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

Monday, December 17, 2012

Dear Elizabeth Claire....

Elizabeth Claire,
I know you are sick of being sick. I know I can't feel the exact pain and sickness you feel, but as your mommy, trust me baby, I feel your suffering in ways only you will understand once you have a child of your own.
Every pain, every needle, every excruciating procedure, every minute of lost modesty or embarrassment, every time you feel scared or angry or lost- I feel it as an ache only a mother's heart knows.
And I also understand your frustration, discouragement and even your thoughts of envy. I have felt those same things on your behalf and in my own mind over the last years.
So my Lulu, this letter is for you to remind you of the things we have gained as a result of pain and suffering; your pain alone, and the pain I have had as your mommy as I have watched you take on your trails.....

If you were healthy, you may take the ways your body is strong for granted.
If you and I didn't spend so much alone time together, we wouldn't talk as much as we do.
If we weren't stuck in the hospital room as much as we are, we wouldn't have as many of our own silly jokes or secrets.
If we never had to wait (and wait and wait) for doctors or recovery, we wouldn't be practicing so much patience.
If you weren't sick, you wouldn't have helped put something back together without even knowing it was broken ( a story I will share with you when you are older).
If you weren't sick, I wouldn't be as strong as I am or as good of a mommy as I am to you and your brother and sister. You have given me that gift.
If you didn't have to fight through pain the way you do, you would not be nearly as compassionate towards others as you are.
If you weren't suffering, many of us may not be reminded of humility, endurance, grace and patience as often as we are because of what we see in you.
If you weren't sometimes too tired or sick to do things, you may take for granted the days you are strong and doing fun things.
If you weren't sick, there would be so many less prayers and less people talking to God.
If you weren't a little hero, we wouldn't have been as touched by the lives of your hero friends, and goodness, can you imagine life without having those friends?
If you didn't have to practice mind-over-matter or have to be brave so often you may not be as strong as you are now.
If I didn't watch you endure so much for so long, I wouldn't appreciate much of what I do, in the ways I do- soaking in the happiness you, Kate and Jack bring. Breathing in the yummy way you smell after a shower, just as I did when you were a newborn. Closing my eyes to take in all of your giggles and the sound of your voices singing. Committing the happiest days to memory knowing they will get us through the next trial and bring us smiles again.
If you didn't have to suffer my sweet girl, we may not recognize that life is hard, but it is also so wonderful in even small ways.

These are a lot of "ifs", I know. There are many other ifs or whys that we could list that have nothing to do with your suffering. Everyone has a list and is fine to question things and even be sad about some of them.
I want you to remember that even though life can feel so unfair and even as if God has forgotten to protect you or answer you at times, many of our "if's" have awesome answers and there is always something to be grateful for.
I love you Elizabeth Claire. If only you could grasp how much and how proud I am to be your mom.

Finally, an Update

It has been a long time since my last post. Though I have much to say, I will keep this blog entry to the point and factual as it is prayer for health that I would like most right now.
I last wrote when Liz was in-patient at CHLA for the colon manometry studies. We were a bit surprised when we learned that the tests revealed that her colon is not contracting much at all without the use of medication and enemas. We knew she had some issue going on, as her chronic impaction and other symptoms indicated, but her physician and Walter and I were surprised by the severity of her dysmotility. Unfortunately, the probes placed in the OR before the start of the day-long testing weren't able to be threaded to the right side of her colon or her cecum; frustrating at the time, but very disappointing now that we know how severe her dysmotility is. We need to know what her cecum and ascending colon is doing. The manometry studies will need to be repeated, perhaps in Cincinnati at the amazong colon/rectal/bowel center there.
After the results Liz was put on a new regimen of meds and enemas, but they are not working in the way we'd all hoped. Unfortunately there are no other medications available to try and at this point we can only adjust meds and enema schedules and try to make sense of her poor colon. Surgery is the only other option. We meet with her motility specialist in Los Angeles in two weeks to talk about whether or not it is time to head to Cincinnati to see the specialists there.
Due to the new findings, her Immunologist has also referred her to the genetics and mitochondrial specialist at CHLA for more studies.
She has had ongoing issues with her stoma (the site/opening where her g-tube is placed) and after much pain, treatment by her GI and home nursing, she finally has started seeing a wound care specialist. Two weeks ago her stoma cultured positive for a Staph infection. Of course this sent everyone into a bit of a frenzy as the topical cream antibiotic she'd already been using wasn't clearing the infection and using an oral antibiotic is not an easy recommendation for Liz due to the recurrent CDifficile. Her infectious disease doctor got involved and after many calls between us all, we elected to give an additional topical treatment a try. Last week, her stoma was swabbed again and is culturing less Staph than a few weeks ago, so we are hopeful the medicated creams are working enough on their own. Thursday she will have the stoma cultured for a third time and we are praying the Staph is continuing to decrease.

Liz has had some great days and has even had two weeks of attending school for the whole week! Admittedly, she is exhausted though and currently we are discussing with her doctors the option of pulling her from school for a couple of months during this flu season and in an effort to get better control of her colon (it is difficult to time enemas and hydration around a seven hour school day).
You may remember that we elected to stop the immunoglobulin infussions (IVIG) in May and watch her body to see what it would do on its own, without the help of donor blood to boost her immune system. We knew that the winter and flu season would be telling in how her body would do without that support. I've been praying that was the right choice.

Today I took her to the pediatrician because her cold-like symptoms are much worse and she has chest discomfort and a fever. Liz and I diagnosed her before we even saw the doctor, as we both know exactly what her sinus infections present like. She indeed does have a sinus infection and her chest pain and tight airways are due to possible bronchitis. Again, an oral antibiotic is not an easy go-to option for Elizabeth because of CDifficle. So, we are increasing her inhaled Azithromycin dosage and Dr L. is contacting Infectious Disease and GI before we begin an oral antibiotic. She is pretty uncomfortable tonight.
Today Dr. L and I talked again about pulling Liz from school and we have decided that we will have her labs drawn on January 4th to evaluate her white count and neutrophil count and then based on those labs decide when/if she can return to school. Infection requiring antibiotics is just such a scary thought for us because of the darn CDiff issue.
Speaking of CDiff, we are nearing a year of her being CDiff free! This is huge and such a praise as that last 9 month-long infection was such a blow to her body. Liz smiled today and told Dr. L and me that she needs a sign that reads "One year CDiff free and I didn't need my sister's poop!" (remember, a fecal transplant was on the table and in the works, with Kate being the donor) : )

Of course the last 2+ months since I've written have brought much more to blog, but tonight these are the facts.... these are the issues our girl needs prayers for.

If you are still thinking of her and praying, thank you.