Posted (jooosh) in All Posts on November-18-2007

Ella had a rough day today, and an even tougher evening. Ella has seemed more agitated the last few days, and when she does get upset, it takes her longer to calm down. To us, this is a sure indicator that our girl is really not feeling like herself.

After thinking about it more, we really felt like the morphine was the main cause of her issues. It’s the only thing that has changed in the last few days since her picc line came out. The problem may even be two fold: the fact that the morphine is being delivered via her NG-tube, possibly making her sick, and when she gets sick, and spits up, she’s not getting her dose of morphine, creating more withdrawal symptoms.

We could really tell that Ella was not feeling well when I was holding her tonight. She was ok for a little while (that’s when we snapped the pic above), but she really didn’t seem comfortable and just kept fussing. We indicated to the nurse that it wasn’t normal for her to be acting this way, and we talked about the possible issues with the morphine. She thought it might be a good idea to share this with the nurse practitioner, so she stepped away to go talk to her.

Some time had passed and we were doing everything we could to comfort Ella. We could just tell that her reflux was also bothering her, and with that she spit up. The spit up was very chunky and congealed. In the middle of this, the nurse returned to help me clean her up and Ella spit up again.

I could not calm her down. She was still fussing. The nurse practitioner showed up. We started talking to her, expressing our concerns. We put Ella in her bed, but something was wrong.

Ella was having a hard time breathing. She was extremely clammy and her head was very sweaty. Her O2 was dropping, and she couldn’t catch her breath. At this moment the practitioner was studying Ella’s chart, when I told her that something was not right. She went to examine Ella.

It was obvious that Ella was having difficulties breathing based on the fear in her eyes and how hard she was crying. She was starting to turn purple.

At this point, Tina and I were getting pretty upset. We couldn’t understand why the nurse was not giving her more oxygen by putting the mask over her face. We were getting more upset. The practitioner remained calm though, and we started to get control of ourselves and get out of her way.

They tried suctioning out her nose with a tube, but they were not successful. Ella’s nares were so blocked that they couldn’t pass the tube through. They tried a few times with different size tubes, but with no success.

Roger then came over to help out. Thank God for Roger. Not that the practitioner wasn’t doing well, she did a fantastic job, it was just nice to see a familiar face that had been with Ella in the past.

Roger then secured an oxygen mask over Ella’s face while they prepared a treatment to help her swollen nasal cavity. A few moments went by, then Ella spit up again. This time the practitioner was able to clear her mouth out with suctioning.

The other RT (Stef, another familiar face), showed up with an oxygen hood. This is used to humidify the air and, I may be wrong, but I thought they were also delivering some med that would help her nasal cavity as well.

Ella was still quite upset, so I tried to calm her down by singing to her.

She started to calm down….
She began to catch her breath…
Her stats starting coming back up…
She calmed down enough to fall to sleep…

The nurse partitioner requested that a blood gas be taken to check Ella’s cO2 levels. They waited for her to calm down some more before they drew her blood. It requires a needle stick because she has no other lines in her right now.

Stef and Roger looked for a good vein to draw blood from. They thought they found a decent spot on her left hand, but passed the torch on to Joy from the transport team (Note: Joy made Ella’s bow when she was on ECMO, the pink one on the top of this page). Normally I run away during needle moments like this, but you couldn’t pry me away from my girl at this point.

The needle went in…Ella didn’t flinch. Joy was having some trouble finding the vein. Ella started to fuss after a bit, but then…finally…the blood flowed, and Stef drew it up into the syringe.

We then calmed Ella back down. She sucked hard on her binky, and started to fall asleep.

Her blood gas looked good. cO2 and pO2 were fine, and her pH looked totally fine which was really good to hear. If these were not in line, there was a chance of her being intubated. We’re glad she didn’t require it, even though it’s going to happen sometime this next week for her surgery.

Tina and I spent the rest of the evening calming her down, talking and singing to her. We finally got her to a solid sleep state around 11:45pm EST.

We hope to speak to Dr. Kays tomorrow about Ella’s nissen surgery. We’re even more anxious now that we see how great her potential is for aspirating when she throws up.

Pars parents (Liz and Rusty) were getting ready to head out too, so we walked out with them. So glad to have them there with us.

Thank you Lord for being right there tonight. Thank you for the nurses, RT’s, and other staff that were there to help Ella. Lord we pray for our baby girl to be stable tonight, and that she will not spit up at all. We praise you even through our moments of anxiety, and know that you never leave us or forsake us. We continue to pray for our baby girl as well as baby Par and Jonathan. We ask that you heal their bodies Lord. In Jesus name. Amen.

Roberts Family on November 19th, 2007 at 12:34 am #

stayed up to see the update. So sorry to hear Ella had such a rough evening. I can’t imagine having to watch that, thank the Lord for the medical staff. I will hold Ella in my prayers tonight.

The Laz Fam on November 19th, 2007 at 12:45 am #

oh, how agonizing… but we trust that God used this experience to grow – yet again – your trust in Him. we praise Him for the kind and knowledgeable staff, and for your love and growing knowledge of your little girl.

Laura Blackwell on November 19th, 2007 at 12:57 am #

Oh dear, reading this made me so anxious! I am so sorry Ella had a very rough night. Praying for your precious girl and for a great conversation with Dr. Kays.

Brendan on November 19th, 2007 at 2:56 am #

Excellent diagnosis Dr. West! Can you say roller-coaster? We will keep bun-ella-bean in our prayers. Will also be praying for you two…that your continued strength and focus on God would not wane but that you would grow stronger and closer to Him who created all things, even Ella.

Roxie (Adrienne's friend) on November 19th, 2007 at 3:42 am #

How my heart hurts for you. Such an anxious time you have had. We will pray for Ella’s comfort today and Praise Him for Ella’s discerning parents. Continue to let the Holy Spirit be your guide in all things. Love you to West Family, Roxie

Roxie (Adrienne's friend) on November 19th, 2007 at 3:49 am #

How beautiful that the sound of her father’s song brought her comfort and a sense of security. Hummm…Let us listen for the sound of our Father in Heaven as He speaks His word of comfort to us. He knows and feels the pain of watching His son and us as we struggle. Love to Josh and Tina, Roxie

Charlotte Rehrig on November 19th, 2007 at 3:53 am #

In prayer with you. God bless.

Kristen on November 19th, 2007 at 6:06 am #

Oh my goodness Ella! Your daddy knew just want to do. Josh, please check on this as well. Morphine is classic for causing constipation, like a severe case. I have no idea what they do to prevent it in babies so young. But please ask, when adults are on Morphine the immediately start meds to avoid constipation. Ask the NP about this specific possibility. Please excuse me, that is my RN two cents speaking. You may have already thought of this. I am praying for you now!

Liz Mueller on November 19th, 2007 at 6:46 am #

We are praying for all of you and especially Ella.She is so sweet and growing so fast.Have a blessed Thanksgiving.

Joel Snyder on November 19th, 2007 at 6:50 am #

Ella, Sorry to hear that you had a bad evening. I am praying that you will have your surgery soon and that you can start forward progress again.I am going to the house in Lone Tree today and will check on you later. Love, Grandpa!!!!!!!!!!!

Williamsburg on November 19th, 2007 at 7:58 am #

Wow – talk about a stressful evening. I’m so sorry the three of you had to go thru that. It does confirm the wisdom of having the nissen, tho, despite the additional stress of more surgery. Sending love and hugs your way, and prayers for a calmer, better day today for everyone. XOXOXO

Char Snyder Jordan on November 19th, 2007 at 9:12 am #

Fragile babies are so instantaneously sick so quick. You were all so brave and helpful for Ella. Hopefully all the babies will go forward this week. We are aware of your needs and petition Father to help and care for all the babies. If it is his will I know good things will happen. We are constantly in our thoughts and prayers today. LOL Aunt Char and JIm

Kara Snyder on November 19th, 2007 at 10:51 am #

Poor momma and daddy, I’m so sorry you had to go through that. Watching your child gasp for air is terrifying. What a blessing that you are going through all of this where you are. I’m sending you both big hugs. Wish I could do it in person.

Dawn Franck on November 19th, 2007 at 12:13 pm #

What a day and what a night! I was at the edge of my seat reading what you had to go through. Thankfully everything seemed to get a little better for her. I hope Ella has a better day and that her surgery comes soon to bring her more comfort. Hang in there you guys, I know this must be very challenging for both of you but you are doing such a wonderful job of taking care of your precious baby girl. All my love, Dawn

Todd Katler on November 19th, 2007 at 12:46 pm #

You guys and the staff at the hospital continue to do such a hero job caring for that precious little girl of yours! I can’t wait to see her in-person!

Allison on November 19th, 2007 at 3:15 pm #

So sorry to hear of little Ella’s struggles. I am still praying daily for her and for the two of you. God will give you the right direction. A friend’s little boy also has a nissen and a g-tube, he does awesome with it. I hope that gives you some encouragement. God bless you this week and hope to hear that Ella is feeling better soon.

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