Today has been a rough one. Skyler's feeding tube was accidentally pulled out so we had to go down to get a new one. They have to place it under an xray machine because they place it right into his intestine so they have to be able to see if its going in the right spot. He HATES doing this and screamed bloody murder the whole time, but did everything we asked him to anyway. He has to swallow when its going down his nose or else it will just come out of his mouth and he did great when we asked him to even though he was crying. Thats one thing that I have been so proud of him for. Even though he hates everything that they are doing, he always does it. Then when we got back up to the room, wound team was waiting for us to put a wound vac on his pressure sore. Its like a little vacuum that they put on his wound after packing it with spongy stuff. It has a tube that comes out of it and attaches to a little machine. Its supposed to pull it together more so it will heal faster, but it is a pain in the you know what! I hate that he has to have it on. I still have a lot of anger built up over the whole pressure sore thing because it was so preventable. The wound vac is pretty painful for him because every five minutes it starts suctioning, so he has had a couple big doses of Morphine already today and also some Zofran and Ativan for nausea. He got chemo tonight and has been throwing up like crazy. Poor little guy has just had a miserable day.
These past couple weeks I have started experiencing anxiety like I have never experienced before. I am just so worried about him getting sick again that I have become a total germaphobe. Im constantly sanitizing his room and making sure the staff is doing everything to keep the germs out. Im sure the nurses are starting to get so sick of me. The docs too. Yesterday I asked the anesthesiologist to put a mask on and he looked at me like I was crazy. I dont think he was used to having a mom tell him to do something like that. I have just had to learn to not worry about what people are thinking of me and just do what I think is best for my son. When I get weird looks I just think to myself they probably havent experienced having a doctor tell them to say goodbye to their son because he probably wont make it through the night. They probably havent experienced holding their sons hand and thinking I only have hours left to feel this warm hand before it is taken away, or thinking that they will never get to see their sons eyes again or hear him talk or laugh or smile again. Well I have. I cant even put into words how incredibly painful that night was for me, that was a low that I NEVER want to experience again and it was all because of an infection. So I cant feel bad about being "overly protective" It just seems though that the better he gets the more anxiety I get. I just want to put him in a little bubble and keep him in there until this is all over, but I know thats not reality and its hard to know that he may get sick again.
9 comments:
Amen Crystal...no one knows except those moms who have been down that same path. I say...don't stop. Skyler is the only one that matters! (ok and you too ;)
Hang in there! Your doing AMAZING!
Hi Crystal-I hate hearing that Skyler had a bad day today. He has gone through so much, and so have you. You are such an amazing mother. I cannot even imagine the mountain of worry you carry around on your slight shoulders. I know without a doubt that your gut feeling for asking the doctor to wear a mask was spot on. Even though we have never met, please know my family will be sending extra love and prayers your way.
We have had to go to the Specials department many times. It has been at least 4 years, but they were always so good with my son but I had a direct line to them when we had it. We ended up going about every other month since my son's tube always had something going on with it. We had a GJ tube. We have had a G or a GJ since he was 3 months old and he is now 6 years old. Don't know what I would have done without that thing.
Good luck on the germ thing. I have never been in your shoes and you amaze me everyday when I check on Sky, but I have been in the shoes of making sure that my child doesn't get whatever is going around because of having a really crappy immune system. Being at PCMC during the winter time is NOT the best thing since it is so germy there. I had one of our nephrologists tell me that the best thing in the world is soap and water. I wanted to go home and clorox my house and make sure that everything was nice and clean and he said that sometimes it is good to have some germs so that they can start building something back, however in Sky's case that may be awhile since he is getting chemo and it kills his immune system every day, but at some point that may happen. Good luck and you will be glad that you used your voice even when it wasn't the popular thing. But I would suggest more soap and water and not so much of the hand sanitizer (it does a really bad number on your skin even if it says it has aloe).
I cant even imagine what you've been through....I cant imagine the anxiety you must feel. I will continue to pray for you. Hang in there! You are doing the right thing. You are Skylers only advocate and he needs you to keep him safe when others wont, or just dont know. Im sorry your cutie had a rough day. Hope today is better!
I had to have a GI tube put into me as an adult, and I cried!!!! It was so uncomfortable, and felt like an invasion of my body, even though I knew it was necessary.
I don't blame Skyler for not wanting to go through that again.
And I certainly don't blame you for not wanting to lose all the progress that has been made. Skyler is a miracle boy, and you are his miracle mom.
Crystal your anxiety is so normal and anyone that thinks you should feel any different can eat dirt. It gives me anxiety and he is not my son, it gives me anxiety and I have only expiernced Skylers story through your blog. Over time your anxiety will calm some. You may never be the easy going one with germs again, as you know more then anyone should ever know just what dangers some germs can pose to us. So you are right when you get funny looks, just remember that you are the only one that has walked in your shoes and there is only one judge in this world and that is because He is the only one that has walked in your shoes. When Jager had bacterial meningitus when he was 5 days old I was amazed at how often the drs and nurses didn't gown up or wash. It can be really scary to tell those drs and nurses to wash because you all ready feel like your child is not your child and if you say something they may get mad, but you are his mom and you are the boss. Anyways!! Enough of my mumbo jumbo
Dont you worry one bit what people think!
No one knows better than his Mama.
Sometimes Doctors can get hardened.
You require whatever feels right to you!
Hang in there Girlie - you are amazing!
It sounds like you know exactly how to be Skyler's advocate. They DON'T know what it's like and there is no way to explain it to them, or to me, or to anyone who hasn't experienced it and have the emotion you felt come through. So you do everything in you power to never have to experience it again, even if that makes you seem over-protective. It is worth it. And your anxiety comes from never wanting to relive that experience again. Anyone would have it. I hope today was a little better.
Crystal,
You're doing everything right. Don't ever underestimate a mother's intuition.
To feel a great deal of anxiety right now is completely normal, but certainly uncomfortable. Let your wonderful family help take some of the burden so that you can unwind. You need to pamper yourself and re-fuel. You deserve it.
You are an inspiration to so many. Carry on!
Jenny in New Jersey
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