Elliott Arcile Reed

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

Thursday, September 4, 2008

Shhh....Elli is Sleeping

Well since the 4 o'clock gas things have been pretty rocky. Elli's saturations were down in the low 70's and hung out there for a good 4 hours. Of course today was going to be tough anyway knowing that Dr. K was going out of town, and then Elli decided that she wanted to "act up" Anyways 3 chest x-rays and and abdominal x-ray later it was determined that Elli's right lung was over inflated. This is a problem because over expansion causes the HFOV to not be able to "shake" her lungs as much thus reducing the amount of CO2 that can be blown off. So of course the doctors tried to mess with the vent settings, but really to no avail. Turning down the MAP and the Delta P up seemed to slightly help the right lung for a very short time period, but they were concerned that the left lung was now being under inflated. Several blood gases later it was determined that Elli was still not ventilating or oxygenating very well, but they couldn't really find a reason. They ran a CBC (complete blood chemistry) to determine if her white count had risen (would indicate infection) but it didn't really change. The doctors decided to stop the Gentamycin and change to a more broad spectrum antibiotic, and decided to add Flagyl (an anaerobic sensitive antibiotic that works on bugs found in the gut) in an effort to cover all possible infective organisms. Really none of the cultures or blood draws were leaning towards infection, they were just concerned about the recent surgeries and the fact that she did have a temperature during the night.
At 7 o'clock we had to leave for shift change which about killed us, knowing that Elli was still having saturations between 71-76%, and knowing the doctors really didn't know how to bring them up. They tried changing out her endotrachial (ET) tube because it was the one that she was intubated with at birth and it had developed an air leak. This was causing the HFOV to not be able to keep a constant mean airway pressure. Even after the ET change her saturations didn't improve and the doctors were considering trying Elli back on a regular vent since they had decreased the HFOV settings down to where it wasn't really doing a much better job than a regular. So we didn't know what to expect when we got back after shift change.
The new attending doctor on for tonight, Dr. M decided to try starting Elli back on her Dopamine (they stopped it). He was concerned that Elli's pulmonary hypertension was getting worse because of the over inflation and that the right side of her heart was having too high of pressures causing deoxygenated blood to be shunted to the left side causing it to mix with oxygenated and then recirculation in the body thus causing the overall decrease in her oxygen saturations and increase in the amount of CO2 in her blood. Well as of midnight her oxygen saturations have been looking much better averaging between 85% and 90%. And also her last blood gas looked slightly better, she was very acidotic earlier today and that is starting to get closer to normal range. Normal pH is between 7.35-7.45 and Elli's blood gases today have been running around 7.15, but the last was 7.25 so it looks like she is going in the right direction. Also her base excess (measures the compensation factor in metabolic acidosis) was around 7-8 and on the last gas was a little over 4, so hopefully the next gas which our night nurse Kelly (has been on the last 3 nights) is currently drawing, will continue on the same trend.
Elli seems much more comfortable, it looks like the increase in the Morphine drip has helped as well as the nurses staying on top of the pain with extra PRN doses of Morphine and Versed whenever they have to do any assessments. Basically we are trying to stay super quiet, and not do anything that could agitate her. This means no touching or talking. It's hard, but whatever is best for Elli is what we will do.
Brian and I both knew that this was going to be the trend for a little while, things look good then they take a dip and start to look better again. I guess we were just hoping that last night Elli was going to "turn the corner" so to speak and start steadily improving. It is so hard not knowing what exactly is going on, and seeing the doctors puzzled really puts a strain on us emotionally. This afternoon was pretty trying, but as of now Elli seems to be doing a little better, and will hopefully continue to become more stable as the doctors try to determine the best avenue to pursue. I am sure we are going to stay at the hospital late again tonight, even though we are unable to touch or talk to Elli, we feel better knowing that we are at least near her. As always taking it day by day and thanking everyone for continued thoughts, prayers and support. (sorry no pictures...it's kind of like a museum, no flash photography)
Sorry just one more thing, last blood gas just came back, looking better, seems like if this trend will continue she will be back in the acceptable parameters soon. But shh...we aren't going to tell Elli she is doing better, we'll let her sleep.

13 comments:

Jen said...

I'm so glad to hear Elli is doing better today. Extra prayers for all three of you!!

Jen Miller

LauraT said...

I'm glad the gases are improving. I hope the trend continues. Know that I am thinking of you often and I'm sorry I haven't posted in a while. Hang in there. I know this has to be tough. Laura

~jazzerbrynn~ said...

So many blood gases and ups and downs - you are a strong family!!! It sounds like you've got it right to not fill Elli in when you get the good news! I'll keep you all in my thoughts. Hope tomorrow is a good day!

Jessica H.

My Three Sons said...

I will be praying for Ellie. Your family is constently in my thoughts.

Kaci

amberthompson said...

Lots of prayers for Elli and lots of prayers for mommy and daddy too. May you all have a very restful weekend. Your baby knows your there and that's enough for her.

God Bless,
Amber & Jesse Thompson

Chrissy said...

She's scaring the ##$%^ out of everyone! I really feel she is an incredibly strong baby with a strong will to live. My sisters & I were talking about how well you & Brian are handling it all. You're amazing to all of us.

Keep it up!!
Chrissy

gma2be said...

Good Morning my Sweets! Stayed up till 10:30 (really late for gpa and me Ha Ha) for update. So sorry that the day went so rough. Prayed for a good night and will be praying for a better day today. Know that we will be thinking of you and praying for improvements. We love you all so much. Hugs & kisses to Elli!

KimShep said...

Sorry you are expierencing a roller coaster ride but it sounds like everything is getting better. Let your little sweet pea rest and she knows you are there with her even though you can't talk or touch her. Hope you have a good day today!!

Kim

- said...

We'll be saying a bunch of extra prayers for you guys today. Just be strong and hang in there, knowing you have so many people who love and support you.

The three of you are an inspiration to us all.

Much love,
-Justin and Jenny

Grandma Reed said...

It's a good thing the CDH family tried to prepare us for the ups and downs. I try to remember Elli is writing the story and the Drs. are reading between the lines. God is guiding them.
Our prayers are with you. It was hard enough for you not to get to hold Elli but not getting to touch or talk to her must be torture. My heart bleeds for you.
Better days are ahead. I hope the weekend is peaceful and that Elli's #'s keep getting better.
We love you all 3!

Tracy Meats said...

I know from experience the CDH journey is a roller coaster ride, with many ups and downs. Stay strong and "hang in" there with Elli. She seems to be a strong little girl and many prayers that she will have "good" days ahead of her. I remember the times when we were to be very quiet around Ian and not to touch him--but he knew we were there, from the love that surrounded him. Elli can feel your love in the room and is fighting to come home with you. Hugs to you and your family--an amazing family filled with the love and hope for this precious little girl. Take care.

Tracy Meats - WY State Rep. for Cherubs and mom to Ian (LCDH, 4/3/04)

lynard said...

you two are amazing parents, and i dont even know you brian. this little girl is lucky to have such strong and patient parents. sounds like elli is keeping you on your toes. i hope today is a better day and can just rest and heal. know that i am thinking about you three all the time and wish you all well.

lynn mace

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

That darn roller coaster. I am sure you are wondering when it will end...I pray that it will very soon.

Remember to take care of yourselves too, you will want to be ready to go when Elli gets home!!!