Posted (Tina) in All Posts on November-29-2007

Ella had a rough day.

Her ET tube got clogged with a mucus plug. They tried to suction it out, but they were not successful. In the meantime, Ella was having a tough time breathing and got scared. She turned her bluish/purple color and got very upset. Once she gets this upset, it is tough to console her.

They opted to extubate her since they were not able to clear her airway. From there, they placed her on CPAP. But she was so annoyed, the CPAP was not helping her much. Then, they gave her versed (sedation) to try and calm her down. That was not effective either. Next, they placed an oxygen mask over her mouth to help her. She seemed to respond to that treatment the best, but they can’t stand over her and hold it. So, they opted to try a high flow nose cannula. Initially her stats were not doing well, so they increased the cannula to the highest amount of oxygen. This seemed to improve her stats and get her to a place where she could calm down.

They took a blood gas and it was in the acceptable range, so they left her on the nose cannula and were intending to simply monitor her clinical signs and go from there. Unfortunately, Ella had a nurse that was not familiar with her. This just made the situation more stressful for Ella and the nurse.

By the time I was able to visit in the evening, she was still on the nose cannula. The nurse and respiratory therapist were noting that this was the best she looked all day. But as soon as I saw her, she did not look great. She had a difficult day, but right in that moment, her breathing was labored. Her saturations were low to mid 90s. She was having a tough time – – more than normal for Ella.

My intuition told me that this was too big of a step for her. Immediately, I asked what the plan was for her care. I was told that they were intending to leave her on the nose cannulas and just monitor her. To me, it was obvious that this was not the right thing for Ella.

I asked to speak to Dr. Kays. If in fact they were going to continue down this path, I wanted my concerns voiced to him and/or I wanted a better explanation as to why this was the right choice for Ella.

Dr. Kays had already left the hospital for the day, but he called in. After talking with the nurse practitioner on staff, she came back and stated that sedation was not the answer and the plan was to place her back on CPAP. This felt like the right decision.

The nurse and respiratory therapist were so hesitant to place her back on CPAP because of her negative reaction earlier in the day. But I could just tell that Ella still needed the pressure to keep her lungs expanded.

Since I knew this was going to be tough for Ella and not something that she would like, I suggested that they let me hold her and then switch her to CPAP. This way, I could place her binky in her mouth and try my best to console her with the change (she has missed her binky over the past week).

Thank the Lord – – it went off without a hitch. She made a sad expression, but was over it in about 2 seconds. She let me hold her and began working away on the binky. From there, her saturations increased and stayed pegged at 100. CPAP is exactly what she needed.

I was able to hold her for about 30 minutes and then it was time for shift change, so I had to put her back in her bed. Fortunately, she seemed to stay in a good mood and I stood by her bedside until I couldn’t any longer.

Some other good news for Ella: her Grandma decided to make a last minute trip out to Gainesville! So during shift change, I went to go pick up Grandma, so that we could go back and visit Ella.

When we arrived, I offered to let Grandma hold Ella. This was her first time holding Ella. The last time that she saw Ella was only a short time after her repair surgery in late August, toward the beginning of Ella’s fluid issues. So, Ella looks a lot different!

Once they settled, Grandma didn’t move for 1.5 hours. Her and Ella seemed content to stay put. At this point, it was obvious that Ella was doing much better. She was interactive and looked comfortable. Thus, it was a difficult day with a good ending.

We are unsure of the next steps other than watching her lungs carefully and monitoring her. There is a good chance that she may need to be re-intubated if she continues on CPAP for a while. As we learned last time, her nares can get so swollen that the CPAP is no longer effective in providing pressure and places Ella in a position where she cannot breathe. We are going to try and avoid that scenario and try our best to be proactive. I’m finding it more important than ever to be a vocal advocate for our baby girl.

Par did well today and I did not get an update on Jonathan, but can peek over and see that he is still on ECMO. Grandma Kathleen is hanging on and fighting for her life.

Please continue to pray for Ella’s strength in her lungs as well as the needs of Ella’s roommates. Finally, please lift up Ella’s Great Grandma and ask that the Lord would heal her body.

We thank you for your support and continued prayers. It means so much during this time.

Roxie (Adrienne's friend) on November 30th, 2007 at 12:31 am #

Tina, What a rough day for you and Ella. I’m so sorry it was so difficult, but glad it did smooth out. As one of my Texas friends says I’m sure you were all “worn smooth out”. Our children do need our help and discernment and you are learning at an early time just how God has made the connection with our children so unique. Glad your (?) mom was able to join you I know she must be a comfort to you. It is nice to see Little Bun’s pretty mouth and her incision looks like it is healing nicely. I’ll be praying for her little nose and airway to receive the CPAP without negative side effects and keep those lungs open. You guys have become such a part of our lives it’s hard to believe that we have never met.Continuing to lifting you all up in prayer. Much love to you, Roxie

The Laz Fam on November 30th, 2007 at 1:04 am #

Congrats, Tina! Your instincts were right on! I know it must be difficult for you not being about to be Ella’s “everything” but clearly you are knowledgeable, and loving her perfectly. Hang in there… day by day, moment by moment… We pray for the peace that passes all understanding – for all three of you – and healing for Ella and grandma.
Blessings – KTJB

Gloria & Red Jacobsen on November 30th, 2007 at 2:20 am #

Hi! Tina & Josh & Mary Alice! I’am so glad your Mom is able to be there with the three of you. How wonderful Mary you were able to hold your beautiful little grandaughter for an hour & half. I feel bad little Ella had such a tough day. She is an amazing baby the way she fights back and smiles in spite of it all. Your right Tina to follow your heart’s lead for the care of your baby. There is definetly a unique God given connection between a mother and her baby as I have found over the years with my 7 children. You & Josh are wonderful prayerfull appointed advocates by God for your baby girl. WE pray for Ella every morning and her little roommates . Love and prayers, Gloria & Red

Adrienne - Melissa's sister on November 30th, 2007 at 3:47 am #

Wow.. Tina.. I echo the words of all the much more experienced Moms who have written before me. As I read your post I just heard that intuition of yours LOUD AND CLEAR and how awesome to know that it *is* so important to be their advocate… hard sometimes but necessary. You are growing and changing just as much as she is in ways you proabably never expected!! Love you girl ..

The Brittain Family on November 30th, 2007 at 5:04 am #

Go Mom! You’re doing super! We’re praying for CPAP to do the trick and for Ella’s lungs to gain strength on their own, too.

Doug on November 30th, 2007 at 7:20 am #

I’d like to revise the “West Family Chant”: Go Tina! Go Tina! Cli-nician! Cli-nician!

Lizotte Family on November 30th, 2007 at 7:26 am #

Tina saves the day! You go girl! Ella you keep working and napping… to regain your strength and keep working on that lung for us please. I love your last picture, it’s nice to see you wide eyed
Lots of hugs to you all.

Joan and Steve Odell on November 30th, 2007 at 8:31 am #

Oh my – what a time. You were so very right to have them call Dr. Kays. I believe in listening to your instincts (whispers from God) and moving on them. How happy Grandma and Ella look. What a special time for all of you. Prayers still going for everyone and Great Grandma. Hugs and love to all – Steve and Joan

Fran Jarrett on November 30th, 2007 at 11:19 am #

Darling Ella…even when she has a bad day I have never seen a photo that she isn’t looking happy and all is well with the world!
And talk about looking happy..what a smile on Grandma’s face!
Tina, you are such a wonderful Mom, but then I never had a doubt in my mind that you would be any other way!

Joel Snyder on November 30th, 2007 at 11:44 am #

Ella, Sorry I didn’t answer this posting sooner but I had to go to bed early last night. It appears that you had a rough day but a good ending. Now you have the full attention of your Mom and Grandma so lets keep up some real progress. I am praying for your Great Grandma and your other baby friends. Tell your Mom that Grandpa went to the house in Lone Tree this morning and all is O.K. Love, Grandpa!!!!!!!!!!!!!

Sheila on November 30th, 2007 at 11:44 am #

Ella is beautiful even on a bad day. We are praying for the healing hand of God to be on her today. Thank you for sharing her story with us.

Chambers Family on November 30th, 2007 at 4:02 pm #

You truly know what is right for Ella at this point. Being there everyday watching her move through each step of the healing process is something only you and Dr. Kays have done.

I can’t imaging how tough this is for you — but watching the process at a distance has been amazing. You have found strength that I don’t think I could muster up!

We are with you.

Laura Marold on November 30th, 2007 at 6:30 pm #

Hi there,
Just a little note to say hi! I was just going to call Mary and she pops up on Ella’s website! Wow, all three of you ladies have your work cut out for you. What a lot of pressure!
So sorry to hear about Josh’s grandmother. I’ll be saying a little prayer for her and of course for you two ladies and our darling little bundle of bun-joy. Hope things are better tonight and tomorrow. As always with love, Laura M.

Laura Arneson (Adrienne' friend) on November 30th, 2007 at 7:09 pm #

Sweet family, reading Veggie Tales clues to Good News to my boys and was reminded “You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.” Ps 16:11 God has a path for us to follow and he is all we need along the way. God loves and cares for us. God is always there with us and want to be an intimate part of our life. He always listens to our prayers. You are blessed,thank you for being the best advocate for Ella. This lesson we all learn as new parents is if we are not our child’s earthly advocate who will be…CPAP decisions will soon seem a lifetime away, and how to balance all the activities will be on your prayer list. Have a comfortable night, rest peacefully. Laura

Tammy on November 30th, 2007 at 8:11 pm #

Sweet Ella already has a “voice” in her care, keep it up little tiger.

Only from personal experience am I acutely aware of the importance of speaking up LOUD AND CLEAR when things don’t seem right, or your gut instinct (which the Lord gave each of us for a purpose) keeps screaming one thing while the hospital staff does another.
Oh my but how your words take me back in time! May the Lord continue to hold you up and keep you strong in your advocacy for sweet Ella.

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