Today I started getting paranoid. Matthew kept repeating himself (a.k.a. 'Ten second Tom) and asking over and over where his pillowcase was - (answer: in the washing machine with his sheets). After several repeats of this behavior, he said, "Mom, I have a headache, can I have some medicine?" When asked, he reported his headache at a 7 - very high for him. I don't think he's asked for headache meds at all since we've left the hospital. So, I gave him a Tylenol and a few minutes later asked how his headache was. He looked at me strangely and said, "I don't have a headache." Well, I panicked because he had needed a platelet transfusion on Friday. Low platelets can cause uncontrolled bleeding - and even spontaneous brain bleeds. Presumably, it could also aggravate a tumor that has already shown a tendency to bleed. I called Neuro-surgery and they first thought about checking his sodium to make sure that was under control. However, about 10 minutes later the nurse called back and said that on 2nd thought they wanted to do a CT-Scan just to make sure it wasn't bleeding. So, we hopped in the car and headed to SLC to get a scan and an endocrine panel to check his sodium level. Thankfully, the scan showed no new bleeding. That was a huge relief. They did say that his ventricles (his tumor is on the 3rd ventricle) were a little bit enlarged from his last scan. They are going to watch that closely to make sure there is no further build up of fluid, causing hydrocephalus. It was just so scary to see a behavior regression like that. So far we have only seen progress forward (albeit, in teeny-tiny steps), so it made me nervous to see behaviors we haven't seen since diagnoses. We are waiting to hear on labs - we'll probably get those back tomorrow.
Lest anyone be concerned that we are abandoning our other children through this ordeal, I will reassure you and mention that we hired a Nanny. I am so thrilled! Our friend Diana, who helped us when the twins were born (she was a professional Nanny for another family, but the children at her other job were in school during the day, so she was able to come help me several days a week when Nate and Drew were tiny) has come to stay with us and help. I thought of her while Matt was still in the hospital, but assumed she would already be working. After talking to another Belmont friend who had heard that Diana was transitioning to a new job, I contacted her to see if she might be interested in coming to help us. She was! Yea! She got here last week and it is so fantastic having someone who can pick up anywhere I leave off. She is delightful with my children, very patient, and very independent - I don't have to give her specific instuructions, on, say, what the kids have to have for lunch. I am so thankful that she was willing to come help us through this time. It is a huge relief to have someone always on hand to help when days like today happen, and I have to be in SLC with no notice!