Breaking Point
My wife and I are spent. We carry all of the stress, depression, frustration and anger that we can stand, but there is no quit. This is our family. Nothing means more. Emma has taken a turn for the worse on pure negligence by her nurse. Early this morning the nurse broke both her PICC and IV. They incorrectly decided to place the IV on the left side of her head and she pulled it out. Then the placed it on the right side of her head with an enormous and unnecessary amount of tape. They shaved both sides of her head, yet managed to put the tape on mostly her hair, which will make it difficult and painful to remove. The nurse once gain failed to place the new PICC in, twice, and now the doctor proposes that Emma undergo another surgery to install a Broviac. The surgery can compromise Emma's fragile immune system, leave her open to a blood infection, and permanently damage her lungs. We refused and will insist that they place the PICC correctly this time.
Emma is in enormous discomfort, yet they have moved her again to a room for babies that are MORE stable. Unbelievable. Now, a nurse only comes by once every 3 hours despite her delicate condition. The nurses clearly have no experience with gastroschisis and neglect many of the assessments that need to be made. This leaves my wife and I to shoulder the burden once again by split shifts at the hospital with Emma while the other parent stays at home with Ava. I have used all of my yearly vacation yet I have spent virtually no time with my wife. We live in a parallel universe that revolves around 20 hours a day of single parent care. I am exhausted. She is exhausted. We just want Emma home. Now, we could be set back by months if we're lucky enough that Emma remains healthy despite the nurses. She is at the hospital now. I miss my beautiful wife.
10:24 PM
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4 comments:
I know where you are and I feel for your family. Someone, early on in my experience with gastroschissis, reminded me that this is a marathon, not a sprint. But that this marathon was not on a set path, but one that is being laid as we travel it. We did not have to deal with the broviac route until arms and legs were exhausted. The broviac has stopped working now and we wait to see what is the next option. Hang in there, you are not alone in this, others have walked in your path or are still walking it,the strength will come to you for Emma. Sounds simple, but be sure to eat and get your rest, a good runner needs to be in top shape to make it to the end, the prize, Emma coming home.
Elaine
hang in there guys. i am so sorry you are going through all of this. ONCE EVERY 3 HOURS!? i have never heard of such a thing! especiallly with a strong baby that is able to pull tubes and wires. it sounds as if they have too many patients and not enough beds. i am so glad you insisted on another picc, i don't know why, but i had a bad feeling about the other line. it sounds like you need to have a chat with the director of the NICU. express your concerns and if that doesn't work i would think a transfer to another hospital would be necessary. i would definately request that the new picc be placed by a paramedic or your surgeon. i would not let another nurse stick her. i know how tired and desperate you are, but it sounds like the mistakes are being made when you're not there, which is exactly what happened with aden. gather your strength and stay with her. you'll get through this. and when it's over your family will be whole again (with one addition). it will all be worth it and you will be blessed. you are doing the right thing, no matter how bad it feels on your mairrage or even ava, it is right. right now emma is the one that needs you the most. my prayers are going up for all of you. just hang in there.
By any means, do not let them put a broviac line in if it is completley preventable. The broviac prevented us from coming home not once, twice, but three times! It caused numerous infections, including a yeast infection & the doctor kept sticking it back in. I'm not a doctor or a medical professional by any means, but if the problem continues to arise why do they keep putting the problem back in Jayden's body?
And the nurse situation! This is absolutley ridiculous!!! A nurse should be there to monitor Emma every 24 hours regardless if family is there or not. At any moment, not only gastro babies but any baby can pull out a picc line or something could happen in a matter of seconds. These people may be nurses in doctors, but both of you know that child more than they do & don't settle for what they have to say. You always always have first say in what goes on.
Continue to be strong and don't give up! This challenge will soon be over and the moment that your whole family is united all this will be worth the prize! You are a team and every player needs to continue to be strong even in times like this when it makes it so hard. Go team Emma!
I can absolutely sympathize. Our Elizabeth was born Thursday, and although they were able to do a primary closure, they have attempted four PICC lines and countless IVs that all fail and two head shaves. It seems the IV placement has been our biggest challenge. She is now jaundiced and blindfolded under phototherapy lights, with no medication, no swaddling, so her arms are flailing everywhere and she is completely distressed.
They have told us since day one to not plan to go home earlier than three months. We are in complete denial over this. My husband and I DO NOT sleep, and spend at least 30 dollars a day in gas getting to and from the hospital.
You are NOT alone. Be Emma's advocate and demand another opinion if you are uncomfortable. Follow your instincts. Not all health care professionals are created equal!
Take care. This will one day be a distant memory!
Heather
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