.......................

Well, the care that Malachi needs is certainly more than one person can do my themselves. Thankfully, there will be more than one person tending to Malachi's needs. On a regular basis, he will have three: myself, John, and an evening nurse. On top of that, he will also have therapists (speech, occupational, and physical) coming to the home as well. I really don't think in the current unit that he is in at the hospital, he is able to really get the attention (and most importantly, the LOVING CARE) that he will receive when we are all home as a family.

There have been some complaints that nursing staff just can't keep up with his secretions. John and I were both able to on our 8-hour shifts, and I was able to on my 24-hour shift. It just requires checking in on him more often than usual and taking the time to really suction while he is coughing it up. It takes that extra bit of care that John and I will put forth as his parents. Instead of just staying on top of it, they are asking us to restart the robinul. Frankly, I don't think more medication is the answer.

We are just ready to have him home so that he can be constantly supervised. He won't simply be dependent on an alarm going off, or time for meds, or time for food for someone to come in and check on him. Regular babies CRY OUT FOR ATTENTION when they are not happy. With the trach, Malachi cannot do that. So at times he is stuck with a dirty diaper or with spit up all over himself until someone comes to his rescue. Now, I know that we won't be perfect caregivers, but we KNOW that God has instilled in us the love and motivation that Malachi requires for the ability to thrive.

Even with his crazy episodes of SVT-like beats and other arrhythmias yesterday, the plan is still for him to come home on MONDAY. He is fighting an ear infection at this point. The echo that was done yesterday did reveal some narrowing of his sano shunt (which was placed at the time of his open heart surgery). The theory is that he is again not receiving as much blood flow as he needs from his heart to his lungs and back again. They are hoping by increasing his sildenafil, that this will improve. If the two main heart meds that he is on (atenolol and digoxin) are unable to adequately control his heart rates and rhythms, then really our only option is to consider riskier heart meds or a surgical repair quicker than anticipated. At this time, none of the cardiologists really want to even entertain those options because of how risky they are for Malachi. Please pray that his current meds can keep his heart under good (enough) control.

I will be taking Miss Emma up to the hospital with me in the morning. Hopefully Malachi will be feeling a little bit better and enjoy a visit from his big sis!