FILLING IN THE BLANKS

Since September, we have had three involved hospital stays. All hospital stays involved Jacob staying in the PICU for part of the hospital stays.

Jacob definitely didn't look his normal happy self while being in the hospital this fall. Jacob could go in and out of seizures. Jacob was at times completely wiped out from high doses of seizure medications, and the only thing his body had energy for was some sleep. There were days when Jacob struggled with his undiagnosed colitis and the only two things he did was sleeping and seizing. There were days when Jacob's heart rate could raise through the roof from simply laying still in bed. Fevers coming and going each day. They are the moments when I am in despair. They are the moments when I honestly don't know how much longer Jacob and his body can continue fighting.

These are the times when I put on my big mama warrior hat. These are the times when I will be very clear and demanding with the medical team that something is very wrong with Jacob, and we need to figure out what it is in order to get him back to his normal self. These are the times when I tell them that I as Jacob's mom know something is really wrong with him.

Every week there is a new attending of the medical team. Every week, each specialty has a new attending. Every week it feels a little bit as starting over with Jacob's care in order to get the new team on board of what is going on with our sick boy. What we faced several times in the last couple of months is that the doctors actually think this is Jacob's baseline. They look at his chart with 40+ identified diagnoses. They take the medical information from his chart, look at Jacob in the hospital bed, and think - yes, this is how you would look like with this involved disease. They are sometimes a little too quick to assume that Jacob's mitochondrial disorder has progressed. They miss the basic question: what is Jacob's baseline?

When it comes to patient safety, this is an extremely important question. If you don't know your patient's baseline, how do you know what you should treat or not? I strongly believe that if the doctors would have taken Jacob's bloody stools more seriously and acted on them more proactively, we could have avoided a very involved PICU stay.

I have learned that one of my biggest roles as Jacob's advocate is to provide Jacob's baseline - even when the doctors are not asking for it. It helps a lot that I have an IPhone full of photos of Jacob. I very often have to pull out my phone and show photos of Jacob when he is "baseline healthy". I can see that many are surprised that Jacob goes to school, has friends, and is actively involved in all parts of his family's life.

This last hospital stay, Jacob's best friend Selina and her sister Leandra came to visit. They decorated Jacob's room and IV pole with pictures of Jacob and them playing together. They were riding on a big turtle together, they were playing outside together - in each picture Jacob is the boy in the wheel chair. He is easy to identify in each picture. Jacob also got many "get well" cards from all over the world that decorated his hospital door. The doctors who read Jacob's EEG also got to watch Jacob playing with Selina and Leandra on camera throughout the whole procedure.

Jacob had lots of visitors this time around, often several visits a day. The room was never empty. As Jacob's stay progressed, he had more and more stuffed animals in his bed to the point that they hardly fit in his bed at the end! Sarah came many times to see her brother. Every time, she crawls up in bed with him, kisses him, talks to him, and decides what they will do together. They might watch a movie together, they might read together, they might do a craft together, or Sarah might simply work on her homework as Jacob is watching her. No matter what, she is very comfortable interacting with her brother despite all medical equipment.

Jacob's home nurses came to visit multiple times. The nurses in the PICU and on the floor got to meet Jacob's home nurses, and shared insights and ideas.

All of these things are so very important for his medical team to understand and see. Don't take me wrong, I know that Jacob is very medically involved. It has been pointed out to me for over 6 years now. No medical decision around Jacob is easy or straight-forward. But if you also understand that Jacob is a very happy boy who is surrounded by love, family, and friends, you will also understand why it is so very important for us to get Jacob home again. You will understand why mom is not giving up to find an answer when her boy is sleeping all day, or pooping blood, or seizing all day long. It is not our boy when that is happening to him. Something is really wrong, and Jacob needs every member of the medical team to think outside the box as we're filling in the blanks for his doctors and nurses.

It can be trialing and tiring to be Jacob's advocate at times. It makes me sad when the doctors truly think that I want to keep Jacob to any price if the only thing he would be doing would be sleeping and seizing. It can be frustrating when assumptions are made that simply are not true. But it can also be very enlighting when the medical team "gets" Jacob. We had this wonderful PICU nurse for example. She got to meet all of Jacob's nurses and Sarah. At one point, she stopped me and said that she is amazed by the love surrounding Jacob. She said that being a PICU nurse she very seldom gets to interact with the paitent. Instead, she cares for the family members, since her patients are most of the time non-verbal due to sedation or a breathing tube. Her communication is mainly with the family members. She loved to see photos of Jacob, and she always stopped to admire the art work on his hospital walls. One Saturday afternoon, she told me that she thinks every person has a purpose in life. After having cared for Jacob and seeing all the people surrounding him, she was sure that Jacob is here for so many of us - giving us a bigger purpose. She teared up a little as she talked about our boy, who she had just met a few days earlier.

Yesterday, Jacob was such a show off! He did high fives for his new physical therapist over and over again. He also sat up with her, and had the best head control I have seen in a very long time. His head was so heavy, but he just kept pushing it up! He also decided to play the drums on his IPad, and you can all see how proud he is! I think I will keep this little video in case I have to show Jacob's baseline some time soon again :-