Many of you have been asking me to post a note, and I'm sorry I haven't until now. Life, as you can probably imagine has changed so much. I'm busier than I've ever been in my life (including grad school), and honestly more wiped out than I've ever been in my life (including post c-section with a baby in NICU), so finding time to write a blog post has not been on the top priority list of things to do.
The last note I wrote was the night before we left Baylor and came home. What a crazy night that was. It was so much like a bizarre dream, I'm not sure it really happened. Our home health nurse (who turned out to be our favorite one!) met us at the hospital. At 8:15 the EMTs showed up and we processed Luke the heck out of there. David drove his car behind me and Luke in the ambulance with the nurse following him. We drove 2 1/2 hours to Tyler to a little nursing home (passing right through Terrell). We got there about 10:45. We stayed there just long enough to give Luke a breathing treatment and get his feed started, then left, putting Luke and all his accessories in the car the first time. It took us 25 minutes from the door of the nursing home to pulling out of the parking lot. We've since got it down to 10 minutes. We arrived at home with Luke at about 1:45 in the morning, greeted by my parents, some very confused kitty cats, and a big sign in the front yard that said "It's a Boy!" (so fun!). We put Luke down and got him situated, and finally tumbled into bed about 4:00 am. The next day was not much less chaotic. We met a new day nurse, made a zillion phone calls and received the rest of Luke's at home health equipment and supplies.
So, flash forward 4 1/2 weeks, we've adjusted pretty well to life here at home. We've pretty well worked out the nursing situation. We have our favorite night nurse four nights a week, a pretty good nurse two nights a week, and a different one every Friday night. We have a great day nurse five days a week, no nursing on Saturday (daytime) and a different one every Sunday. Since the second week, we haven't had 24 hour nursing, but it averages out to about 20 hours a day. We chose Saturdays to not have any nursing, since David's home all day. Saturdays are great having it just be our little family together. Our nurses are very nice and quite helpful (usually), but it's amazing how much more relaxed we can be when it's just us. Saturdays are the best. It's tough having a relative stranger (and at times a perfect stranger) in your house almost all the time. We haven't seen a lot of the judging or "policing" from our nurses (though I have felt some), but it still puts you on edge to have someone looking over your shoulder all of the time. We can't get rid of it though. Taking care of Luke is a full time job, and I would never leave his bedroom if we didn't have a nurse around.
So how's Luke doing? He's doing great. We have at least one doctor's appointment every week (so far since we've come home). Luke is doing a great job growing and developing his lungs and airways. Because he is exceeding the docs' and nutritionist's expectation of growth since he's been home (exceeding the goal by an average of 1 gram per day), that means his airways are getting stronger and he's almost ready to graduate off of the ventilator. They can't just take him off cold turkey since he's used it all of his life, so we have to increase his trach collar trials (time off the vent) gradually. The pulmonologist decided that we will lengthen his trials by one hour each week meaning this week he is off of the vent for two hours twice a day (total of four hours a day), and next week he'll be off for three hours twice a day (total of six hours), etc. This is GREAT news for us, because by next month he should just need the ventilator at night, making him a WHOLE lot more mobile. At this rate, he'll be off the vent soon after Christmas, and maybe lose the trach (called decanulation) by spring or summer (just in time for Tia Hannah's wedding). That's all, of course, hope and conjecture. We'll see what really happens.
Also because he has done such a great job of growing and getting stronger, it may be that he is beginning to outgrow his shunt that Dr. Mendeloff placed in his June heart surgery. Infants are normally ready for the next surgery in this series (they outgrow the shut and need a different means of getting blood to the lungs) between 4-8 months. I think we were thinking we might be able to get away with putting off surgery until March (after flu and RSV season) because he was having such a hard time growing for awhile. Luke will be 6 months on Nov. 11, which officially puts us between 4 and 8 months. He should be outgrowing his shunt sometime soon, and starting yesterday we've begun seeing signs that this might be happening. Dr. Kao told us to look for his O2 saturations to be chronically in the 60%s, and the last two days Luke's spent most of his time in the 60s and next to no time above 75%. We're going to call Kao tomorrow to see what she thinks and maybe get an echo done on Luke's heart. Since we can't manage Luke's saturations by any pulmonary means (like breathing treatments, raising his oxygen, etc), I suspect that the saturation levels have to do with his heart and not his lungs. So he either needs blood to replace what they took on Wednesday and Thursday for tests (which is also a problem because it means he hasn't started manufacturing his own blood) or he's outgrowing his shunt. We're not doctors, and we don't know for sure, there could be something else going on that we don't know about, but it sounds reasonable to me.
David and I have been doing pretty well. Life doesn't stop because you bring a baby home. My practice has grown fast. I've been seeing 7-10 clients a week, which was my goal before Luke was born. David's been busy working, so it's been a challenge to balance our time at work, time with Luke, and time with each other (welcome to parenthood right?). It's been a big struggle for me because Luke is quite immobile. Even moving him into the living room is a major production. I don't get out of the house hardly at all unless it's to see clients or take Luke to the doctor. I've missed being connected to the outside world and doing normal things like going to the grocery store, seeing friends, and going to church. When I do leave the house, or even leave his bedside, I feel guilty for abandoning him, even though my therapist brain tells me that's silly. I've decided to go see a counselor this week to see if she can give me some suggestions for coping with all of this. It's a little embarrassing for a therapist to go see a therapist, but there it is. I can admit when I need some help.
So mainly, thank you all for your prayers. They are responsible for getting Luke home where we can enjoy all the new smiles, growth spurts, and milestones in familiar surroundings. But we also still need your prayers. We need to be covered in prayer so that our family and our marriage stays strong. We need prayers so we can cope with adjusting to home life and to gear up for surgery number 2. We need you to pray that God's timing will be perfect on his next surgery, and that we don't have the troubles that we had during his first one. Thanks for your continued prayers and support. We love and appreciate you all.
Blessings,
Rachael, David, & Luke
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