My beautiful little lady was discharged from the hospital on Tuesday night. It was a very long six days that I never want to have to repeat. I kept thinking the entire time that they were letting us go home how excited I was to leave and get back home…and at the same time, how scared I was that I wasn’t going to have a nurse’s call button to call them if she pulled out the tube or if I couldn’t get the tape on right or if I couldn’t hear the sound of her tummy before I fed her or if the tube was clogged from all of the medication.
I mean really…NO CALL BUTTON??? The thought was terrifying. But now we have been home for 2 whole nights and 2 whole days and to tell you the truth, it is fine.
Yes, I am feeding her every 2 & ½ hours, 7 times a day and each feeding takes 45 minutes. Yes, I am actually feeding her about 6 hours total out of every day. Yes, I am having to get up at 4:30 in the morning so that I can get a shower and get ready to start the day before her first feeding. Yes, I am having to feed her while she sleeps at 9:00 at night. Yes, she is still vomiting a little. Yes, she is crying because I won’t let her eat any of her favorite snacks. Yes, dinner time is excruciating…so much so that my fifteen year old is refusing to eat at the table if Hailey can’t eat. Yes, I am having to wipe her drool every 32 seconds and apply Vaseline and even change her diapers again.
Yes, it is horrible for her and for me and for our family…Mostly for her though.
But also, I am learning that I can do it. I have still handled all of the laundry including all of the extra laundry from vomiting and accidents and drooling. I have still gotten all of the bills paid and still drove my four year old to pre school. I am learning that my hubby is really helpful if I give him tasks…So he has picked up all of the prescriptions and picked up the preschooler and he is handling cooking dinner for a while. But for the most part, it is fine. It isn’t ideal but I can handle this…We can handle this.
I would like to think that there is a light at the end of the tunnel. And I am trying to keep hope that there is going to be an end to this and that she will regain the ability to swallow and eat. But honestly, I think that I need to just come to terms with this. I can’t keep saying in my head, this is only for 30 days or this is only for a few months or this will all be over in 6 months at most…because that is not for sure. I think that I just need to think, this is how things are…so that I can accept the situation and we can deal with it and make it part of our lives. It’s just like telling her that she can eat when she is better…One of the nurses told her that…But in reality, she feels fine now…besides the swallowing. I don’t want her to get the idea that now that she feels better, she can now eat. That will just frustrate her more.
So I am trying to think positive while accepting the negative. It is a tricky thing to do…and not one that I am very good at.
You are all in my thoughts and prayers! I don't think I have heard of this type of thing happening, just up and losing the swallowing skills, when she has done so well for so long. I can't help believing that this has got to be a temporary setback, and that life will return to "normal" at some point. Takes time to heal and get strong again. So, so sorry that it is hard right now. One day at a time... (((hugs)))
ReplyDeleteYou amaze me. Hang in there...you are one of the strongest people I know. Even when you don't feel like it, you keep your chin up and go on. You're my hero!
ReplyDeleteMuch love and many prayers...
Thank you Kate and Beth. This is just such a hard time for us right now. I really hope that things will get better for her. It is so horrible to see her in so much distress.
ReplyDeleteI am so sorry for you all that this has happened. Like Kate, I really hope and pray this is something temporary. For you, for Hailey. You are doing such an amazing job, just know that.
ReplyDeleteJust checking in again, wondering how things are going. How are you? Maintaining that feeding schedule has got to be more than exhausting, and I am hoping that the vomiting has ended.
ReplyDeleteHave the doctors any idea what triggered this terrible episode? I am concerned that it was the behavioral medication change. I think they have to be careful in weaning off the old and weaning onto the new, and I hope they were. And then, too, sometimes the child with cdc doesn't react as expected.
I think, too, that the fact that they didn't surgically place a g-tube (direct to the stomach) is a sign that they don't expect this to be a long-term problem. Of course they can't tell you just how long it will last! A lot of times, you are discharged from the hospital just so they can see how you do - time will tell. But it is SO HARD to be the mom.
Several years ago, Janine had unrelenting GI problems, and it turned out to be a milk protein (whey) that was perpetuating the vomiting and diarrhea. We had gone thru test after test and months of losing weight and getting weaker before they figured it out. Turns out a digestive enzyme needed to handle the protein had been flushed out with the initial illness, and then the body never had the time to build it back up because the "flushing out" never stopped until we got the whey completely out of her diet. After about a month she was able to handle it again. This may or may not have anything to do with Hailey's troubles, but I thought I should throw it out there.
Do you mind sharing what the medications you have used are? If it is too much right now, don't worry. Just take gentle care of yourself.
Kate, I so missed this comment so long ago. I was just reviewing everything that I had written during the last 6 months and came across it. I am so sorry that I never answered. How is Janine doing? Do you have my email? I'd love to hear from you.
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