First and foremost, praise be to God for the healing that He has provided for Asher's little heart, and for the protection on her leading up to her surgery. Her coarctation of the aorta (CoA) was measured at 40-50, possibly 60 percent. Since the aortic artery is the artery that brings blood to the back and lower extremities, those areas were only getting 40-50, possibly 60 percent of the blood flow they needed. We weren't aware of how significant her condition is until we went for the MRI on February 28. They provided us a picture when we were doing our preoperative paperwork and meetings:
See that little area that looks like a balloon's been twisted? Or a sausage link? That's what she had repaired by thoracotomy. The official procedure was a "end-to-end anastomosis"; basically, cutting the coarctation out, and reattaching the ends together. What cardiologists tend to not tell you at diagnosis is this: the left side of the heart is fickle. Usually if one problem is diagnosed, more issues are discovered in the treatment of the original problem. Yay. We learned this little tidbit on preop day. So, the major issue with Squishy was obviously the CoA. However, she's also got significant stenosis in the sub-aortic valve membrane (gradient is approximately 30%), and mitral valve stenosis (gradient is about 11%). Obviously, the sub-aortic valve membrane is the next most concerning issue. We were told that they won't bother with that until the gradient is about 50% or more. Same with the mitral valve stenosis. They couldn't tell us if it would be months, years, or decades before she'd need surgical intervention again; our discharge cardiologist said in cases similar to hers, he's seen it progress to needing surgical intervention before school age.
Anyway, we came home from her MRI on 2/28. Baby girl was OUT of it the entire 3 1/2 hour drive home. She spiked a fever the next day, and we were back in the ER locally for a 102 degree fever. Full workup, X-Ray, all led to a "likely" viral infection.
We left for Little Rock on 3/2, since she was scheduled for preoperation workup on 3/3, and surgery on 3/4. Wouldn't you know, Little Rock would get hit with an ice storm after we got in, and the hospital CLOSED on 3/2 (what?! really?!) We got rescheduled for 3/5 and 3/6.
We made it to preop, and Asher had a ball, after the not-so-fun stuff was done. The thing I loved about ACH is that when a child walks in, they offer a wagon for the day. That girl LOVED her wagon rides all day.
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We were nearing the end of pre-op, and our liaison comes in our room and tells us we've been postponed until 3/7; a heart transplant had just become available. I can tell you, the whole thing felt surreal up to that point. In the midst of my frustration, it hit home that we were actually getting ready to do this. In a mere 48 hours, our baby-baby was going to be taken out of my arms, and her heart was going to be operated on. I nearly lost it.
Friday rolled around, and we headed to ACH for 5:30 a.m. registration. Thankfully, Asher had nursed as late as they would allow, and she slept until they started messing with her. I will NEVER go into another procedure without them giving her "goofy" juice, first. She got her dose of that, and was a little trip to watch. Up to this point, she had been crying and screaming when anyone in scrubs would look her way; after that medicine, she was giving the anesthesiologist and his team kisses as they carried her back to the OR.
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They took her back a bit after 7 a.m. We were then escorted to a family waiting room, where an OR nurse came and updated us on an hourly basis. The procedure itself got underway about 9:30 a.m.; in addition to the time for sedation and the incision, in order to access the CoA, Dr. Mitchi had to deflate one of her lungs. She was out by 11:45 a.m., and in recovery. We finally got to see her at 12:30. She had been extubated by that point, and was still heavily sedated, but now on morphine.
In the CVICU-Critical Unit, each child is assigned his or her own nurse, and that stays in the room with her for the entire shift. Ash's nurses were in awe of her, because she kept rolling over to sleep on her stomach-even when she was dosed up on morphine. It was such a shock seeing her the first time-tubes and wires and IVs and bandages EVERYWHERE. She had an oxygen line on her nose, but she pulled it out after 3 hours, and her O2 stats were steady in the high 90s, so the cardiologist said she could keep it out. As she was waking up, she became very distressed by even her nurse coming near her with a stethoscope; Honey came to the rescue and brought her a doctor's kit. She gave Daddy a quick check up.
Due to the severity of her coarc, she was unable to eat or drink anything for 48 hours after surgery. They had to allow her stomach and intestines to adjust to the amount of blood that was now being pumped into it. Asher is still nursing; all her doctors recommended that if I was willing to continue at least through surgery, it really would be the best thing to introduce into her stomach post-surgery. I pumped daily beginning the morning of surgery, and Sunday morning, she had her first 2 ounces of expressed milk. She took that like a champ, kept it down, and was given the clearance to nurse again. 50 hours post surgery she was off the morphine, had her Foley cath removed, her chest tube was removed, her bandages were removed, all but one IV was removed, and she was off ALL blood pressure medicine!
Finally, we got to move to the step-down unit. The staff brought her a wagon, and she began her campaigning for "Miss Cardiology". We would pull her around, and she'd give her little pageant queen wave, and would blow kisses to all the staff and families. She had them all in stitches with her cabbage patch hat!
At ACH, the staff participates in a "Beads of Courage" campaign. On the cardio floor, patients earn a bead for each procedure they have done, and can string them together on a lanyard. The beads and lanyard go home with the patient when they are discharged, as a reminder of their story at ACH. We haven't put Ash's together yet, but she got to choose her discharge bead for herself, and she chose the biggest, loudest, most obnoxious bead in the box!
On 3/11, four days after surgery, Asher was discharged. It was a GREAT day-70 degrees, sunny, and best of all, our little warrior RAN out of that hospital! She came home on one medication, Lasix, a diuretic. We followed up with her local cardiologist, who gave her the "all clear" to venture out in public, using common sense, and did a thorough work up. Her chest Xrays were clear, her EKG was perfect, and her blood pressure was 92/62-within the preferred range! He does want to continue to see her every 4-6 weeks to monitor her valve issues.
That's her journey, in a nutshell. She has bounced back beautifully, and her incision and chest tube area have healed-no more scabs. The incision is still pink and raised, but they said that once the swelling subsides, the actual scar should only be a few inches long; it curves around her shoulder blade, so it shouldn't be very noticeable, if at all.
Her future prognosis is good-she'll be able to play sports, dance, whatever, with the exception of activities that place a lot of stress on her heart (i.e. cross country running, power lifting, etc.) If the cardiologists determine that surgical intervention is needed for the valve issues, she'll undergo full open heart surgery, including the bypass machine. I know our God is big, and He is in the miracle business. If it's His will for her to go through those, I trust His Ways. I choose to believe that Ash has gone through all of this so that all of us, especially Asher, have a testimony to share with the world about the Power and Glory of God. If her journey leads her more surgeries with more scars and more stories, then those moments will be opportunities for her to share how God gave her the strength to persevere. Since we've been home, we've been doing a LOT of praising and worship. The song that I always revert back to is a praise song we sing in church, "This Is My Story". Ash's favorite part goes: "This is my story. Tell about my Savior, show the world His Love. I just gotta shout about it, I just gotta sing. I just gotta let it out, His Love inside of me!" And that's exactly what we are doing.
This is a display board that was posted in the CVICU area. It has facts about CHD for visitors and families to see while they are on the unit.
CHD research is grossly underfunded. 1 in 100 babies is born with a CHD, and CHD is the leading cause of death in infants. Annually, 1,000,000 babies are born with a CHD, and nearly 100,000 die before their first birthday, and thousands more die before they reach adulthood. (Source: http://www.childrensheartfoundation.org/about-chf/fact-sheets) As much as I love to support other charities and children's hospitals like St. Jude and the Shriners, as a "heart mama", I can't anymore. Those charities have the national exposure for funding and searching for cures. CHD doesn't. If you would like to get involved in a worthy cause, but don't know where to start, the Children's Heart Foundation (www.chiildrensheartfoundation.org) and the Arkansas Children's Hospital (www.giving.archildrens.org) are two great places to start.
Much love,
Kristin
Psalms 147:3 HE heals the brokenhearted, and bandages their wounds (NLT)
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