Ian had a so-so day today. It was very much like yesterday, only with some better management. The pulmonologist was not thrilled with his oxygen saturation levels, but they were acceptable. Ian remained on 4 liters of oxygen per minute until late this afternoon. The pulmonologist was happy enough with the treat,nets he had been receiving to lower the rate to 3 liters.
Ian has been receiving breathing treatments in the form of racemic epinephrine nebs, hypertonic saline nebs, and easy-pap device, and supplemental oxygen. He has started to leave the nasal oxygen cannula alone, with the exception of when people move it around or reposition it. Most of the time, it remains in the right spot.
Every 4 hours, the respiratory therapist comes in for about 20-30 minutes. The epi nebs come first and take about 10 minutes or so. Ian is used to the make at home, but is much more scared and sad here, understandably. Then, they use the easy-pap. It is a breathing device that looks like a spacer for inhalers. In a few sets of about a minute or so, he breathes with the device, which creates positive pressure to help inflate the collapsed parts of his lungs. After both treatments, they listen to his lungs again, and suction his nose with the most powerful "boogie-sucker" in the entire world! I would actually love having one of these at home..... Of course, Ian hates this as well. But it removes a tremendous amount of junk.
After that, he sounds much better. The "snarffy" noises are gone and he breathes deeper. Then they do the hypertonic saline nebulizer medication. This medication has a high salt concentration to help reduce the viscosity or thickness of secretions. It helps them move secretions better in order to help break them apart. It is then easier to expectorate them and increases breathing efficacy.
Hypertonic solutions are ones with higher salt concentrations within the cell. When immersed in an isotonic (equal) solutions, such as body fluids for the most part, water from the isotonic cells rushes into the hypertonic cells in an effort to balance the equilibrium. The hypertonic solution breaks up what are called disulfide bonds in the mucus...... Loosening the mucus as a result.
Ian's blood oxygen levels are much better after that, and he is more comfortable. These are ordered every 4 hours..... After about 3, he starts picking up a little trouble. The treatments make him cough because of the sensations they create by the anatomy changes in his lungs and trachea. They are not "made" to make him cough, but do as a side effect. When he coughs, it is much wetter and his is able to move secretions around much better.
Ian does not spit these out for probably various reasons...... He is 2, with oral aversions, and previous reflux..... So he fights it. He swallows most of them, creating a fairly gross mucusy stool. Not much fun either. He has not shown much change in activity level or energy today. He has little interest in getting down off the bed and seems pretty weak. He likes watching his videos, coloring, reading books, playing with his toys....... And most of all, snuggling!
Now that he is sleeping, the oxygen levels are going down again. It is unsure at this point if he will need to go up on the oxygen levels again. We heard day 4 is usually the worst, and that is most likely tomorrow based on his time frame of symptoms. Tomorrow is another day.... And things change by the hour it seems sometimes. We are continuing to keep good thoughts of our little fighter who is so much braver than I could ever dream. We are so proud of him!