Posted (Tina) in All Posts on August-14-2008

Unfortunately, Ella is about the same.

Last night while she was sleeping, we were able to adjust her down to 1 liter of oxygen. Her heart rate was mostly between 125-135 which is manageable (still higher than normal).

Once she was awake, the 1 liter of oxygen was not enough. Within 30 minutes, her saturation went down to low 90s and her heart rate was up around 185. This is way too high and basically the same as yesterday.

When I spoke to Dr. Perry, I explained what was going on and he could hear the alarm from her pulse oximeter going off in the background. He noted that she might need more oxygen while she is awake and to go ahead and keep her comfortable, especially if the extra oxygen would help her heart rate to decline.

I tried 1.5 liters but it did not seem to make a difference. Once I switched her to 2 liters and waited, her saturation was 99-100% and her heart rate when resting went down to 150ish. This is more manageable.

Dr. Perry thinks that although her condition has persisted, we should sit tight and give her the O2 she requires to keep her comfortable. If she becomes fussy or exhibits other signs of distress or requires more oxygen than 2 liters, he wants us to call back. Otherwise, we will just plan to go to the pulmonology clinic at our normal scheduled appointment next Thursday at 3pm.

So even though Ella is “dry”, she did retch a few times today. Also, she still is requiring more oxygen even though she does not have pulmonary edema. The steroids made a huge difference for her last week. And somehow over the past 2 months, things are different for Ella. She seemed to be stable 24/7 on way less oxygen; not different amounts of oxygen at night versus the daytime. We were also at sea level. She was not retching post NICU in Florida the way she has since we have been home in Denver, but she also got more “wet”.

I may have mentioned last week that they want to do a bronchoscopy. Since Ella would need to go under general anesthesia, they want to do this procedure at the same time as her hiatal hernia surgery. Bronchoscopy is a procedure that allows the pulmonologist to look at the airway through a thin viewing instrument called a bronchoscope. During a bronchoscopy, they will examine Ella’s throat, larynx, trachea, and lower airways.

The pulmonologist last week mentioned that when they did the swallow study, that Ella’s epiglottis does not function properly to help avoid aspiration. Your body has one other built-in feature to help avoid aspiration and that is the muscles around your vocal cords. From her clinical signs, they think that Ella might have weak muscles around her vocal cords too, likely from being intubated for so long. This could explain difficulty swallowing, working harder to breathe (if the muscles are floppy and don’t contract properly, it blocks the airway), retching, etc. Also, it might mean that Ella could be micro-aspirating or is at greater risk to aspirate. So, they have not given us the thumbs up to move forward with any oral feeding until this test is complete.

This is another reason we are anxious for Dr. Kays opinion, so that we can figure out when to schedule the bronchoscopy and hiatal hernia surgery. Without these procedures completed, we cannot move forward with any feeding therapies.

It’s just hard to sit each day and wait for an entire week. We know something isn’t right because she is not really stable unless she is on 2 liters of oxygen when she is awake and 1 liter when she is asleep.

Please pray for the Bun and her comfort. Also, that her respiratory status would improve in the coming days. Finally, that we will be given wisdom on the right procedures for Ella and these latest medical challenges.

Nahum 1:7
The LORD is good,
a refuge in times of trouble.
He cares for those who trust in him.

Rachel on August 15th, 2008 at 3:25 am #

Ella is so precious and she is precious to the LORD. I do not know why He is allowing her to go through this, but I do know HE can be trusted. I am praying for all of these health issues to resolve and for her to be a much stronger person (mentally, spiritually, and physically) for it.

Lizotte Family on August 15th, 2008 at 4:30 am #

Keep up the good work Tina. It sounds like you are doing a great job helping Ella get through the night. I’ll pray for Dr. Kays to contact you soon and Hernia the bronchoscopy and Ella to all get better. She is beautiful and know you are so blessed to have her with you.

Steve and Joan Odell on August 15th, 2008 at 6:02 am #

Love your hairdo, Sweet Ella – Prayers continue for her needs and yours and Josh to be met. Hugs – Steve and Joan

Jennifer Harris on August 15th, 2008 at 8:19 am #

Ella is so beautiful and I think about her through out the day and pray for her every night. I’m in tears but I know GOD is always with her. Chelsea and I will continue praying for her healing as we know GOD answers prayers. Again, thank you for sharing.

Grandma on August 15th, 2008 at 10:05 am #

Dear Children, and baby Ella
I am praying that God will give you his blessed peace that passes all understanding I can imagine how hard it is to wait when your baby is not feeling well ,watching her wretch for days just killed me. I have watched you both take care of that little Girl and know she is in good hands. I know that while we wait on the Lord he is still working behind the scenes to make all things happen for the good, but in HIS perfect timing. You have to take a deep breath and put it all on him. Since I am sitting here in tears I know I must listen to my own advice. To put it simply it is so much easier to give the situation to the Lord. It is so gut wrenching to watch Ella suffer. My heart is with you both
Love Mom, Grandma West

Tammy on August 15th, 2008 at 8:26 pm #

Ella, you do have great hair!!!

Life is a merry-go-round, and sometimes it’s “merry” and other times we just “go round”.
One thing is certain, the lord has it all in control (even Ella’s hair).


Katy Nilsson on August 15th, 2008 at 8:38 pm #

Ella is a blessing and we all pain to see her having difficulty. Prayers and love to all three of you.

Joel Snyder on August 15th, 2008 at 9:40 pm #

Ella, I am sorry that I almost forgot to post a message for you but I did call your Mom earlier today. She said you were about the same and I hope that you start to feel better soon. Love,Grandpa!!!!!!!!

Post a comment

Name:  (required)
Email:  (required)