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

A New Chapter (a month late)

A New Chapter

I started this blog post in the car the day we left Texas to move to Georgia.  Things haven’t really calmed down any since we started moving, as you can tell from the long time it’s been between starting this post and finishing it.  We’ve been in Georgia a month already.  I can hardly believe it.  I’m going to leave the rest of the body of the post the same as I had already written it, to convey the emotions that were present the day we moved...

Yesterday, our last Sunday at Rockwall and Brin, and this morning were full of tears and sadness, goodbyes, and disappointment over what should have been different.  Tomorrow is full of the promise of a new beginning, new relationships, and new challenges, as well as some anxiety.  But the drive between Texas and Georgia is a long one, with lots of time for introspection.  

It’s really not until we started to say goodbye that I began to realize how much I’m going to miss my Texas family.  The weeks leading up to our move have been so incredibly full and busy, I’ve hardly had time to think.  Even though all of Luke’s surgeries are over, we still have a very medically complicated child, and coordinating all his new doctors, therapists, and insurance has been pretty stressful.  I will be glad when everything is settled.  I’ve been so focused on making sure things are tied up in Texas and ready for us in Georgia, that I haven’t really had time to feel sad about who we’re leaving behind or anxious about what lies ahead.  Now that moving day is finally here, I’m thankful for a long drive to get my thoughts in order and nail down what exactly I am feeling.  I kind of wish the drive was twice as long so I could take the time to write each person that I will miss from Texas to tell them how much they mean to me.  

Although I was very sad yesterday and this morning, my God has blessed me with a peace that passes understanding.  I am hopeful about the future and reassured by little signs along the way that our family is doing exactly what we are supposed to be doing.  

It is very clear to us that God put us in Terrell five and a half years ago for several reasons.  I believe one reason God put us in Terrell was so that we could be near Dallas for Luke’s medical care.  When God placed our feet on that road, I prayed that he would guide us to each individual doctor, nurse, and therapist that would be perfect to treat Luke and walk with our family.  I believe he answered that prayer in so many ways.  We have met so many incredible people--some who know our God and some who have yet to acknowledge him.  I believe God has and continues to use Luke and our family as his instruments to proclaim his love and mighty power.  

I believe God put us in Terrell because in many ways Rockwall and Brin was the fertile soil that God used to produce a harvest from the kernel of our faith story.  We have heard reports of people in other cities, in other states, and even in other countries who learned of Luke’s story and as a result prayed or trusted Jesus for the first time.  Luke’s precious little life has been a loud proclamation that God is loving, all-powerful, and that he is good all the time.  I am humbled as I think about all the lives God has touched, known and unknown to us, through Luke’s story.  I believe the people connected to Rockwall and Brin were ready to witness God’s power in a very tangible way, and they got to see it through the transformation of a tiny, 5lb 10oz baby boy on the brink of death into a walking, talking, laughing little boy who lives life so furiously as if he wants to catch up on all he missed out on during his first year of life.  

I don’t know what all the reasons are that God lead us to Terrell.  And I only know a few of the reasons he called us to leave Terrell and move to Lawrenceville.  But it is undoubtedly clear that even though leaving the people we love so much is painful, we’re on the right road.  Things have moved so quickly since David first heard at the end of June about a church near Atlanta that was looking for a pulpit minister.  The timing has been so perfect.  Luke had his last open heart surgery in March, and then Sam was born in May.  For the first time since I got pregnant with Luke, we became mobile.  In the time surrounding our interview weekend, we prayed that God would tell us very clearly if Gwinnett would be a good fit for us.  During our visit to Gwinnett, things seemed to start sliding into place.

Right off the bat, David and I were both inspired by the caring, proactive, team-oriented, and vision-driven nature of the leadership at Gwinnett church.  I mean this in the most loving and respectful way possible, but seeing these characteristics in the Gwinnette shepherds renewed our hope in the future of the Church in general, in our ministry specifically, and even began to heal some of the wounds we sustained during our ministry at Rockwall and Brin.  

Every person we met in the congregation seemed to be immediately warm and welcoming.  Gwinnette church has a great number of young families and seems ready to really grow.  Atlanta has one of the top 10 children’s hospitals in the country.  Children’s Hospital of Atlanta has a great neuropsychology program that may be able to help us diagnose and treat specifically the cognitive and behavioral issues we’ve seen in Luke.  F rom what we’ve heard, Gwinnette has great schools to suit Luke’s current educational needs.  Lawrenceville has everything we want in a place to live, including close (but not too close) proximity to Atlanta.  Georgia is so beautiful.  There appears to be good room for me to grow professionally as an MFT.  The distance from Albuquerque and Edmond truly gave us pause, but we decided together that we felt we really wanted to make a permanent home in Lawrenceville should we be offered the position.  

Once we were offered the job, our biggest worries were if we would be able to sell the house, would we be able to pay Luke’s health insurance costs and still maintain his level of care (6 physical, occupational, and feeding therapy sessions each week), and would I be able to get licensed as an MFT in Georgia.  

I’m still working on the details of my MFT licensure.  It looks like I will probably have to be an associate MFT for a year in Georgia before I can apply for professional licensure.  Georgia counts hours a little differently than Texas, and so I’m about 500 hours away from the required amount.  Thankfully, I already have a couple of contacts in the the mental health world who I know will be very willing to help me achieve my professional goals.  I’m not too worried about it.  God has carried my career this far.  I know that if he wants me to be licensed, he’ll take care of the red tape.

The morning after we were offered the position at Gwinnett, I started working on Luke’s medicaid coverage.  We make too much money for Luke to qualify for medicaid based on family income.  But his medical costs far exceed what we as a family can pay, even after primary private medical insurance (for example, his formula costs over $1000 a month and feeding therapy costs about $350 a week--that adds up in a hurry).  Because of Luke’s medical status, he qualifies for medicaid through Texas’ Medically Dependent Child Program.  We spent five dedicated weeks at OCH Baylor and a wild night at a nursing home in Tyler jumping through government hoops to secure his medicaid.  I had no idea how to get Luke qualified for medicaid based on his medical status in Georgia.  I did some searches online and ran into several dead ends.  

Then God gave me the idea to call a social worker in Georgia. Those of you who know me well  know that cold calling and asking someone for help is very, very hard for me.  Well, I drummed up the courage to call the social work department at Scottish Rite hospital in Atlanta:  “My son has never been a patient at your hospital, but we’re moving to Georgia in a month, and I was hoping you could point me in the right direction...”  I was surprised and delighted by how helpful and kind that sweet social worker was:  “Here’s what you need to do...let me email you the packet so you can get started even before you move...”  I even felt comfortable calling her a few weeks later to get a referral for a medical equipment company (DME).  We haven’t secured Luke’s medicaid yet, but we are well on our way to getting it locked down.  

Most of you know that we received an offer on our house only a few hours after we listed it on the market.  We didn’t get quite the price we asked for it, but we got more than the house would appraise for.  We were disappointed that we would have to bring cash to close, but the amount was on the high end of manageable.  Listen.  Because this is the most important thing.  God takes care of you every time.  He loves his kids with an abounding love, and he provides for us more than we need.  Every time.  We closed on our house on Friday.  Friday, Saturday, and Sunday we received cash gifts from our beloved Rockwall and Brin family that completely covered our closing costs.  Completely, with a little left over.  Really.  “They all ate and were satisfied, and the disciples picked up twelve basketfuls of leftovers.” (Mark 6:42-43)

So as the Chisholms turn the page and begin a new chapter that takes place in Lawrenceville, GA, I have some things I want to say to the people we’ve left as well as the people we are about to partner with in ministry.  To my Gwinnette family:  I can’t wait to meet you, get to know you, and love you.  We feel part of your family already.  We are so grateful for and encouraged by all of the wonderful emails, calls, dinner invitations, and Facebook posts welcoming us to Georgia.  I know of a few people back in Texas who are only able to let us go because they’ve seen the outpouring of love you’ve shown to us before we’ve even arrived.  We know that you are going to take good care of us.  We are so excited about joining you and partnering with you as we further God’s kingdom.  I personally am looking forward to developing mature and intimate relationships with the women of this congregation.  It is my prayer that we can always be loving and honest with each other and strengthen each other as iron sharpens iron.  I have much to learn, and I hope that you will be my patient teachers.  

Gwinnette, You don’t know the incredible story of our journey of faith with Luke yet, but you will.  For now you need to know that our experiences in Dallas hospitals are part of the very fabric of our being.  We see everything through the lens of the profound lessons of faith that God has taught us through our suffering.  We are excited to share our story with you.  We love to answer questions.  We love to talk about the amazing things God has done though our lives and through Luke’s life.  Our sincere hope is that our story will edify you, as I believe it has edified many of our other Christian brothers and sisters.  If you wish to read about our story as it unfolded, you can read our blog atwww.prayingforbabyluke.blogspot.com.  

To my Texas family:  I miss you.  I miss the intimacy and the history I share with so many of you, my dear friends.  I think about you often.  I treasure each of you for the different things you contribute to the Body of Christ.  I know that God has lead us to Georgia, but it has been difficult to leave you.  I wish that several of you could come to Gwinnett for awhile and orient our new congregation in all of Luke’s tricks (at least we don’t have an elevator in our new building!).  They’re all doing a pretty good job already though.  ;-)  

Remember that our hope is in our Lord.  God’s family doesn’t shrink, it grows.  That means that even as we turn our faces towards Georgia and to what God is doing here, our hearts are continually joined with yours.  I plan on bringing Luke and Sam for a visit in June while David is in Abilene at school.  Besides visits, I look forward to sitting around the Wedding Feast table and reminiscing with you--and singing God’s praises side by side with you for eternity.  I can’t wait to introduce you all to your Gwinnett brothers and sisters--on this side of heaven or the other side.  

I wish that I had finished this post weeks ago, so that I could tell you before now how much you all mean to me.  We’ve already been here for a month. This post is already over three pages long, so I won’t keep going.  My next post will update you all on what we are doing here, and how Luke’s specifically is doing developmentally and health-wise.  For now, know that he is doing well.  He’s had some trouble behaviorally with the move and accompanying adjustments, but we’re making progress.  I have to remember every day to thank God for his tenacity...it’s a huge reason why he’s alive today, even though it’s a challenge for me on a daily basis.  

We love you and thank you, as always, for your prayers.  We pray that the God of  Peace and Comfort keeps his arms around you.

Blessings,

Rachael, David, Luke, and Sam

Mother of Two

I’ve been wanting to write a post to share with everyone how things have been going since Sam’s birth.  One thing is for sure, I’m going to have to be very intentional about carving out time to work and write now.  My days are inexplicably fuller and more satisfying being the mother of two.  Now that Sam is one month old, I didn’t want more time to go by without writing down my thoughts about becoming this new kind of mother.  

Sam was born on May 20th and arrived at 12:33 pm.  He weighed 7lbs 4oz and was 20.5 in long.  His arrival was just like the last week of my pregnancy - completely uneventful.  Sam was laid back in-utero, and accordingly, his birth was surrounded by absolutely zero hype.  We arrived at the hospital with Luke and both sets of our parents at 10:00.  I got my IV and my epidural and they were wheeling me back to the OR by 11:45.  I was extremely uncomfortable with my epidural while everyone was prepping for surgery.  It seemed like forever before they let David come back to the OR with me.  I started feeling a little better with David by my side.  Then I heard my doctor say, “It’s almost baby time!”  and then in another minute, they were showing me Sam over the curtain.  David left my side then to go help take care of Sam, but I focused on listening to Sam’s crying.  After just a few minutes, David brought over to me a swaddled, very pink, very healthy Samuel Mark Chisholm.  

When Luke was born, he was immediately taken to the NICU, and David followed him.  This time was so much better.  David held Sam and sat next to me for the rest of the surgery.  Then David carried Sam into the recovery room with us and I got to hold him and nurse him as soon as we were settled in recovery.  The next two hours was amazing.  I nursed Sam and held him the whole time.  Every time I looked down at him, the realization that he is mine, he is here, and he is healthy would wash over me anew.  It was so hard for me to let the nurses take him away for his bath and first examination.  I’m not sure how long he was gone, but it seemed like forever.  I might have been a little loopy, but I called the nursery at least twice to remind them that I wanted him brought to me as soon as they were done with him.  It was so hard being apart from him.  They finally brought him to me and we had plenty of cuddle time and nursing time for the rest of the afternoon and evening.  

One thing that was very difficult at the time of Sam’s birth was Luke’s reaction to being at Medical City.  We had been to Med City so many times for blood draws and x-rays in the previous two months that Luke was extremely nervous about being there.  He would not come over to my bed to look at Sam or even hug me.  It was very difficult for him to tolerate being in the hospital room for very long.  It was hard on me to miss my big boy so much during the hospital stay and not to get loves from him when he was there with us.  

Let me write an aside to tell everyone how Luke has been adjusting to becoming a sibling.  At first, Luke ignored Sam.  Every once in awhile he would walk by Sam’s basinet and poke him, or drop a toy in there.  Within the last week or so, Luke’s started to be more interested in his little brother.  Sometimes when he wakes up in the morning, he says “Go see baby Sam.”  Last night he tried to climb in Sam’s basinet with him.  When I wouldn’t let him, he gave Sam a hug and a kiss instead.  The other day I asked Luke who he loves, and he answered “Baby Sam!”  Luke has frequently wanted to share his toys and letters with his little brother.  He’s warming up to Sam, I just have to be very vigilant so he doesn’t crush or hurt him with his enthusiasm.   

Our last night at the hospital was very special to me.  Gigi and Guapo took Luke home early in the afternoon, and my parents had already gone back to Albuquerque.  The hospital room service prepared a special “celebration dinner” for us, which was awesome.  David and I sat in the hospital room and ate dinner together with Sam sleeping in the bassinet a few feet away.  After that, the three of us went for a walk around the floor.  It was nice to process together how wonderful and different the experience with Sam has been.  As much as I missed Luke, it was so nice to have a few nights bonding with Sam and making him a part of our family.  

Thursday morning, we started making preparations to go home from the hospital.  When the time came, it was very surreal.  We packed up our stuff, David installed the car seat, then it was time to go.  I sat in the wheelchair and held Sam while they wheeled me downstairs.  Putting Sam in the car was so low-key and unceremonious.  I could hardly believe they were letting us just walk out the door with that precious bundle and put him in the car, when taking Luke home as a four and a half month old was so complicated and took a week of coordination before hand.  

So many of you reading are probably thinking something like, “Why is she writing all of this?  This is so boring!”  Exactly.  I am so utterly thrilled at the lack of drama in my life right now.  Everything is so much different than it was with Luke’s birth and homecoming.  Sam eats, sleeps, has diapers, cries, spends a little while alert and content, and then we do it all again.  It is such a novel and glorious concept to me to be able to feed him when he’s hungry, hold him when he cries, and not have to wonder where he is or how he’s doing when I wake up in the middle of the night.  

I’m of course tired much of the time, but I’m adjusting well to the decrease in sleep.  I don’t really mind getting up to feed Sam in the middle of the night.  It’s such a sweet time to spend praying and cuddling with my precious baby.  When he cries, I don’t mind because it’s another opportunity to hold and comfort him.  I don’t mind changing 10 diapers a day - it’s much easier to change an infant without tubes and wires coming out of his body every which way.  Not that I minded changing diapers, or performing all of the medical tasks that Luke required as a baby.  It’s just so much more enjoyable this time around. You have to understand that I wasn’t able to do any of those things “normally” with Luke.   I couldn’t hold him without medical personnel in the room until he was 5 months old, and by that time he didn’t want to be held.  I never got to nurse him.  I didn’t hear him cry more than twice until he was 15 months old.  Taking Luke from his crib to the living room took 15 minutes because we had to gather his oxygen, ventilator, pulse ox, and suction machine everywhere he went.  It’s so novel for me to be able to carry Baby Sam with me all over the house.  As you might imagine, I don’t put him down for very long.  Last night I held him while I was brushing my teeth.  If someone at church holds him for more than a couple of minutes, I get antsy.  Maybe I’m warping him.  David says I’m spoiling him because Sam really likes to be held and cries to be picked up when he’s awake in his bouncer or swing for more than 10 minutes.  I’m not apologizing though.  This could very well be my last baby, and I’m snuggling, nursing, holding, and rocking enough for both of my sons.  

I am honored to be Luke’s mom - to perform all the duties that he requires.  I’m so blessed to have Luke in my life, and I will never love him less or say anything to detract from the privilege it is to raise him.  But I LOVE being this kind of mom.  I love the simplicity of nursing Sam when he’s hungry and holding him when he cries.  I love that David and I are solely responsible for him instead of having to rely so heavily on nursing care.  It is so satisfying.  My bliss and contentment still wash over me periodically.  I sometimes still can’t believe that Sam is here, is healthy, and is mine.  

Thank you all so much for your prayers that were answered when God gave us a healthy baby.  As much as I have wanted to have another baby from very soon after Luke was born, God’s timing has, as always, been perfect.  He allowed us to be finished with all of Luke’s surgeries and get his trach out before he gave us Sam. All the better to get to hug and kiss and enjoy him without the stress of hospitals and surgeries and the work of maintaining Luke’s trach.  You might be thinking that everything is so easy and peachy keen now.  It’s not.  There are definitely times when I’m overwhelmed, confused, scared, worried, tired, or grouchy.  Of course it’s not fun when Sam’s fussy at midnight and won’t go to sleep.  But through it all I’m overflowing with joy and thankfulness.  Luke’s illness has definitely given me a unique perspective that allows me to enjoy the simple things in caring for my two boys in a special way.

Thanks everyone for taking the time to read this.  We have so appreciated  those of you who have shared in our joy with your visits and the meals you have brought over the past month (I think I might need the manual to remember how to fire up the stove to cook a meal!).  We always thank you for your prayers and ask for your continued prayers for our family.  We treasure your love and friendship.

Blessings,

Rachael, David, Luke, and Sam

 Holding Sam in recovery, just minutes after he was born.

 Luke loving on his little brother

Our future Green Jacket winner at one month old!

Meet Sam!

Samuel Mark Chisholm

May 20, 2013

12:34 pm

7 lbs 4 oz

20.5 in

Momma and baby are doing great!

Praise God from whom all blessing flow!

Fontan Recovery + Getting Ready for Little Brother

Luke’s third open heart surgery was already over two months ago.  I tried to keep everybody in the loop by short posts on Facebook, but I know some of you aren’t on Facebook, and I haven’t written a post that puts everything together.  And I figure I’d better get it all down for posterity before Mr. Samuel (our second son) makes his appearance into this world.

Luke had his Fontan surgery on March 6th this year.  The day before, we went to Medical City for his pre-op appointment and to consult with his surgeon.  Luke was very excited about getting an X-ray (he’s been saying “X is for X-ray” since he learned his alphabet) until he realized it involved a big scary machine in a cold room where Mamma couldn’t go.  We got through the X-ray and blood work, although both were pretty upsetting for him.  Before all that though, he got to play with the Child Life Specialist in a mock OR.  His favorite part was playing with the labels of the body parts on the picture of the child in the Child Life Room.  He adores anything that has to do with words and letters.  Meeting with Dr. Mendeloff made us feel as confident as we could feel the day before heart surgery, and we knew we would be in great hands.  

The surgery seemed to take a long time, but it probably wasn’t any longer than a usual Fontan, I’m guessing.  Surgery went very smoothly with no problems.  We got to see him briefly in the hallway when they were taking him from the OR to his CHSU room.  Then things really seemed to take forever before we could go back and see him.  When one of our favorite nurses, Mary-Catherine came to get us to go see Luke, we found we had already overcome a major hurdle:  Luke was already off the breathing machine!  After the complications we had extubating him after his heart cath a month before, we were very worried that Luke would have major trouble again getting off the ventilator.  

Weaning him off the nitric oxide and oxygen proved to be our first problem.  The first time we tried to wean him off the nitric, his o2 sats dropped dramatically and his heart rate increased.  Night four post-op was a little scary for us.  It was hurting Luke to cough so much that he refused to do it and wouldn’t clear secretions.  His sats went down into the 30s and the RT had to suction secretions out through his nose, which was pretty traumatic for him.  It certainly wasn’t the worst emergency we’ve had in Luke’s history, but it was a pretty tough night.  We waited another day or so and then tried again, this time much more slowly and with the added help of a drug that does the job of the nitric.  We were successful this time.  

A big challenge for Luke was getting him out of bed and walking around.  He really didn’t feel up to doing anything but laying in bed and watching Super Why.  He cried every time we got him out of bed, but eventually he was walking all the way down the hall multiple times a day.  Once we got him off the Nitric, we were able to take him on wagon rides all over the hospital.  He enjoyed that a lot, and it gave us something to do other than sit around in his room.  

The single biggest problem we had with this surgery, immediately afterward and in the several weeks following was Luke’s fluid balance.  Fluid imbalance can affect Luke’s blood pressure, heart rate, and o2 sats by making it harder to breathe.  A few days after the docs had removed both of Luke’s chest drainage tubes, his x-ray showed that Luke was collecting fluid around his right lung.  At his bedside, they put in a “pig-tail” which is a mini-drainage tube and he immediately drained over 100ml of fluid.  Things started happening very quickly then.  The day after they put in his pig-tail, it stopped yielding fluid, so they took it out.  They weaned him completely off of supplemental oxygen in one morning.  That afternoon we were able to move him out of ICU to the regular patient floor.  

Luke’s labs were not good the next morning.  His BUN (a number that measures kidney function) was very high.  This was caused by being overly “dry” on his body’s fluid balance.  Dr. Kao told us that we would hold his diuretics and add water and Pediasure to his daily intake, but we wouldn’t be able to go home until Luke’s BUN was in a more acceptable range.  Luke was not sleeping very well at all the whole time he was in the hospital.  He would wake up every 15-90 minutes and be incredibly grouchy.  Consequently, both David and I were also sleep deprived.  We were sorely disappointed in Luke’s BUN because we desperately wanted to take him home.  Dr. Kao said that taking him home with a PICC line and bringing him back every day to draw labs was not an option.  So we settled in for a few days.  Thankfully, David’s mom stayed with us the whole time, so we had some relief.  

After a lot of prayer from us and all of you, we found out on March 18 that Luke’s BUN had decreased to a much more normal number.  It still wasn’t “normal,” but it was at a level acceptable enough to take him home.  It was such a relief to all be under our own roof again.  

Luke’s recovery seemed so slow to me.  We also had quite a bit of back and forth--getting better, then getting worse again.  It was all fluid related.  We got home on a Monday and things seemed to be improving, although he still wasn’t sleeping well, waking up at least every two hours.  By Friday, Luke’s breathing was really labored and fast and his sats were lower.  We took him to Medical City Friday morning for an X-ray, then we saw one of his pulmonologists (Dr. Gelfand) and Dr. Kao (cardiologist) immediately Dr. Gelfand talked to her.  Dr. Gelfand said his x-ray didn’t look great.  Dr. Kao sent us to get labs drawn to find out what was going on with his fluid levels.  We were afraid that Luke would have to be admitted to the hospital, but we ended up going home and putting Luke back on oral Lasix (diuretic) and prednisone (steroid) to help him breathe better.  Things started to improve.  

That Saturday night though, we had another adventure.  David discovered at bath time that Luke’s scrotum was very swollen.  This was somewhat alarming, but we weren’t really sure which doctor to call.  David ended up calling the pediatrician’s office and the nurse on call told us to take him to the ER.  We weren’t expecting that, but we packed up and got to Medical City about 9:00.  It was definitely not the longest stay in the ER we’ve had, but exhausting all the same.  At the end of it, the ER doc diagnosed Luke with something called Acute Hydrocele.  He suggested we consult with a general surgeon on Monday to see if he would need surgery to correct it.  David and I were completely frustrated at the prospect of Luke undergoing yet another surgery.  

Sunday, Luke’s problem was better, and we decided that I would talk to Dr. Kao before I called the general surgeon.  Dr. Kao said that she suspected that since he’s never had this problem before, it was probably due to the fluid imbalance and we should wait to see if it resolved or recurred before we called the general surgeon.  It did happen one more time within the next couple of days, but it hasn’t happened since then, so we don’t feel like we need to do anything about it unless the problem returns.  

Over the next several weeks, we continued to have fluid problems.  On Lasix, Luke’s BUN would get really high, but when we would hold it, Luke would become very swollen.  Instead of accumulating in his chest, the fluid started accumulating in his legs and feet.  It got so bad that it got very painful for Luke to walk around, or even for us to touch his legs or feet gently.  This made things like getting Luke dressed and ready for the day or getting him in and out of a shopping cart extremely difficult.  Luke would scream anytime his feet touched the floor or I had to hold onto his legs to change his diaper.  It really was hard carrying around a 36 lb boy on sternal precautions (can’t lift him by his arms) while I was more than 30 weeks pregnant.  But God gave me grace for each moment and we got through it.  

So we were in a bind:  Luke needed Lasix to get the fluid off so he could walk without tremendous pain.  But every time we gave him Lasix, his BUN would get worse.  And he still wasn’t sleeping well.  Finally, we seemed to find a cocktail that started moving us in the right direction:  Lasix every other day, lots of walking and tricycle riding (in spite of his pain) to work out the fluid in his legs and feet, and a healthy dose of Melatonin at bedtime to help him sleep.  Luke started sleeping better, which helped him to be less grouchy during the day and more amenable to walking.  The every other day Lasix helped get the fluid off slowly enough to keep his BUN going in the right direction, although it was very slow progress.  Finally, toward the end of April, seven weeks after surgery, we got a call from Dr. Kao who said that his latest labs looked “beautiful.”  It was almost like he flipped a switch.  The difference between that Sunday and Monday was night and day.  He visibly felt a lot better and had a lot more energy.  Walking didn’t seem to bother him nearly as badly.  

Now Luke is back to his old self.  He’s sleeping through the night, without the help of Melatonin, with very occasional and brief waking in the night.  He’s walking all over the place and regaining his skills in Physical/Occupational/Feeding therapies throughout the week.  Last week we hit a major milestone in our family’s life:  we weaned off of home health nursing.  Our nurse’s last shift was last Thursday, and we’re not looking back.  I was nervous that I would regret dismissing our nursing, but it feels so good to have our home all to ourselves for the first time in nearly four years.  Luke misses his three nurses every day, but we are so excited that we get to be a “normal” family finally.  

We visited Dr. Kao this past week.  She is thrilled at his progress.  She reduced his Lasix to every other day, and we’ll probably end up discontinuing it very soon.  We haven’t had to draw Luke’s labs since April 22.  He’s been feeling so well that we haven’t needed to wonder or worry about what his numbers might be. Surgery and recovery has definitely made a lasting impact on Luke, though.  Many times when we get in the car, Luke says “no ouch!” meaning that he thinks I’m taking him to get his labs drawn.  Every single time he says this, it breaks my heart remembering how scary all of those draws must have been for him.  I hate that it took so long to get his fluid in balance, but I’m very glad we have the “real Luke” back.  

Luke’s full recovery could not have come at a better time (well, I would have taken it a little sooner).  Luke’s little brother is coming tomorrow, so we’ve had a couple of weeks to settle into a rhythm without home health nursing.  It’s hard to tell how much Luke understands about getting a new brother.  He knows that his name is Sam, that he’s in my “belly button”, and that he’s coming tomorrow.  Still, this is going to rock his little world.  

We’re so thankful for everyone’s prayers through Luke’s surgery and recovery.  It’s been such a long road, but we’re so grateful that all the major surgeries are behind us now.  We continue to ask for your prayers as we bring Sam home in just a few days and begin to make the adjustment from a family of three with a sick little boy to a family of four with two healthy energetic boys.  I’m so excited about our future, and so thrilled that you all have and will continue to be on this journey with us.  

Blessings,

Rachael, David, Luke, and Sam (soon)

Happy FOURTH Birthday Luke!

Four years ago was an incredible, incredible day full of joy, worry, anxiety, and brimming over with blessings. Our heart hero Luke was born at 6:06pm. He was immediately whisked away to the NICU to begin his brave battle. Four years, three heart surgeries, two airway reconstructions, and countless other procedures, pokes, tests, and days of worry later, Luke is thriving. We are so grateful for everyone's support and prayers who have gotten our family to this point! Happy birthday precious boy!