Luke's 5th Heart Cath

Another procedure has come and gone.  Six weeks ago already.  My days are so blissfully (and sometimes not so blissfully) full, that I rarely have time to sit down and write to keep you all updated.  I don’t ever delay intentionally.  Please know that all your prayers, thoughts, concerns, Facebook shares, and comments are priceless to me.  Thank you for every kind word said on our behalf.  Please continue.  So here’s the update:  

I was very anxious for Luke’s last heart cath which took place on Jan 3.  Being in a new state and a new hospital, with new doctors and nurses, and the fact that now we have Sam to think about in addition to Luke, all that on top of the regular anxiety I have before any of Luke’s major procedures was almost overwhelming.  But God is faithful, as always, and he calmed my fears so that the morning of the cath I was calm and once again “in commando mode.”  

My parents flew in to Atlanta the night before, and so we dropped Sam off with my mom at their hotel and my dad came with us to the hospital.  Luke had a tough time once we got to his pre-op room.  He cried and freaked out for about 30 minutes non-stop.  Eventually he was able to settle down.  The nurse brought him a stuffed cheetah which he promptly named “Fluffy.”  (The fact that he gave his toy a descriptive name shows you just how much his verbal skills have improved.)  We met the new surgeon and talked with the anesthesiologist.  Then Luke was able to have his Versed (“goofy juice”).  The nurse allowed my dad to come back to the room with us at that point, so Luke was very glad to have his “Bippy” to hold him while we waited the last few minutes.  

The surgeon didn’t know exactly what he would do during the cath until they were in there.  We got reports from the nurse about every hour and a half as the procedure unfolded.  Luke went to sleep without incident.  The doctor tried to thread the catheter in both sides of Luke’s groin with no success because those entry points are so scarred over.  He ended up having to thread the catheter through the artery in Luke’s neck.  The doctor occluded the fenestration (hole) that Dr. Mendeloff purposely left open during Luke’s last open heart surgery in March.  The test showed that Luke’s pressures stayed stable and good with it occluded, so they decided to close it permanently.  The doctor later said that the fenestration was quite large and about half of Luke’s blood was escaping through that hole, contributing to his low o2 sats/blue color.  In addition, Luke’s pulmonary arteries (vessels going from the heart to the lungs) appeared quite small (as they always have been).  They weren’t growing appropriately because so much of the blood was diverting through the fenestration, and there wasn’t good blood pressure flowing through the pulmonary arteries.  The doctor decided that stints in the pulmonary arteries weren’t necessary at this time, but he did use a balloon (angioplasty) to dilate them.  Overall, the procedure went smoothly and took about 4 hours.  He was extubated without incident before we got to see him, to our extreme relief, and taken back to recovery.    

When we got back to his recovery room, we were surprised and delighted to see his o2 sats in the 90%s.  We saw those numbers for a little while after Luke’s Fontan surgery in March, but only for awhile and only with oxygen support.  Luke woke up very grumpy as usual, but it wasn’t long before he was sitting up and playing with his iPad.  

As expected, they kept Luke overnight, but it was a very different feeling than Luke’s last heart cath in February 2013.  We were expecting to stay if they did anything invasive to Luke’s heart.  But, praise God, there was never any emergency or trouble of any kind.  The whole hospital stay went just as smoothly as could be.  Overnight, I stayed with Sam at my parents’ hotel room nearby while David stayed at the hospital with Luke.  Luke slept pretty well, but stayed grumpy from anesthesia for the rest of the day.  I stayed with Luke in the morning while David went to shower and take a nap at the hotel.  By the time he and my parents came back to the hospital, we were all packed up to leave and getting our discharge instructions.  

I was afraid that Luke’s o2 sats would eventually (maybe even quickly) drift back down to the low 80%s where they had been since his Fontan.  But night after night putting the pulse ox on, his numbers have consistently stayed in the 90%s, occasionally hitting as high as 96-97% but mainly staying in the 92-94% range.  And his little fingers and toes are so incredibly, beautifully pink!  A month later, I still look down at his toes in the morning and have to catch my breath because the color is so different.  Luke also has more stamina now (Look out world!).  While playing at the park, his breathing is much easier and quieter.  He can still get noisy with a lot of exertion, but it takes longer for him to get to that point.  

One problem has arisen in regard to Luke’s last heart cath.  Our health insurance changed from Blue Cross to Humana on January 1.  The day before the cath, David called the hospital to inform them that the insurance had changed so they could get pre-approval from Humana. The morning of the cath, there was some confusion about the insurance during admission, but we thought we corrected it.  We were sure to tell them that we no longer had Blue Cross, but Humana instead.  Well, the hospital forgot or something, because they billed Blue Cross and didn’t get pre approval from Humana.  We didn’t know about the problem until a few weeks later when we went to get Luke’s neuropsychological evaluation from Children’s Healthcare of Atlanta (CHOA).  It has been a HUGE mess!  We now know that EVERYTHING has to be referred by our Primary Care Physician.  Unfortunately, our beloved new pediatrician, Dr. Kubagawa is not in network for Humana. So we had to change pediatricians.  The in-network pediatrician nearest to our home is 25 minutes away in Johns Creek.  I like the doctor, Dr. Muthukumar, well enough, but her nurse (the only other person on staff in this tiny practice) is pitifully ignorant about making referrals and about the medical equipment and supplies Luke needs.  Poor girl is having to take a crash course in all of it because we need all of the referrals and medical supplies, we absolutely need them now (like yesterday), and we absolutely need insurance to pay for it.  I’m thankful that this doctor’s office did not have to help us with our Katie Beckett (Medicaid) application.  

David has spent a tremendous amount of time on the phone with our insurance company working on getting them to cover Luke’s heart cath.  Part of the problem is that many other people who just signed up with Humana are having all sorts of difficulties, so David has to wait on hold for hours before he can talk to anybody.  Thankfully, after doing lots and lots of leg-work, it looks like they will cover it and we’ve gotten referrals so that Luke can continue to see his cardiologist and pulmonologist.  Please pray for us that all of these problems with the insurance company will work out.  None of it is in the bag yet.  David especially continues to be quite stressed out about this.  But honestly, I feel like this is a much better problem to have, than having to be worried about my little boy’s health and safety.  Give me money trouble over medical trouble any day!

Finally, Luke’s application for the Katie Beckett waiver is completed now that we’ve finally gotten a developmental evaluation from the Gwinnett Public School Special Education assessment team.   Incidentally, the team didn’t conclude anything about Luke’s behavior/cognition except that he is quite developmentally delayed (understandably).  He definitely qualifies for Special Education.  We are waiting to hear from a Special Ed teacher at the elementary school nearby (Walnut Grove) so that we can set up an IEP (Individual Education Plan?) meeting.  Then we will make the final decision about enrolling Luke in school.  Unless we see a major red flag in the immediate future, I really believe that Gwinnett County Special Education is exactly where Luke needs to be at this time in his life.  We are still waiting to hear the results of the neuropsychological evaluation that Luke had done at CHOA the end of January.  I’m sure all the icy weather we’ve had has not helped expedite the process.  I hope to write another update soon detailing their findings about Luke’s psychological/cognitive/developmental standing.

So our Katie Beckett application is complete.  This is the application that will hopefully qualify Luke for Medicaid based on his medical fragility instead of our family income.  Our Katie Beckett caseworker said that it should only take about a week for the nurse to make the determination about what level of care Luke requires.  He had the completed application in his hands last Friday (2/7), but again, I’m sure the icy weather causing people to stay home from work has delayed things.  I plan to call Monday to find out the status.  Please pray fervently with us that Luke gets qualified for Medicaid.  This would give him access to the feeding, occupational, and physical therapies that he needs to progress since Humana will only pay for maximum 10 therapy sessions a year.  I’m afraid that I’m at the end of my knowledge and skill with helping Luke to learn to eat.  He’s doing quite well with purees of yogurt and applesauce consistency, but I cannot get him to even try crunchies or anything that requires chewing, even if it’s dissolvable like the puffs or yogurt melts that Sam loves to eat.  My plan for Sam creating a little healthy competition and challenging Luke to step up his game with eating has not worked as I hoped it would.  So either Cherish or Becca need to move to Georgia and give us free sessions, or we need to get Medicaid so Luke can get therapy and learn to eat.    I would take either one.  ;)

So we are blissfully now existing in the family life post-heart procedures.  We can officially say we have no more procedures looming or hanging over our heads.  Unless new problems arise or old problems return, Luke’s heart is in the repaired state that it will remain for the rest of his life.  There is a possibility that Luke’s pulmonary arteries will eventually need stints to open them wider, but with the much increased blood flow through them, this is unlikely.  In about 6 months, Luke’s new cardiologist, Dr. Singh would like to do an MRI to map out his cardiovascular system, but we are expecting that no more surgical intervention will be needed to keep Luke healthy.  Isn’t that AMAZING??  It’s almost too good to be true that it’s all behind us!  

One more thing.  You guys completely outdid yourselves as you posted pictures of you wearing red to support Luke during Congenital Heart Defect Awareness Week.  I really did not expect such a strong outpouring of support and love.  We got pictures from people all over the country.  I thought I was the one being a blessing, raising awareness and helping people better understand CHDs, but our family were the ones that were really blessed through the past week.  I was a little giddy with excitement (and spent too much time on Facebook) waiting for the next notification that I had been tagged in one of your pictures.  But really, it’s nothing new. The pictures were just tangible and visible signs of the love and support you all have given us from the first day of Luke’s diagnosis.  Thank you, thank you, thank you!  You are all such a blessing in our lives!

As always, we give the glory to our Father God who has carried us every step of the way.  And we thank you for your continued prayers on our behalf.  I hope to be writing again (relatively) soon to tell you about how God has worked out all of our insurance/Medicaid/financial difficulties.  God is able, and he is good.  All the time.

Blessings,

Rachael, David, Luke, and Sam

Luke in Georgia

We moved to Georgia October 15.  We’ve been here over two months, and I can hardly believe it.  In some ways it feels like we just got here last week, and in some ways it feels like we’ve been here much longer.  Lawrenceville is starting to feel like home.  

We’ve made significant progress on all of the major tasks that we have to accomplish.  I will send in my application for Licensure as a Marriage and Family Therapist in Georgia very soon.  Then it should be just a matter of waiting a few weeks for the paperwork to go through.  I have no reason to expect that my application will be denied.  David has worked hard spending hours at a time on the internet and on hold on the phone registering for Obama Care.  Just before Christmas, we were finally able to purchase a health plan and get health insurance to pick up on Jan 1 when our TX Blue Cross health insurance ends.  Whatever your thoughts or opinions about Obama Care, we are hugely relieved to at least have health insurance coverage.  

I’ve been working on getting Luke’s application completed for the Katie Beckett waiver, which will hopefully qualify him for Medicaid based on his medical fragility instead of our family income.  A few weeks ago, I thought the application was complete, but then the caseworker told me that they still require a developmental evaluation.  I took Luke to our pediatrician, but then found out that he could not complete the evaluation.  We have Luke scheduled for neuropsychological testing with Children’s Healthcare of Atlanta in late January.  The receptionist there told me that their evaluation will indeed satisfy the requirements for the Katie Beckett application.  I’m working on getting Luke’s appointment moved up.  The sooner Luke can get Medicaid the better.  We can’t pay for the therapies Luke needs out of pocket, so we really need for this to go through.  

So how is Luke doing?  He’s had somewhat of a difficult time adjusting.  We’ve had quite  a few behavior challenges.  It seems we’re through the worst of the adjustment period, though.  He’s made some friends at church, especially a set of boy and girl twins who are six months younger than he is.  He feels very comfortable around this family, plus all three of our elders, and a few others in our congregation.  Luke has been going to Sunday school class by himself every Sunday with no problems, which has been great.  However, he will NOT sit in church service for more than a few minutes without completely going bonkers (Where’s Larry when you need him??).  We’re working on that.  Thankfully our church has children’s worship during the sermon, and Luke loves to go, so I can at least sit in the auditorium during the sermon.  Sam does great in the nursery loving on all the sweet ladies for both Bible class and worship service.  

The playground for our apartment complex is right outside our door, so we go for at least 30 minutes to an hour almost every day it doesn’t rain (it rains A LOT here in Georgia!).  Luke adores playing on the slide.  Sam likes being carried around in the sling and dreaming about the day when he can play on the slide with his big brother.  

I’ve given up trying to potty train Luke for the time being.  I talked to our pediatrician who suggested that we wait a few more months before trying again in order to give Luke more time to adjust to his new home.  I think that’s wise advice.  So Luke’s back in Pull-ups, and we’re trying to encourage him to use the potty as much as possible without pressuring him at all.  Some days we’re more successful than others.  I guess we’ll get there eventually.  

Eating is going relatively well.  We’re still only making Luke do one oral meal a day of applesauce or yogurt.  Meals are going much smoother and taking less time than they were a few weeks ago.  We had several days where Luke and I had stand-offs that lasted 1-2 hours.  It was extremely frustrating, but I think now we’re getting some payoff finally.  Soon I will move him to two meals a day, and maybe start blending his meals myself and thickening the texture.  Oh how I need the guidance and support of a feeding therapist.  I feel adequate to maintain Luke’s eating skills, but I’m kind of shooting in the dark when it comes to helping him advance his skills.    My prayer is that Medicaid comes through for us quickly and we can employ a feeding therapist and an occupational therapist very soon. Additionally Luke has been more interested in food, asking for bites of our food or Sam’s food.  At least twice a week we really try to sit down together as a family at the dinner table.  Luke gets his own bowl of food, broken up in small pieces.  We make him taste everything, but he has yet to chew or swallow a bite of anything that hasn’t been puréed.  The other night, Luke chose to eat applesauce at the dinner table.  It was only a few bites, but Luke at all of it (with quite a bit of encouragement from David and me), feeding himself with his own spoon.  Yesterday, instead of yogurt or applesauce, I fed Luke a level 3 Gerber baby food.  The texture was quite a bit thicker and even had some tiny chunks.  Luke gagged more frequently than usual, but with coaching, he not only ate it, but ate a larger amount than he usually does at lunch (5 oz).  We’re making gradual progress on this front.  

David jokes that Luke gets his stubbornness from his mom.  But honestly, I think he really does.  I’m learning that whether it’s potty training, eating, dressing, or something else, I am always in danger of setting my expectations too high, wanting success or even perfection too much, or pushing Luke too hard.  I was like that as a student, pushing myself for straight As, as a gymnastics coach, pushing the kids to finish their assignment, no matter what, and now I’ve been carrying that over into parenthood as well.  For instance, Luke may have had a great meal up until the last bite.  I can clearly see that he doesn’t want that last bite, but the perfectionism in me drives me to push him to eat it, no matter what.  So we end up fighting and negating his success, just because of my stupid stubborn preference to have things completed.  I need for God to give me grace every day while I’m learning that mercy must take a bigger part in the way I parent Luke.  Luke and I are so much alike.  Both of us want to be in control.  I know that I’m the parent, and there are things that I absolutely need to be in control of when it comes to Luke’s safety and discipline.  However, I also must remember that Luke has never ever done anything on anyone else’s timeline but his own.  I know this is true, but I forget it so frequently.  I get stubborn and push, and Luke and I inevitably butt heads and make our days much harder than they need to be.  So I guess one of my new year’s resolutions is to temper my perfectionism with mercy for others, for myself, and especially for Luke.  

God has been very faithful to send us to amazing doctors.  I love our new pediatrician.  He has been incredibly helpful as I’ve been working on Luke’s Katie Beckett application, as well as very gentle and supportive when I’ve had questions about Sam.  Luke’s new pulmonologist is also great and has been very helpful with our Katie Beckett application.  We like Luke’s new cardiologist as well (although NO one will ever replace our beloved Dr. Kao).  All of them seem very professional, very thorough, and to have good bedside manner.  

Luke’s cardiologist has referred us to the neuropsychology program at Children’s Healthcare of Atlanta.  Before we knew about the requirement for the developmental evaluation for Katie Beckett, I was very interested in the neuropsychology program because of some of the things we’ve noticed with Luke’s behavior.  It is difficult for us to tell what in Luke’s behavior and cognitive processes are “normal” developmental delay — meaning he’ll get it eventually, he just is behind from all the the time he spent in the hospital — and what, if anything, might be an indication of something more serious as a result of the seizures, head bleed, and hyponutremia (dangerously low sodium level) he suffered during his first year of life.  My hope is that the neuropsychological testing results will give us some solid answers about where he is in his development and suggest some practical ways we can work with him to help him improve.  Hopefully it will help us know better what we can and should expect from Luke, and what we might be doing that is holding him back and enabling him to stay dependent on us for so many things (potty training, dressing, self-feeding, chores, etc.).  This testing will be a three-appointment process.  The first appointment will be attended by just David and me, the second will be the actual testing, and third will be the appointment where we get the results.  Right now the first appointment is scheduled for Jan 7 and the testing for Jan 22, but as I mentioned before I am trying to get it moved up.  

Finally, let me update you about Luke’s cardiac status.  During his last heart surgery in March, Dr. Mendeloff left a fenestration, basically a pressure release valve/hole, in Luke’s right atrium.  This way, if the pressure in that chamber became too great due to the larger volume of blood in his pulmonary arteries, the blood could escape through the fenestration.  In kids with Luke’s repair, sometimes they leave the fenestration open, and sometimes they close it after a period of 6-12 months after the Fontan surgery.  We have reached that window of time now, and so Luke’s 5th heart catheterization is looming on Friday morning.  They will insert a catheter in the artery either in Luke’s groin or his neck (sub-clavian).  Using the catheter, they will take pictures, measure pressures, etc.  If the numbers support closure of the fenestration, they will be able to close it during the procedure Friday without having to do open-chest surgery. If it doesn’t look like they should close the fenestration, we may have to do another heart cath down the road sometime to check the same thing.  We are obviously hoping that the pressures will all look good, they can successfully close the fenestration, and we can say goodbye to hospital heart units and cath labs forever.  My parents are coming in tonight to support us during this hospital stay.  My mom will keep Sam at their hotel room nearby the hospital so I can stay with Luke, but run over and take care of Sam if I need to.  They aren’t planning to keep Luke overnight, but I’m packing bags for all of us.  Luke has ALWAYS stayed overnight, so I’m kind of expecting him to this time as well.  That’s not being negative, it’s just being realistic.  

This heart cath causes me anxiety for several reasons.  I keep thinking about the last cath when Luke had so much trouble getting off the ventilator after the procedure.  They ended up having to intubate and extubate (insert and remove the breathing tube) three times total, and we spent the night in the cardiac ICU.  Luke never does things according to plan, and I’m just waiting anxiously to see how this one is going to go.  I pray that it is smooth sailing and very boring, but it never is with Luke.  He likes to keep everybody on their toes.  This is also the first (and hopefully only) major procedure that we’ve done in Atlanta.  We haven’t met the doctor that will be performing the cath.  I’ve only spoken with the anesthesiologist on the phone.  While the people at Medical City Dallas CHSU have become our extended family, it is hard to go to a completely new hospital Friday knowing that we won’t see any familiar faces on our medical team.  It’s scary to work with a team that hasn’t been a part of Luke’s history or know his personality when his personality plays such a huge part in how he does at each hospitalization.  And it will be very tiring to educate each new person we talk to about his history and habits.  Also, Luke is very much aware of what it means when we go to the hospital now.  I am dreading dealing with his post traumatic stress disorder.  I wonder if they’ll give all of us a healthy dose of Versed at the door… On top of all that, and this is admittedly minor in comparison, we can’t take Sam to the hospital because of hospital policy, and this will be the my first time to be away from Sam for most of the day.  Plus, it’s a new hospital  which adds the stress of not knowing the best route to take to get there, what the traffic will be like, where to park, the best places to get food, etc.  And we have brand new health insurance—I’m praying that everything goes smoothly with billing. 

All this being said, God is faithful.  All the time.  I know that he will go before us and be our rear guard.  He has every single time before this. He has never left us alone, even for a moment.  I am so thankful to know that we have so many people that love us who are praying for us and supporting us, both here in Georgia and from miles and miles away in Texas, New Mexico, Oklahoma, Colorado, California, and other places across the country.  God is our strong tower.  We are nothing without him. But you all are his hands, arms, eyes, and ears—the body.   I look forward to having this one behind us and to updating you with Luke’s progress in the near future.  Until then, please keep praying.  We hope that our journey with Luke’s health uplifts you, and more importantly causes you to look to God the Father who loves you with a crazy love.

Blessings,

Rachael, David, Luke, and Sam