Is being intimidating bad


16-Nov-2015 09:03

We appreciate your prayers, support and words of hope during this time when it matters most. I had to travel to KY and I woke up in my hotel with this experience that something happened in the night with Archer’s being off the vent. I called him and he told me more, and when I got back that night, he elaborated even more still charged up about it many hours later. Archer had no symptoms of distress or impairment with his breathing. He had been off the day before for 4 hours and he was scheduled to go for 8 hours. The RT began the chest percussion per the usual and then used the inexsufflator. Still wearing her sterile gloves she guided the catheter down into his lungs. We usually do a quarter to a half of the bullet, sometimes a full bullet, in the suction session. They went down again, and unlike just minutes before, the suction tube began to bring up thick mucous, a lot of it. The RT continued to go down, it had been about 40 minutes of non-stop suctioning, Archer coughing as hard as his diaphragm would allow, and each time as his body writhed and Billy held both very strong now arms down at his side as if in a straight jacket, per Archers request, he was, Billy said, just sort of growling and then…. We both started making calls, and then Billy and I got our children in on the research project and we came up with a couple viable options, one of which was Yellow Cab. This time, it was a rear entrance ramp that folded out for Archer to roll in and out on. as the top of his head grazed the inside of the taxi van, barely enough inside height, but, as we said and laughed, It’ll do ya, donkey. If he does, we’d revisit that of course, but he so wanted to be off of all pain meds and narcotics. I really thank God every day for that because imagine what Archer could be doing or thinking or feeling about himself, his life that could be very dark and negative and ruined. They go out of their way to visit him coming downtown to a part of Baltimore that does not have a great reputation, but is quite safe it seems thanks to the security folks KKI has patrolling outside. That clarity emerged as I asked again what I had been asking for at Shepherd and what I had been asking for at KKI. In that meeting as the words betrayal came to me, I also found the language, finally, that I needed for the request of ….a Trauma Psychologist. So, I wanted to share with you about progress, one step forward, two steps back it seems, but it will get better. Please pray for our medical caregivers and for us that we can sustain ourselves independent and together through the tension and conflicts of different experiences and different worldviews as we all remain open to the possibility of influencing each other positively. Archer has had in his first 17 years of life the experience of the walk in the woods, the walk along the beach and the hike in the rocks and mountains. And, Archer, again has been on the blunt end as a recipient of standards that did not help him, and potentially harmed him. This trip he had no drugs to knock him out in any way shape or form. His surgeon tried to get the fragments out of his spinal cord as best he could and believes he did. Mo, one of this medical techs said, Archer, you have a really good gag reflex! There is a certain quality of pause and take it all in. Sadly, Archer suffered in a number of ways along the last 5 or so weeks when some of the rehab team lost hope or did not believe in his progress there or just lost interest in his progress with a view that the inability to breathe and all that was necessary for him daily was something that just got in the way. We are so grateful for those caretakers at Shepherd who have been cheerful and patient. I really believe that that is a way Billy and I can view Archer. I’ll go back to the morning round with the pulmonologist. But as for feelings of disdain and disgust, I want to guard Archer’s spirit against the ravages of such mean emotions. I told him it was good and not to be afraid and they would subside and that it was ok to shake as long as he needed to shake. Everything I know is being called upon with this Archer experience. I was filled with gratitude that Archer had that experience. But at the end of the third (not bad) deep suction of the night Thursday, as the respiratory team of 2 located the pockets of packed in mucous in his lungs and Archer worked hard to break it up and expel it, I was encouraging Archer and the staff was too. When he had coughed up the last of the bad boy mucous plugs, at least for then, I said, Arch, you are doing so well, honey. When Archer’s counselor came for her round Friday morning to collect him, the hunch I had was confirmed. How much more grit could be summoned when the going gets tough(er) if we only knew the promised outcome. The stim is not for pain per se, but I think it actually provides a new lens of hope. So, I consider it part of his overall pain management program. I think its status should be elevated in hospitals around the world.The road ahead is long, but we will be with Arch every moment of the way. A most amazing thing happened with Archer last week. It is an absolutely positively outstanding, even chilling, story. Some thick stuff came up, not a whole lot but thick. out of Archer’s lungs rearing up through his trach came the longest ever in history plug of mucous. It was way too big to slither through a 14 French catheter, but the Catheter had broken part of it up, enough that Archer was able to cough it up just enough to see it in the top of his open trach in his neck. Using the strong suction of the 14 French, the RT coaxed it out, and out slithered a full 7 inches long, dark brown OLD very bloody solid mucousy dark yellow brown plug bigger than anyone had ever ever seen. Things are happening now that Archer is moving off the vent. It was the work of his own breathing and strong diaphragm that brought that Growler up. It was a huge growth moment for her as she was one of the tentative RTs when we first arrived, afraid to go down when Archer so desperately needed her too, and part of the reason for the weeks of set back. The front two bottom braces of his powerchair were attached to two large retractable seatbelt like straps. Once in, the back two bottom braces of his chair were attached by large hooks and locked into place. We had the same desire and, with regular pushing of the issue, our medical team began weaning him. Thank God we never had any heavy doses when just about every facility recommended bigger doses just because of being a quadriplegic. Instead, he is genuinely happy to be alive, he is resilient and he is grateful and determined to live. FT, Family & Friends Therapy, is still the highest medicine. The friends still come too and come back, even when they have had to wait in the lobby, since Archer’s visitors quotient is still limited to no more than 4 at a time unless Billy and I are both there and can take him down to the lobby. The procedure; I did it with him, hurt Archer a lot. I could also see the angry aggravated Oct 4 stitches that had never healed down in the stoma hole. It was really really surprising to me that when back at KKI, I tried to explain to the behavioral therapist, who was lovely and whom we like very much, about the importance of confidentiality in a therapeutic relationship for Archer, as I saw it at least. Someone schooled in the body, in trauma, in the chakras and the meridians of the body preferably. Billy and I desperately seek the wisdom of those with expertise to create a thoughtful and wise plan. There is a lot more to recovery than just the medicine. They briskly wheeled him down the Shepherd hallways as we made our exit –the same hallways I had marveled at as we made our entrance holding as we did so much hope two and a half months ago, to the day–and then up and into the ambulance van. He had a new antibiotic bacteria given from what I could tell preventative my since he had a high white count yesterday. Whoever you were on Earth and are now, I am so very grateful to you for giving Archer your hip bone to replace his shattered C5 neck bone. That is the ultimate gift of unity, to give your body. That Archer had is a donor is a very important part of Archer’s medical history. I’ve always wondered if there wasn’t some part that no one could get that shattered higher up causing the C3 level as well as C4 level of injury. He had more clogged in his lungs just since the 5am suction. As if he has a talent like one of those potential Olympic athletes that has to be taken care of in extra ways. He will achieve because he will work hard and be dedicated to excellence. Imagine what he will do when that chemistry of teacher to student is made. Before he left our room in the early morning rounds, I asked if he could do another vital capacity test. I think we should all guard our spirits against these actually. Then his shoulders and chest began to really shiver, and then his lips and face. I put both my hands on the back of his shoulders as support and let him shake. I was also so grateful for good teachers and knowing what was happening so I did not panic or shut Archer down. First of all, we were a bit discombobulated as I had asked his nurse and tech after a am suction session if they could be sure to get to Archer earlier that usual since his OT was scheduled at 9am rather than the usual am. We will have a medical meeting on Tuesday to lay out what is necessary to wean. It’s actually the bridge we can stand on between the known and the unknown.Right now, Archer is paralyzed from the top of the chest on down. Billy said it was like pulling the devil out of his lungs. It is the vent and the pressure of the vent that kept it inside his lungs. This was a work of your majesty with everyone doing their part, and doing it well. As I write, I think there was actually something redemptive for her as I think about it. It was the same set up I am sure for hauling a motorcycle or scooter or other piece of equipment, or horse… Archer had just received a wonderful present from old new Atlanta friends who managed to locate a hat by the same brand as the hat Archer was wearing on the prayer card. We have done that now for Arch three times since Christmas, but it’s not quite the same as allowing private and free time for the kids to spend time with each other. The RT told me, I have never seen a trach change as hard as that in my entire career. I noted that her role is to motivate Archer, and that he really doesn’t need motivation. But we cannot operate under a regime that holds Archer down under their thumb due to ignorance, nor can we operate under a regime that has limited beliefs and hopes. And, it’s really hard to come home believe it or not. Perhaps if I notice any hardening now, I will not wake up one day and realize it before it is too late to make sure I’m not an old grizzly woman. So, when Archer desaturated Tuesday morning of this week, their assuming the worst lens had them react by calling the Baltimore City Fire Department who showed up in Archer’s room to transport him one block to the JHU ER. Archer’s lungs are going to do some miraculous things. Now, the other side of the craziness is that in the lower right lobe now is something new. Archer had turned a miraculous corner right before our transport to Baltimore when he all of a sudden at Shepherd blew consecutive tidal volumes of 800, and tolerated his PSV moving from 20 to 15 to 13, PEEP of 5. I watched the team of four swiftly and carefully move Archer from his bed onto their stretcher by lifting the sides of his linens to form a sheet harness and then swiftly strapping Archer in. I said to Archer a few times, You’re doing great, bud. It has been making him nauseous since noon yesterday when they started it. What flashed was a thought about new beginnings and Archer’s donor. His impact was so great that his neck bone shattered into pieces. The donated bone is now fused to Archer’s C4 and C6 neck bones for stability. Since I was 16 and got my license, I always checked the donor box. I was still standing outside to see Archer inside the narrow transport van surrounded by a team of 3 medical staff squeezed into the tight space when he began to need oxygen and a suction. Please help us be on the lookout for that match for him. We are excited about KKI with the hope that his schooling, which gives him energy rather than depleting him of energy, will happen on a daily basis and be supported as part of his overall therapy and well-being. And the architectural and project management help we are getting on our home accommodation needs is wonderful. If you are feeling disdain towards anyone, let’s provide for each other a safe and loving space for the discharge of the emotional energy that fuels disdain, so it doesn’t get trapped in a cycle of cynicism or a lifetime of future bitterness. Trauma carries trapped physical energy that needs a safe way to be released. On Thursday I wanted to check to see if we were still on track for the inexaflasor which Archer was promised could be used 10 days ago this Monday which will help with respiratory. It takes 90 minutes to sponge bath but two hours to do a shower, get dressed, hoyer lifted out of his bed into a power chair, fed, meds by mouth and crushed into his feeding tube line, then air removed from the PEG line etc. It’s not that he needs them so much since he doesn’t perspire below his chest. It’s important in this process to pick pieces of what we need to do and focus on them. Another pain management tool we are using everyday is the TENS, also a gift, thank you, angel.

is being intimidating bad-43

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This page is dedicated to the progress and recovery of our 17-year-old son, Archer Senft. And when we do both, it allows us to gain insights, and often leaves us infused with hope that strengthens us in both the present moment as well as when we look to the future. And Archer’s lungs are a big part of the light and brightness. This time, so as not to wear out the generosity of a transportation angel, we tried an alternative method, a taxi! I thought for a moment and told them all that they could begin with an apology to Archer. The RT from Shepherd was the first who leaned forward immediately and said, I will! She hesitatingly said she would but with no one else around. So, that and the who’s in charge issue remained unresolved as we saw it in our large group meeting. The JHH experts put forth a pulmonary toilet cleaning plan for Archer that was not the random approach we had had since arrival. It feels like maintenance to us, and as if that is what is expected long term. Now at KKI, after a week what felt like stonewalling, I blew. My shift in attention allowed my mind to remind me that he will have other just as wonderful experiences. The place of my own healing is not to move on too quickly but to pause and feel fully the remorse and despair I have for Archer. You walked along the beach in the shallow water of the ocean. The first and chief among them is that I needed to come home; Archer is not my only child. I am a mother to four other wonderful children who have been amazing. Dutch can only go so long without a mom on a regular basis. On his own, without his therapists, without his caregivers, without Billy’s or my presence…. I am not sure that is understood fully by our good caregivers at Shepherd. Thank goodness for Archer and requested meetings, difficult as they have been. So, back in the room after PT, the respiratory therapist/ educator came in. Well, I had to chuckle when he literally looked like Santa Claus tippy toeing out of the room with a plate piled with cookies and confections at least 6 inches high I kid you not. He will produce things : music compositions, play lists, comical character sketches, key lime pie or cheesecake or other desserts with a perfect peel of lime or dust of confectioners sugar, all things that make people feel good and happy. Archer can make just about anybody smile or laugh with his wit, often embedded in his carefully drawn drawings or graffiti or logos. Archer has many friends, boys and girls, he is close with from grade school and new friends from high school. the twitching of his left arm, which can be rather dramatic, moving as it might on its own, even during times of rest. Whether people doing or saying things to be funny also have an intention to be mean or not, the effect can still be hurtful. So, if you happen upon someone who is spinal cord injured at C3-C5, please know there is a tendency for the arm to want to bend at the elbow with the wrists drooping down. But I was so grateful Archer could tell me where he felt vulnerable. There is no way even the lionhearted could fight this alone. For fortitude and not giving up while the unknown takes shape and unfolds. It truly is comforting as there is no way to do this alone. There have been times just in the last couple of nights when Arch clicked for me and I knew he needed a deep suction. He’s so wise that he has figured out how to stay ahead of it and just what alternative to drugs modalities work and when to do them. With that, Archer looked at me and wryly said he’d take another sweet potato. The side of him that produces piles of picked crab after the rest of us have finished our picking and on to just beers and onion rings that he will then save to make crab soup the next day for us, that side of him that spends hours on producing those beautiful pencil portraits so well done that on first glance you know exactly who the person is and it is hard to tell the photograph from the portrait that he subsequently gives away, that side of him that has him selecting the right color tie or bowtie to complement a blazer, going around the house in all the closets of his brothers and Dad looking for the just the right color that has us all remarking on his dapper look, that side of him that sketches graffiti designs that each have a theme and are perfectly exacted in their lines and spacings and that make us laugh with their clever message, yes, it occurs to me that that same attention to detail and commitment to do it right and desire to make others happy will hold him in good stead as we continue the battle of respiratory. But back to the pain management for a moment, we rely on a gift from one of Archer’s Baltimore angels who sent a neuromusculature stimulator, both of which Billy and I have been shown how to use by his OT. It’s kinda weird really if you don’t know what I’m talking about.– Click Here We have added a DONATE button to the top this page. And if someone is thanking you, allow yourself to receive it fully. And for the RT’s listening when there were no other signs. Let us be thankful for our ability to use our ears in conjunction with our hearts, our intuition. I think it’s the way God finds his voice in my soul. KKI and JHU do not operate with the same philosophies either. Even if it does not come to pass for a long time and after a lot of hard work, it helps. As I’m thinking of it, please come visit him here in the PICU on Orleans Street where we will be til Monday or so. Since we are home, you may not think about writing him since he’s right here, but he is still in a facility in a fairly primitive condition and not yet hooked up to the Internet or his phone on any regular basis. Please address any cards or correspondence to our home of course where a basket is on the front porch, or to KKI: Archer Senft, 3rd floor, Room 316 Kennedy Krieger Institute 707 N. I know we were surrounded by angels both earthly and heavenly. We’ll be picked up at 6am by Medflight crew and on an air ambulance jet am-am to Baltimore! But now a second time, it felt to me as if something within Archer was forcing it off. He asked me to wipe his face, then get him a new warm towel, then wipe down the back of his neck, then remove his headband that was so wet I could honestly wring it out, then straighten out his left arm, then put it very close to his side, then place his right arm to rest across his abdomen, then remove the thin blanket from his body, then adjust his pillow to pull it down to his shoulders, then lift his bed a fraction, then push his hair off his forehead, then tuck his long drenched hair behind his ears, then check that the ventilator was secured well on the trach. I believe and I know that it took incredible courage for him to believe he was not drowning again when he went for his first hour off the ventilator and oxygen tank. What saved Archer’s life was his holding his breath. The respiratory therapist/educator said to Archer, Let’s do it again! It’s a heck of a lot better than waiting until funerals. We can’t begin to eat them all (you know what I’m starting to look like). So last night one of the male techs working on Archer whom I haven’t seen in a few weeks was assigned to us. It might be helpful for everyone on Archer’s team to know a tiny bit about Archer the young man. He held that post at 16 and turned 17 two weeks before his injury. Archer is a hard worker and puts up with a lot of physical discomforts. Archer has been deaf as a result of cholesteotoma from 3-12 yrs of age with annual surgeries lasting 4-6 hours at Johns Hopkins where they’d have to drill through his mastoid to the middle ear to scrape, rebuild and later to implant, as a team of general anesthesiologists worked alongside this tedious surgery. After each of those surgeries for six years, Archer was required to lie very still for 3-4 weeks and not move for full recovery. As a result of the cholesteotoma and last surgery, Archer’s nerve in his face for taste was severed. Archer is a straight A student, taking AP and Honors courses in high school, even as a sophomore, working on very difficult chemistry, calculus, physics, history, government, English literature, Spanish, advanced drawing and painting that he works to master. Ever since the meeting and I wrote the longer letter, Archer’s team has been exceptionally kind and encouraging. I pray I was a good mother and did the right thing. Please say a prayer for us that we are doing the right thing, that Shepherd is doing the right thing, and that Archer will be Ok once we leave Shepherd, headed for home, with a stop at Kennedy Krieger Institute who will care for his respiratory perhaps in a way Shepherd was not able, and that Archer is confident of his caregivers both familiar and unfamiliar. You read what the baby needs by his face and sounds in many respects, and I might add that most of the work and care is love. That person was kind and competent enough that you entrusted them with your most important matters, your child, your livelihood, your peace of mind that something very important to you was being handled well and handled with great care. It’s always been this way for me as long as I can remember. My Lord, it takes my breath away again to just imagine needing that many calories more than the feeding tube just to breathe and cough up the gunk in his system. During the sessions, the person standing on the left side of his bed, who is either hand squeezing with two hands the large manual oxygen bag or snaking with both hands the long vacuum tube down Archer’s trache into his lungs, is in danger of being involuntarily struck. Archer is adamant that I or someone strong hold his left arm down. It’s been 60 days after that quick dip in the ocean.Please use that button at the top of this page if you want to make an online donation. I realize as I write and hear about Archer’s Growler, that it is not the first time analogies of strong feline like qualities are attributed to Archer. But Shepherds and KKI’s could not be more polar opposite. And, you may have been wondering—I know at least some of you have been asking yourself because you have asked me—so when is she (Louise) going to blow? And Please come visit at KKI where we will be until January 6 or so. Broadway Baltimore, Maryland 21237 So, it’s been a bit hard being home. We are now traveling with the loud siren through town from middle river to KKI. Then ambulanced by ground to Kennedy Krieger and Johns Hopkins. The fire is manifesting within and Archer Senft is cooperating with something big. One after the other, each with an end, a move towards my only warm place chair bed, my asking, You ok? His body is deeply notched now to want to do that for life. She coached Archer through it again, and this time he blew an 800! I let him know to please help himself to some of the treats I had added to the food basket. Hopefully it will regenerate itself by the end of his teens. Archer is gifted, rises to a challenge and is intellectually stimulated. Archer has been commissioned by adults for his artwork. He has already experienced work that is very fulfilling. Archer has not participated in some activities and has participated in others. Archer is confident with manifesting his imagination. We need to work together to do all we can for this lionhearted boy so he can begin again. Oh, to have confidence in those who care for us, those on whom we rely. How critical it also is to have caregivers who genuinely want to love you and do what is best to take care of your basic needs and as well as your other needs. It allowed you to have the ability to do other necessary things without anxiety; you trusted them completely, you knew and believed they were good for you, your business, or your children because they cared about their welfare and acted on that care. And there would be real and not imagined floundering around for awhile trying to figure it out and reestablish some homeostasis. Whether as a small child before gradeschool days in a make-believe house under a coffee table in the living room, or a platform tent for summer camp, or a dorm room in college, or an apartment or house rented or owned, I am a nester. So, Archer’s initial request during suction sessions that I simply hold his left hand in place has now morphed to a straight jacket grip out of necessity. As for comfort, we look to God and Mary and Jesus and the Holy Spirit and the angels and the saints, that’s for sure. The strength it takes to ask for help is really significant. So, Archer makes it easy really, even when I think I’m about to drop through the floor with exhaustion. My God, thank you so much, so very very much that our precious son is alive.On August 5, 2015, Archer broke the C5 vertebra in his neck while swimming in Cape May, NJ. We had asked KKI if they could assist us with transportation for the TLOA and we were told it was not something they did. I asked the medical team from KKI and the PICU assembled, Do you possibly expect him to trust anything you do? But they shouldn’t if it were not very sincere and very heartfelt. It was clear, It also changed dramatically what Shepherd had been doing, but it was a plan. But we will consent, happy for a clear plan made with those who are knowledgeable and made with the caveat that we will revisit it. No one in this equation wants to cause harm I know. Archer is awesome and despite all of this, he rebounds. It’s been two very difficult weeks thus for both Archer and me, and by extension Billy and everyone else. Yes, I still have essential oils in Archer’s KKI room and orchids and water elements and other goodies. He will never be close to nature like that, able to walk on the sand, in the woods, on a rocky crevice. You hiked into the woods and along the bogs and stepped over the fallen logs and felt the crackling of twigs under your feet. A household can only go so long without a mom if you know what I mean, even when others have helped us so much, and Billy has done a great job holding down the fort. Moms hold a lot of things together, the detailers of life. being off the ventilator for a full 60 minutes yesterday and today. While he reported it is hard as each breath is very labored, he said, Yes, to the possibility posed by his pulmonoligist and he did it. And as you do, ah yes, there it is: your even sweeter breath. There are differences when someone drowns and the weaning process. Billy and I know Shepherd was the right place for Archer. Archer wanted to have an albuterol treatment and to be suctioned out first. She coached Archer on what to do with his big breath and how to blow it out. He is known for being philosophical and thoughtful. Archer will go to Mass on his own whether biking on Saturday evenings in the summer or get up on his own at home. The first time I saw him agitated about this upon my arrival back, I smiled and reminded him, My love, it’s actually good because your body is raring to go and just waiting to do what it wants to do naturally. But the fact that he does not like it now brings with it more need for us to be both aware and present to help put his arm back in place when it gets spastic. With all the other stuff he has to work on, work towards, and deal with, he is now experiencing embarrassment. I had a flash of this boy when I was in grade school being mean and cruel as he taunted some other kid making fun of him as a spaz, with an arm bent at the elbow and a wrist drooping. Maybe because their Moms didn’t stop them in the act of winding up to be mean. And, while the creative miracle is happening, if you happen to be with Arch when his arm spasms or chicken wings, I believe he would be grateful for your kindness in straightening it out for him. It occurs to me though that his embarrassment about this new state of affairs heralds a new opportunity for Archer: self-compassion. It will take supernatural strength to not cave under what he has to bear. If there is anything large you think you can do on your own, think again. Actually as it turned out, he just needed me to straighten his arm two different times, once for a hit of 100% oxygen and another time to pull up his pillow. He does still take once a day a very low amount of hydrocodone but all the other times he relies on other things. I find alternatives and he then figures them out for him. But when she was saying, Archer, how about a smoothie, ice cream, milkshake? I turned to Arch too and said, C’mon, Arch, really? So the hospital has now certified us, but not the nursing staff, to use it if we choose. If I put the electrode lead patches on my wrist, for instance, which have wires attached to a machine that administers little electrical impulse shocks, and I begin to turn the voltage up, stopping at a point where I can’t tolerate it anymore, my fingers on my hand will begin to lift and outstretch without my willing them to do so.

After working the lunch rush in the kitchen as the cook at the Beach Club of Cape May, Archer went down to jump in the ocean and cool off before returning to clean up and get ready for the next day. Luckily, Archer was surrounded by capable and caring lifeguards and friends, and he was quickly taken to Atlanticare Regional Medical Center in Atlantic City, NJ. Archer continued to work very hard coughing as hard as he could to help bring the gunk up. It was yellow and it was streaked with blood, something else that is not common for Archer. The mucous was so thick they had to switch out the 14 French sterile suction catheter kits four times because the catheter was so clogged. But that did not make sense to me, since a mere day prior they had said that a great number of their population served were families with little means. You have done this to him, and it will carry over to other medical situations. The contract pulmonologist again rose to the occasion when she asked, What can we do to gain back his trust? It is to provide Archer more respiratory support at night, putting his vent setting on 10 rather than the 4 KKI has it on during the day (we had had 0 before). The idea is to give Archer better sleep and health and to allow him to awake rested, perhaps for the first time. And the JHH contract pulmonologust said Archer will always have lydocaine or any other anesthesia at his request. But there was an unrealized opportunity at that meeting for KKI. I have gone the emotional gamut in a day from relief to tight to fight to exhaustion, from anticipation to wonder to questioning to disappointment, from acknowledging reality to feeling let down, to anger to betrayal to blaming, to feeling shame and, I suppose, to feeling defeated and despair, and then feeling the hopefulness when I remind myself that we will rise from the ashes again. I am now using Frankincense this time as I feel that we need to feel higher presence. Nor will his power chair ever be able to take him to such places on such surfaces. You hiked the rocky reface and had to keep your balance and felt the exertion of climbing and the exhilaration of looking out onto a vista below, the fruits of your climb. Each time in the last week I would sit down to write you on my phone as I do, my language was spewing and scathing. And his oxygen saturation rate remained at a steady 99%. Archer is on the move to that much closer to his number one goal: to breathe on his own. His lungs can’t yet allow the necessary 1000 and he can’t yet sustain the necessary PSV of 10, but he still wanted, as he said, To go for it and see. Differences that require good mental health attention and a gentle medical course of action. Even though he hasn’t reached all the numerical indicators normally needed to begin the weaning process, his body is giving us clues and signals in other ways, and I think, in other big ways. It would have been a great tragedy for his recovery had he left at that first discharge date. Archer has inner strength and a relationship with God. Upon a little further inquiry with Arch about it, though, I realized it is more than that. Billy and I are sure that Archer’s stoicism for the past two months has been in large part related to grief as much as to pain. Imagine if you were in a straight jacket let’s say, not able to do anything for yourself, plus you couldn’t talk but your brain and all head functions were still sharp and alive. The expression on Archer’s face as his left arm spasmed and he tried with his shoulder to wrench it back in place to no avail was utter disdain. I felt delirious when I was straightening his left arm for the second time, I was so dog tired. He is very much in charge of his recovery and is very committed. The night before last, one of the nurses tried to convince Archer to order anything he wanted to eat since we are concerned about his caloric intake and how to increase that short of stimulant drugs offered to make him hungry which Archer doesn’t want, and that’s our preference as well. I know you love smoothies, and all the times we’ve gone to the Smoothie King…. Our research a couple weeks ago, aided by another local Atlanta angel, on what foods create mucous secretions and which foods to avoid, had dairy on the list of what to avoid. Like a lotus flower opening in slow motion photography.Please keep praying for Archer to recover; we are storming heaven! And, I think it fair to say that KKI is inspired by Archer as well. We know you feel it with us and we thank you for every time you join with us on this journey. Again, the miracle of the body, especially when it is allowed to function as intended. On the other hand, Archer and friends can do the hanging out in the lobby, but by KKI rules, both Billy and I have to remain with Archer, so it’s not quite the same either. Now fear, heightened defenseless fear, has turned into no trust. Then the trach change here at the PICU with the best Respiratory Therapist you have, who has the most experience and has done 100’s of trach changes. I asked her to whom does she owe her duty of confidentiality. The closest you have offered was a potential psychiatric evaluation. A plan that is bold but gentle, that is clear and takes into consideration what we already know so that medical staff in one facility do not need to panic and over react. Now that we are back, at least for me, I am absorbed back into regular life when life is not regular. We have experienced JHU Pediatric ER, we have experienced and continue to experience the PICU. They say it’s dried up stuff that is stuck very deep in the lungs and throughout the many many tubes in the trees of the lungs. While it was probably premature and wiped Archer out, we knew he had the capacity. I know there is a piece of reality that we should be grateful if he merely graduates with his class, and we honor that. But all these amazing events will help, every contribution helps and we are just so very grateful. He began to walk out of the room, and I then asked if there are other numbers between 20 and 15. It’s harder for him to breathe now because there is more pressure on the lung, but he is tolerating it. he wrote his name for the first time and Dear Mom as his first writing! The idea that God calls us each by name is because we are unique in all the world. With just a little effort, if we can remember to call someone by name. We love when someone asks because we know they care enough and we are about to get the big payoff: they will call us by name! A little bit of time passed and then I told Archer he can expect these spasms as part of the injury and also as part of the recovery. The nausea has begun to affect however even his suctions as he refuses the saline during suctions as well. It’s no different than when you were really little. And we are also in need of prayers to sustain us through the not knowing. The TENS plus the excrutiating trigger point release procedure that his Doctor had done on him have all benefitted him.



Over the builds, we have been amazed by the progressive technological improvements and the true capacity of the machine to auto-improve itself.… continue reading »


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