Joy Comes In The Morning

It has been one of the hardest weeks I have ever had, and it just got worse as the days went on. Frustration mixed with serious fatigue gave way yesterday after learning of our friend's passing and I cried all day. Bubba losing his life saddens me deeply of course, but even more, my tears would not stop at the thought of my friend's broken heart as she aches. Any mother can only imagine the unspeakable pain Julie is suffering.
I tried to hide my tears from the kids, but that was for not. Telling them about Bubba was difficult, especially for Elizabeth, but it gave way to a great talk. It is very sad that because of Liz's situation we have met and made friends with children who are very sick and my children know about things and deal with things that should come into their lives when they are older, but at the same time I can see how the exposure to pain, loss, and sadness is shaping parts of them for the good. My babies know that death can happen- even to children. My kids know that heaven awaits and that we will all be together again after death. Liz cried and said that she is so worried that Bubba will miss his mommy, and then quickly answered herself by saying "But he will be with God and that is safe."
Tough, tough stuff, right? It is life though, however difficult and unfair and devastating. The kids are more compassionate and loving, and, ironic to some, they have a relationship with God that is made stronger as they are exposed to such hard things.

So, today was a new day and there were less tears. Tomorrow Walter is off and I feel a mother's-heart- need to be close to him and the kids. I would love to get out of town for the day if Liz is up to it because I think we could use a break from this place : )

The latest on Liz is frustrating. After deciding to go ahead with the new drug, then waiting ten days for our insurance company to authorize it after much fighting, paying a yucky amount of money for it, and then praying I made the right decision.... Liz took the first pill on Tuesday night and within 30 minutes started having burning in her chest. Over the time period of another hour the burning turned into pain, then chest tightening and some wheezing. She ended up in the ER for the adverse reaction. This reaction occurred in less than 2% of patients during clinical trials, and it can reoccur with subsequent usage but may get better over time. Because Liz is so little (smaller and younger than the over 18 years of age that the drug is approved for), her doctors do not feel it is safe to use it again.
UGH!!
So, we are out of options for now in terms of treating her motility issues. That is literally what her GI doc said, not just my opinion. She is scheduled to see the director of the motility center at CHLA, and we are hoping she will have more to offer. For now, Liz will visit Radiology on Monday to rule out partial obstruction.
In addition, labs have been and will be done. Her GI was worried at how pale she looked yesterday, so we needed to check counts. Also, Liz has had retching almost every day for the past week and her nausea has increased over the last few weeks. A few months back, Liz had some awful liver numbers come back during routine liver function labs. The numbers were new to me, so didn't freak me out as much as they made her docs scurry. Repeat liver labs looked better, so we agreed to recheck in six months unless she presented in a way to give reason to repeat sooner. Her GI decided they should be done now; so for goodness sake, we are praying her liver looks fine from these labs.
Her doctor ordered another medication to hopefully help with her nausea. We'll see about that.

I voiced how frustrated I am; I can see this train getting ready to crash, and there is no way I know to stop it. Liz is following the same cycle of things escalating and then getting to the point of ending up admitted and all heck breaking loose. Gosh, it is tiring and difficult to keep "putting out all these fires" over and over with Liz's health. Things weren't like this before. A few years ago, it wasn't so hard for her, her body was not so broken.
I also voiced how we all just want her to be able to go to school in September, but that she is so tired and getting so sick after days of doing simple and easy things...nothing compared to a full day of school. How in the world is she going to be able to do that?! Not to mention appointments that we are already scheduling for September. Missing class in Middle School is a big deal, and yet we have no choice on days we have to go Los Angeles for appointments. I am trying to remind myself to take one thing at a time, but I just want her to be able to have a normal school life, and instead we are going to need to rely on her 504 plan (a document that lays out accommodations to be made and work modification for school).

Our prayer requests for the immediate are:
* For Liz's counts to look good. I want great numbers on her liver labs, and I'll settle for stable white cell, neutrophil and platelets.
* For her liver to look alright and not be a factor in any of this.
* For there to be no visible partial obstruction
*For her nausea and retching to get under control. It is upsetting and extremely painful for her when she retches; also, for her Fundoplication to stay in-tact, as each time she retches, she runs the risk of blowing that wrap (the knot that her stomach and esophagus are tied in is called a "wrap" or Fundo).
* PLEASE pray for our friends the Presley family as they deal with their deep pain after losing their Collin (Bubba).

Thank you for continuing to pray for Liz and encourage our family.
{Weeping may endure in the night, but joy comes in the morning} Psalm 30:5