A QUIETER DAY

Today has been a quieter day. Quiet is good in the PICU. Quiet means a break from all the acute illness and unanswered questions we have dealt with in the last week or so. As I woke up yesterday and found out about Jacob's blood coagulation issue, I got an enormous knot of worry in my whole tummy. It felt as the knot just grew bigger and bigger, and it took over my whole body. It was literally hard to breathe. I had decided to go for a run during the shift change, and the nurse encouraged me to still do it, since they were waiting for his blood plasma and Vitamin K to come up.

As I was running, I felt as I was running to survive. I knew that maybe this was it for Jacob. Would Jacob make it through the day? As I was running, the knot didn't necessarily go away, but it didn't grew bigger. At least not after I had been running stairs for 10 minutes after my run. My mind got a little break because I had to focus on my own breathing. That can sometimes be the absolute best medicine in the middle of a crisis.

As we were waiting for rounds, the knot grew bigger again. I was supposed to run the Family Advisory Council meeting at the hospital, and Joakim would be with Jacob. The nurse told me that I shouldn't leave Jacob, since there was simply too much going on. It was a relief that someone told me that I had to let one thing go, and completely focus on Jacob. I have such a hard time letting things go, so it was important for somebody else to tell me.

Yesterday, Jacob received blood plasma and Vitamin K due to his blood not coagulating. After hematology reviewed Jacob's labs, they do think that they have found that Jacob has a Vitamin K deficiency. They told us today that we should be very happy that it was discovered, since he could have bleed out...The cause was his excessive diarrhea, but he will from now on always take Vitamin K daily. They also want to do further testing on how he absorb fat, and if he has issues with that, more vitamins in addition to K will be added to his diet. There is a specific vitamin cocktail that cystic fibrosis patients are on that might be in Jacob's future.

As Jacob's blood coagulation stabilized, the GI doctor wanted to get the colonoscopy out of the way. Something we couldn't do as long as Jacob had issues with his coagulation. The scope did confirm colitis. From the scope, it looks like the colitis is either viral (something he picked up in the hospital) or chronic. If it is chronic, Jacob needs to be treated with steroids. Metabolics needs to be involved, so they want to watch Jacob over the weekend so they can get all the test results back before we go down that road. Jacob's stools have definitely improved today, but he is still spiking fevers. We were also told that when you have colitis you can be better for a day, and then be back in the old pattern of excessive diarrhea again. We're of course crossing fingers and toes that this is a viral colitis. If that is the case, it should go away on it's own.

I have to once again say that I am super impressed with the PICU. There was nothing they didn't cover yesterday. I felt that they did everything possible to find out why Jacob was so terribly sick. They checked Jacob's liver, heart, and brain yesterday to make sure that nothing had changed, which is always a possibility with mitochondrial disease. After blood tests, an echo, and a brain CT scan, we could give out a big sigh of relief. Everything was unchanged.

That tooth that got stuck in Jacob's tummy is still a little mystery to Infectious Disease, so they ordered an ultrasound of his tummy. We don't have a final read of the ultrasound yet. On the CT scan of his tummy, they also saw a cyst! The ultrasound did confirm that this cyst is benign, and that Jacob has had it since birth. Whew!

Jacob also got a PICC line yesterday. They needed more access than the medi-port, so he needed another central line. It was really hard to put in the PICC line, and the nurse who did it unfortunately made the recommendation to never do a PICC line on Jacob again. His veins are as small as an infant. This is not great news for us, since Jacob has needed a PICC before when he has been really sick. There are other alternatives, but a PICC would be preferred. The nurse was afraid that Jacob had more blood clots as well, so an ultrasound was ordered to check for that today too. Luckily, no more blood clots.

It sure is an emotional roller coaster we're on. In 24 hours, Jacob was suddenly the attention of the ICU Team, Infectious Disease, neurology, cardiology, the liver team, hematology, GI, metabolics, special care - and possibly having a cyst in his tummy...as we ran into Jacob's pulmonologist, he was asking if he needed to be involved, and we thanked him, but said no :-

Today, Jacob has been more awake. He is not needing the bi-pap during the day any longer. He only took one nap all day long. We have been reading books and cuddled together. I don't think he is completely out of the woods just yet. There are just so many things going on, but I do feel that we are in a much better place tonight than 48 hours ago and 24 hours ago.

Jacob is such a resilient kid. Everything his body has gone through, and he gave me a half smile tonight. He is my own hero. The nurse today also commented on Sarah, which made me such a proud mama. She said that she very seldom sees siblings so comfortable around their sick siblings. I don't even think about it any longer. When Sarah is in the room, the bed is hers. She'll find herself a spot next to Jacob, and she knows what she can and can't mess with. She will cuddle and talk to him, and it is the most natural thing to her in the whole world. That is why she is here, to see her brother.

Tonight, I am hoping that we can continue to see improvements with Jacob's colitis, so we can go back to why we originally came here. Seizures are much better controlled today than when we got in here two weeks ago, but we still want to start on epi, and see if that can help Jacob's overall seizure control.

And to end the night, I today found out why my mom's family moved to Sweden. My grand pa had colitis in Finland during the second world war. He could not be treated for it in Finland, and therefore moved to Sweden with his family where he could get treatment and get well again! That is something I never knew about until today. I told Jacob the story as he was falling asleep.

Thanks to all of you who continue to check in on Jacob at all times. We never feel alone.

Much love,
Maria.