Monday, May 19, 2008

a night in the ER

After a week of Coy not quite acting himself, we took him to the ER last night on the advice of our Pedi.

Last week, he became WAY more fussy than usual for him; I attributed this to switching from breast milk (I stopped pumping 8 weeks ago and we just ran out of milk) to formula and thought he had gas/reflux/constipation issues. I thought he maybe had some colic or we needed to switch his formula. Some feedings were great, some were miserable. Some he would take his 4 oz, some only 2 oz. He then had some projectile vomit and began refluxing way more than before. He's also had some diarrhea and then there's times he's straining (poor buddy). I talked to his GI doc and they said we should try a different formula, Enfamil Gentlease or Nutramagen. We tried these, and he did not want anything to do with them. (We see his GI doc tomorrow.

Last week, for the first time in the past 8 weeks, he had a sleeping brady. I figured that was strange and didn't get too excited over it, but then it happened again the next night. And, after the third consecutive night, I decided last Friday to bring him in to the Pedi. She noticed he was breathing faster than normal and decided we should get a chest xray. We had that done, looked normal, no pneumonia or fluid on his lungs. She told us to just keep a close eye on him over the weekend, if things worsened, we should bring him in to the ER. Saturday he was having a good day, seemed to be okay. However, on Sunday, he was only taking about 2 oz and that was us practically forcing him to eat. He also had another brady, and was having more apneas than usual. The apnea monitor is highly unreliable, but I did all my quality control checks and all seemed to be working. So, I usually take the alarms with a grain of salt because they are false alot, but these seemed to be accurate from what I could tell.

Last night, after his bottle, he was breathing super fast and shallow. He was also cool and clammy. I am always concerned with possible pneumonia because of aspirating (not that he gags or chokes and his feeds are thickened) but maybe he has some micro-aspiration?? I told Chris I was going to page his Pedi, but before I could even do it, she called us. She said she'd been thinking about Coy all weekend and just felt that we should bring him in and have everything checked out. She was concerned about possible fluid overload since he's gained so much weight, so quickly. Two weeks ago he was 7lb14oz, last night he was 9 lb5.5 oz.

So we brought him in. The nurses/doctors looked at me like I was crazy when I whipped out his 10 page discharge summary from his NICU stay and explained everything that was happening. They seemed a bit overwhelmed. (And of course, he's smiling, chewing on his pacifier, breathing normally, energetic, loving life while the ER docs are looking at him!) They looked at me and said "he looks good to us" like a was a bit crazy. He had another chest xray, blood culture, urine culture, and CBC done. The xray looked a "little" bit wet, so they decided to give him some Lasix. The CBC was completely normal. Of course, we wont have the culture results back until tomorrow or so. We were there for about 6 hours, and in those 6 hours, there's no telling how many germs we were all exposed to. Hopefully, we don't end up back there from something Coy contracted last night. ERs are really a catch 22.

We got home about 445am, and as soon as he's back in his bed, the apneas and bradys start again. I'm so confused and a bit frustrated. We will see his Pedi tomorrow to check on the culture results. We also see his GI doc tomorrow; I am thinking his reflux meds need to be changed. Maybe all this is stemming from his reflux??

Please pray for healing our sweet angel. Pray for him to pass this virus/bug/infection and for him to stay healthy and well!

(If anyone has any ideas of what's going on with him, feel free to comment!)


Anonymous said...

I will be praying that you find out what is going on and that things get better once again. God bless you all.

Shari Cagle

Anonymous said...

You are doing a great job. Keep a journal of his feeding...time of day, environment (dark quiet room/sunny room, TV on), what you are giving him, how much offered, how much he took, how he reacted, when/if he threw up...keep GI in the loop and find a really good feeding specialist that is willing to work closely with your GI and pulm docs-ideally already has a relationship with them (we had to go private for this). Any tiny bug will cause everything for them to go haywire. My 26weeker is 38 months and it is rough when she is sick...they take it so hard, especially with feeding (all my preemie mom friends have said this). Does his blood work show a small virus? And yes...I do feel like they know the MD scene and put their best happy face on when in front of doctors out of fear of being poked, and when they get home and feel safe their true "colors" emerged again-that's why I suggest keeping a journal. We also went from breast milk to Nutramagen...but it was through her tube at that point. Breast milk is so sweet and I feel the formulas that these preemies can often handle tastes so nasty-that is a real catch 22. She wouldn't take Nutramagen in her bottle either...hang in there...many prayers headed your way...please keep us updated.


PS keep your eyes peeled for signs of sensory issues...they should start showing up soon too. Does he take a bottle better at night in a quiet dark room?

Anonymous said...

I'm so sorry you are having all of this trouble. I second what a previous poster suggested - keep a log of feedings and symptoms. There is a good template on this forum:

Im praying for your sweet boy.

Rhondi said...

What is a brady? I've never heard of that. I'll be praying for your sweetie.

Erin said...

Oh my gosh Ree...what a lot for yall to handle! Lots of prayers coming your way from my camp!!!! Ryland reacted the same way shen I had to start suplementing her more, the Gentlease worked for us...I also added Gripe Water and switched her bottles to Dr. Browns and it seems to be working so far. This may sounds totally amature-ish but could Coy be allergic (or developing an allergy) to something in his bed that could be causing the trouble? Or is it just when he's laying down? Regardless I'm praying for yall. As soon as he's up for it we can do a little play date with the know, help them start falling in love or whatever :)

Amanda said...

I'll be praying!

Jodi said...

I'm sorry that I don't have any advice for the bradys. . .luckily we were blessed with a great reduction of those once Olivia came home. We have had a lot of issues with reflux, gas, vomiting, etc. Before her reflux made her vomit, she used to brady because of it. Anyway, I stopped pumping after Olivia was about 5-6 months(it was more than I could handle.) We had tried her on NeoSure, Isomil and our pedi suggested Alimentum. . .nothing helped. We switched Olivia to Enfamil AR (it's thickened with rice starch.) Not only does Olivia love it, but it helped keep everything down better. Most of her problems occurred at night, so after 5 pm, instead of trying to get her to take 5 oz every 3 hours, we give her 2-3 oz every 1.5hours. That along with the Prevacid has helped her immensely. We still have times where she has problems, but it seems to be better. Best of luck to you in figuring all of this out. We'll keep praying for Coy.

Ann Glowacki said...

Ann Marie,

Sorry to hear about your ER experience... how scary! I hope they can figure it out... maybe it's a combo of finding the right formula and his meds. Jaxson did fine on reglan for the first couple of months he was on it, but began acting irritable and had sleep troubles after a while. When I took him off the reglan he was a completely different baby, soooo much happier! You never know, that could be part of it. Reglan is known to cause irritability and sleep issues. I hope and pray you are able to get it figured out soon, I've been thinking about you! Good luck at your Dr. appts!

By the way, Coy looks amazing, he's cute as ever!


Vicki Willis said...

To Rhondi---brady is short for bradycardia----a slow heart beat

Ann Marie and Chris, sorry to hear about Coy's troubles. Could he be having any kind of reaction to the ROP treatment he had on Thursday? Or could he have picked up any kind of infection/virus from being around a lot of people on Mother's Day? Just some thoughts....

I continue to pray for Coy that he will have total healing and for you and Chris that you will find peace and rest.

Love, Vicki

The Silva's said...

Praying for you all, for peace and patience for you and Chris, and for complete and total healing for Coy!!
Lots of love and prayers,
The Silva's

Anonymous said...

Prayers for Coy! I know from experience how scary it is for a preemie to have a brady and you don't know what the cause is. I hope that he starts to feel better soon. He is just precious!
Prayers for Coy and your family.

abby said...

Ann Marie,

Can you get them to give you a sample of Neocate? I know I am projecting from our experience here, but the same thing (upsurge of vomiting, etc) happened when we ran out of Sharon's breast milk. Nutramigen and Gentle-ease did not work because they are still milk based. Soy is often just as bad, but might be worth a try. Neocate is wickedly expensive but it may be covered by insurance and if it works, it's a godsend (it is an amino acid based, dairy and soy free hypoallergenic formula). Definitely might be worth a try. I don't want you guys going through what we did!