Many of you know that I was able to sneak away from the hospital late Friday night and I did not return until this afternoon thanks to great friends and even greater parents. The nicest thing my mom said to me when I called this morning was “I have no idea how you have done this for so long!” It was so kind of her to acknowledge the difficulty of living in the hospital 24/7. We had a really nice weekend all things considering. We had perfect pool weather, so on Saturday, I made it my mission to never leave the pool and it was a mission accomplished. We ended the day with smores by a fire. Besides the obvious emptiness of not having Keyan there, it was a birthday day full of relaxation of fun.
Basically, the rest of the weekend was the same. More pool time, kids learning to swim without swimmies, my favorite foods, sleeping in my own bed next to my great husband, snuggles with my kids whom I miss so much, trying to find my place back in the family temporarily, hashing out Keyan’s situation, and just taking a short reprieve from our crazy life. it was really nice.
Before I left on Friday, I “snuck” Keyan outside for 15 minutes or so. It felt so great to me, but unfortunately, she gets used to being inside that she is pretty grumpy about the brightness of the sunshine, and doesn’t really enjoy the breath of fresh air like I do, but we did it anyways! This picture was basically the only smile I get while we were out there. The rest was crabbiness….understandable when you look at her situation but it makes me sad none the less.
This next picture can sum up Keyans life of fighting through life-threatening illnesses. She tries her best to smile thru it all and not let on how miserable she is. We often comment on what a trooper she is but sometimes it just breaks your heart. Here you can see she is bruising VERY badley where they took the old broviac out and where they put the temporary central line in (the pics do not do it justice). She has NEVER bruised like this before and while not worrisome to the medical staff, it worries me because it is just another thing that is new. However, despite how sore her entire chest was, she still smiles for the camera. That sums up Keyan’s life. Smile thru it all and keep LIVING thru this infection. She has an undeniable strength that we can all learn from and the willpwer to keep battling this life that she calls her own. Amazing!!!!
This week should be a busy one. She has a hearing test scheduled tomorrow because she did not pass a hearing screening while at Mary Free Bed. Hopefully, that will turn out OK, we don’t need new issues! Then sometime this week she will go into surgery to have a new broviac placed. After that it is crunch time for a second opinion. We need one and we need one NOW. We can’t wait or she will just be sick again. Please pray that we have clear direction on what to do about all of this…it is a lot of big decisions! Enough for now…I hope you had a great holiday weekend. Here is to a productive and busy week!
Oh, by the way, it seems that all of the IV meds are doing there job because she is feeling more and more like herself. She is talking more, bossing more, and feeling more frustrated about being in the hospital...all good signs!
1 comment:
Yea for working IV antibiotics, and yea for a weekend away! Happy Birthday!
Keyan is such a trooper, but boy, I sure wish she didn't have to be. My fingers are crossed that the second opinion is a good one and that they can help get her home and keep her away from the hospital for awhile. Because honestly we all don't know how you do it. (((((HUGS)))))
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