Elliott Arcile Reed

Elliott Arcile Reed
6 lbs 8 oz 19 3/4 inches

Friday, September 5, 2008

Day 17

Elli had a pretty stable night last night, she seemed to really like the Dopamine and was even awake for about 30 minutes last night around 3 am. We stayed until almost 4, too nervous to leave, but our tiredness got the best of us. When we got here around noon, Elli was up to her old habits, having bouts of fussiness and saturations in the mid 70's. We have yet another new doctor today, Dr. M. She ordered another ECHO of Elli's heart, and basically it shows that her pulmonary hypertension is still very high. The doctors are trying all they can to help Elli be comfortable to decrease the resistance on the blood flow. Because the anatomy of her lungs is so different because of the growing conditions, her lungs are very muscular and sensitive. They essentially "spasm" every time that Elli is touched, in pain, or gets upset. They did change her PRN pain medicine from Morphine to Fentanyl, it is in the same family of drugs as Morphine but works quicker. The down side is that Elli will build up a tolerance to it quicker than she will on the Morphine, but as for now, the doctors are more concerned with keeping her as comfortable and pain free as possible. Our new doc, Dr. M did some brainstorming with some of the other Neonatologists on other teams here at CMH and they decided that they would try one more drug to try and relax the right side of her heart to decrease the pulmonary pressures. It is the equivalent of Viagra and has to be taken orally. So the nurse gave it through her OG (oral-gastric) tube and is leaving it clamped off for an hour. Also they decided to change her chest tube from bulb suction to a water seal chamber to see if she had an air leak because it stopped draining in the night. So far no leak, but very little output, so it might have a clot somewhere, they are unsure. They doctors have left the vent settings alone, thinking that it has more to do with lung/heart compliance and turning up the vent settings to try to oxygenate will only further agitate the already sensitive lung tissue. So of course we wait and hope that the fine tuning med changes will help decrease the pressures. This is so common in babies with CDH and we knew that Elli was likely to face this sort of problem. Basically we give the meds and her time to work things out, after all she is only 2 days post surgery. So of course more ups and downs, just tyring to rid this thing out. Keeping quiet, and our hands off. Brian, Cassi, and Elli

12 comments:

cbgricci said...

I'm sure it is hard to keep your hands off. She is just so precious! Thanks for updating us. Grace prays every night for Elli. She likes to say, "Elli, get better. Amen!" We will continue to keep you in our thoughts and prayers.

Love,
Colin, Brandi & Grace Ricci

C & A V. said...

Since you have to keep your hands off, this would be the perfect time to teach Elli how to blow kisses. We will keep praying for our little fighter and her mommy and daddy!

Aunt Annie

Fat People Eat Healthy Too! said...

Hang in there...I know exactly what you are going through...just be strong for your precious girl. There are so many ups and downs...but you will all get through it.

Stacey Musgrove
mom to angel Ethan LCDH
carepages.com/sickkids BabyMarchand

Mary T said...

Hi Cassi, Brian & Miss Elli~we've been gone for a week with no access to a computer. Miss Elli has been on my mind constantly, either praying for her (all of you)or wondering how she is doing. My heart goes out to you for the emotional roller coaster you are on and for having to keep hands off your precious little Miss Elli. She's such a little fighter, I like the sassiness in her, she's letting everyone know she wants everything to be "HER WAY" and that's a good thing. Our thoughts, prayers and love are with you constantly. Be strong for your little Angel girl.

BeLieVe iN MiRaCLeS!
Love to all....
MaryBeth

Lindsay Alexander said...

Ya know this might sound strange, but write her a little book while you are sitting with her.. then some day you could read it to her.. A good outlet for what could become overwhelming nervousness! Thinking of you as usual and trying to think of anything that I could do from here that might help you! Prayer seems to be the winner! Stay strong, and loveable to all!
Lindsay Alexander

Marilyn said...

Cassi and Brian,
I justed want you to know we are still praying for you both and Baby Elli. Hang in there. She is such an angel!
Marilyn Johnson

Roger & Ann said...

Hi, guys you really have been on a roller coaster ride --she is so precious, I like the comment from Aunt Annie about blowing kisses, perfect for your situation. We pray for you and little Elli, God's blessings. Roger & Ann

My Three Sons said...

Keep fighting Baby Elli!! We are all praying for you and hope that your pain in getting under control.

mommy to Kaden, Brody and angel Ava said...

Just wanted to let you know that you all continue to be in my thoughts and prayers. Hopefully the doctors will find a happy medium for Elli. I know that it is VERY hard not to touch or talk to your baby, but hang in there the day will come sooner then you will know. She knows that you are there, she can sense your love.

I know you haven't really talked about how hard it might be for you guys up there, being away from home and at such horrible circumstances...but believe it or not it does get "better." I think the first few weeks are the worst. After everything is said and done you will probably look back and think of the RMH as your home away from home and the staff as well as the hospital staff as part of your extended family. You guys are an amazing support system for your baby girl. She is very lucky to have such strong parents.

Auntie Annie's Mom said...

What tired parents you must be, but I know your love for your precious baby keeps you going. Stay patient, try to get some rest, and let little Elli and her heart and lungs figure this out (with a little help from those amazing doctors, and especially from The Lord above). The prayers continue . . .

Carol Mathes

CDH mommy said...

Brian and Cassi

My name is barb and I to am a CDH mom. Just wanted to let you know I'm praying for your sweet Elli. I was in your shoes not so long ago and know how hard this journey can be. Miss Elli seems to be one heck of a fighter and know she will continue to do so. Don't lose hope, not even for a minute. These precious babes keep us on our toes every minute of every hour of everyday. I'm looking forward to reading your post and thank you for sharing them. Your all in my thoughts and prayers. Many blessings to all of you.

Dr. Vikas Kohli said...

Got to know of your blog via an auto search on pulmonary hypertension that I have. I am sure your doctors have discussed using a gas by th ename of NO (nitric oxide) ; you already mention sildenafil/Tadlafil being considered. All the best.
Vikas Kohli MD FAAL FACC
(you may make this post private if you want or remove it)