Life is wonderful and difficult... and I am grateful!

Tuesday, January 8, 2013

You Are My Race

{There is a favorite children's book of mine called You Are My I Love You (many of you have received the book from me as a baby shower gift) and currently lines from the book are making their way around Pinterest and facebook. Seriously, the beautiful words in the story get me every time I read it to one of the kids.
Two of the lines in the book have touched me in a new way over the last few years as they make me think of the journey Liz is on....I am your finish line, you are my race.
I am your way home, you are my new path.
I have said more times than I can remember and I have heard other mamas echo the same, that this feels like a marathon we are running with our sick children. It is exhausting and difficult and I wish we knew where the finish line was. I'm starting to understand that there may be no finish line for Liz medically. She is always going to have to deal with her health and this marathon is going to be a lifetime race.
What I can do as her mom is be her finish line, so to speak. I can cheer her on. I can advocate for her and rally for her so that there are mile markers she can see and accomplish and overcome along the way. When she gets too tired, I can pick her up and carry her until she is ready to run again. I can open my arms and wave her in and towards her finish line- whatever that may be.
We never would have chosen this path, but I will help her find her way. }

The last week has been difficult for Liz. Since my last update, she did end up starting on an oral antibiotic as her Staph just wasn't healing and her sinus infection had gotten pretty bad. We are now just praying that she stays clear of CDifficile infection as a result.
In the past week she has had two clean-outs due to impaction. It is just this never-ending cycle of impaction, dehydration, soiling, not eating, and back around again.
Her stoma (GTube site)  still isn't looking good or healing the way we'd hoped. She had an upper GI last Friday that showed the tube is placed well in her stomach which is good news. Her surgeon is thinking we may have to change to a new kind of tube, but I would hate to do that as right now she has a low-profile tube which means she has a little "button" sticking out of her belly and I hook her to the tube during her feeds. The new kind of tube would be a tube hanging out of her all of the time. Not ideal. The GI doctor and the amazing GI nurse clinician at the hospital are working to see how we can get her into see the inpatient wound care nursing team, as they know tricks and have supplies that even most docs don't.
She has declined in terms of her colon over the last couple weeks. We have started a new plan of weekly clean-outs and enemas in addition to her meds, but two of her doctors have asked me to seriously consider surgery to do a Cecostomy and Appendicostomy. I cannot even go there right now.
Today I took her to see her pediatrician because she has been short of breath over the last few days....alright, more like I noticed it about 5 days ago. She has been saying that she feels dizzy at times, but that is not a new thing and is usually caused by dehydration. The shortness of breath is new though and it has gotten worse, so I took her in..... she has partially collapsed lungs. This has been caused by the stomach pain she has been having and being so full of stool has caused her not to breathe deeply enough to really get air through. She is in no distress and she has no wheezing or chest pain other than when she blows out or takes a deep breath. She is using the spirometer every hour to move those lungs and we  are doing breathing treatments every four hours to try and prevent pneumonia (she has a bit of a drip and congestion now and she has had pnemonia before and is susceptible). She'll be re-evaluated on Thursday. I am sure it will be better by then.
There has been discussion about her next bone marrow aspiration. GI said she should be ready in the Spring to have it done, but her Pediatrician wants to wait until the summer. We want to make sure that if her improved nutritional status is going to help her marrow we give it enough time to work and prove itself rather than testing too early and thinking it hasn't helped in marrow recovery.
Next week she will see a Genetics and Mitochondrial specialist for the first time at the request of a few of her doctors. Honestly, I am too covered in poop (figuratively, but literally too) to give much thought to that appointment or the reasons we are being sent there. I will deal with it on that day.
School.... is up in the air. I need to decide what to do about it. She missed the week before the two week Christmas break and she isn't going back this week. We just need to decide what will be best. For now, she is my shadow again.

Thank you to those who continue to pray for her and support us on this race. I hope you know how much we appreciate you.

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