What makes today different? Perhaps it's the fact that it's day five of Ivee being hospitalized for the first time since her last battle with cancer in 2011.
(Ivee's first night here at the hospital in TX. Mom had just returned from a five day trip with Brittney and friend and came home to this)
Since Ivee's last tumor resection, her lungs have been taking a slow and steady decline. As many of you know, she lost use of her vocal chords at 7 months of age in 2006, but she received use of the left one shortly after that initial brain tumor surgery, and to the doctors surprise, three years later her right chord was moving some. However the tumor resection in '11 knocked both chords out again, and though the left recovered it is not at it's prior strength, and the right never moved again.
With brain stem/spinal chord pressure and adema (cyst like fluid) in her brain, along with six months chemotherapy and 63 total doses radiation to her brain, Ivee has balance problems and left side weakness, most prevelant in her tongue, if you ever want to see proof. She can walk unassisted now for almost two years without a walker, but she easily falls and has to be quite careful, and has trouble with her gate and right leg. Children who are not aware of her situation, or let's face it oblivious to their surroundings, can be quite an obstacle for her and unfortunately dangerous. I've had to at times, even in front of a parent, reprimand nicely a child who was causing an issue for her. By God's grace, I haven't meet a parent who was upset at me for having to do so. Ivee's personal struggles are not with her unability to do things other kids can do, for she doesn't see her differences, most of the time. She will gladly tell any waiter/waitress or anyone who offers her food, that she is g-button fed. If you're ever so lucky, she'll show it to you before I can stop her from doing so. She will try to keep up with the best of them, trying to walk, or even run, dancing, doing choreography, she will try it all, and does well, except for the running part. But I digress.
The one area she can't seem to make progress in and has been declining is her lung strength. We had her tested during this hospital stay, output and input breathing are controlled by different muscles for those who may not know. And not to my surprise, she has great in take volume, but her output is quite below average. This is why you can't here or or sometimes understand what she is saying. We can be in a slightly crowded mall, not too noisy, and I won't be able to hear her at all with all the other noise. This actually happened once, while getting ice cream. As we left the store she was in absolute distress crying, and we didn't notice till we were a but down the mall hall. We hadn't heard her ask for a bite of chocolate to taste test. Broke my heart cause she said, "I was trying to talk to you...(sob,sob)... But you couldn't hear me...(sob,sob)." She doesn't eat by mouth, and really has no desire, which is great, cause she aspirates. But every once in a while, she just wants a taste.
Aspirating is actually our greatest concern for Ivee now. We don't believe that is necessarily what landed her in the hospital at this time, but it is possible that the bacteria in her saliva has lead to her first case of pneumonia, double pneumonia that is. We have seen quite a dramatic decline in her lung health for the last year. In the very beginning of our meetings with the pulmonologist, a tracheotomy was mentioned, one doctor quite adimate about her needing it immediately, prayerfully the other doctor wanting to exhaust all other options first. Thankfully, the doctors here in Houston are wanting the same, putting a trach as a last option.
(this picture I took yesterday after she had to be stuck for a seventh time to get her fourth IV. They either kept blowing out or sweeping up)
So, here on day five, I sit quite sore from sleeping on a hospital couch next to my little girl, an all too familiar sight for the last seven years. I look forward to sleeping in my bed tonight as my husband jumps in the ring for me, but my poor spirit is worried and concerned for what we must do for Ivee. It's not an "unnatural" worry, just a constant reminder of what I learned on December 18, 2006. I am never, nor will I ever be in control, I will never know the future or the outcome of even the smallest problem. All I can do is pray, and my prayers include asking that this be the last time. The last hospital stay, last worry, and that the doctors will find a fix or God will just heal her. I sometimes wish I could punch something, or maybe someone, if I'm quite honest. The only thing harder than watching your kid go through all that I have, is watching them die. At times, I was watching just that happen, and sometimes I realize, I might still be. Not a quick death, if you want to call it that, where cancer just becomes her, but one where what cancer left behind slowly takes her health bit by bit. I know it's a morbid thought, and I don't have it often, but in this post I'm just being honest. I feel very inadequate to be her mom sometimes, wishing I knew how to do more for her.
But...I have not lost hope, nor have I lost praise for The Lord in all this. I know that human existence comes with suffering, but I also know it comes with perseverance, endurance and need to finish the race, even if it's just crawling or inching our way across the finishline. And today, we are weaning her off oxygen during the day, praying that our new night time regime of BiPAP and oxygen will help her once again dodge a tracheotomy.
(She's told me she wants to play violin. I brought her a play one back from Cozumel. She is playing along with Imagine Dragons "Radioactive" today)
Today she is feeling better though quite congested still. We pray they will let us take her home tomorrow. And let me say this as well. It seems that I only blog the hard medical and hospital related stuff, but The Lord is doing much for us as a family since we've moved to Houston. I feel convicted that I need to share those things. So, as an accountability to myself, I am putting out here today. I will blog about the great things happening for us as we are all beginning new and even maybe scary (for some) milestones in our lives.
Thank you to all of my friends, family and even those who just love us though we've never met. Thank you for your prayers and encouragement and just letting me vent.