Our first 2 nights and full day home have been quite uneventful. A rainy fall Saturday easily leant itself to a day inside watching movies, playing with every toy Jonah owns, and taking a few naps. Really, for me, it seems the exhaustion has truly set in. In the hospital I got enough sleep to get by but the days were always full of ups & downs, changes here & there...I always had to have my head in the game. Yesterday in the comfort of our own home I finally felt like I could breath easier, let my guard down, and let go. Actually, this is true for all three of us!
Jonah woke up twice the first night home. After a diaper change and something to drink we all went back to sleep pretty quickly. Last night he slept through the night and woke up in a much more pleasant mood.
The medication schedule for Jonah is the heaviest in the morning and evening as most of them are once or twice a day right now. Going forward I will try to crush any pills the night before to cut down on the prep time in the morning and lessen the anxious cry for something to drink as Jonah waits for everything to get ready. So far he's been really good with his new regimen, as in no puking and not fighting too bad. As soon as we cut back on some of his electrolyte supplements the total # of meds should be more manageable.
Oxygen at home has been going alright. Jonah is very active and can easily get up & quickly take off in one direction while we try to react fast enough to bring his O2 tank along. He is very good about keeping the cannula in his nose and doesn't seem to mind the tubing trailing behind him, that is not the hard part. Keeping up with him has been a two person job for sure so it will be interesting when Rob goes back to work this week.
We gave Jonah a real bath for the first time in practically two weeks. We washed him up in the hospital but it's not the same. We were able to get all the adhesive off his body, cleaned up the "gunshot wounds" that are his chest tube sites, trimmed his nails and washed his hair (thank goodness we cut that mop before we went in!)
Jonah goes back on Tuesday for a full days appointment including a chest X-ray, blood work, and a full exam by the surgical nurses. Please please pray that Jonah's lungs continue to be free of fluid and that we may discontinue the oxygen during the day!! We know that each and every one of your prayers have been heard and that He has answered back in His own way, in His own time. God Is With Us! God Is Able! We have been abundantly blessed and know our Lord will continue to strengthen us!
Jonah's "coffee"...milk in a Caribou cup...