Nausea, fatigue and food

The last two nights weren't great. Ollie has had constant nausea and barely slept. Which means Daddy didn't two nights ago and Mommy didn't last night. So we are very tired today. More nausea all day today. The regular medicine we use during chemo that helps can't be used this time around because of the heart rate and breathing issues he was having in ICU which they don't want to recur.

We also think the formula they're giving him in his feeding tube while they have been restarting him on food after he had nothing but fluids for 12 days has been making him ill while he sleeps. So today they changed his food to something with ACTUAL food in it. 

It made me think of when Abby was a baby and the pediatrician thought I should supplement my breastfeeding with formula for the first while as she wasn't getting enough. Abby hated every one of them. Mario found a YouTube video where a dad did a taste test of baby formula. Mario thought this a great plan and set out to test each one we tried with Abby. The end result was he swore they all tasted like cardboard and she wouldn't take any, so we found other ways to increase my milk and I went on to breastfeed both kids exclusively. Maybe Ollie's body like Abby's is rejecting them knowing that's not the good stuff.

So we are focusing on eating real stuff. This has been harder today because of a loose tooth. He had two loose teeth, yet it seems he somehow lost one undetected when we were in ICU. So now he's pulled out the other one. Before doing so we checked that his platelets and Neutrophils were high enough to so that he wouldn't bleed excessively or be prone to infection. What a world we now live in that we have to check these things before wiggling out a baby tooth.

Also today his blood tests showed that his sodium was a bit low again and given they don't want him to have the same problem as in ICU they are now having to limit his fluid intake again. 

Syndrome of inappropriate antidiuretic hormone secretion (SIADH) is a condition in which the body makes too much antidiuretic hormone (ADH). This hormone helps the kidneys control the amount of water your body loses through the urine. SIADH causes the body to retain too much water. It can also cause seizures and stroke-like symptoms as we saw first hand last week in ICU. By reducing the fluid, the concentration of sodium is better in the urine because there is less urine to dilute. Today the Endocrinologist who discussed this with me asked if I worked in the medical field when she asked what I knew about it and I explained that this is what I learned from our stint in ICU. Thankfully my brain is able to retain bits of information and connect dots between related things. 

Tomorrow he'll have another lumbar puncture (LP) with inter-thecal chemo in his spine. A few more LPs and we should be done that part at least and maybe even get the miracle we are praying for to get his sight back, too.

As a side note we have met a couple of new families here and tried to help them where we could. One is a week in to their leukemia diagnosis with their 13-year old and noted one day in the kitchenette that they should bring food to the hospital because everyone they know wants to bring some, but they just don't know how to get organized. I shared our meal train web site with them so they could have their family set up a similar one for them, too. Another lovely family is from North Bay and have a baby boy (under 6 months) with leukemia and a four year old daughter. The dad has been driving back and forth 20 hours each weekend with their daughter. The mama and baby have been here continuously since December 26. She told me she's just recently come out of the shock of it all and started to talk about it. They have no family or friends here, either.  So we're sharing the plentiful and delicious food that folks have brought us with this beautiful little family because we often can't eat it all and our freezer is not big enough to hold more. So many of you are nurturing us and we know you won't mind if we share some of your love and support with them and their little M (who has already stolen our hearts). It reminds us again of how blessed we are despite everything to have all of you helping us and also made me think of my grandma who always said if you can help someone you should.