It's been roughly a month since surgery. That's... a rough estimate, and a rough journey-- in some, but not all, ways.
Physically, Keagan is healing GREAT. His echo last week shows that his damage has gone from 59% down to 38%, and they expect within the next month, that that number cuts in half again, and then hopefully again once more within the next few months. As I've mentioned, there are still issues, BUT, his "risk" of major heart problems is well under 5% until he hits puberty. At that point, we may have some complications, but I've never felt more relieved that my little man is only 2 1/2. I know he'll grow in a flash, but having 10+ years of free and clear (fingers crossed) heart function is beautiful! This time a month ago, we had a solid chance of getting through the summer without any issues (by issues I refer to heart failure, heart attacks, and the like) and not much past that.
Emotionally, he is still recovering. He still has a fear of anyone wearing scrubs, and endures his check ups with a war-weary look on his face that breaks my heart. He's learning (and I am learning) how to deal with a boy who feels GOOD all the time, so there are a few more temper flares than usual from both of us, a little less snuggling (which I miss, but I can give up to see him flourish), and a LOT more time outs as he begins to moderate his energy with what is acceptable in public or at home. We're spending a lot of time at the pool, where he can splash and swim and get out tons of energy at once, and taking a lot of walks as a family to explore and stay active without acting like a crazy child.
His incision is still very visible, but has closed up completely and is healing well. The doctor suggested Mederma, or some other scar-hiding topical medicine, but we've decided against it. I personally LOVE his scar, even though it makes my heart ache a bit, it means that he's alive, and will continue to be. The jagged line across his back holds the same status to me as my c-section scar and stretch marks-- they represent the life of a boy who is infinitely precious to me and many others around him. Maybe we had to work a little harder and hurt a little more for him to get here and to stay here, but by the grace of God and modern medicine, he's living, and for that I am infinitely, wordlessly, tearfully blessed and grateful.
And so, on June 15, 2011, I claim for my son that we have walked through the Valley of the Shadow of Death and we have come through the other side. Just writing that, I get tears in my eyes, but I proclaim it as truth from the very depths of my being. We did not get lucky-- we have been absolutely covered in prayer every step of this journey, and I have no doubt that while I did not personally feel God's presence in the hospital room, and while I felt absolutely empty and alone, my baby was never alone and was cradled carefully in the arms of Christ from start to finish. For that matter, as I say that I felt alone, and I even struggled with feeling angry, I have no doubt that I was NOT alone any more than Keagan was, and that I was carried through this experience by a strength that was not possibly my own. Had I walked through this of my own strength, I surely would have fallen apart much more than I did, and I believe that Keagan, and also my unborn child would have both suffered greatly if I hadn't had to journey through for months before surgery to surrender the situation to God.
Wednesday, June 15, 2011
Friday, June 3, 2011
long overdue hospital recap
I've been turning this around in my head for about a week. I'm not sure why this post is tough for me, maybe because of the sheer volume of a post that I know I'm starting, and maybe I'm a bit post-traumatic after everything, and just now realizing that I'm not past all of it quite yet. I'm going back through all of my Facebook posts, because that's the only place I was updating at the time (I don't think I even answered many phone calls or texts, but I did get them and appreciated all the encouraging words).
We went to Duke the night before surgery, after some car trouble and just general insanity, and got checked in to our hotel. By the time we actually arrived out there, I had time to give Keagan his bath, snuggle him for a few minutes, and then we were all off to bed. We woke up around 5:30 the next morning (5/17, for those looking at a calendar), got ready, and headed out to the hospital. We checked in to the surgical ward around 7:30. Fairly quickly, we got pulled back into an exam room, Keagan got his vitals checked, a general exam, and then some pre-op sedation (nasty liquid sedative). He's had the medication before (before his cardiac MRI), and it made him very cranky, so I was sort of expecting that. This time? He was a total space case. I took a picture of him, and he (as usual) had to inspect it, and he said "I like that Keega, he a bug." Once the sedatives had kicked in fully, the anesthesologist had me put on the "bunny suit" and mask, and carry him back to the operating room myself. Their theory was that if he never had the fearful experience of being torn away from mom, he would go under more peacefully, and therefore wake up in a more peaceful state. It was such a long walk to the operating room. When we finally got back to the room, I sat him down on the table and crouched down to his eye level. As I kept eye contact with him, I just kept repeating to him how very much I loved him and stroking his cheek, around the mask, as the doctors worked to fully sedate him. Once he went under, I had this moment of hysteria and almost lost my mind. Even though I didn't say a word, I think the OR staff was assuming I'd freak out, but I kept myself in check and didn't say or do anything dramatic. I just kissed his cheek and left my entire heart on the operating table. I can't explain how that walk back to the room where my mom was felt. If any parents remember the first time they left their baby with a sitter.... it was like that... on drugs, and multiplied infinitely.
My mom and I went to get coffee and breakfast while they did the blood work and all the pre-op work ups. Finally, around 9:40, they started the actual surgery. They called out to the waiting room every hour, to let us know that everything was still going smoothly and progressing. After about two hours, they called to say they were starting to wrap up, and that he would be headed to the Pediatric Cardiac Intensive Care Unit (PCICU) when he was finished. We went to the waiting room on the PCICU ward, and around 12:30, the surgeon came out to speak with us. He said that there were no complications, the chest tube was in, and he was no longer intubated. He mentioned in passing that he was "making a little noise" (called strider) when he was breathing, so they had him on heli-ox, a mixture of helium and oxygen, to soothe his throat and keep his oxygen saturation up.
When I finally got to go back to see him around 1:30, his oxygen levels were low, his blood pressure was high, and he was hooked up to so many machines that I just felt like I couldn't breathe. Seeing my baby so pale and small, covered in tubes and wires and Betadine and blood... I fully understand how and why parents become angry with God over their children being sick.
He started to wake up off and on over the course of the day, although his breathing didn't improve much, and his blood pressure remained high. He opened his eyes when I spoke to him, but he wasn't really clear headed and present. We sent a request out over Facebook that evening, because the little girl in the unit next to us was very clearly passing away. She actually ended up going to be with Jesus shortly after we asked for prayers for the other family. I can't imagine the heartbreak, although I saw it.
Finally, after dinner time, he woke up, and wanted Daddy (who was on his way) and cartoons. He was constantly trying to pull his oxygen mask off (I think it made his face cold), so they had to keep him pretty sedated at that point. I went back to the hotel with my mom for the night around 9:30, leaving James to cover the overnight shift with him, in case he woke up and got scared. I didn't think I'd be able to sleep, but as soon as I laid down, I was out like a light. I think my mom said I was talking and just trailed off. Between the stress of the ordeal and being 14 weeks pregnant, I had nothing left.
Overnight, he was really agitated and in a lot of pain once the surgical anesthesia wore off. Apparently he spent about 2 hours just screaming and crying because his pain level was so high. The next day, he got his chest tube and arterial IV (in his neck) taken out, and again spent a lot of time in a LOT of pain. Nothing will make you feel more helpless as a parent than to not only have to see the pain your child is in, but to not be able to hold him and give him comfort. After about 30 hours of not holding him, once the tubes were all out, I felt a lot more complete with him in my arms. As soon as I picked him up and we sat back in the recliner by his bedside, he slumped into my shoulder and fell asleep immediately. My little fighter had no more pep left, from fighting and being in such a high state of pain. After he rested a bit, he took a walk around the unit, then spent the rest of the day in an extreme amount of pain, despite extra medications.
We had initially been told he might go home on the 19th, but due to his extreme pain, and the fact that he wasn't eating anything or drinking very much, they ended up moving us to the regular unit to keep observing him. He perked up somewhat, but was still refusing food and in a lot of pain. He was walking around more and talking more, although I still hadn't seen him smile yet.
He was improving fairly steadily, and after 2 days on the regular unit, with still no improvement as far as eating, and only a few minor set backs with breakthrough pain, we ended up being discharged from the hospital on 5/20. The doctors thought he would eat and recover better in his own environment, and we agreed that that was probably the case, although I was still worried. So we gathered up all of our stuff, checked out of the hospital and the hotel, and headed back to Fort Bragg. He ate a little in the car, slept a little, and seemed generally better as soon as he got to put his shoes on to leave the hospital.
I know I've basically skipped any emotion in all of this. I don't know what to say about it. I dealt through a range of emotions-- even when things started to go well for Keagan, I was just discouraged. I couldn't let myself cry in front of him, and when I wasn't with him, I just collapsed from exhaustion. I can't explain why I couldn't feel relief about Keagan's surgery going well, I was just traumatized from the entire exhausting experience, I think. My son went through hell, and I couldn't help him what so ever. I can't even say that I felt God during the days in the hospital, I just felt empty. I'm thankful that God answered all of our prayers, and now, seeing Keagan play, and knowing he's not a ticking time bomb, headed for a heart attack by age 3, is a sweet relief. I was telling someone today that we won't be using Mederma or anything to make his scar disappear. The scars he bears represent his life, just as much as my c section scar represents his life. We both bear the scars to prove that his life continues.
He gets better daily, though he's still tired a lot, and fussy at random moments, and his blood pressure is still a bit higher than normal-- though it's lower than it was before surgery. The wounds continue to heal, and we are hopeful that his surgery was completely successful and that he won't be in the 20% of children who have further issue after the repair has been made. We're still under close watch by the cardiologist, and will continue to be for an unknown amount of time. There are still some markers that show he's not at 100%, and as I have mentioned before, he did not get all of his issues in his heart repaired, but the major issues have been addressed.
As far as his neuro, we got his case transfered to Duke Neurology, and he will be evaluated by a neurosurgeon on July 20 (not FOR surgery, but if it's needed, it can be done with continuity of care from the same doctor). We are waiting for Tricare to process the paperwork for the genetics appointment. At some point this summer, we hope to have a solid diagnosis; whether his Chiari is an issue, whether he has an Autism spectrum disorder, what is going on with the chromosomal abnormalities, and what we can do about it. That's another uphill battle that I don't think can be easily resolved by surgery, but I'll continue to fight for the proper diagnosis for Keagan and to form a treatment plan to help him overcome his issues.
We went to Duke the night before surgery, after some car trouble and just general insanity, and got checked in to our hotel. By the time we actually arrived out there, I had time to give Keagan his bath, snuggle him for a few minutes, and then we were all off to bed. We woke up around 5:30 the next morning (5/17, for those looking at a calendar), got ready, and headed out to the hospital. We checked in to the surgical ward around 7:30. Fairly quickly, we got pulled back into an exam room, Keagan got his vitals checked, a general exam, and then some pre-op sedation (nasty liquid sedative). He's had the medication before (before his cardiac MRI), and it made him very cranky, so I was sort of expecting that. This time? He was a total space case. I took a picture of him, and he (as usual) had to inspect it, and he said "I like that Keega, he a bug." Once the sedatives had kicked in fully, the anesthesologist had me put on the "bunny suit" and mask, and carry him back to the operating room myself. Their theory was that if he never had the fearful experience of being torn away from mom, he would go under more peacefully, and therefore wake up in a more peaceful state. It was such a long walk to the operating room. When we finally got back to the room, I sat him down on the table and crouched down to his eye level. As I kept eye contact with him, I just kept repeating to him how very much I loved him and stroking his cheek, around the mask, as the doctors worked to fully sedate him. Once he went under, I had this moment of hysteria and almost lost my mind. Even though I didn't say a word, I think the OR staff was assuming I'd freak out, but I kept myself in check and didn't say or do anything dramatic. I just kissed his cheek and left my entire heart on the operating table. I can't explain how that walk back to the room where my mom was felt. If any parents remember the first time they left their baby with a sitter.... it was like that... on drugs, and multiplied infinitely.
My mom and I went to get coffee and breakfast while they did the blood work and all the pre-op work ups. Finally, around 9:40, they started the actual surgery. They called out to the waiting room every hour, to let us know that everything was still going smoothly and progressing. After about two hours, they called to say they were starting to wrap up, and that he would be headed to the Pediatric Cardiac Intensive Care Unit (PCICU) when he was finished. We went to the waiting room on the PCICU ward, and around 12:30, the surgeon came out to speak with us. He said that there were no complications, the chest tube was in, and he was no longer intubated. He mentioned in passing that he was "making a little noise" (called strider) when he was breathing, so they had him on heli-ox, a mixture of helium and oxygen, to soothe his throat and keep his oxygen saturation up.
When I finally got to go back to see him around 1:30, his oxygen levels were low, his blood pressure was high, and he was hooked up to so many machines that I just felt like I couldn't breathe. Seeing my baby so pale and small, covered in tubes and wires and Betadine and blood... I fully understand how and why parents become angry with God over their children being sick.
He started to wake up off and on over the course of the day, although his breathing didn't improve much, and his blood pressure remained high. He opened his eyes when I spoke to him, but he wasn't really clear headed and present. We sent a request out over Facebook that evening, because the little girl in the unit next to us was very clearly passing away. She actually ended up going to be with Jesus shortly after we asked for prayers for the other family. I can't imagine the heartbreak, although I saw it.
Finally, after dinner time, he woke up, and wanted Daddy (who was on his way) and cartoons. He was constantly trying to pull his oxygen mask off (I think it made his face cold), so they had to keep him pretty sedated at that point. I went back to the hotel with my mom for the night around 9:30, leaving James to cover the overnight shift with him, in case he woke up and got scared. I didn't think I'd be able to sleep, but as soon as I laid down, I was out like a light. I think my mom said I was talking and just trailed off. Between the stress of the ordeal and being 14 weeks pregnant, I had nothing left.
Overnight, he was really agitated and in a lot of pain once the surgical anesthesia wore off. Apparently he spent about 2 hours just screaming and crying because his pain level was so high. The next day, he got his chest tube and arterial IV (in his neck) taken out, and again spent a lot of time in a LOT of pain. Nothing will make you feel more helpless as a parent than to not only have to see the pain your child is in, but to not be able to hold him and give him comfort. After about 30 hours of not holding him, once the tubes were all out, I felt a lot more complete with him in my arms. As soon as I picked him up and we sat back in the recliner by his bedside, he slumped into my shoulder and fell asleep immediately. My little fighter had no more pep left, from fighting and being in such a high state of pain. After he rested a bit, he took a walk around the unit, then spent the rest of the day in an extreme amount of pain, despite extra medications.
We had initially been told he might go home on the 19th, but due to his extreme pain, and the fact that he wasn't eating anything or drinking very much, they ended up moving us to the regular unit to keep observing him. He perked up somewhat, but was still refusing food and in a lot of pain. He was walking around more and talking more, although I still hadn't seen him smile yet.
He was improving fairly steadily, and after 2 days on the regular unit, with still no improvement as far as eating, and only a few minor set backs with breakthrough pain, we ended up being discharged from the hospital on 5/20. The doctors thought he would eat and recover better in his own environment, and we agreed that that was probably the case, although I was still worried. So we gathered up all of our stuff, checked out of the hospital and the hotel, and headed back to Fort Bragg. He ate a little in the car, slept a little, and seemed generally better as soon as he got to put his shoes on to leave the hospital.
I know I've basically skipped any emotion in all of this. I don't know what to say about it. I dealt through a range of emotions-- even when things started to go well for Keagan, I was just discouraged. I couldn't let myself cry in front of him, and when I wasn't with him, I just collapsed from exhaustion. I can't explain why I couldn't feel relief about Keagan's surgery going well, I was just traumatized from the entire exhausting experience, I think. My son went through hell, and I couldn't help him what so ever. I can't even say that I felt God during the days in the hospital, I just felt empty. I'm thankful that God answered all of our prayers, and now, seeing Keagan play, and knowing he's not a ticking time bomb, headed for a heart attack by age 3, is a sweet relief. I was telling someone today that we won't be using Mederma or anything to make his scar disappear. The scars he bears represent his life, just as much as my c section scar represents his life. We both bear the scars to prove that his life continues.
He gets better daily, though he's still tired a lot, and fussy at random moments, and his blood pressure is still a bit higher than normal-- though it's lower than it was before surgery. The wounds continue to heal, and we are hopeful that his surgery was completely successful and that he won't be in the 20% of children who have further issue after the repair has been made. We're still under close watch by the cardiologist, and will continue to be for an unknown amount of time. There are still some markers that show he's not at 100%, and as I have mentioned before, he did not get all of his issues in his heart repaired, but the major issues have been addressed.
As far as his neuro, we got his case transfered to Duke Neurology, and he will be evaluated by a neurosurgeon on July 20 (not FOR surgery, but if it's needed, it can be done with continuity of care from the same doctor). We are waiting for Tricare to process the paperwork for the genetics appointment. At some point this summer, we hope to have a solid diagnosis; whether his Chiari is an issue, whether he has an Autism spectrum disorder, what is going on with the chromosomal abnormalities, and what we can do about it. That's another uphill battle that I don't think can be easily resolved by surgery, but I'll continue to fight for the proper diagnosis for Keagan and to form a treatment plan to help him overcome his issues.
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