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

Thursday

It's amazing what an attitude change can do to change your situation. I thank God for kind people, who, contrary to popular belief, are NOT JUST at Medical City. I'm confident that although this setback is discouraging, we will get through this and take our baby boy home.

Tuesday

Never thought she wish she was BACK at Medical City. We sure got spoiled in PICU, and we dearly miss all of our friends there! Baylor's way different. Not sure I like it here.

Thursday

just held my baby!

There's a Light at the End of this Tunnel

It's been over two weeks since Luke's trach surgery. We praise God because Luke is doing fantastically. His trach site (stoma) is healing. He's finished fighting off the last infection. David and I are gaining solid confidence in our skill to care for him and his special needs once we get him home. It is such a relief to not have to help Luke fight for his life. It's nice to come ot the hospital and hang out with him, play with him, and care for him without having sever anxiety for what the next few hours might hold.

Our frustration over the weekend is specifically due to the hospital's plans for discharging Luke. just before Luke got his trach surgery, it was communicated to us that if Luke did well and had no complications with his surgery, and if David and I could learn all of the necessary skills and could demonstrate our competence, then the intensivists (doctors) could decide not to send us to Baylor. Our understanding was that id we had to go to Baylor it would be because the docs weren't comfortable with our skill level, and our time there would be much abbreviated from the usual learning program because we had already learned the skills.

At the beginning of last week, Dr. Meyer decided that it might be possible for Luke to go home with only his trach and without his ventilator. As a result, they delayed ordering our vent and trach supplies to see if we could wean him off the ventilator. We gladly agreed to staying another week or so in the hospital to see if we could go home without a vent. As the week went on, it became evident that Luke was not making progress on the weaning process. We resigned ourselves to following the original plan of taking Luke home from Medical City (MC) as soon as he was adjusted to his home vent. Then we got the bad news: We are definately going to have to go to Baylor because the Respiratory Therapists here at MC can't teach us all we need to know about Luke's vent. The bad news kept coming: since we were entering Baylor, we would have to go through their entire educatio program for not just the vent, but the trach as well. So it effectively doubled the amount of hoops we have to jump through to get Luke home. Information came in pieces and was inconsistent. We would only need to stay a few days while David and I took turns staying with him for 24 hour periods and demonstrated we could care for him alone if we had to...we would have to stay the entire 6 weeks to go through the program as normal participants...we would have to complete 6 trach changes, but we might be able to do them more frequently than once per week...It was a yo yo. I believe David and I have been quite flexible throughout Luke's 14 week hospital stay (so far), but we've fairly reached the end of our flexability and patience. We could not understand why all of the stakk involved in making this decision could not get together and come up with a solid plan for transferring to Baylor. It was extremely frustrating.

Yesterday afternoon we had a Family Care Conference. We had the attending intensivist, the nurse practitioner, the nurse supervisor, Dr. Kao, and the coordinator from Baylor present. I said very little during the meeting (David's much better at putting forward a solid argument; I was too emotional to say anything intelligable). David stated our frustrations. We were met with some defensiveness, but we got to say what we needed to. Most helpful was our discussion with Rocky from Baylor about what we could expect at Baylor. She told us that there would be no fudging on the 6 trach changes, and the Respiratory Thereapist there is not willing to change a trach more than twice in a week. So we're expecting a three week stay at Baylore. We might could get our pulmonologist to pull some strings once we get there, but we have yet to create a relationship with him, so we'll see.

Baylor's going to be very different. Luke will have to share a room, and visiting hours end at 8 unless you're spending the night. We'll have to change the routine we've been establishing for 14 weeks. It also sounds like we will be required to have 24 hour at home nursing care when we finally get home for at least a month-maybe as long as Luke's on a vent. I was expecting we would need at home nursing, maybe even 24 hours for the first couple of days to make sure that we were confident with everything at home and to get any questions answered that might come up. But I feel really nervous and invaded upon to have a stranger in my house around the clock every day. I'm not a super private person, but I definatelyneed more privacy than that. David and I have some investigating on this point that we need to do, but we might have to accidentally dismiss our nurse after awhile. We haven't figured out how it will work when we want to take Luke to our friends' houses or to church--Will the nurse go with us? Or will we be disallowed to take him out of the house? If that's the case, this really is a prison sentence, and now we have a jailer. I know I shouldn't see it like that. I need to be glad for the medical care and support that we will recieve, but I have lots of anxiety about having someone watch every single move I make to care for my son. I'm truly afraid of being judged by this person every time I make a mistake. We could really use some prayers to help us get adjusted to this new way of life up ahead.

We just got word that Luke won't be going anywhere this week. There are no beds at Baylor right now, so it will at least Monday before we get transferred over there. Please pray that we don't encounter anymore setbacks. Please pray that Luke stays at his current level of health and gets no more infections before we can get trransferred.

One last point. I got a healthy dose of perspective and attitude adjustment today. While David and I were indignant, feeling abused and neglected on Monday, two kids died on our unit, one of them because of heart issues. I feel ashamed that I've been complaining about a delay in taking Luke home (significant as it is) , while there are two families this week who are going home without their beloved babies. It makes me weep to think of how close we really were to losing Luke, and renew my thankfulness that Luke is still alive and growing stronger every day. God just shut my mouth. Who am I to allow myself to feel entitled to anything when life itself is never promised to us? Again I thank you all for the prayers you send up for Luke's life and health. Pleas pray for the families that lost children this week. I don't know their names.

So, there is light at the end of this tunnel. We can see it, and it grows closer all the time. By our estimates, we should be taking Luke home in 3-4 weeks! We appreciate your continued prayers as we finish up the first leg of this journey.

We pray that you are blessed as much as we have been blessed.

Rachael & David

Tuesday

Just changed Luke's trach for the first time. I was more scared than Luke. Luke did great. It went great. No problems whatsoever.

Info

Will cry and scream and yell if we have to spend 6 weeks at Baylor...

Will write a longer post to let everyone know what's going on just as soon as we know ourselves. :)

Monday

Monday

Doc changed the trach for us the first time; we'll do it next week. The change went very smoothly. Luke's done beautifully all day. He's spent quite a lot of time awake today and was happy about it. Luke finally remembered today what he's supposed to do with his pacifier, (progress!), AND I got to hold him for about an hour and a half! It felt soooo good.

Sweet Boy

Trach Bootcamp

I'm not going to lie and say I'm not disappointed. David and I (and I'm sure many of you) prayed and prayed that God would allow us to take Luke home without him needing a trach or a ventilator. Luke's been through so much already - we've been through so much already - can't we just go home and get on with life as normal until we re-enter the hospital when Luke is 9 months for his second surgery? Surely God has done much more miraculous works in Luke's short life than strengthening his airways. And wouldn't God's name be praised much more readily by the doctors if they were expecting Luke to need a trach and then miraculously didn't have to? Nonetheless, I prayed that God's purposes would be fulfilled in whatever happened with Luke's airways.
We waited for a week and a half. Instead of seeing what we hoped, Luke's airways getting stronger and a decreased need for a ventilator, something very different began to happen. David and I gradually became accustomed to the idea of caring for our son with a trach and a ventilator and a G-tube. We started worrying less about the trach and everything involved with it and anticipating with excitement the day that Luke gets to come home--whatever equipment is attached to him. I fought it. I told God that I didn't WANT to be okay with it, I wanted him to FIX it. I told him I'm too tired to do this too.
The doctors continued to tell us they were fully expecting that he would need a trach. They continued to tell us that the condition of his airways is not something that can be fixed in a few weeks with rest and good nutrition. I held faith. I always reminded myself that God is in charge, not the doctors, and God can fix his airways with rest and good nutrition if he wants to. Dr. Kao (our cardiologist) was the one who suggested that we wait two weeks and see if he could be successfully extibated and function without breathing support. Eventually the other doctors convinced her that we needn't wait that long, that nothing will significantly change during that time, so they planned to take him down to the OR Monday, Aug. 3. I knew that if God was going to miraculously fix his airways, that He could do it by Monday, he didn't need an extra 3 days.
Then Saturday rolled around. David and I were on the way to the hospital that morning when we got a call from the charge nurse. Luke had gotten a hold of his breathing tube and dislodged it. Thankfully, Dr. Mendeloff (our heart surgeon) and Dr. Tia (the cardiac intensivist on the floor that day) were right there. They made the decision that since the breathing tube was out, that they'd give Luke his extibation trial. He failed. He lasted a few minutes without the ventilator, but was simply working too hard. No two way about it, he can't breathe on his own yet. They decided that it would be too much stress on Luke's system to give him another extibation trial on Monday.
Monday afternoon they took him down to the OR. This being our 6th trip to the OR, it was much easier to kiss him goodbye. I think Luke is even getting used to going on field trips. Dr. Hermann (pediatric surgeon - doc who put in Luke's dialysis catheter and later took it out) put in a G-tube for Luke to receive feedings and also did a Nissen procedure, which basically created a valve between his esophagus and his stomach so he can eat (eventually) and things can go in to his stomach, but it greatly reduces the risk of reflux (spitting up) and aspirating that into his lungs. While Luke was under anesthesia, Dr. Hermann was also able to complete Luke's circumcision. Then Dr. Chung (ENT surgeon - stands for Ear, Nose, & Throat) put in Luke's trach. Everything went well with no complications. We are thankful that everything went so smoothly.
In the past when families have a trach put in at Medical City, after the child recovers from the surgery, the child will move to Our Children's House at Baylor, a rehab facility, to allow the family time and instruction to learn how to care for a child with a trach. Medical City just rolled out a training program for parents. We are their guinea pigs. Hopefully, if all goes smoothly, this program will take the place of or greatly reduce the amount of time we have to spend at Baylor. They haven't given us a firm time frame on when we will be able to take Luke home. We're looking at hopefully getting our home medical equipment next Wednesday or Friday. Then maybe a week or a little more getting Luke adjusted to his new ventilator. Then it shouldn't be too much longer before we're headed home! David and I are spending most evenings preparing our home for Luke's arrival: finishing touches on his room decorations, getting air filters to clean the air in our home, Uncle Andy is even giving us his Roomba (robot vacuum!) to help out with the cat fur in between thorough vacuumings. Luke is gong to have a lot of equipment that he must be attached to or within arm's reach at all times, so we're even going to get a wagon to pull him around the house in so I can still get some things done around the house rather than being at his bedside 24/7. During the day we're learning all about how to take care of Luke's trach and g-tube sites: cleaning, changing equipment, assessing for problems, etc. We have fantastic nurses who are also our instructors. Dr. Mendeloff (our heart surgeon) even stopped by for a visit today and watched as I demonstrated what we learned in trach bootcamp today (talk about pressure!).
God didn't miraculously fix Luke's airways this time. Could he? Yes. Are we disappointed that God didn't act miraculously at this time and we have to take a bunch of equipment home? Yes. Does this mean that we didn't pray hard enough or have enough faith? No. David and I are confident that God sees the whole picture. He sees much more than we can, and we are convinced that his purposes will be realized as long as we surrender daily to him and act faithfully.
We are grateful for your continuing prayers for Luke's healing, as well as for strength and endurance for me and David. We feel pretty confident that we can do this, but we're digesting a lot of very critical information every day, and it's pretty draining. We love you all and appreciate your prayers and support.

Blessings,
Rachael & David

Tuesday

Trach bootcamp...

Monday

Luke's out of surgery. Everything went just fine. We're waiting to go back in and see him.

Sunday

is trying to look at the bright side of Luke getting a trach and a vent tomorrow. . . it's not a prison sentence...really. We're going to be glad he's coming home in a few weeks, whatever he's attached to... And I will praise God through this storm too...

A verse

As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Isaiah 55:9