Elliott Arcile Reed

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

Saturday, September 6, 2008

Giving Us a Scare

It's 2:30 in the morning, Brian and I have been sitting/standing by Elli's bedside all day. It has been a really rough day, Elli's saturations have been hovering in the low to mid 70's most of the day. When we got back from shift change Elli didn't look very good at all. She was dusky and bluish around the nose and mouth. The doctors were very concerned because of the consistantly low saturations, and by the looks of the x-ray at 10:00 and today's ECHO it looked like it was more a of a heart problem then a lung issue. The doctor flat out told us that Elli was in serious trouble and "in heart failure." Well 2 hours and 30 minutes later they started some new meds. Brian and I were very upset thinking that we were loosing our baby and when we asked the doctor about it she said that she meant that Elli "could" go into heart failure...very big difference from "could" and "is". Either way after much pacing and crying they started Elli on two new drips. They started Epinephrine to raise Elli's systemic blood pressure, and then started a prostaglandin to try to make the right side of the heart not pump as hard. At first it looked like it wasn't going to work, her blood pressure and pulse sky rocketed and her oxygen saturations dipped into the low 60's, but slowly the saturations started coming up and her blood pressure leveled out. It wasn't until after all the drips were started that the doctor told us that she had never tried this combination before...not too reassuring, but she had been discussing Elli with several other doctors in the NICU and PICU throughout the day. As of now Elli's saturations are sitting around 89-90 which is much better. The nurse is drawing blood gases every 2 hours, so hopefully the next one will look better. Elli was in metabolic acidosis earlier, but her pH seems to be rising slowly so that is a good thing. Dr. M would like to see Elli's blood gas level on oxygen in the 60's which it was 38 on the last blood gas. The next gas is not until 3:15 which we will be staying to hear the results.
As far as Elli goes, she looks comfortable and has not been grimacing or acting like she is in pain for most of the evening. There was a slight miscommunication between the resident doctor and the nurses. He told the nurse not to use the PRN Fentanyl that they didn't want her blood pressure to drop too much lower, well the last day and a half the game plan had been that any time the nurses were to do cares, before they even touched her they were supposed to give a PRN dose of the Morphine (yesterday) and Fentanyl (today). So when I was helping the nurse reposition Elli after shift change I noticed that she was very fussy and her saturations were dropping and I asked if she had given the Fentanyl yet, and she told me that the resident doctor had said not to. Needless to say after saturations dropped at one point in the 50's the resident doctor came around and asked why she was so low. Well clearly she was upset and had not had any pain medicine. Either way he said that he mis-spoke and that she could have her PRN Fentanyl when the nurse had to do cares. It only took 3 hours and two new medications to get her saturations up to where they started before her repositioning and diaper change. I hope that this information about the PRN's is well circulated through the doctors and nurses so Elli won't have to battle to keep/get her saturations up. I don't mean to vent, but for a while Brian and I were pretty ticked. It didn't help that we could clearly see that Elli was not doing good so that just added to the frustration. Things are looking a little better now, defiantly not out of the woods by any means. But as always Elli is a little fighter and is trying to hold her own. Trying to keep the faith. Brian, Cassi, and Elli

7 comments:

Amy AKA "Baba" said...

((((Hugs))))! I wish I could be there, in person, to support you guys. This is SUCH a difficult time and your love for Elli is so evident. I know she can feel you there cheering her on.

Fight Elli, Fight!

cbgricci said...

Hang in there guys. Sounds like a very tough night!!!! As always, the three of you (and Elli's doctors and nurses) are in our thoughts and prayers.

Love,
Colin, Brandi, & Grace Ricci

Grandma Reed said...

Dave & I read this about 5:30. Had to wait a while to post. I wish there was more we could do but we are praying that things will start going upward soon and stay there. We love you very much.

Nancy L said...

That was another hairpin curve and huge plummet on the old roller coaster, wasn't it? I wish there was more we all could do. Hang in there.
Nancy

SalenaZarb said...

I wish I was there to give you a big hug and take away some of your burden! I am praying for the three of you and so is Tony's entire family!!! I love you-Salena

wcmbabanurse said...

Words cant really say anything to you guys right now..... but remember she did you proud and fought to the end. My little girl died on 8th September 2002 from a congenital diaphragmic hernia but only lived for six hours from birth due to battling with extreme prematurity too. But the nicest thing is hearing that she died in your arms. You will treasure that for the rest of your lives that she died comfortable and knowing that she was truly loved! You cant do more than that as her parents!!! These days right now will seem meaningless but in time you will in time use this experience for a purpose. For me I became a NICU nurse ( three years on from her death) to give back something in honour of my daughters brief existance. Remember take one day at a time and dont be too hard on yourself when you feel down and unsure why. Six years on certain things can still bring me to tears in memory of her. Dont expect too much of yourselves but rely on each other for support. It makes the journey an easier one when there is someone to share it with. Remembering her should be an honour and when you have worked through the emotions of confusion, guilt happiness and sadness, you will see a light at the end of the tunnel and talk about her as freely and openly as if she still with you. You may even get to a point where you remember her birthday with a cake or some other physical sign of her existance. Whatever you do will be right for you and your circumstances.

Take care. You will be in my thoughts and prayers right now for your pain and loss is one that noone can understand unless they truly experience it themselves.

Be strong and remain true and fair to each other as a family.

wcmbabanurse said...
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