I shall not bore you with tons of details, I’ll just cut to the chase.
This “Care Conference” was an opportunity for John and I to discuss Mattie’s care, ask questions, and kind of get everyone on the same page. The Neonatologist, Nurse Practitioner, Cardiologist, Respiratory Therapist, ENT Specialist, Hospital Social Worker, PACT representative, and Mattie’s Primary nurse were all in this meeting. Kind of like the Knights of the Round Table, only not.
The Neonatologist started the meeting by giving an overview of Mattie’s care, diagnosis, medications, etc.
Then we took over. We went over each area of Mattie’s care: Cardio, Respiratory, Digestion Issues, Medication, Nursing Care, Changes in Mattie’s Care, Discharge Plan…. We asked specific questions, shared our concerns, asked for some changes, and so forth. I feel like we were really prepared going into the meeting, which in turn helped us come out of the meeting feeling like we were heard and respected as Mattie’s parents. Not that I’m looking for a pat on the back, but they actually told us we communicated really well, and handled ourselves beautifully. The bottom line is, we’re all on the same team, and we wanted to feel like part of that team. I feel like we are now on multiple levels.
For those of you who eat this kind of thing up, here’s the run down:
1. Cardio: Mattie has a balanced AV canal defect, but his heart and its valves are functioning pretty well considering, and they will hold off on surgery until it is absolutely needed, possibly even until he is 6 months old. He is on Lasix for his heart, and his Digoxin level is a 1- which is good.
2. Respiratory: Mattie has Reactive Airway Disease (known as Asthma in big kids), his airway easily closes up under stress: bowel movements, reflux, a cold, unconsolable crying. He is now under a “rescue treatment” regime of multiple inhalants via nebulizer, as well as a steroid for the next 5 days. The thought is that he will need a maintenance level of some of these medications even when home, but not every 2 hours like they are at the moment! Mattie also has laryngomalacia, and mild brochomalacia and tracheomalacia (all of which he will outgrow with age and increase in muscle tone).
3. Digestion: Mattie is now on reflux medication. Even though the fundoplycation was supposed to have eliminated reflux, it appears that he is still aspirating some. He is now on an anti-naseau medication that may also help as some of his spells have caused him to have fits of dry-heaving. They may consider a swallow study at some point, but he is too young now and the risks are too great for further complications with his respiratory issues.
4. Discharge: in order to be discharged, Mattie much have a lower oxygen requirement, be stable with his medications, and be weaned down considerably from his current need for inhalants.
5. Nursing Care: we requested an increase in the number of primary care nurses assigned to Mattie, so that there are consistent care givers who are well acquainted with his needs.
6. Changes in Medication/Treatment: we requested that no further adjustments be made to any of Mattie’s medications without informing us first and fully explaining the reasoning.
Thanks for your continued prayers.