doctor came on service and waved a magic wand. Lively got Lasix and peed off some of the fluid that had accumulated in his skin. He got IV hydrocortisone for adrenal insufficiency (basically, he couldn't mount a normal stress response to his illness because his ability to make steroids was suppressed by all of the ACTH he had been getting). He looked better. His numbers were better. I breathed again.

Lively's left leg still looked much more swollen than his right, and as I had suspected, a Doppler study showed a deep vein thrombosis (DVT). The docs increased his Lovenox to the therapeutic range.

Overall, Lively looked like he was able to rest peacefully all day.

My mom and best friend came to take care of Pete, Annie, and me.

Tuesday April 27 (Hospital day 8, Ventilator day 5): Lively's vitals signs remained stable. His lab values improved. The team taking care of him began to talk about extubating him. This made me very nervous because Lively was reintubated immediately after the last attempted extubation, and we were afraid he may not be ready. At he same time, we obviously wanted him off the ventilator.

Wednesday April 28 (Hospital day 9, Ventilator day 6): Lively was extubated! He did really well. The tube came out, and an hour or so later, I was able to hold him for the first time in 6 days!

He stayed sleepy most of the day, but as he sort of woke up, we realized he was having withdrawal symptoms after being heavily sedated for 6 days. He became jittery, shaking his head and arms. He drooled and had explosive diarrhea. His heart rate rose to over 200. He got small doses of morphine, which seemed to improve his symptoms. The team planned to slowly wean the narcotics.

Thursday April 29 (Hospital day 10): Lively remained sleepy, but was more awake than the day before. I tried to breastfeed him and offered him a bottle, but he wasn't interested, so he continued to receive nutrition (pumped by me) through a tube going from his nose into his stomach. He no longer required oxygen, even through his nose.

The team explained to Pete and me that they were going to get a genetics consult. Lively's lactate levels were intermittently elevated, which seemed unusual. On the night Lively was sickest, one of the PICU fellows asked me if Lively came with a manual, because his doctors couldn't understand exactly why he was acting and reacting the way he was. They were concerned about some underlying metabolic disorder that may explain everything more neatly: his labs, his stroke, his seizures. The genetics team visited us and ordered some baseline labs. My feeling of relief after seeing Lively extubated and recovering morphed into free-flow worry about various genetic conditions that may make all the scary news we've gotten so far seem like a cake-walk.

Also, on this day Pete and I realized that the eye-rolling that we had been trying to ignore when it happened yesterday was, in fact, a breakthrough spasm. So the seizure control we thought we had was, well, lost.

Friday April 30 (Hospital day 11): I spent most of this day holding my boy. He slept in my arms for hours. What a relief to cuddle him again.

Seizures continued. He just had a few clusters of eye-rolling.

A lab that had been suggested by the genetics team returned and was abnormal. Lively's pyruvate level was mildly elevated. The geneticist recommended a screening panel for certain metabolic conditions. It will take, perhaps, several weeks before we get the results.

I feel that we've had enough! He had a stroke, he has seizures, his immune system was suppressed by ACTH so a little bug (gastroenteritis) became a big thing (hospitalization), and that had complications (respiratory failure), and other complications (DVT, blood loss anemia requiring transfusion, adrenal crisis) . . . . must we add a horrible, non-treatable genetic condition that might take his life to this mix? Can't we just deal with what has already happened and have hope that he will someday heal? I still hope for a normal life for my son (whatever that means). Will I lose that hope when we get our test results?


Saturday May 1 (Hospital day 12): Spasms continue. The neurologist (not Lively's neurologist, just the ones who happen to be on call) recommended increasing his second anti-seizure medication. I don't think I mentioned before that when Lively was intubated, the neurologists added Keppra to try to prevent him from having breakthrough seizures. Now they are increasing that medication. He continues to take the Topamax.

Lively is even more awake today. He sat up (with lots of help) and smiled at all the nurses who had taken care of him during his ICU stay. He looked completely adorable.

Pete and I spent a long time just holding him today. He is absolutely the sweetest boy in the world.

We will probably be sent to a regular hospital floor tomorrow.