After taking Jace to the Ped and local ER multiple times for severe upper right side pain, with only the suggestion it was another intestinal blockage, (that I hadn't let up on treating from the last flare up they said had to be it) we knew it was more serious. In desperation, we took him all the way to PCMC's ER. Within an hour they had him diagnosed. Pancreatitis. If left untreated, the symptoms go away while the damage to the pancreas continue, and on to the other organs. We were so grateful someone finally listened and figured it out. We know our boys. We don't exaggerate their symptoms or needs, and I get so sick of medical professionals that assume that because it's out of the norm, we must be. We aren't the norm... that's been proven repeatedly. *insert eye rolling*
They admitted him and treated, while also putting him on an IV antibiotic for the MRSA with his Gtube site that still had not healed.
I was grateful the boys' neuro was there on Sunday to make the med changes, instead of someone who had no history with them whatsoever.
Once stable, we could leave. The night before Christmas Eve.
The whole stay was super emotional for me. First time back in the testing areas and recovery unit since being there with Aidan. Such raw feelings, frankly, such bad memories. I couldn't bring myself to take the gift I had for another child to the PICU. I left it with others to do. He endured such pain and manipulation there.
Right away, the head nurse and social worker came to see me, and Jace was put on Comprehensive Care, and Rainbow Kids.
Hopefully having him with those groups sooner than Aidan will help in the ways I've been promised. Though Aidan totally qualified years beforehand, he wasn't put on Comp Care until the pulmonary failure.
I was asked how I felt about Damon being in those groups too. I've chosen to wait until his condition worsens again.
There is already talk of hospice for Jace. Though this is not surprising to me, knowing how sick he's been the past year, and really really knowing firsthand what I do now from the geneticist's warnings, it is still like being slapped. I'm choosing to hold off on hospice. It's not that I believe anything will change, it's that I don't see any sense in using services I am capable of providing for him so far. Of course, when that changes, I will allow the Drs to step in and add it.
I've asked the Drs why we still don't have genome sequencing results yet. They just keep saying that it takes a long time and is not surprising to them, though frustrating for them as well.
Christmas Eve we took a gift for a child at EIRMC's PICU. And wow, that, was, hard.
The second the charge nurse saw us, she began and I began to cry.
But we need to do this. We know children who are medically fragile and in the hospitals all the time, are so isolated and could really use surprises to take their minds off what they are expected to endure 24/7 day after day. For obvious reasons, this is close to my heart, and something we can do. Something we can keep increasing upon.
Jace's Gtube site looked amazing, after having IV antibiotics. But when we left the hospital they took him off those and put him on oral/Gtube form. Should have been fine, but it didn't work. We ended up back at the pediatrician's office again because it started looking and feeling awful again. :(
A new in-home IV was ordered. These are slick little infusions, and much better than the ridiculous machine operated ones in the hospital. Just sayin'. :)
As I looked back on the past year, it wasn't pleasant. The year brought such deep heartache. But I can also see, how much our family has grown together, and our relationships run incredibly deep. There is a connection there that we may never have gained otherwise. One that most people really don't get. I try to explain, and the only ones (besides the few super close family and friends we have) who seem to understand are other parents of medically fragile children who have managed to stay together. It's not easy, many end in divorce. Many have no clue what their child/ren truly need. Which breaks my heart. So much unnecessary suffering on top of an already daunting task.
I get asked all the time, "how are you doing?" Some people, even family, don't really want the answer, because they actually don't care and are only asking it for appearances. Some ask wanting the condensed version, because they know darn well the answer isn't thrilling and they feel helpless. And some ask wanting the full truth because they know us well and really care, but still feel helpless.
What I wish these people knew?
If you don't actually want the answer, don't bother asking. It's just obnoxious. There, I said it. We don't have time for fluff or extra crap in our lives. I can't even get my hair cut, why on earth would I want to have a useless conversation with someone who's intent is only to look like they care once in a while, or worse, is just digging for info they are planning on twisting?
If you care, but feel helpless, don't beat yourself up. Please. We appreciate every prayer, every meal, every message of love and support, all of it. We often don't know what to ask for, mostly because what we need, can't be provided. Or it's just too complicated and we think we are better off just going without. But knowing you genuinely care in itself is helpful, whether it seems like it to you or not.
I watched this little neighborhood, my online E community, and even complete strangers from all over the world, come together to help us and Aidan specifically. It was down right magical. Such a giant spirit in that small, little man, frail body. And such good in people of all different backgrounds. We truly are all God's children. I wish we could remember that more.
And though it included excruciating suffering for him, Aidan passed away surrounded with love and adoration... not alone and abandoned in a hospital. This was his desire. And ours... we wanted every moment possible with him to love and serve him. Hospice provides the bridge that makes it possible and I'm so grateful for it. I didn't mind taking care of him, and would have done it no matter how long it went on. But when Aidan lost his eye sight, all his strength, much of his hearing, and his ability to speak, I knew he was done. He was promised that he could/would make the decision when it was time for him to go. He held on until his entire body had failed him. At first, I was sort of horrified by this... because he suffered so much. My precious boy, who I wanted to protect, and to be able to go painlessly, was actually going quite painfully. It took my breath away, and made me sob often. Still does. But then I think about that promise, and how much Aidan loves us. Aidan loves us with his whole being. Just as we love him. And it's not so hard to understand why he hung on that long.
Secret santas brought gifts to spoil Jace and Damon... when asked what he wanted from santa, with a confused look on his face, Jace replied, "presents." :) I love their sweet innocence, and lack of expectations for material things. What they expect or want, even though they can't express it verbally, is to be treated with dignity and concern for their feelings. Pretty universal, I don't know a person on the planet that doesn't desire such. What I think a lot of us get backwards (I forget and mess up, I'm trying hard to remember this) is while we expect our children to learn they need to do the same for the others around them, our example is the only effective teaching tool of this, not demanding or manipulating it from them.
So this year ended much like last year did, only Aidan's suffering is over and he is with our Savior, my dad, his younger brother... and us. Very thoughtful friends brought gifts from the heart that I will cherish until I can soak up Aidan again.
Jace's Gtube site looked amazing, after having IV antibiotics. But when we left the hospital they took him off those and put him on oral/Gtube form. Should have been fine, but it didn't work. We ended up back at the pediatrician's office again because it started looking and feeling awful again. :(
A new in-home IV was ordered. These are slick little infusions, and much better than the ridiculous machine operated ones in the hospital. Just sayin'. :)
As I looked back on the past year, it wasn't pleasant. The year brought such deep heartache. But I can also see, how much our family has grown together, and our relationships run incredibly deep. There is a connection there that we may never have gained otherwise. One that most people really don't get. I try to explain, and the only ones (besides the few super close family and friends we have) who seem to understand are other parents of medically fragile children who have managed to stay together. It's not easy, many end in divorce. Many have no clue what their child/ren truly need. Which breaks my heart. So much unnecessary suffering on top of an already daunting task.
I get asked all the time, "how are you doing?" Some people, even family, don't really want the answer, because they actually don't care and are only asking it for appearances. Some ask wanting the condensed version, because they know darn well the answer isn't thrilling and they feel helpless. And some ask wanting the full truth because they know us well and really care, but still feel helpless.
What I wish these people knew?
If you don't actually want the answer, don't bother asking. It's just obnoxious. There, I said it. We don't have time for fluff or extra crap in our lives. I can't even get my hair cut, why on earth would I want to have a useless conversation with someone who's intent is only to look like they care once in a while, or worse, is just digging for info they are planning on twisting?
If you care, but feel helpless, don't beat yourself up. Please. We appreciate every prayer, every meal, every message of love and support, all of it. We often don't know what to ask for, mostly because what we need, can't be provided. Or it's just too complicated and we think we are better off just going without. But knowing you genuinely care in itself is helpful, whether it seems like it to you or not.
I watched this little neighborhood, my online E community, and even complete strangers from all over the world, come together to help us and Aidan specifically. It was down right magical. Such a giant spirit in that small, little man, frail body. And such good in people of all different backgrounds. We truly are all God's children. I wish we could remember that more.
And though it included excruciating suffering for him, Aidan passed away surrounded with love and adoration... not alone and abandoned in a hospital. This was his desire. And ours... we wanted every moment possible with him to love and serve him. Hospice provides the bridge that makes it possible and I'm so grateful for it. I didn't mind taking care of him, and would have done it no matter how long it went on. But when Aidan lost his eye sight, all his strength, much of his hearing, and his ability to speak, I knew he was done. He was promised that he could/would make the decision when it was time for him to go. He held on until his entire body had failed him. At first, I was sort of horrified by this... because he suffered so much. My precious boy, who I wanted to protect, and to be able to go painlessly, was actually going quite painfully. It took my breath away, and made me sob often. Still does. But then I think about that promise, and how much Aidan loves us. Aidan loves us with his whole being. Just as we love him. And it's not so hard to understand why he hung on that long.
Secret santas brought gifts to spoil Jace and Damon... when asked what he wanted from santa, with a confused look on his face, Jace replied, "presents." :) I love their sweet innocence, and lack of expectations for material things. What they expect or want, even though they can't express it verbally, is to be treated with dignity and concern for their feelings. Pretty universal, I don't know a person on the planet that doesn't desire such. What I think a lot of us get backwards (I forget and mess up, I'm trying hard to remember this) is while we expect our children to learn they need to do the same for the others around them, our example is the only effective teaching tool of this, not demanding or manipulating it from them.
We sure miss you Sweet Pea.
But I know you are with us. Helping your brothers. Helping all of us.
Love you forever and ever.
No comments:
Post a Comment