Thursday, January 31, 2013


They are not joking when they say plan to be there for 4-5 hours and he didn't even need and EKG or echo! A trip for us consists of more than just a diaper bag... I will say it again- I will never complain about a diaper bag ever in my life!!!

So the PAT is complete. We met with Dr. G's nurse practitioner and anesthesiologist. They felt he wasn't "acutely" sick, but can't be certain until try get the viral screen back which we will hear by 5pm on Saturday!

Wednesday, January 30, 2013

Tomorrow is PAT!!

Say extra prayers Ethan will go up for his PAT (pre-admission testing). The viral screen will be the determining factor. It will be negative... I'm sure of it!!! We will find out if surgery is a go by Saturday at the latest :) Prayers please!!! Thank you

Monday, January 28, 2013

Socks 4 Surgery contest!!!

Please click the link below and vote for "TEAM ETHAN" contest ends TONIGHT 9PM central time!/pages/Socks-4-Surgery/166232706836715?sk=info

Ethan will have a chance to win a Valentines Day onesie that says, "LOVE DOESN'T COUNT CHROMOSOMES"

Sunday, January 20, 2013

New Surgery Date

Due to scheduling conflicts Ethan's open heart surgery will be on Monday, February 4th!

We go to the cardiologist tomorrow for the sedated echocardiogram. We will also meet with the surgeons office. He will have his preadmission testing done in January 31st. So happy thoughts and lots if prayers for Ethan!!

Friday, January 18, 2013

We have a date for surgery!!

January 29th!! That is the date for Ethan's AVSD repair...

He will have pre admission testing done a couple days before. He will need to test negative on his viral screen which is rhinovirus (BLAH), influenza, RSV. If he is positive it will postpone surgery yet again.. I'm trying so hard to remain positive. I pray everyday, all day for health and healing for Ethan.

Surprisingly I had a huge sigh of relief. I'm ready for this more than anyone can imagine. I'm dreading handing my son over for the actual surgery. Once again the nurse background (a post op recovery ICU open heart nurse REALLY has its pros and cons!!) I just know he need to have this surgery more than ever right now. I see him starting to suffer. He wants to roll around on the ground and play with his toys. He uses up all his energy just to breathe! Within minutes he is breathing so fast and labored. His heart rate sky rockets. His oxygen levels start dropping. His color changes. He gets hot and sweaty. It's not good! I'm ready for Ethan to strive!

So we will still have the sedated echo on Monday with our cardiologist. Thai will give them a clear picture of exactly everything that is going on.

Ethan turned 5 months today!! We went to his pediatrician's office, Dr Dunlea. She wanted to see him before his surgery. I've been concerned because Ethan get really congested at times but its not all the time she thinks he has reflux. I certainly hope that's all it is and not catching a cold. But it's pretty much been then same since we left the hospital. He's already on Prilosec for reflux, we are going to slow his feedin down to run over an hour (he doesn't take anything by bottle except a few drink), keep him elevated as much as possible.

Keep those prayers coming!!!

Thursday, January 10, 2013

Cardio Appt

Ethan had his 1st cardio appt on 1/7/12, since getting discharged from Children's Hospital. I will never complain again about packing diaper bags!!! We had everything in tow because we had no idea what we needed. Oxygen, back up tank, pulse ox, suction, tube feeding pump and supplies, my pump, bags and bags!! LOL but it was smooth sailing because we had everything :)

Ethan is a whopping 12lbs 6oz and 24in! He has come along way!! I love that office. We don't have to wait very long and we are always taken back right away.

First we met with dietician, Kirby. Nothing but positive feedback! He is gaining really well. We even got to cut out one of the night feeds! We are just adding that feed to the rest of the bottles during the day. So a solid 5 hours of sleep is AMAZING! Then we met with our OT, Michelle. God love her, she met with us every single day when Ethan was in the hospital. He just would not eat and she was pulling tricks every which way. So since we have been home he is eating at least 4-5 times a day by mouth and 10-30ml. We will take that!

We soon saw Dr. Weller! Boy was I SO glad to see him. There is nothing more frustrating than having too many hands in the pile- that's what I felt when we were in the hospital. I felt no one wanted to own up and give us a plan, a date for surgery, what to expect now! Dr.Weller said on paper Ethan doesn't sound well at all by any means. He looks better in person! He said he wanted Ethan to have his heart repaired first rather than the intestinal surgery and gtube. He is too fragile to have anything else done. Hmmm exactly what I have been thinking and saying! He said he needs surgery ASAP. But we still have to wait for him to be cleared from the rhino which is about 6 weeks from the last positive. His was Dec 13th. So they're looking for surgery to be the end of the month. He will discuss things with the surgeon and hopefully we will hear something this week or next!! He paused for a very long time and said I just want you to know if Ethan tests positive for anything else on the viral screen..... Well we will have to discuss it at that time but it will not be good. Ethan needs to have his repair.... Ugh the pit in my stomach is back again!?!

So we keep everything the same. Lasix, enalapril, aldactone are his big heart meds. Crazy he is on so much! Plus 4 others!

We go back in the 21st for a follow up and to have a sedative echo so they can get better pictures of his heart.

I'm just so ready to have this behind us. The thought of surgery really hasn't set in: I just want him to strive with out breathing so fast, sleeping all the time, I want him to eat!!!!!! He is still doing well for every bring he is going through. He is rolling from back to his tummy :) He gets stuck with his arm under him and panics! He is starting to laugh :) smiling more at us :) playing with his toys :)

We are so blessed and God is good!

Monday, January 7, 2013


I downloaded a new app for Blogger making it a little easier to post some quick updates. Just wanted to share some pictures of Ethan, it's been awhile. The only down side. I can't talk about pictures as I update them....

The pictures at the beginning are from the beginning of this last admission to Children's and Christmas

Friday, January 4, 2013

Team Ethan is on FACEBOOK!


Click the link for Ethan's page on facebook!!

THIRTY-TWO the hospital

That is how long Ethan was at Nationwide Children's Hospital this last month. He was finally discharged on Saturday, December 29th. It wasn't easy by any means. Thankfully my nursing experience has been in my favor lately. Once he was stable for a few consecutive days we felt comfortable enough to bring him on home while we wait for the anticipated surgeries.

In the meantime, Ethan was sent home on oxygen, portable suctioning (he is unable to cough up his phlegm so he chokes, but once we suction him he clears up just fine!), continuous pulse ox (so we can watch his oxygen levels. He will drop very low if his oxygen comes off while he is sleeping. The pulse ox is a real pain, there is no way to adjust the "emergency alarm" and holy CRAP it's loud. I'm pretty sure I've almost ended up in the ER a couple times at night when that thing goes off), nebulizer (breathing treatment machine) and his tube feeding supplies. Thankfully his oxygen levels are not dropping at all like they were. We were unable to change his diaper without his oxygen levels dropping into the 50's. Ethan's baseline oxygen levels are in the mid 80's to low 90's. his breathing was so fast, at times bresthing 80+ times a minute. he was having retractions everywhere on his chest, he was using every muscle in his body to breathe. He would turn blue and purple. I hope to NEVER see him look like that again!!! He had completely stopped eating while he was sick. He could barely breathe. So to suck, swallow, and breathe was nearly impossible for him. When he started to feel better he had major coordination issues to suck and swallow. I had to retrain him to learn to eat again. FINALLY, he ate 45ml (an ounce and a half) for me. He has been eating 10ml-45ml since then. I'm just so thankful he did not develop a food aversion. I fed him every single day in the hospital. I never gave up on him. Most times he would take maybe 5ml and I was ecstatic!!

His cold seems like it is gone, but we are still having rough mornings. Since he has been sick, the 8-10am time required lots of TLC! These episodes are nothing like they were. Today has been the first day we have tried going without a breathing treatment and succeeded! 

So, after much consideration and pondering, we decided it would be in Ethan's best interest to have a gtube place (feeding tube directly to his stomach). He has had the NG tube in his nose for over 2 months and there is no indication he is going to be able to eat 90ml every 3 hours around the clock. He is allergic to adhesive and his poor little face is a mess! I absolutely hate to change or replace the NG when he pulls it out. We have to cover his hand with mittens or socks at night. I feel like this is hindering his developmental progress. So yes, I'm at a point where I WANT the gtube.

While we were at the hospital they began working him up for the gtube. They did an upper GI xray with barium. The radiologist doing the xray, says "HHHMMMMMM" I was then like, look I'm a nurse and I was to know what you see. He stopped and said your son has "Intestinal Malrotation, it's not causing any problems right now but he needs to see a general surgeon today." WWWHHHAAATTTT!!!!!???? So, I know nothing about peds trying to figure this out in my head as we walk back to the room. The surgeon actually met us as we were going into his room. Basically this is a congenital issue he was born with, developed when his intestines were formed. It's common with babies that have congenital heart defects. He explained the intestines are not where they should be, they're just laying in his abdomen, therefore they have a huge risk for twisting and cutting off blood supply, thus he would loose that part of the intestine and could be fatal if not treated promptly. BUT everything looked fine and he is in no immediate danger. Pretty scary if you ask me!

He needs to have the AVSD repaired first (more than likely) We are now looking at having the gtube and intestinal surgery done at the same time after he recovers from the heart surgery.

We will find out more information on a plan at our cardiology visit on Monday. As of right now there is not a tentative dates for surgery.... I'm thinking we should have a date for the end of the month. AS LONG AS HE DOES NOT CATCH ANOTHER VIRUS!

Just sharing a few pictures since we have been home!! So good to be home :)