You'll see my words emphasized throughout my note. I am trying to help you feel the feelings & emotions I felt as all this was happening. Oh, and that voice in my head that tries to keep me from going postal on people was there with me the whole time. lol funny. He calls me "gal" sometimes. lol Here are some things that has happened to us in the last 2 days because of unconcerned and untrained people.1. Made a detailed list of Matthew's meds, times, .. a first grader could read and copy it.
First meds came, no depakote.. had it down for 2 times a day instead of 3. Had to wait for doctors orders an hour when I had it right there in in suitcase. (no problem, it will get better)
2. brought me 1/2 of a drooling pill at 12 noon. He doesn't get anything at 12, he get the drooling pill with 4 other meds at 2:00. Just breath charlotte2. They gave me a crushed up pill at 5:30, said it was 10 mg of the baclofen. It was 20 mg of baclofen. He is only suppose to get 10. Breath in, breath out, let it go. From that point on i told them no crushing until I saw it first.
4. I walked what seemed like a 1/4 mile round trip to the OBGYN waiting area to pay for a parking pass. They were closed for an hour because computer was down or something... it's ok, just be cool.
5. I walked back to the business office 2 hours later, they were open but didn't take the money or order for the guest trays anymore any more, I had to go to the cafeteria in the hospital part??? In the total opposite direction.
6. I walked to the cafeteria and paid for 5 guest trays for my stay, almost 35.00 bucks.
7. I didn't get the first meal until the NEXT evening.. the nurse called about twice. Finally, I called the complaint number and had two trays in my lap that evening.Eat both of them trays of food Gal, you need your strength. So I did!
8. I am JUST getting started.
9. Was told we could go home at 9:00 after we see the surgeon.
10. Surgeon says ok we have surgery.. blah.. now I have to wait on his nurse to come talk to us
11. An hour later she comes by gives me the appointment and says I have to wait on this other lady to come by. 2 hours later she come by tells me to go to anesthesia for pre-op work up before we go home. We're almost home now?.. well are we? Forgot, and do not have time to re-number this junk.. but we had to go to registration and register AGAIN for the surgery on Tuesday.. then they send us to anesthesiology.
12. We get discharged, the nurse takes out Matthew's IV and we go to anesthesia 6th floor children's hospital.
13. Anesthesia stops us in our tracks and said, Oh you have to take him to get lab work, in the other side of the hospital in the new children's clinic on 2nd floor. Throw some water on your face charlotte.. be nice, it's you, it's not them..
14 We get their they look like at us like we are crazy and not sure why they sent us to them. ok, roll your eyes charlotte, give them a dirty look then breath..
15. After they call to find out why we are there (after not listening to me) we wait another hour, they bring us in. snatch up your purse look em straight in the eyes, then breath..
16 REMEMBER THEY TOOK THE BLASTED IV OUT WHEN WE LEFT THE ROOM. Matthew has very thin viens. By this time he is wet, time for meds and to be fed. So I complained about having to re stick him and they are sorry & don't know why the surgeon didn't request the draw before we left the room... breath gal, breath!.. you know it's you,, its YOU.. not them! I only gave them 1 chance to find a vein and of course they blew the vein. Then they said they knew a girl that could get it that worked in ER so I fed and medicated matthew while we waited on her.AS soon as she walks in the door, matthew PROJECTILE VOMITS everything I just gave him. He is covered and me too. So back out of the chair on the table.. we both smell horrible..breath in, breath out, don't cry, clean up your baby. Get him cleaned up back in the chair, she finds a vein in his foot gets it first time. That's not your back you heard cracking.. it's just your imagination.. breath..
17. Now we are going back across the hospital to the 6th floor to anesthesiology.. have to go in a room that is so small, Matthew & his chair, me and the nurse couldn't all get in at one time.. lol.. That took about 30 minutes. Laugh charlotte, just laugh ,you are almost to home plate.
18. We make it home around 4pm rejoice charlotte! I just went to walmart, bought a straight talk phone. the cashier scanned it twice, voided, and I had to wait for the CSM to void. Got home to activate and she not only voided the charge but also the serial number so the phone has to be taken back. Go to bed gal, just GO TO BED!
WHAT THE HECK IS THIS ???STOMP ON CHARLOTTE AND MATTHEW DAY.. THIS IS JUST RIDICULOUS. OUR LIFE IS HARD ENOUGH WITHOUT ALL THIS EXTRA CRAP. LORD JUST GIVE ME STRENGTH. I REALLY FEEL i need to invest in some good boxing gloves and a punching bag.. I feel like the whole world has turned on me and MATTHEW I honestly don't know why. I AM GOING TO BED.
Who speaks for the kids in the hospital that have not advocates and YES there are many kids up there with NO ONE.
I wonder how many people have died because of stupid carelessness like I saw?
I am going to write a letter, similair to this one to the director of nursing. I will also be demanding that I either give the meds myself or that they bring it to me before crushing or mixing and let me ok it. When I become a nurse I will always check with the parents or caretakers first. I don't want to kill no one so no one should cop an attitude whenever I ask to see the meds first.
4 comments:
I print out his list of meds with the medications, mg's and the times he gets them at home. On the side we have check of boxes that gets signed this is all for my records. Every pill is brought to me uncrushed and still in the pharmacy wrappers. I will crush them and add only water to them in fromt of the nurses and then give them myself. I am very anal over his meds because Finnian is on the keto diet. I check every IV bag and question everything that is run through the IV. They are always glad to see us go home well I should say me the parnoid Mother.
Glad to see that the Baclofen is giving him comfort. Finny just got one hip done we go back in 6 mths to get the other one done.
does he have the pump? Matthew's already had tendon release AND bilateral hip surgery in 2005. He started having trouble a Year later with his right leg. They said he was NOT a candidate for the pump without even testing.. if he could have got a pump, I honestly believe his legs would still be in the sockets.
Finnys left hip has not been in the socket for about 2.5 years. He started not to want to bear weight on it. Can't blame him. He will have to go back to get the other one done evntually. Finnian is low tone in his trunk and hip region. He just has tightness in his arms and one of his ankles.
If Matthew didn't have such extreme high tone in his legs, it wouldn't bother him so much. The tone is causing him to keep it pulled up and when he is moved or his diaper is changed, the heads of the femurs rub the hip sockets and it has become very painful. I hear that kids do ok with their legs out of socket for a along time but I guess that's the ones with low tone. Just our luck. lol
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