Thursday, November 29, 2012

Benefit for Team Ethan!!

A wonderful friend and co-worker, Dalene Campbell asked us if she could have a Spaghetti Dinner Benefit for Ethan. I never imagined in a million years we would be in this situation, but with everything that is going on with Ethan I cannot work right now. Here is the information from Dalene. Her number is 740-808-0348, email

Spaghetti Benefit for Ethan
When: Friday December 7th
Time: 5:30pm-8:00pm
Where: Victory Hill Church
4000 Coonpath Rd.
Carroll, Ohio 43112

Spaghetti dinner $5 per person. There will be a Chinese Auction as well- right now they have 2 16" kids bikes, one boy and one girl bike, gift card tree with $150 worth of gift cards!!! All donations appreciated. Please get in touch with me ASAP for volunteering or donations. If you have any questions please contact Dalene.

Thank you,
Dalene Campbell

I know Dalene has gotten a few stores to donate some things for the dinner. If you or if you know anyone that could donate or volunteer for this event we would appreciate it!!!

God, Please give me strength!

I've finally have a moment to send an update. I started this on the day Ethan was admitted back to Children's on Tuesday. What's crazy is that Ethan never showed signs of the rhinovirus last admission 3 weeks ago even though he was positive for it. He never had a cough or congestion. We followed up with our cardiologist 10 days after we were discharged and he was starting to have some nasal congestion but his oxygen levels we fine and lungs were clear....

(from Tuesday) Over the last week he developed a cough and some congestion. Sunday was terrible. I even questioned his color, but his color is always not so great :( over the course of the last 24 hours, he was coughing up so much phlegm that is seemed like he was drowning himself in it. He was choking on his own secretions. Once again I was packed and ready to take him at 3am. Of course he cleared up and fell asleep. So I called our pediatrician first thing and got him right in. I wasn't crazy, his oxygen level was 72%. Ethan is normally in the mid 80's, mostly 90-92%. He was pink and not in any respiratory distress, some faint wheezes. They rechecked it on both hands and feet, still 72-76%.  So he thought it would be best to have the children's ER dr take a look.

So we drove on up. As I tote him down the hallway bags and all, he starts grunting and making these terrible noises (no nurse, let alone a mother wants to hear!!) The waiting room is slammed, seriously 40 or more people. I'm thinking to myself, you better bet I'm telling them we cannot possibly sit out here and wait. I tell them who we are, a nurse comes around the corner, takes one look at him, scoops him up and says "come with me, he needs to go back now". The rest is pretty much a blur. His oxygen levels were in the 40's by this point, the room was filled with everyone doing their best to help Ethan. I seriously thought he was going to code right there before my eyes. They were giving him breathing treatments and suctioning tons of secretions out of his lungs. What seemed like an eternity, lasted about 10 minutes. I was numb... How on earth did I not see how sick my baby was? He actually pulled through only requiring a few breathing treatments and some oxygen. His chest X-ray showed a few different things, he has possible pneumonia and /or increased pulmonary vascularities (blood backing up from his heart since it can't pump the blood out as well). His symptoms maybe be from the virus or he might have another virus going on. We will know more about that tomorrow...

I'm the meantime, we are back on the cardiac step down unit on the 4th floor. Due to flu/viral season. There are no visitors. His oxygen levels do keep dropping and he's pretty congested. The breathing treatments and suctioning help but it's a temporary fix for an hour or two. It's going to be a long night. They have already said they might need to transfer him over to the cardiac ICU. So we wait and see...

(Fast forward to today...)
He had another episode today with his oxygen levels dropping, congested, wheezing. Only this time his oxygen levels did not go up with a breathing treatment or suctioning, he stayed a dusky ugly color. The nurse and residents decided they needed the ICU team to come look at him since he was working so hard to breathe. Times like this I am very thankful I have the experience I do. It can be quite scary, maybe I'm in a little state of shock. There was about 25 people, including extra nurses, drs, ect. They decide on a quick plan for the best possible outcome to avoid going to the ICU. So they started him on oxygen, increased breathing treatments, started steroids. He is doing ok at the moment. They are hoping this is the peak of everything and won't get any worse. Not sure how long this will last... hopefully not long. He is getting excellent care, I don't even have to blink and someone is always right here checking in on him.

Will certainly send updates! Thank you all for your love and support through this...

Tuesday, November 13, 2012

Fundraiser for Ethan- Win a Family Photo Session!!

A very good friend of mine, Angela Young has offered to set up a fundraiser for Ethan. I have known Angela for 12 years, we met at Berger Hospital working in the ER. I was just a senior in high school. We have took different paths in our nursing career, but have always stayed in touch. She has been doing our family photography pictures since I was pregnant with Eli.

She wanted to do something to help our family out, but help another family as well!!! Here is a link to her blog where you can enter a chance to win a FREE photo session for your family. She will be raffling TWO FAMILY SESSIONS!!! Everything will be done ONLINE through her blog :) One entry is $5, enter as many as you would like. The drawing will be held on December 9th at noon.

Please share the link with your family and friends and keep the link going :)

I just want to thank you Angela for setting this up for us. We are so blessed to have you in our life!


Sunday, November 11, 2012

We are HOME!!

Well, we have BEEN home ;)

WOW, it's been awhile since my last post. Ethan got discharged home on Tuesday from Children's. He was sent home with the NG tube (nasogastric tube aka feeding tube). We are feeding him a bottle and what he doesn't take by mouth we give the rest down his NG tube. He eats better in the evening, sometimes will finish an entire bottle. We have to feed him every 3 hours around the clock. So if he is sleeping then he gets woke up, except at night... If he is sleeping, leave the sleeping baby SLEEP!! I just tube feed him then. Most of this is due to he gets so tired from eating and burns up all these calories- hence the minimal weight gain prior to this admission. As of Thursday he was up 1lb 4oz!! Weighing in at 9lbs 10oz!! We see the cardiologist on Friday. Anxious to see if he is 10lbs by then. He most certainly should be!! Everyone is adjusting well. We are finally getting back into a routine. Eli is doing very well and I don't know how I got so lucky to have him as such a big helper. He has certainly grown up on me. So the plan for surgery is a waiting game, it can go one of two ways... He has to be retested for the viral screen (RSV, influenza- flu, parainfluenza- croup, rhinovirus- common cold ** rhino is what he tested positive for this past admission** these are just to name a few) he has to test negative UNLESS his cardiologist doesn't think he can wait anymore like his respiratory status gets worse, starts losing weight again, ect. The reason to wait if he tests positive for any of these tests is to decrease major complications after his surgery like extended ventilator time (breathing tube/machine), pneumonia or other respiratory infections. YUCK!! And of course we are approaching WINTER, FLU, COLDS UUUGGGGGHHHHHHHHHHH.

Ethan is feeling much better. I wish I could get his HUGE smile for you to see. It's perfect. He melts my heart!!! Of course he stops as soon as I take a picture, it's like a game. He wants to laugh so hard because I tell him he is doing it on purpose!! I also have this absolutely amazing video of Ethan making noises, but it's after I do so it's even cooler like we are having our own little conversation. Don't laugh I sound ridiculous, but it's a home video ;)

Oh darn it!! I can't get it to upload. Well here is a picture from today. Poor guy still doesn't feel the greatest...


Friday, November 2, 2012

Update from Children's

Ethan was admitted to  Children's Hospital on Tuesday evening after he wasn't eating, extremely tired, difficult to arouse, and rapid breathing.

We were at the cardiologists office on Monday and he had a 4oz weight loss in 9 days. They started having us add a different type of formula to the breast milk and would followup in a couple days. Well I just did not feel comfortable with how he was doing on Tuesday so I made the cal to his cardiologist and they admitted him to Children's.

Everyone in our house has been sick with this nasty cold. I thought Ethan and I were out of the clear, then it hit me like a ton of bricks nearly a week ago. They did a viral screen and it came back positive for the rhinovirus aka "common cold". They're saying Ethan has suffered a hit from both sides, his heart is getting so weak that he needs surgery soon and the cold has unfortunately set us back for the surgery. It's everything we have tried to do to prevent him from getting sick, staying housebound and limiting visitors... I'm just thankful he did not test positive for RSV, that would definitely postpone surgery for 6 weeks. They were supposed to present his case to the surgical teams today, but since he is sick this is on hold...

They have made multiple adjustments to his medications for his heart. He is now on lasix 4 times a days (to decrease fluid around his heart and lungs), digoxin still twice a day (decrease  workload on the heart), added enalapril twice a day (decrease workload on the heart, and zantac twice a day (to prevent reflux).

He does have a temporary feeding tube into his nose. We offer him a bottle and what he doesn't take we give the rest down his tube. He has been eating more, has finished a couple bottles. He still is so fatigued and that is related to his heart and I'm sure from not feeling well. They are planning of having Matt and I do the feedings, put down the tube, and care of feeding tube this weekend so hopefully we can take  him home early next week.

I'm so excited Eli is coming up this evening. I cannot wait to see him!!!!! I have been staying at the Ronald McDonald house across the street, so they will get to stay with me this weekend. Also I am asking if you can collect the "pop tabs" off the cans, the Ronald McDonald house takes these for donations. The money is used to pay for electric, gas, water, food, ect. Please contact me if you're interested!!!

He seems to be tolerating all of this. He is doing nearly 100% better in my eyes since we were admitted. He sleeps a lot of the morning and afternoon, but he sure get a party going on in here in the evenings. The nurse was telling me last night they had to draw who got Ethan because they all wanted him. Makes me feel so good that when I'm not here he is loved and well taken care of.

Thank you all so much for your continued support, thoughts, and prayers! We love you all :)