Wednesday, September 16, 2009

Life at Our Children's House at Baylor

Well, we've now been at OCH for 3 and a half weeks. I waited until today to post a new note because we had our Family Care Conference yesterday, and I thought we might get a discharge date. I was wrong.
Quite a bit has happened in the last 2 weeks. First, an update on Luke's health. Early last week David and I started worrying because Luke was requiring more and more oxygen to keep his oxygen saturation ("sats" for short) at an acceptable level. He would alarm multiple times in the night and throughout the day, telling us he needed more oxygen. The pulminologist, Dr. Gelfand decided that his lungs or airways were not causing the problem, and was concerned that Luke might be outgrowing his shunt. (The BT shunt was placed during Luke's heart surgery in June. It is expected that Luke will outgrow the shunt, but we are hoping to hold out until March when Luke will get his next surgery.) I was worried that we would have to do Luke's second heart surgery earlier than expected, and before we even get to take him home for the first time. Dr. Gelfand decided that he wanted an echocardiogram ("echo" for short) done on Luke as soon as possible, but it was the middle of the night, and there are no cardiologists at Baylor to read it at 1:00am. So he called Dr. Chemelli, one of the cardiac intensivists at Medical City who worked closely with us and Luke, to see if they could do an echo there. Dr. Chemelli thought that Luke's oxygen problem could be solved by giving him a blood transfusion. Only 4 air molecules can attach to a red blood cell, so no matter how much oxygen you give Luke, if he's low on blood, he has no way to transport the oxygen to the rest of his body. Luke is just now approaching the age where he can manufacture his own blood (a process probably delayed by his earlier blood transfusions), and they hadn't replaced any of the blood they take when they do blood tests. So we gave Luke a blood transfusion the next morning and viola! his sats went up. Praise God for intelligent and intuitive doctors. We got an echo, just in case, and the echo showed that Luke's heart is working well, and he's not outgrowing his shunt yet.
Second, Luke got a brain MRI on Friday. The neurologist here at Baylor ordered the test because she knew that Luke had a head bleed and seizure activity after being on the heart lung machine after his surgery. Luke does have some brain damage from that trauma that showed up on the MRI, but the doctor explained that he is not showing any outward signs of damage. He said that babies typically manifest signs of this type of damage between 4-6 months. Since Luke is just now 4 months old, we will watch his development closely to make sure he doesn't have any problems, and they will follow up later. David and I feel a little scared because the type of brain damage Luke has, if substantial, can be linked to Cerebral Palsy. Folks, we can't take another hit. We can't do Cerebral Palsy. It looks like Luke's brain is fine, but please pray that he can develop normally in the areas of his motor skills and intelligence.
So the big question, when are we going home? 3 requirements: 1) Luke has to grow an average of 0.7 to 1 oz per day. He now weighs a whopping 10 lbs. 15 oz! He is meeting this requirement. 2) David and I have to complete Baylor's entire training program. We've worked hard, and have completed all of our classes. The only requirement we have left for this portion is our "rooming in". David has to complete one, and I have to complete two 24-hour periods where we stay with Luke and care for him around the clock: give him his breathing treatments, medications, feeds, trach care, and regular baby stuff like diaper changes and baths. David does his rooming in tomorrow, and my first one is scheduled for Sunday. Pray that we do everything well enough to be "checked" off. I can't do my second rooming in until we get our home medical equipment delivered, see #3. 3) We've made some headway on convincing UniCare that they need to pay for the 30 day gap in Luke's home health care that MDCP (medicaid) won't pay for. But UniCare wants to be certain that we've secured MDCP, and that they will pick up the cost after the initial 30 day gap. We've turned in our application and had our interview for MDCP, and we've been told by our social worker that we definitely will qualify and be accepted to the program, we just don't know how long it will take to get the official approval. Until we do, we're stuck here. Could be days. Could be weeks. Lord, please help us, it might even could take months. Folks, Luke's Mama cannot do this for months. Sometimes, I don't even think I can be here another hour. But Christ sustains me. He is my portion and rock. We can't get out of here until he works it out. Please pray that he works it out quickly. I'm literally at the end of my rope.
Baylor's not been all bad though. I realized today that since I'm staying up here with Luke at the hospital, he is my focus nearly all the time. Luke doesn't have to compete with laundry, dishes, vacuuming, or cooking for my time. Today I spent a solid hour playing with him, singing, and reading to him. I'd probably do those things with him if we were home, but would I really devote such undivided time and energy to him? It was such a sweet time today to see him smile and enjoy my attention. Sometimes God gives you a refreshing rain cloud in the middle of a drought (for those of you not from New Mexico - switch that: God gives us a patch of blue sky during the rain).
Keep praying for us everyone. We've come SO FAR. But we're not home yet. It's easy for us to get angry and to start despairing because so many are holding us back from taking our precious son home. We need your prayers. For those of you who have visited us, we really appreciate it. Baylor is a lonely place. You raise our spirits. Thanks for your prayers. Maybe in the next note, I'll get to announce that we're going home. Please God.

Rachael, David, and Luke

1 comment:

  1. Rachael, I will be praying for you all. I am excited for David to do his "rooming in" with sweet Luke. Praying for your time to room in and all the equipment needed. Thanks for keeping us posted. You can do all things through Christ who strengthen's you. We might not think we have one ounce of ability left, but the moment we take the step in faith to the next place we are called to is when God gives us that grace to get through. I have wished that I had that grace before I had to take the step, but then I would think it was me. Love to you all.
    When Jack was there a couple of years ago we made a good friend in his speech pathologist, Patti Wren. She is an amazing Christian woman, we lost touch after the first year or so, but now we are facebook friends so it has been nice to see her posts.
    I can remember when I was at OCH and how much despair I felt there also. I don't know why it was so different than the hospital, but it was. You sweet sister will be home in time, God's time, no one can keep that from happening. Trust in Him, give up any illusion of control, just hold on tight to Him and enjoy your sweet baby.