The first 24 hours with Jax home has been fairly uneventful. Last night I was hoping being home and finally able to breathe that he would sleep good. Wrong, he woke up at 1:00 and nothing I was doing was helping him. He would fuss, fuss, fuss. I finally had to walk away from him, having no sleep the night before was making me already crazy. So daddy got up and somehow got him to sleep. He did sleep the rest of the night after that. The other thing is the oxygen tubing that fits on the trach is not working at all. The tubing goes of the side, so its always in his way. If he could walk, crawl, or even sit up, it may not be so bad, but it pops off more that his cannula ever did. I did see on another blog a setup that may work, so I'm working on finding out how to get that for Jax. Its basically the trach mask he wears to bed, but it attaches to oxygen tubing. I need to get me some of those.
Now here's the drama. Last night I get this voicemail from a guy saying that I need to take my son to the ER because his blood test came back wrong, and to check in with oncology. So at first my heart drops and the first thing I think of is luekemia. Then after I calmed down I realized that this man didn't even say a name. What if he called a wrong number. So I called him back. It was for Jaxson, but I don't know how the results got to him in the oncology clinic. It was blood cultures ran Friday came back growing bacteria. After tracking down the resident at the hospital, she said to take him to the ER because he needs antibiotics. Instead I called my pediatrician. She looked it up and told me to wait until the next day when it says what the bacteria is. It may just be contaminated, unless of course he gets symptoms like fever, increased oxygen need, etc. Today he's been fine, so I'm glad I didn't take him in. We avoided an unnecesary trip.
Wahoo!!
Shame Lacey - im praying for some rest for you and Ray! Also keeping Jaxson in my prayers that he remains well and that he does not need any antibiotics and that he goes from strength to strength! Im sorry you had to go through those thoughts after the voicemail message, that was really insensitive of the caller to even mention oncology! Thank goodness it was not for that! God bless! PS - totally agree with you about the elephant kiss, he he, my step sister from canada insisted I do it!
ReplyDeleteI am glad he got some sleep and even happier that YOU finally got some sleep. You have to take care of yourself in order to take care of the kiddos!!!! I would totally flip if I got that phone call. I hope that everything is okay. It is a good sign that he is doing okay right now. As always...you are in our thoughts and prayers!
ReplyDeleteOh I am glad that you are home and hope that things calm down for you so you are able to get some rest. Sorry to hear that you got that scary call and hopefully it's nothing. Glad Jaxson got some sleep. (((hugs)))
ReplyDeleteDon't doctors realise how much they can freak us out with phone calls like that???
ReplyDeleteI hope everything settles down as Jaxson gets used to being at home with his new equipment.
Yes, always drama! You poor woman! Praying the bacteria is nothing serious and that you can get the new O2 set-up soon and that Mr. Jax begins sleeping well again for you! Then, you need a reward after all of this! Hang in there! HUGS!!!
ReplyDeleteGlad daddy had the magic touch and got him back to sleep. Hoping you all got some rest. Thankfully you followed your mommy instinct and didn't take him back to the ER. Will pray he stays healthy.
ReplyDeletePhone calls like that are not fun... making us panic like that! I am sorry he had a rough night, but glad that Daddy was able to get him to sleep. Hope each night gets better.
ReplyDeleteOh Lacey so sorry to hear that you got an unnecessary phone call! That stinks! You must be exhausted?! Keep your chin up and we'll keep praying that things will get better. "HUGS" :)
ReplyDeleteWhat a scary phone call to get. Glad u didn't waste a trip. Glad to hear that Jax is home. Hope all of you get some rest.
ReplyDeleteummmm...wow.
ReplyDeletethat may take the cake as one of the least professional medical communication scenarios i've heard about.
thank goodness you're more experienced than the average joe...
sending hugs to jaxson and his fan club...
Isn't it funny how they always seem to fall asleep for the Daddy? I'll fight and fight with Reagan to go to sleep and then my husband picks her up and she's asleep in minutes! I really feel for you...having to deal with seizures on top of everything else! So frustrating. I wanted to let you know, I heard something about Dr. Shields that he's going into semi-retirement (he's taking the rest of the year off) and won't be seeing patients again until sometime after February. You may want to call now to see if you can get in to see him then. We would love to get in to see him too, since none of the doctors we've seen have been able to help Reagan.
ReplyDeleteNice phone call, son of a gun if that's not enough to stop your heart. Glad you investigated on your own.
ReplyDeletePraying things get better, especially your nights
It never ends. I am so sorry. And then the phone call...my goodness. My heart would have stopped!
ReplyDeleteHey Lacey,
ReplyDeletesorry I haven't been by but the girls are very sick and I am just at my wits end with no sleep here. I am so happy you guys are home. Please give sweet Jaxson a huggle for us.
Glad to hear you are all home! Praying that the adjustment to being back home goes smoothly.
ReplyDeleteSo glad to see that he's home! Sorry he had a rough night though; hopefully you'll be able to figure something out about the oxygen tubing. Glad you didn't have to take him back in after all!
ReplyDeleteI'm sorry to hear that the oxygen tubing isn't working well at night. We use an adapter that connects to the oxygen tubing and the mask. It's a white tubing adapter 22mm size (if that helps) :)
ReplyDeleteI don't know who your medical supplier is, but I'm sure an RT can hook you up with something similar.