Monday, August 31, 2009

Baylor: Our New Home Away from Home...Like It or Not

Well, here we are at Our Children's House at Baylor (still in Dallas). We transferred on Monday, and it was a very difficult day for our family. David had bronchitis, and so couldn't be around Luke and risk him getting sick. Rather than move him by myself, Patty Wallace, a friend from church came and helped me move all of Luke's stuff (you accumulate A LOT of stuff during a 15 week stay!). Patty was indispensable to me Monday. She preceded Luke and me to Baylor. I stayed with Luke the entire time and rode along in the ambulance with him. Luke did fantastic on the trip over. As long as he had his pacifier in his mouth, he stayed calm and took in the surroundings. It was his first time to ever be outside, and I'm not sure he thought too much about the bright sun and the TX heat. When we got up to his new room, he was doing fantastic. He didn't even require any extra oxygen above room air.
The differences between Baylor and Medical City Congenital Heart Surgery Unit are countless. First, Luke shares a room with another baby. We share a bathroom with another two-patient room. We have a LOT less privacy than we did on CHSU. Second, in ICU, Luke either had a nurse to himself or he shared a nurse with one other patient. Here at Baylor, there's a nurse for every four patients. We maybe see our nurse once every hour or two. After getting so much attention and having help only ten feet away at all times, moving to Baylor is a huge adjustment. Third, the nurses seem to do quite a bit less here than at Medical City. They give meds and start feeds, but little else, as far as I can tell. The RTs (Respiratory Therapists) do everything that has to to do with Luke's trach or ventilator. The techs change diapers, give baths, change bedding, etc. It's been an adjustment to figure out who's job it is do something when we used to just get our nurse for everything. Having so much less attention means that I don't feel comfortable leaving Luke for more than a minute or two, even if I let the staff know that I'm stepping away. It's been an adjustment to spend the night by Luke's bedside. One of us is with him around the clock. I was with him Monday, Wednesday, and Thursday night, David stayed with him Tuesday, and my parents came and stayed with him Friday and Saturday night to give David and I some time together.
I cried the first night because everything was so different. Our nurse on Luke's first day here was a little abrasive, and first impressions take a lot to overcome. Gradually over this week though, I have come to realize that my attitude had a lot to do with how miserable I felt. I started being appreciative of the nurses, techs, and RTs, and telling them so. I told myself to smile -- It's not anyone's fault at Baylor that we were told we wouldn't have to come here and then had to anyway. It's not their fault we were expecting to have taken Luke home over two weeks ago, but we're looking at another several weeks in the hospital instead.
Some good things have come from being at Baylor, just in this week. Like I said, we have been used to a lot more attention, but we now do so much more for Luke. We used to have to get permission from the nurses to hold him, change him, or suction out his trach. Now we just do those things and holler if we need help. I felt a tremendous sense of accomplishment when I bathed Luke and changed his entire bed by myself the second night. I love being able to suction him when he needs it without having to wait for supervision. I love that the tech came in our room in the middle of the night to ask if she could change his diaper, and I got to tell her no thank you because he's sleeping right now. We feel empowered, and much closer to our son. Luke is spending much more time awake, and we enjoy playing with him so much. Luke is getting physical, speech, or occupational therapy every day. He's learning to sit up in a car (like) seat, rest on his tummy, and he's even getting some head control. I'm overjoyed that although he was having seizures three months ago, that he's awake, alert, and tracking age-appropriately. He still sleeps more than I think is normal, but he is a heart baby--they tend to need more rest. Another fun thing is that I've started putting Luke in clothes now. Before you would see Luke in just a diaper covered with a blanket or swaddled. That's because he used to have so many tubes and wires attached to him, clothes were really impractical. Now he is only attached to his ventilator, his feeding tube, and one sensor that tracks his oxygen saturation and heart rate. He looks absolutely darling in clothes. David and I are happy that we're starting to experience the joys (and challenges) of semi-normal parenthood.
So now the question I know you all are asking: How long will we be here? That's really ambiguous at this point. We are required to complete 6 trach changes on Luke and room in with him (doing everything for him) for 3 - 24 hour periods (I take two of them and Dave takes one). We've completed 2 changes already, and have the next 3 scheduled to take place this week. We have all of our other training classes scheduled for this week as well, except for our CPR (yes, we already took CPR at Medical City, but we have to complete it again at Baylor. Yes, that's frustrating, but we're just going to do it). So, we should be able to complete all of our training by the middle of next week, then we have to do our rooming in. I wish that was all of it.
We are in a mess with our insurance. Right now Luke is triply insured. However, David's health insurance does not cover home medical care--not home nursing or home medical equipment. Luke needs both. My insurance is expiring Sept 28, which is right about the time we're hoping to go home. Luke also has medicaid due to his heart condition, but it is the type that is re-evaluated once we leave the hospital and then becomes based upon our income. We won't qualify because David makes too much money. Luke's doctor will not release us until we have found coverage for Luke's home health care. So where does that leave us? There are programs called the Medically Dependent Child Program (MDCP) and Money Follows the Person (MFP) program, which are basically back doors to Medicaid. We are working on getting benefits through these programs, but as with anything in the government, it takes more time than we want it to. One thing about these programs is even if and when we get approved for them, they will not start covering Luke's home medical expenses until 30 days after Luke goes home. So who pays for those 30 days? Luke's Baylor team and the home nursing and home medical equipment companies have to go to battle to convince David's insurance company that it would be cheaper for them to pay for Luke's home medical expenses than it would be for them to continue to pay for Luke to stay in the hospital. This is a long and extremely frustrating process. We finished the MDCP application Friday, but I have no idea if it's in the hands of anyone who can do something about it yet. Our home nursing company has already started battling with UniCare, but we'll know a little better what's going on with that Monday.
Tuesday we have our first Family Care Conference. We will have a lot better idea of a discharge date when we have Luke's entire team of doctors, coordinators, educators, and social workers there to ask questions and coordinate a game plan.
We would be very grateful if you would pray that God goes before us through this mess of insurance companies and government programs. We need help navigating through this, and we need God's help making this process go miraculously fast. We also need your prayers that Luke avoids getting any more infections or getting any new problems as long as we are forced to stay in the hospital. Luke is doing really well physically, we just need to keep him that way.
Thanks for all of your prayers. We love you,
Rachael, David, and Luke


  1. May the Lord bless and keep you through all of this. I had a baby with a congenital heart defect. She was in and out of the hospital every few months untill she was 4 1/2 when she had surgery and is now a healthy 26 year old young woman.

    God is good and faithful and He will get you all through all of this.

    I am only posting anonymously because I don't know how to do any of the other things.

    God Bless

  2. Precious little Luke! Love his smiling picture! I know you are anxious to go home. We will pray that you get through all the paperwork quickly. Hang in there! We love you, Howard & Jacki

  3. Sorry you're stuck in a catch22 with the insurance situation. We're praying and God is already working it out! And so glad you're enjoying being Luke's #1 care giver. He has one special mom!


  4. I pray for precious Luke's health and your strength daily. Stay strong.