As I turned on my phone this morning, I had a text from Jacob's neurologist wondering when we would deliver Jacob's labs this morning. His Potassium was low again, and we had to repeat some labs this morning.
At nine o'clock I turned into Children's Hospital for my first trip today. Since we're doing blood draws once or twice a week, I don't even have to say Jacob's name any longer. They know who I am, and who the labs are for. We have a routine down.
In the car to Children's Hospital, I can see that the first phone call from Children's is coming in. It is anesthesia. They want to discuss Jacob's upcoming ear tube surgery next month (more to follow on that in another blog post). They want to discuss Jacob's breathing issues as well as his blood coagulation issues. It is a good conversation, but the outcome is that anesthesia is not willing to put ear tubes in Jacob without hematology signing off on this procedure. Anesthesia wants more labs ordered, so we can further figure out what is going on with Jacob's blood before it is time for Jacob's ear tubes.
As I am leaving Children's Hospital, I am calling Hematology to schedule an appointment. The nurse knows Jacob from the Butterfly Program, so wants to chat and see how Jacob is doing these days.
I'll get home. I'll jump in the shower. I then jump in the car for my second trip to Children's Hospital. It is time to lead the monthly Family Advisory Council meeting this morning. As I am in the car, I leave a voicemail with Jacob's GI doctor. Jacob's stool output has changed as he is finally off his steroids (big YEAH for being off steroids!), and I want to check if we possibly have to make some medication changes to make sure Jacob stays in remission when it comes to his colitis. I also want to discuss his low potassium.
I pull into Children's. It is impossible to find a parking spot with the radio fundraiser going on. I end up parking in the basement of the garage.
I have time to chat with some of the other parents before it is time to get down to business! After the two hours long meeting, I have yet another meeting. After three hours of meeting, I decide to quickly stop by Alice 105.9 Radiothon fundraiser. I love to see Slacker and Steve in action. It brings back memories from the time when Jacob and I were on the radio last year!
In the car on the way home, Jacob's GI doctor calls me. We talk about Jacob's poop, we talk about Jacob's potassium. He wants to order several stool tests this very day to see if Jacob has an active infection in his stool, and if that could be the cause for him loosing his potassium. I text Jacob's neurologist to update her on what GI thinks, and wants to do. In the meantime, nurse Gemma is getting Jacob's stool samples ready to go.
I am getting in the car for a 3rd time to drive to Children's today. This time with a jar of poop. I get a smile of sympathy as I walk in once again. She is saying that she understands that there is a lot going on with our boy. I answers her that there is always something going on.
On the way home, a friend of mine is on the radio telling his daughter's story from Children's Hospital. My eyes tear up as I am listening to their story, knowing that his daughter had a really rough night last night after coming home from the Radiothon.
Jacob's GI doctor calls me again, and says potassium is normal again! Yeah! He still wants all the stool tests to make sure we're not missing anything.
Coming home, I know I have to start working. Gemma and I are also chatting about Jacob and his day. He has been a little off all day. His heart rate has been elevated, he has needed oxygen to breathe - but no fever. After his nap, he seems to be perking up!
We are having a little bit of normalcy. Sarah is coming home from school. I am catching up with Sarah's friend's mom. My neighbor stops by. Sarah and Joakim are going to the Father-Daughter Ball at her school, so I help Sarah to get ready for the evening. She looks beautiful. She is happy. I decide to go and take a yoga class, since Gemma is working late. Jacob looks happy!
As I put Jacob to bed, I can see that he is not doing great again. He is needing another round of suctioning and his heart rate is elevated. As I straighten up the house from the day, I can hear his pulse ox alarming constantly. Jacob's heart rate is going in the wrong direction, he is super flushed in his face, and is spiking a fever. I am giving him some Tylenol. It doesn't touch him. Heart rate is high, Jacob needs extra oxygen to breathe, and is looking miserable. Jacob is sick.
Joakim and I are huddling in Jacob's room, both not ready to leave our boy alone to fall asleep. I don't remember who brings up the question if it's time to pack the car to go to Children's for a 4th time today? We both agree it is time. We're out of routine. We haven't taken Jacob to the ED for months, so diapers are missing from the diaper bag, there are no extra catheters with the suction machine, I have no bag ready with clothes and tooth brush for myself. We finally are all set, Jacob is in the car, as well as our red wagon filled with stuff. The last thing I do is to put on a pulse ox on Jacob's toe realizing that Jacob has actually stabilized! His heart rate has come down quite a bit. And now is the big question - do we take him in or wait?
We decide to wait. Fever has come down, and heart rate is high but something we're ok to manage at home. We just know that when we take Jacob to the ER, he will always stay for a minimum of 48 hours until his blood cultures come back. We know he will be x-rayed, and loads of labs will be run for a second time today. We know that he will be started on the big gun IV antibiotics - just in case. There are times when that is the right way to go, but we do have a hunch that Jacob has gotten Sarah's cold, and that maybe he will do better resting at home.
Everything is packed and ready to go in case Jacob's get worse overnight or tomorrow morning. I can definitely say that today Friday was a Children's Hospital Friday for us!
Good night everyone, Maria.