A Setback

After a peaceful day of football and family, Becky had a major setback last night.

Her left lung collapsed shortly before midnight.

I called to speak with Nurse Jessica shortly before bed. I heard tension in her voice and commotion in the background. She assured me things were under control and that Becky was safe. I debated with myself for a few minutes and then decided to check for myself.

I walked over the hospital shortly before midnight, grateful yet again for the close proximity of the Ronald McDonald House. The PCICU was quiet but there was significant activity around Becky’s room. Becky’s left lung had dropped and she was dangerously close to being re-intubated. Jessica told me that Becky’s numbers had looked good for hours but her breathing looked funny. When she listened to Becky’s chest, she couldn’t hear any breath sounds on the left side. Jessica worked quickly, calling the doctor, charge nurse, and respiratory therapists.

I sat next to Becky holding her tiny hand as the team worked diligently to keep her off the ventilator. The charge nurse was preparing for intubation as a precaution. I did my best not to look at the medications, syringes, and crash cart being readied in the corner. The respiratory therapists did an aggressive treatment and eventually heard some slight sounds on the left side. I did my best to calm Becky so the nurse could draw a blood gas. The team waited for a tense few minutes for these test results. Thankfully her numbers significantly improved and Jessica encouraged me to get some sleep.

This morning has been a flurry of interactions with new team members. With each conversation I gain new knowledge and a better grasp of Becky’s medical condition. There are three main concerns for Becky at this time. First of all she has pulmonary hypertension which is causing the right side of her heart to be too big and to work too hard. Some of this is due to her heart defect. Even though the defect has been surgically repaired, it will take time for the pressures to come down. Additionally children with Down syndrome are prone to pulmonary hypertension even without a congenital heart defect.

The second concern is the collapsed lung which is also putting pressure on her lungs. Becky is receiving a variety of treatments and medications to help with both the pulmonary hypertension and the collapsed lung. She is on a non-invasive ventilator which is giving her additional respiratory support. Becky’s lung is slowly re-inflating. Hopefully the trend continues. Dr. N, the PCICU lead doctor for the next several days, said that Becky is not out of the woods yet. However her x-ray is improving and her numbers are better today. They will wait for an x-ray tomorrow morning and watch her clinically today.

The third concern is a potential chylothorax. Patients with pulmonary hypertension can be prone to chylothorax. While Becky isn’t producing lots of chyle, the doctors are waiting for some test results before potentially changing her diet.

The Pulmonary Hypertension team is now following Becky. Dr. K leads this team and spent some time discussing the various protocol and medications as well as the treatment goals. Once she is released from the hospital, Dr. K will coordinate with Becky’s cardiologist to continue treatment.

Things have finally settled down this afternoon and Becky is busy studying her new mobile. She enjoyed her occupational and speech therapy sessions, reveling in the therapists’ attention.

So Team Becky grows larger as new experts come on board. We are profoundly blessed by the people at this hospital. Their care and concern for this 13 pound bundle of joy is deeply moving. I now have a motto for Team Becky, inspired by her Type and Screen blood test. Becky has B+ blood, so the motto is literally running throughout her entire body.

Be Positive.

12 thoughts on “A Setback

  1. Oh Kathleen. Sorry to hear of the setback but glad she’s doing better. Hopefully she’ll turn a corner!! Keep being strong Kathleen and family. You can get through this. It’s hard but she is a miracle and in the best place possible. Great caregivers keep you staying positive. Love and light Kathleen!! Love emoji


  2. I am so sorry she had a setback. As you already know we are praying daily. Thank you for faithfully updating all of us even with all you have going on. Love you all – Mary W


  3. Kathleen, thanks so much for the update. Unfortunately, you are having to get good at all of these medical subspecialties. You have had your genetics and cardiac rotations, and now your pulmonary. No doubt your medical degree will show up in the mail any day! ; )

    Wonderful that you are so close, as nobody knows the nuances of your daughter better. You are uniquely qualified to Becky’s growing medical team be at its best.

    Prayers continue.


  4. Becky is such a trooper! Tears stream down my cheeks thinking of all she and you have been through. I’m happy she’s improving and continue praying for more miracles for my sweet great niece. I pray for God’s healing power for her lungs and heart.


  5. Oh Kathleen, Providence support you and Becky. All the family. You are all loved and supported in my prayers.

    Sent from my iPhone



  6. Sending much love and prayers to sweet Becky, to you, and your family. I am so sorry to hear about her setback, but glad she has improved throughout the day. I think of you often as I remember passing by the PCICU daily while Dean was in the ASHU. You are surrounded by such an incredible group of health care professionals. Sending much love and hugs! And what a great motto for the Team Becky and your strong baby girl!♥️🙏🏻


  7. I am so sorry that Becky had a set back. She is absolutely where she needs to be surrounded by a great team that will help her recover. On a positive note her lung is starting to open up and she did not have to be intubated. I am sure she loves having you by her side. Sending a hug! Be positive!


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