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.
Rachael, David, Luke, and Sam