He's doing well today. The reinsertion of the ventricular tube went well, but his IV slipped out just as they were finishing and they tried to find another vein after that for a good two hours and could not. It was so hard knowing they were sticking and sticking him and he was crying and crying and hurting and not understanding what was happening to him. They never could find a vein and just left it alone. I knew that they wouldn't. They decided to just wait and if they need to draw labs to try the old fashioned way, but hopefully they won't have to do anything at all involving his blood till he goes in on Tuesday to have the portacath inserted (the line next to the heart for chemo delivery).
All his meds right now go in the NG (feeding) tube. He is still getting the steroids and phenobarbitol but they are weaning him off both. He is also still getting Methadone but now only twice a day. He gets tylenol pretty regularly, it seems to make him feel better--I think his throat is still sore and he for sure had a headache yesterday.
His head CT today looked good. I haven't heard any details, but no news about a CT scan is good news.
We aren't trying to breast or bottle feed right now to avoid any chance that he might aspirate. We don't need another thing happening.
The newest development today is that this whole reinsertion of the ventric tube reveals that he has hydroencehpaly (water on the brain--except it's not water but cerebral spinal fluid). Basically, it's a condition in which the CSF does not drain properly from the ventricles in the normal way. We make new fluid all the time and we drain it from our ventricles all the time, but now his will not drain. So, they are going to put a permanent shunt in his head. They will do it at the same time on Tuesday when they do the portacath. It really is permanent too. It stays there his whole life. It's a very small tube that will run from his ventricle down to his stomach from where he will just pass the extra fluid out of his body. The tube is long and coiled up in his belly so that it will uncoil as he grows and gets taller and bigger. They said that it will not impact his life in any way--he can run and jump and dance and ride bikes and swim and play and basically be and act like a regular kid. They said about half of all kids with brain tumors have these. There will be a small bump on his head and other than that, it will be totally invisible and unobtrusive.
It's just one thing after another it seems. They tell me these shunts are "not uncommon", it's "not uncommon" to have to dig and dig for a vein on a baby--and I know they're teling me the truth --thsee things are not uncommon in this sitiuation, but the whole thing is so uncommon. Totally uncommon.
He is resting peacefully and his color looks good. Earlier he was sleeping with his arms all sprawled out, like he did before any of this happened and, except for the tube in his nose and head, he looked almost like his old (3 month old) self. He is such a sweet little baby.
Dr. Massey, one of the oncologists told me she emailed St. Jude's and left all her information. She expects to hear from them early Tuesday and she will Fed Ex his info and pictures and scans and records to them on Tuesday as well. As soon as we hear anything we'll let you know. We may be going to Memphis (where St. Jude is located) pretty soon. We'll see.
I'll let you know if I hear anything else about the CT scan done today. Nothing else is scheduled to happen till Tuesday when the portacath and the shunt will be placed.
Keep praying and thinking good thoughts --
Love to you all,