A Plan to Breathe Easier

A Plan To Breathe Easier

On Monday, November 17th I found out that Elizabeth had an appointment with Pulmonology at CHP.  So, I actually was able to work most of he day, because her appointment wasn't until 3:00.  My Aunt Nancy accompanied Elizabeth and I on the trip to CHP. 

We met with Dr. Erik Forno and his medical student.  They were both great practitioners who took an incredible amount of time to review Elizabeth's medical history, symptoms, etc.  We spent a significant amount of time discussing how her chronic respiratory issues can be understood by the recent findings.  They really gave me the impression that they cared about Elizabeth and were concerned, especially with the recent bout of Bronchiolitis and the upcoming surgery.  

Dr. Forno agreed that we should be keeping up on the Flovent.  So, we will continue giving her two puffs through a spacer twice a day.  This will help to reduce respiratory issues, keep her airways open, and allows her lungs to work a little easier.  He also hypothesizes that her chronic respiratory issues, multiple cases of bronchiolitis, episodes of wheezing, etc. are likely caused by her aspirating during swallowing and her multiple clefts (laryngeal and sub mucous cleft palate).  Dr. Forno suspects that once her clefts are fixed, and her swallowing issues resolved, that we will see a reduction in her respiratory issues.  He also said that there may come a time when we don't need to even use a daily inhaler. It just depends in the effectiveness of the surgeries, how her muscle weakness improves/ progresses, and if there is another underlying cause for her coughing that we have not yet discovered at this point in time. 

We also discussed her multiple recurrent cases of Bronchiolitis.  After a close review of her chart, we determined that Elizabeth has had 11 documented cases of Bronchiolitis in her 18-months of life.  That is a significant number of cases. Dr. Forno said that he believes that the cause of these frequent episodes of Bronchiolitis is tied to her aspiration during swallowing. He said that it is likely that microscopic particles of liquid or food get into her bronchi and lungs due to the laryngeal clefts and other swallowing issues. These microscopic particles irritate the lining of the lungs and bronchi, which cause inflammation, which causes coughs and can cause infection.  This is why he hypothesizes that fixing the clefts will put her on the road to respiratory recovery.  

Then, Dr. Forno and his medical student gave us a plan to help Elizabeth breathe a little easier after her upcoming surgery.  The plan includes the liberal use of two different inhalers after surgery while she is in the hospital, and the addition of Albuterol every 4 hours for a TBD number of days once she returns home.  The use of the inhalers will ensure that her airways are kept open.  Dr. Forno is also recommending the use of a CPAP machine for Elizabeth after she is taken off of the ventilator after surgery.  Elizabeth is in a high risk category for a collapses lung due to her low muscle tone, frequent respiratory issues, and the type of surgery that she is having done in her throat and airway.  So, to ensure that her lungs are adequately inflating, and to prevent a collapses lung, they are planning to transition Elizabeth from the ventilator to a CPAP machine after surgery.  Dr. Forno said that he would write up the plan, send it to Dr. Jabbour and the anesthesiologist team.  That way they would all know about the plan and Dr. Forno's reasonings. I was relieved, and this plan will help Elizabeth and all of us breathe a little easier the day of her surgery.

This plan will likely prolong her hospital stay.  They will need to adequately wean Elizabeth off of the machines and monitor her breathing, which may mean that we will be there for 48-72 hours after her surgery.  I say, "we," because I will be staying down with her at CHP until she can come home. 

I am grateful that Pulmonology could see us before her surgery.  I am also grateful to have Dr. Forno on our team.  He is an excellent addition. We will be seeing Dr. Forno one month after her surgery to discuss continues care and to monitor her progress.