Monday, April 29, 2013

Take Home Tests

Day 8

Our turn for the better yesterday continued today. Landon was stable again, showing signs of improved sucking skills (hurray!) and his case manager is confident that his management protocol will control his seizures for an extended time. In fact, the neonatologists in the NICU have suggested that we bring him home Wednesday afternoon instead of Thursday! Our nurses emphasized how complimentary this suggestion is of Karen and myself. Even though Landon's condition requires close supervision and the ability to intervene in an emergency, they are confident that we can handle whatever may arise. We are definitely excited to finally have a more normal life but there are a few hurdles yet to cross before we can put him in his own crib.

A representative from a medical supply company came today and trained us with the at home apnea monitor we will be leaving the hospital with. The device is relatively simple. A soft cotton band wraps around Landon's chest with two small sensors on the inside. The band is connected by two wires to the monitor which will keep track of his respiratory rate and heart rate. A loud alarm will go off if Landon's heart rate goes over 230, under 80, or if his breathing stops for 20 seconds. While we don't anticipate these scenarios coming to pass, it is reassuring to know that we will be warned before anything more serious happens.

In case of the worst, we are being trained in infant CPR on Wednesday morning. Obviously this is a skill we hope we will never have to use but I'm sure both of us will be more comfortable having the knowledge. To be honest, the nurses' insistence on practicing for an emergency can be frightening sometimes. I know that practicing is the best way to develop muscle memory and keep calm in a critical situation but the fact that there is a very real risk that I will use these skills is stressful to know in the back of my mind.



 Goat is going through his carseat tests overnight tonight. In order for him to go home in a carseat, the NICU requires him to sit in his seat for at least 90 minutes and show the ability to maintain his airway during that time. If he is unable to pass this test, we will have to take him home in a carbed and will be much more limited in our ability to take him out of the house once he is back to Manhattan.   He seems to do best while he is sitting up so we are optimistic that he will pass his testing but I suppose we will just have to wait until tomorrow morning to find out. That would be a nice feather to add to Landon's cap and would be another step toward having a little more conventional infancy.

Today we found out that Landon qualifies for KanCare, a program related to medicaid, after we max out the coverages of both Karen and my own insurance policies. It is an incredible relief to know that some of his expenses will be covered even after we reach his 1 million lifetime limit. I know that finances should be of no concern but it is easy to let those kinds of worries creep into your mind. The strength of our relationship and our faith has buoyed our spirits against these difficult eventualities and we have confidence that when the time comes to handle our finances, we will manage.

In the interest of desperately needed study time, I've kept tonight's blog a bit brief. I've been told that the messages here have been uplifting to some and at least informative otherwise and I'm thankful for those sentiments. My small spark of inspiration came today while changing Landon's (very full) diaper. I realized I was standing there wiping a dirty butt and weighing a stinky diaper with the biggest grin on my face, just loving every second of it. Everything we get to do in this life is temporary and someday I won't get the chance to change Little Goat's drawers anymore. I think enjoying all the dirty, stinky moments life throws at us is a key part of living a contented life.

God bless and stay positive!

4 comments:

  1. What great news, and I love the positive spin on Landon's stinkies!

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. I love your positive outlook. Be happy and enjoy your son!

    ReplyDelete