Prayers needed

[peggyfromwastate]

Thanks for everyone's input.

The docs put the little guy on a nasal spray (I keep thinking nasonex, but that is not the right name) because they were thinking that it wasn't a membrane after all, but excessive swelling. Apparently, he was suctioned pretty vigorously because he had passed meconium before birth.

Yesterday he was taking a bottle well and his sats were staying up! They will be doing an EKG and something else to rule out an aortic fling (essentially the aorta passing too close to the trachea and constricting it).

If he hadn't been showing such strong signs of improvement, I would have pushed much harder to have him moved to Minneapolis.

Reading the update... And... I'd still want to get him checked out by a fellowship trained ped. ENT... I just would feel better about it...

[MarissaNicole]

My prayers are with you and all of them. Keep us posted!

[HouseofWool]

I just heard from my mom that Tate had a seizure today. I don't have any more information. I don't know if it was during a test or not.

My mom is a former ICU nurse and I told her how I had spent my weekend researching the regions hospitals and although they are affiliated with Mayo, Mayo doesn't focus on neonates. I tried hard to emphasis how important it would be to get a consult with someone from a children's hospital, either Milwaukee (4 hrs away) or the Twin Cities (2.5 hrs).

My BIL is about the most stubborn creature on earth and doesn't take suggestions well. Since he works at the hospital where little Tate is, I also get the feeling that he would not question what the docs there tell him.

I spoke with DH and he will try talking to BIL/my sister this afternoon about getting a consult with the children's hospital in the cites (at a minimum). I am hoping the common medical background will help and if it pisses of BIL, then he is mad at DH, not me.

I am worried sick and my heart just breaks for my sister's (and everyone else's) pain.

[JaneDoe]

Oh . . . I'm sorry. I am thinking of your nephew and your family.

[DCJenn]

Oh man, that's not what you want to hear, is it?

I know that in relation to the seizures, often smaller hospitals don't have a child neurologist on board (they're a rare breed, apparently) and will defer to the pediatricians to dose the seizure meds. I think given Tate's increasingly complex medical needs, someone is going to have to insist that he be sent to the closest children's hospital where complex kids are routine.

I'm sorry that you all are having to deal with this; what should be such a joyous occasion.

Jenn

[Deebs]

Kris,
While trying to educate your family, it also might help to understand where the Mayo Medical System affiliates came from. They were basically hospitals who were either struggling or would struggle under Bill Clinton's proposed healthcare plan. At the time, it was thought that if his plan went through, people would only be able to get care from hospitals that were part of a network, so smaller hospitals dove to affiliate with larger institutions, such as Mayo. While the docs there are affiliated with Mayo, they are hired by a separate method and are governed largely by the smaller hospital itself. That being said, it is often easier to get a patient transferred from a MHS facility to Mayo than another outside hospital. It is still considered a transfer, as they really are a separate hospital (sorry if this is too much info - this is my healthcare administration hat and former Mayo employee side coming out).

Mayo Clinic itself does have about a 30 bed NICU on the Saint Mary's campus, including peds neurology and peds ent (they're still ranked #1 nationally in neurosurg and neurology and have to have a full complement of neurologists to be so). We have several friends who had children in the NICU there with excellent outcomes. While it's not a seperate Children's hospital, and it wouldn't be my first choice for all peds problems, a mysterious sounding problem where signs and symptoms seem to be changing daily is where I would push to go to Mayo. They will have the full complement of physicians that a neonate would need. I think Children's in the cities would be a great choice, too, but it sounds like it just might not happen.

You are all definitely in our thoughts and prayers. What a scary scenario to have to deal with.

[HouseofWool]

Deb - Thanks for the info on Mayo. I looked all over their website this weekend and didn't see what I was looking for. Mayo would be in-network and is only 45 minutes for them, so I imagine it would be their first choice.

[Bittersweet]

No insight but I wanted to let you know that my thoughts and prayers are with your family.

[Ladybug]

Hugs and prayers.

[HouseofWool]

What a roller coaster...

An EEG was done yesterday and it showed normal activity with no signs of irritibility. (DH had just one a peds neuro rotation and said that EEG's are good for ruling in a seizure, but I don't really understand what he means by this.)

My mom (a former ICU nurse) said she saw one of the episodes and it looks like a startle reflex that just keeps repeating for a couple of minutes. There are no facial tics or contortion and if you touch one of his arms, he stops moving that one. So now they are thinking that it may be that his neuological systems are immature for gestational age even though he was full term.

Jenn - can Rick offer any insight into this?

[DCJenn]

I'm sure he can! The eegs will show seizure activity even when the person doesn't look like they are having a seizure- that's what your husband means by ruling IN a seizure.

I'll ask him this evening.

Jenn

[HouseofWool]

Thanks Jenn - I figured that's what he meant by ruling in, but if it all shows normal, wouldn't that rule one out as well?

[PrincessFiona]

Wow, how stressful for the whole family! I hope they get it all figured out ASAP!

Kris

[DCJenn]

No- because it's just a snapshot- if the person isn't having a seizure or some kind of abnormal brain activity, it won't show up. Then they do other tests to look at the brain.

Jenn

[peggyfromwastate]

Just wanted to add that I did ask DH about it and he said that if the flap is still an issue, he saw a couple while doing his children's rotation and they did surgeries on the infants.

He also agreed with me about going to a children's hospital or a place with pediatric specialists, at least. A regular ENT should be able to scope the baby and check if there is a flap too. This should have been done already if it's still a concern (as the original issue.) He's also never heard of aspirating being so aggressive to affext the pharynx...