M
Mommy2Zeke
Guest
So my son Zeke has been in the hospital for 5 days now. He started projectile vomiting last Sunday night at 2 a.m. I called his clinic at 10 a.m. Sunday to get the on-call physician's ideas on whether we should go to the ER or not. Never got a call back on Sunday. First thing Monday morning I called the clinic again and told them to work me in.
He was seen by the nurse practitioner who thought Zeke might have rotavirus. Zeke's physician was out of the country so she couldn't call him for advice, so she called the on-call physician who told her to send us to this hospital. Turns out it's the wrong hospital. Clinic basically spends 2 days telling me that Zeke's regular CF doc will come see him as soon as he's back in town. On the second day of waiting- they finally tell me that I'm in the wrong hospital and it's likely I will have to request a transfer unless I can ask for a consult (after 5 phone calls to the office and one melt-down over the phone to the office person). In the mean time- Zeke has seen a surgeon who sees something wrong on the Upper GI study. He thinks Zeke is ok for the moment but wants to do surgery next week. Zeke ended up being NPO for two days.
I finally get consent for a consult from the hospital, and Zeke's CF doc makes it over to see him. We go up on feeds since Zeke is tolerating a small amount. Then by the second day of feeding again, he starts going down hill. (Yesterday) He wouldn't take even an ounce at a time. Somehow the nurse on duty tells Zeke's CF doc that he managed to get down a 3 oz. bottle in one feeding WTH?!?!? So Zeke's CF doc thinks he's doing better.
The surgeon comes in 5 hours later... and Zeke has significantly deteriorated from even taking an ounce. He's pale, refusing his pacifier, can barely cry, and is throwing up bile again. Surgeon says 'we need to do surgery NOW'.
Meanwhile, the nurse continues to misinform Zeke's CF doc, so he's reluctant to do surgery. I finally get the message to him that she is telling him wrong. And I have not one, but two of the best pediatric surgeons in the state to back me up.
Zeke went into surgery yesterday and it was discovered that in addition to having a malrotation of the bowel, he had numerous adhesions that formed as a result of his ileus surgery at 3 days old. The adhesions had twisted a portion of Zeke's bowel to the point it was only intermittently letting things pass.
He's now in PICU- still in the 'wrong' hospital. But he is getting good care now at least. We had major pain management issues last night thanks to a very low dose of Nubain that wasn't doing anything for him...he cried half the night and barely slept. He's miserable because he has a repogle down his throat into his tummy and he's already tried to yank it out, but they finally upped his Nubain dosage enough that he's sleeping- so at least he's less aware of it. He will be NPO for several more days and will probably be here in PICU for a couple more days.
I NEVER want to go through this again. I hope you all haven't had experiences like this, but if you have- please help me learn how to handle this. I feel like I've been a Momzilla all week, but what else am I supposed to do?
*Update 5/13/09*
We are out of PICU. We transferred to the post-surgery peds floor after he had his central line put in yesterday. Zeke is doing much better here...but not without a few bumps in the road. We had moved back to the level we were on before surgery for a couple of days and the mistakes continued to the point I stepped up and requested a transfer to post-surgery peds. We were waiting 45 minutes after a call for pain meds, his ng tube wasn't being irrigated, they lost his blood bracelet, and one of his nurses had to have another nurse show her how to clear his NG tube. That was the final straw. I do not want my kid being someone else's guinea pig.
The post surgery level seems incredibly better. They are prompt, professional, and very vigilant about monitoring him. And they listen to me when I tell them his tube needs to be irrigated. The doctors are happier with the care level too. And Zeke seems to be much more comfortable now that meds are being administered on time. The docs say he has begun to round the corner. We're still probably a week away from starting feedings, but I feel much better with where things are heading. Although things always seem a little sunnier once you're actually getting sleep and not needing to soothe a baby who needs more pain meds! Thanks for all your thoughts and prayers. We definitely appreciate them.
He was seen by the nurse practitioner who thought Zeke might have rotavirus. Zeke's physician was out of the country so she couldn't call him for advice, so she called the on-call physician who told her to send us to this hospital. Turns out it's the wrong hospital. Clinic basically spends 2 days telling me that Zeke's regular CF doc will come see him as soon as he's back in town. On the second day of waiting- they finally tell me that I'm in the wrong hospital and it's likely I will have to request a transfer unless I can ask for a consult (after 5 phone calls to the office and one melt-down over the phone to the office person). In the mean time- Zeke has seen a surgeon who sees something wrong on the Upper GI study. He thinks Zeke is ok for the moment but wants to do surgery next week. Zeke ended up being NPO for two days.
I finally get consent for a consult from the hospital, and Zeke's CF doc makes it over to see him. We go up on feeds since Zeke is tolerating a small amount. Then by the second day of feeding again, he starts going down hill. (Yesterday) He wouldn't take even an ounce at a time. Somehow the nurse on duty tells Zeke's CF doc that he managed to get down a 3 oz. bottle in one feeding WTH?!?!? So Zeke's CF doc thinks he's doing better.
The surgeon comes in 5 hours later... and Zeke has significantly deteriorated from even taking an ounce. He's pale, refusing his pacifier, can barely cry, and is throwing up bile again. Surgeon says 'we need to do surgery NOW'.
Meanwhile, the nurse continues to misinform Zeke's CF doc, so he's reluctant to do surgery. I finally get the message to him that she is telling him wrong. And I have not one, but two of the best pediatric surgeons in the state to back me up.
Zeke went into surgery yesterday and it was discovered that in addition to having a malrotation of the bowel, he had numerous adhesions that formed as a result of his ileus surgery at 3 days old. The adhesions had twisted a portion of Zeke's bowel to the point it was only intermittently letting things pass.
He's now in PICU- still in the 'wrong' hospital. But he is getting good care now at least. We had major pain management issues last night thanks to a very low dose of Nubain that wasn't doing anything for him...he cried half the night and barely slept. He's miserable because he has a repogle down his throat into his tummy and he's already tried to yank it out, but they finally upped his Nubain dosage enough that he's sleeping- so at least he's less aware of it. He will be NPO for several more days and will probably be here in PICU for a couple more days.
I NEVER want to go through this again. I hope you all haven't had experiences like this, but if you have- please help me learn how to handle this. I feel like I've been a Momzilla all week, but what else am I supposed to do?
*Update 5/13/09*
We are out of PICU. We transferred to the post-surgery peds floor after he had his central line put in yesterday. Zeke is doing much better here...but not without a few bumps in the road. We had moved back to the level we were on before surgery for a couple of days and the mistakes continued to the point I stepped up and requested a transfer to post-surgery peds. We were waiting 45 minutes after a call for pain meds, his ng tube wasn't being irrigated, they lost his blood bracelet, and one of his nurses had to have another nurse show her how to clear his NG tube. That was the final straw. I do not want my kid being someone else's guinea pig.
The post surgery level seems incredibly better. They are prompt, professional, and very vigilant about monitoring him. And they listen to me when I tell them his tube needs to be irrigated. The doctors are happier with the care level too. And Zeke seems to be much more comfortable now that meds are being administered on time. The docs say he has begun to round the corner. We're still probably a week away from starting feedings, but I feel much better with where things are heading. Although things always seem a little sunnier once you're actually getting sleep and not needing to soothe a baby who needs more pain meds! Thanks for all your thoughts and prayers. We definitely appreciate them.