REFLECTIONS FROM THE ICU

It is Sunday night in the ICU. I hear a child screaming at the end of the hallway. Apart from that, it seems to be a pretty quiet night in here. It is 10 pm, and I think Jacob will finally be left alone. All his breathing treatments are done for the night, his feed is running, all medications are given, and his bi-pap is on again. One of our all time favorite ICU nurses is taking care of Jacob tonight. Her attention to detail, and overall care is amazing. She doesn't just take care of Jacob's nursing needs, she puts on his little sock that has slipped off his foot, she finds the right blanket so Jacob won't be too warm or too cold, she cleaned up all his supplies, so the room looks neat and clean. When I get a nurse who looks at the whole patient, it makes my heart warm.

Jacob has been a little bit more alert today. He has been awake all day. He is still really pale, and no smiles or vocalizations. We have done two trials when Jacob has been off the bi-pap today, and only been using oxygen. It went really well both times. Everyone still wants to slowly wean Jacob off the bi-pap, since we don't want to set Jacob back. Tomorrow, we will continue to make the trials a little bit longer and maybe a few more. We have seen no seizures since we came in on Friday night. He spiked another fever last night, but no fever so far today. Yeah for the little victories!

They are fiddling around with his antibiotics to find the best one for his pneumonia. In addition, they have added an antibiotics for pseudomonas as well. They are aggressively treating both. His blood culture came back positive, and his lactate acid level is quite a bit elevated. The elevated lactate acid is something that we see when Jacob is really sick, and it is related to his mitochondrial disease.

I think we're in for a longer stay. There is no talk about leaving the ICU. They all feel that the floor is just not comfortable with Jacob at this point, since he so quickly can change. My gut feeling is that we're not moving up until he is off bi-pap during the day.

It is hard to see Jacob being so sick again. That is the one thing that just doesn't get easier with time. I was laying next to Jacob on the tiny ER bed all of Friday night, making sure that he could feel my touch to his face and holding his hand all night long. I could see how he struggled with his high fever and breathing, and somewhere I was thinking that if he knows that I am with him all along, that he will fight through it. It was a very stressful night with tears on my side, but at the same time, it is amazing to see how Jacob responded to me being next to him. I don't know how many times I was told that I simply can't fit in his bed (I was half laying on my hip and the rest of my body was coming out the railing), but I knew I had to be there with Jacob every step of the way. It also struck me how big he is now compared to when we comfortably shared an ER bed together. A hospital bed feels like a king size bed after that experience :-

My worry tonight is how Jacob will recover from this pneumonia. Last spring, he had three pneumonias in a row before he finally could kick it out of his system. Will he be able to do it this time? I know time can only tell, but that is the worry that make my shoulders and neck stiff tonight.

In the middle of Jacob being really sick once again, I wanted to make sure that we don't forget to mention the big step Jacob took this past week! He was holding a pen in his hand, and started to draw on his own in school! I am thinking he did it with the motivation of his friend Miss S, who you can see is drawing on the same piece of paper as Jacob. He was so proud of himself! It just gives me hope to watch this little video clip.

If things go according to plan, his cast should come off tomorrow!

A big sincere thanks to all of you who keep following Jacob, cheering on him, and sending positive energy and prayers his way.

Much love, Maria.