Monday, March 2, 2009


Deedee has been with too many secretions on the lungs, which has been causing trouble in terms of desaturation and high heart rate. Her numbers drop suddenly, then hover in the 80s for too long. This has been the pattern almost during every treatment session. Maybe the mix of albuterol/mucomyst is not the best for her... She has been receiving nebulizer treatmens of albuterol and Mucomyst with no success. It has been noticed her heart rate gets very high during/after nebulizers so we think it is obvious that the albuterol is affecting heart rate... but the desats are the big puzzle. She will start taking Pulmocort to see if that goes better.

The doctor is talking about doing a bronchoscopy by Wednesday if things don't get better to take a look inside the lungs and see what is going on. Xrays have shown she is worst than in the weekend, but the source is so far unknown. She has collapse in her lower left lung, and the right side looked junky. Deedee has been taking her respiratory theraphy religiously every 4 hours, but things have not improved. This is bad. We need to find the source of the problem and fight it. She has been enduring everything so far, keeping her spirits up, so at least we know she is not giving up. The pulmonologist asked the PICU doctor to give Deedee time, to try avoiding doing the broncoscopy, and give her time to react to the Pulmocort. We'll see what happens.

Main problem with the bronchoscopy is that she must be sedated. After the procedure she must wake up between 2-12 hours later. If not, she will have to be intubated again. During this hospital stay the hospital staff has been great with us, but Deedee has been very variable/ non stable.

Please pray for Deedee. She needs all the positive vibes and wishes that you can give, so God sheds some light on the doctors minds. We put our complete trust and faith in Him. He is the one who truly knows what is wrong and how to fix it.


Some definitions, FYI:

Mucomyst: This medication, when inhaled by mouth, works in the lung to thin mucous, making breathing easier. It is used to treat thick mucous secretions in chronic emphysema, bronchitis, pneumonia, cystic fibrosis and other related conditions.

Bronchoscopy: A procedure during which an examiner uses a viewing tube to evaluate a patient's lung and airways including the voice box and vocal cord, trachea, and many branches of bronchi. Bronchoscopy is usually performed by a pulmonologist or a thoracic surgeon. Although a bronchoscope does not allow for direct viewing and inspection of the lung tissue itself, samples of the lung tissue can be biopsied through the bronchoscope for examination in the laboratory. Rigid bronchoscopy requires general anesthesia and the services of an anesthesiologist. During the bronchoscopy, the examiner can see the tissues of the airways either directly by looking through the instrument or by viewing on a TV monitor.Complications of bronchoscopy are relatively rare and most often minor. It is important to realize that all procedures may involve risk or complications from both known and unforeseen causes, because individual patients vary in their anatomy and response to medications. Therefore, there is no guarantee that a procedure can be free of complications. The following is a list of potential complications: Nose bleeding (epistaxis), Vocal cord injury, Irregular heart beats, Lack of oxygen to the body's tissues, Heart injury due to medications or lack of oxygen, Bleeding from the site of biopsy, Punctured lung (pneumothorax), Damage to teeth (from rigid bronchoscopy), Complications from pre-medications or general anesthesia.


Spinal Muscular Atrophy - Shira Fisher said...

Have they tested for RSV and pseudomonas etc.? I'm sure they have but just checking. I"m sorry to hear this Vivian!!! There is a lot of illness going around and like regular kids its not uncommon for SMA kids to get sick several times a year also its just that it can be so hard on them. Be strong and know we are thinking of you and Mark!! Brad

Maria said...

Bummer that DeeDee and family have not being able to get home and rest for hours on end. Best wishes always!