After our 2 hour drive to Seattle Children’s we started the visit with Lincoln needing 5 vials of blood. They needed to check his ANC levels- the particular white blood cell level we have been watching, his full blood count and his blood type-in case he needs a blood transfusion during surgery.
After we retrieve blood we meet with the NP of neurosurgery to discuss the day of surgery, all while waiting for the results to come back. The appointment began with the look I’ve seen before; another unexpected thing was coming our way.
“The neuro team all came together and had a meeting regarding Lincoln’s surgery and discussed the best route to go. With the amount of fluid that is filling up in Lincolns Ventricles and the fluid that is in the cyst, they are worried that once they start releasing the fluid in the cyst that it will be like a dam and it will start coming out fast and hard, if that happens he can get meningitis. They would like to go in on the right side of his head and make another incision to weave a temporary drain through his brain to his ventricle and allow that fluid to empty into a measuring device.”
Of course we started asking the questions.
What are the risks? Which basically are all the bad things like brain damage, bleeding, infection of the site.
What will recovery look like? The nurses will have to be by Lincoln’s side every time he moves. If he moves, the drain moves (it will be sticking out of his head, held in by stitches) they will take it day by day and measure the fluid coming out, they suspect there to be about 5ml every hour then slowly reduce. Once its empty the can remove the drain, probably 3 days later. He will be on a morphine drip for the pain and then slowly wean to something not as strong as the days go by.
We went over all the normal pre op questions and I educated them about his skin condition. As we are talking and going over paper work we continue to check his blood results for the ANC level.
We go on and meet the anesthesia team; he’s been under before so we didn’t have many questions. They explained that with the type he is use to get his ears cleaned and MRI’s was just to make him sleep. Whereas this anesthesia will block all his pain receptors.
As we walk out of the office after 2 hours of appointments, I ask her to see if she can check the ANC one more time
“Sorry guys, it dropped back down to 260.”
Of course I was frustrated. How could his numbers be almost 900 then go all the way back down? We literally just wasted our whole day here.
With the news of the extra drain, and then the levels dropping back down, I can’t help from feeling numb and hopeless.
So between the Hematology clinic and the Neurosurgery team we came up with a plan.
Tomorrow we will be going back to Seattle so they can retrieve bone marrow for testing, they will also be taking out a fragment of his bone to test. He will be put under but will be in pain after. They are prescribing him oxycodone.
Tuesday we will have an appointment at Children’s to talk about his bone marrow results, if it’s what they think it is then Lincoln will need to have medication in the form of injections and that will raise his ANC levels, it takes about a week to get the medication working.
If we get his levels up then his surgery will be the last week in May.
Please be praying for our sweet baby. He is completely traumatized when he even walks by any type of doctor. Pray his bone marrow retrieval goes smoothly and we get the answers to why his levels are so low. Also be praying for his immune system, it’s extremely compromised right now.
Thank you everyone for your prayers and donations. It has lifted a huge weight off our shoulders to not have to think about finances right now.https://www.gofundme.com/lovinglincoln