Logan and Ryan arrived tonight around 6:30. I had dinner already for us to eat together in the room and I noticed Logan didn't feel good, and sure enough he had a fever, 102.3. We decided Ryan better go home with him. I wanted to go to be with him and he wanted mommy, but we can't chance me getting sick. Then there would be nobody to stay here with Chelsea. It's breaking my heart. I look forward to Fridays, to seeing my family, spending the weekend together. And now once again, I'm here, alone, in isolation. I sanitized everything and everywhere he may have touched. They were home and sound asleep before I called at 9:30. We figured Ryan was already exposed, so this was the safest plan for everyone. It sounds like there's a flu epidemic throughout the county. I really hope that's not what he has. I can't tell you how heartbroken I am right now. If I had it my way, I would pull him out of preschool and keep him here with me during the week...but of course siblings can't stay here in the hospital with parents, unless they're breastfeeding. Do you think they would buy that? ha!
To make the evening even more pleasant, I overheard two nurses (one of them WAS our favorite nurse) making a comment about me that I obviously wasn't supposed to hear. Let's keep that stuff to ourselves next time girls, ok...it can be very hurtful, especially to emotionally fragile parents like myself. I'll leave it at that.
Chelsea had a busy day, OT, PT and Speech, all before noon! She did really well for all of them though considering she's not feeling her best and she had to be getting tired. Speaking of tired, I think I need to take some happy pills and try to get some sleep tonight!
FYI, If you're trying to call me, try the hospital line, my cell phone is dead and I have another broken charger here that's not doing me any good. What's the deal with the phone chargers breaking????!!!
Hello world!
3 years ago
14 comments:
Hi. My name is Lauri St.Pierre and I have never commented on your page before but I am a faithful reader. My son has DS also, that's how I ran across your blog. I just wanted to say that I am only one, and someone you don't know at all, but I am praying for you and Chelsea (and Ryan and Logan). Reading your posts always leave me feeling humbled and the appreciation of the fact that a real human being is writing this blog as she is feeling it. I appreciate your honesty, candor, and humor. You are being thought of today and admired. You are a wonderful mommy and a strong woman. Keep your head up (inspite of any insensitve comments from nurses!!) because there are people all around, who don't even know you, who think you are awesome.
Carey,
I'm sure the nurses have rough days too but give me a break! They have got to realize that they are there to CARE for both you and Chels. That really makes me angry!
I'm so sorry you didn't get to spend time with your boys honey. That stinks!
Many prayers for your peace and Chelsea's healing.
I love the shower pics. She's such a star!!!
I know this has been a long haul with not being able to see Logan last weekend and now this weekend as well. Keep your faith! There is a plan for you all and sooooo many people are praying for you. Just a few more days and isolation will be over and you can be "free" again.
I am bummed no ice skating today but in just a few months this will be behind you and we can sit in the warm sunshine at the park having a picnic and talk about what a strange dream it was!!
Hang in there!!
Hi Carey- Darn it always upsets me to hear when the staff isn't understanding. I just might need to jump on that plane with a crate full of yard sticks. Charlie & I were talking about taking a long trip over the summer. I said how about Topeka? Huh he said? Heck it's only 1200 miles from Philadelphia and well worth the trip. You know I 'm going to try my best to make it to Chelsea's big "C" free party this Summer,as you can see I've already started planting the seeds. OK I know that was a little side bar just wanted to know how much I wish we could meet and I could be there to keep you both company. I know my hopes and wishes don't help you now but wanted to share them anyway. Sorry to hear Logan isn't feeling well and you are on your own again. Hugs & Kisses Terry & Noah
(((((Carey))))),
I am so sorry to hear that Logan is sick, and that you and Chelsea are still stuck in isolation, away from your men.
It is hard to hear people saying things about us that are not for our ears. I'm so sorry that you were kicked when you are down. People who aren't dealing with disease and its effects in their own lives sometimes forget how utterly personal these diseases are. I hope that it was just a lapse in judgment on the part of your favorite nurse, and not a true reflection of her favoritability. Maybe the fact that she thought you couldn't hear is testimony to an attempt on her part to be sensitive to your feelings, even if she did end up hurting them anyway. Kwim?
Praying for your family,
Esther
Carey,
I've been reading your blog for a few weeks now, and I'm starting to wonder if you find any good in the hospital and it's staff at all. It's gotten to the point that every time I log onto your site, I can expect to hear an update on Chelsea, as well as something negative about the nursing staff that cares for your daughter.
Did you ever think that keeping Chelsea in isolation is NOT to torture you, but to ensure the health and safety of other patients. If you and Chelsea were walking the halls and came in contact with another child who tested positive for RSV, but her social interactivity was of greater importance than ensuring that they are not contagious, how would that make you feel?
I also have a strong feeling that the "3 Feet" comment was an estimate, and they probably didn't think you wanted to hear your guidelines stated in "paces" or "# of floor tiles".
I love to read about your daughter, and I feel tons of empathy for your struggle as a mother. I'm just starting to feel a little down-trodden with the amout of negativity that oozes from your blog. Try to be more sympathetic to a group of people who, I'm sure, have struggles themselves that they do not keep a blog about. Maybe they need prayers just as you and your beautiful little girl do.
OK, well whoever 'anonymous' is obviously has never been stuck in the hospital with a child in isolation! She obviously has NO clue how incredibly difficult it is to try to explain to your little one why they aren't allowed outside the door to play with all of the other kids and the toys. It is like torture...and if Carey wants to come on to HER BLOG and vent about what she is going through then she has absoloutly EVERY right! This is HER blog and HER child, and if you don't like it and can't understand how unbelievably difficult this is, then STOP reading and find another, less realistic blog!! Time for someone to grow up and face the reality that hospital life sucks no matter how great the staff is!
Wow! I have been a friend of Carey's for awhile now and I can say there is not a negative bone in her body. Carey, you just keep expressing yourself. Positive and negatives are the realities of life and your blog is as real as it gets.
When you are already down I hope you do not let the comments of one negative anonymous reader push you down further.
To that anonymous person, please make a better choice in what blogs you are reading. If reality is not for you then this is the wrong place to visit!
We all love and support you Carey! We cheer with you and we cry with you. Our emotions will never run as high or as low as yours but you are bringing us along on your journey. For those of us that love Chels and your family, I say thank you!
Wow! I have been a friend of Carey's for awhile now and I can say there is not a negative bone in her body. Carey, you just keep expressing yourself. Positive and negatives are the realities of life and your blog is as real as it gets.
When you are already down I hope you do not let the comments of one negative anonymous reader push you down further.
To that anonymous person, please make a better choice in what blogs you are reading. If reality is not for you then this is the wrong place to visit!
We all love and support you Carey! We cheer with you and we cry with you. Our emotions will never run as high or as low as yours but you are bringing us along on your journey. For those of us that love Chels and your family, I say thank you!
Anonymous
Sorry but OBVIOUSLY you've never been stuck with your child in isolation in an hospital for days on end. I did it for 10 days and about lost my mind. You know if you can't leave nice comments, don't leave comments at all. POOP ON YOU!!!!
How can you actually think that a mother with a child that has cancer not understand the risk of spreading germs. Seriously!!!!
We have been going to this hospital for nearly a year, it's a great hospital but has it's problems like anyone elses, and it can be very frustrating.
For pete sake, if your not liking what your reading, then don't read it anymore.
I have to 2nd, 3rd, and 4th the responses to Anonymous up there... My daughter has the same leukemia as Chelsea and we were stuck on isolation during one of our admissions... 22 days in a 10x10 room with a 3 year old who doesn't understand WHY she can't go out in the hall and ride her bike and play with her friends like she's used to. A 3 year old who's tiny body is being pumped full of poison to the point that she feels like crap and all you can do is watch helplessly as the tears roll down her face... and you can't distract her by taking her to the playroom. It sucks. Let me tell you, that was seriously the longest 3 weeks of my life. I thought I was going to go crazy. And guess what? I was negative. I was frustrated and angry and YES I understood the stupid rules of isolation, but it still SUCKED.
Carey has handled Chelsea's journey SO well under the circumstances. She is a great mom who feels pulled to be in 2 places at once and it's so, so hard. She's amazing and if it helps to vent her frustrations on HER blog, then so be it. I'm more than happy to read. Lending a virtual shoulder is the most that many of us can do for this family, and having been in her shoes I know how important those shoulders are. I pray to God you NEVER have to endure the world of cancer with one of your children, but should that time ever come, I hope and pray you are shown more compassion than you've shown to Carey today.
Carey,
Please don't take a break because of that one comment! I think it's safe to say that most people keep reading to hear how things are going and to let you know people are "listening". You and Chelsea are stuck right now through no choice of anyone's and if you find it helpful to blog about that experience, go for it, baby!
I appreciate that you shared about the comments you overheard. It is an important reminder for me to not gossip, and if I need to talk about a sensitive matter, to be extra, ultra, sooper-dooper careful about what I'm saying. We all need to be careful about that, and I'm glad for the reminder to watch my mouth so I don't hurt someone.
Keep on posting, Chickadee!
Hugs,
Esther
Please, give me a break!! Don't listen to this B.S. As another cancer mom please know that I think what you have said is right! Keep on blogging! :-) Thank you also for stopping by and leaving a message on Jaxon's site. That was awesome!!
Hugs and prayers,
Amber, Jaxon's momma
www.caringbridge.org/visit/jaxonburns
I have recently come upon your blog. I have a child with mosaic down syndrome. I will pray for little Chelsea. In response to your post about the nurses talking and saying something you were not to hear. I am also a nurse and I am sorry that the nurses were speaking of you. That is wrong and they know that they were not to speak of you or your daughter unless the information was to be communicated for your daughters care. I am truly sorry.
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