Vacation/Echo Results/Ear Infections


Since the boys have Spring Break this coming week we will be going to our hometown, Denison to visit friends and family. It is always fun to get away from the house and visit family, but it can also be stressful at the same time because I am always so fearful of leaving something needed for John. I have a checklist I go through every time we leave. I double and triple check it. Then I have someone check it for me just to make sure that I am not missing anything.

List of Items I need every time:

  • Ventilator/Ventilator Stand
  • Oxygen Concentrator
  • G-Pump
  • Portable Suctioner
  • Pulse Ox
  • Pulse Ox Sensors
  • G-Bags
  • G-Connectors
  • Trach ties
  • HMEs
  • Formula
  • Gauze
  • Medications
  • Syringes
  • Extra G-button
  • Oxygen Tanks
  • Emergency Kit
  • Chargers for all of his equipment
  • Extra tubing for Ventilator
  • Trach Cleaning Kits
  • Distilled Water

That is just his equipment/supplies needs. It doesn’t include his normal baby/toddler items like diapers, wipes, clothes, etc… I love my son just sometimes less equipment would be better.

In other news, we received the results from John’s Echo. Mild to moderate increased left ventricle muscle trabeculations without non-compaction. Which in English means that the left side of his heart has more muscle than should be. However there is no evidence of having hypertension of his right side of the heart or the reason for his lung issues. This does mean we still have to keep an eye on it and make sure it does not become an issue later in life.

Joseph started to complain of ear pain yesterday while at school. He had an appointment this morning. He has a ear infection in both ears with his left ear drum busted. 🙁 Poor baby didn’t sleep very well last night. Nor did Thomas or I.

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