Four Days

Brady hasn't had a transfusion in four days. If he isn't transfused today then this will mark the longest he has EVER gone!! His hemoglobin is still not at a normal level but it has been relatively stable. Today it is 7.4, yesterday it was 7.6, and Monday it was 7.3 in the morning and 7.5 in the evening. That means it has even risen slightly on its own a few times!

He's been working with the feeding team here and making slow progress. They feel he should adjust to oral feedings without any major problems. The only concern is how much volume he will be able to tolerate so a GI specialist will be consulting on how best to transition him to larger volume feeds rather than continuous feeds.

Yesterday he had a follow up xray. He will have a follow up hearing screen today. On Friday he will have a liver biopsy and a complete cardiac echo. Then next week, if he is still stable, he will be scheduled for an MRI.

He is trending in a positive direction overall but there are definite concerns still and always the possibility of a setback. Splenectomy is not off the table but if things continue this way that may be able to be avoided.

Things have been a bit of a struggle as far as staying here with B. Hospital policy is to only allow one parent to remain overnight which leaves the other of us with no place to stay. We paid for a hotel room one night, spent one night in an Parent Sleep Space for ICU patients, and spent one night at an off site Ronald McDonald type house (Yawkey House) which offers a reduced rate. They do have a RMcD house here but it is reserved exclusively for cancer patients & families. Yawkey House & another like it, Autumn house, do not have any more availability for us until mid february. With the cost of a hotel room near the hospital averaging $200+ for one night that just isn't an option at this point. So the social worker on the unit spoke with the powers that be and Tim was allowed to stay in the units treatment room last night. So long as it isn't being used then he can spend the next few nights sleeping in there. Its pretty uncomfortable but at least we know where we're both laying our heads!!

Things aren't anywhere near normal and we miss the other kids like crazy but we're pushing through it. Both Tim & I will do anything it takes to continue to get the care Brady needs to get well. We thank you for all of your continued love, prayers, and support during the most difficult thing our family has ever endured.

All our love, The Getty's ♥