Tuesday, December 6, 2011

Rollover & 3's along with a little salt (Con't)

This has been a trying week. We were discharged from hospital on Saturday morning (thank you to all of the doctors, nurses and assistants who made that happen in a timely manor). Saoirse's sodium and potassium were stabilized. We were sent home with hydration with a simple saline solution for over nights. Unfortunatly Saoirse still has extreme bloating and gas & is backed up. There are many thoughts as to why she is like this, but no one can pin point it. Kezia and I can.. we are convinced this is all being caused mostly by the methadone she is taking for pain. Of course there are other contributing factors such as an off diet while on radiation therapy and probably too much cheese.. The doctors and nurses are not even sure what is going on. This is extremely stressful and scary actually.. they have their ideas, but no real solid culprit or solution other than laxatives, warm baths and massage. They seem to sooth her at night and she does poop at night while she is sleeping and becomes a little less bloated, but its still extreme and uncomfortable for her. X-rays taken while she was in the hospital at the end of last week didn't show anything other than excess gas and poop. Yesterday while at the Jimmy fund for labs and blood transfusion the doctors suggested we try using Reglin (which is a anti nausea at higher doses) to assist moving things along. Its just so much medicine. $$$$$..

The doctors told us yesterday that if her bloating is not better by thursday (next time we go to the clinic) then they will order more scans of her belly. Shame on us for not insisting it yesterday. So on our way home i started wondering why a gastroenterology was not consulted when we discovered there is a problem. So I paged the doctors and let them know we are making an appointment with a pediatric gastroenterology. We received a call this morning from her primary team letting us know they will order scans so the gastroenterology can see what is going on. So we are doing this today at the Peabody location of Children's Hospital. We are hoping that the scans show what is going on so we can fix the problem. We have to go to the Jimmy Fund tomorrow and depending on what they see we may go see the surgeon who did her belly surgery. We will insist she sees a specialist for gastroenterology. The oncology team seems to thik it may not make sense to see a gastroenterologist because she/he may not do anything different.. well we think she needs to see the specialist. Period. So she will.


  1. Ask your doctors about Miralax (polyethylene glycol 3350). It comes in generic forms too, in the rx aisle by fibercon, etc. At grocery stores and drugstores. It's an osmotic stool softener, non-addictive, very safe. You can use it for weeks. Worked very well for my horribly constipated 2 year old. Recommended by my very smart pediatrician. Hate to hear that your baby is suffering this way in addition to everything else going on. Methadone withdrawal is hard too.

  2. I am not sure if she can drink raw coconut water or not. But if you can check it with her doctors. Coconut water is closest to body fluids. It is very high in potassium. It gives lot of strength to the body. I generally buy it from costco as it is cheaper there. Let me know if you need more information about that. It hydrates the body very very well with no side effects.

  3. it is so hard to be in this oncology world - you want the doctors to be right, and you want to listen to them, but sometimes, YOU know what is best. Never be afraid to be the "mean mommy and daddy" and INSIST on tests or consults!!! You know your daughter best!

    mom to Angel Alexander the Great

  4. Sorry just saw your previous post with the miralax...