I haven’t written any blog posts in a year. To be honest 2018 was an extremely challenging and humbling year for our family. We came out of it stronger in our faith, more grounded, and grateful for our family, friends, and church. However, I have been struggling to put into words all that has happened. Here is a quick summery, and i will be doing more detailed post soon! The first big event was the birth of our third child, our beautiful daughter Anika. Like her brothers, Anika wanted to come close to her due date, and fast. I had my first contractions at supper (I was craving steak and Brock bbqed a good one!) and she was born at 10:42pm. By body needed a bit more recovery than with the first two pregnancies, and the up-at-all-hours nursing seemed to be harder as well. I suppose it was with three I was needed by at least one child, and often all three, at the same time. There were no ‘sleep when the baby sleeps’ naps with this newborn. Anika has proven to be stubborn and silly, the clown of the family and all-star eater. She was born with a full head of hair and it has been a defining trait so far. Next, Braxton entered kindergarten in September 2018. There were months of planning, meeting, and organization to get Braxton into his neighbourhood school. Honestly, we didn’t know that this was the best choice, but our school board wanted to have an inclusive model and not send Braxton into the special needs school in Calgary. I think gong show is a nice way to describe the first weeks of school. Although the teachers and aide and school did their best, they just were not trained or equipt to teach a child like Braxton. There was no nurse supplied by the nursing agency, and so I left Zander and Anika and went to school every day for 6 weeks to be Braxton’s nurse and bridge the gaps in understanding Braxton’s needs. I can see now that I came rolling in with very high expectations, but honestly I will always advocate for what is best for Braxton. At that same time we were living with grandmas because our house was under renovations. That is for the next post, all the trouble our contractor caused. But to put it lightly, we were left in the lurch with half done project and money stolen. Supplies we paid for were not provided, subcontactors were not paid by the contractor, and he lied to us about passing inspections and structural aspects of the build. Talk about stress. We had to fire the contractor. In the fall Brock worked all evening and late into the night after his dayjob, with the help of his dad, and members of our community and church, as well as new trades we hired, in order to get us back into the house as soon as it was safe for the kids again. We had started in fall of 2017, therefore Zander had lived in a construction zone for over a year, so coming back to a mostly renovated house around Halloween didn’t really phase him. We got the final tiling, plumbing, and finishing done to get Braxton into his new room and bathroom on the main floor of the house once we were back in. There was lots to do, and we are still working on some bits and pieces. Then just as we thought we were getting life a little settled, we got the phone call that Braxton’s case for brain surgery was taken to an international conference, and it didn’t come back unanimous to go for the surgery that had been suggested to us, hemispherotomy. The neurologists could not agree if there would be enough benefit to warrant such an extreme surgery. They left it in our hands to decide if we wanted to go ahead or not. It was such an extreme weight on mine, and Brock’s, shoulders. In the end we decided to go ahead with the surgery with the hope that it would reduce Braxton’s seizures. Surgery was scheduled with surprising speed, and just two weeks before Christmas Braxton went for the longest, and scariest, surgery of his life, to disconnect the right side of his brain. He spent a week afterwards in the ICU. Braxton, as always, was a fighter, and was home to spend Christmas with his family. He had a special visit from Santa, who came right to his door, and delivered amazing gifts for our whole family. (Thank you to whoever you are Secret Santa!) Thankfully, the rest of winter was a bit more calm, as we all focused on healing, school, and completing renovations.
0 Comments
I am loving the view out my window these days. 2017 was a great year for so many reasons. I finally felt like a got my feet under me and was getting the hang of how to be a mom to my boys and wife to Brock and nurse/advocate for Braxton. It definitely helped that I got to sleep through the night for the first time since 2013. Zander weaned at 22 months and started sleeping through the night and we eventually got night nurses for Braxton 7 nights a week. There just isn’t a word that can sum up sleep deprivation of a special needs mom, ‘exhaustion’ doesn’t cut it. I know that there will be more sleepless nights ahead as we plan for baby 3 in May, but I hope I have more coping skills this time around. Another exciting development in 2017 was we also decided it was time to put down roots and find Braxton a forever home. Since originally we were told Braxton was unlikely to live past two, we were hesitant to make any big decisions or long term plans. Our huge leap of faith was having a second child before fully knowing Braxton’s diagnosis or what his life would look like. Braxton went downhill while I was pregnant with Zander and we took him to Mexico, thinking it was very likely his only chance to see the sun and ocean (and although he has made it to more summers of warm sun, we are still doubtful we can take him to see the ocean again). Once Zander arrived it was survival mode. Any new mom can tell you the ups and downs with a new baby, and with a medically complex toddler in and out of hospital in the mix, 2015 and 2016 were hard years. But though the difficulty we learned just how strong and resilient our Bubbe is. He fought off pneumonias that were likely to end his life, regained skills after status seizures and brain slowing medications made him regress back to a baby again and again. He showed us that he was getting ready to go to school, being happy in his wheelchair for long periods of time, learning to communicate ‘yes’ and ‘no’ by turning his head right or left, loving to be around people, and eager to participate in tasks that were purposeful and useful. Our Braxton understood us and wanted to be part of our world. It is exciting to be putting down roots. After years of not knowing if we were staying or going, if Braxton was staying or going, if I was going back to work or remaining a stay at home mom, we are putting down roots. We are saying to the world we believe in Braxton, we feel he’s here to stay. That brings with it a whole new set of shifts in our thinking. Like school, for example, Braxton will be starting kindergarten in September. And what are the needs of an older disabled child/preteen, and how do we meet them? We started looking for a house that would meet Braxton’s needs. It was a hard search for a house that was wheelchair accessible or could be made accessible. We were looking mostly in Calgary, as that had better access to both Alberta Children’s Hospital and Emily Follensbee (an elementary school for children with medical and developmental complex needs like Braxton). Even with pushing our budget to its max there just wasn’t the right house for us. We talked to three different home builders in areas east of Calgary, and even put a deposit on one, but the house we needed continued to fall outside our budget. We did find a house in Langdon that could be made to meet our needs and put our current house on the market, but our house did not sell. So after more than a year of house hunting we decided to renovate our house. Once again the process was much slower than expected, with frustrating delays getting plans and approvals in place. And even now with the renovation started, it’s been slow going with hold ups and weather testing my patience. Originally the plan was to be done at end of January, but we are far, far, from that now. We now have a wheelchair lift on our front porch to get Braxton in and out of the house. We are building into our backyard. Braxton will have a new bedroom with accessible en-suite bathroom on the main level. We are also renovating our kitchen/dining room/living room area to make it fit our crazy life. Zander loving the digger in the backyard. The next piece in our accessibility puzzle is a wheelchair van. Braxton is getting too tall and heavy to be lifted in and out of a child car seat. And I’m getting too pregnant to be lifting the wheelchair (~70lbs) in and out of the vehicle’s trunk. Braxton will be able to stay in his wheelchair and travel from the house, down the front porch lift, and up a rear entry ramp into the van, where the wheelchair will be secured in the back row. There will be room for Zander and baby in the middle row. When we get to our destination, be it the hospital, school, or church, we can easily roll the wheelchair out of the van. That is of course once we actually get a van. Handicap accessible vans are ridiculously expensive, we are looking at $20-40000+ for a used van that meets our needs. Similar to the house, we have been keeping a close eye on the used accessible vans for sale, but haven’t seen what we need in our budget. We will be setting up a fundraising page in the close future to try to help Braxton get his much needed wheelchair van. This is my third pregnancy, and it feels different. I'm doing it different. I learned the consequences of not taking care of myself while pregnant with Zander. It's not that I chose to be on the go 24/7, but rather at that time I had little respite and no night time care for Braxton. So many of my pregnant nights I was up during the night, sometimes most of the night, taking care of seizing or puking Braxton. Even if he was sleeping peacefully, I still had to be up to run his night feeds and administer meds. One of the more clear memories I have is the relief when his nurse came in the morning and I could finally go to bed and actually sleep, at 8am. I was crazy exhausted, I fell down stairs at night numerous times, collapsed in the bathroom falling painfully against the tub, had panic attacks, none of which was healthy for baby I was carrying. I had tremendous guilt and fear. At that time Braxton wasn't doing well. He wasn't predicted to live til 2 years old and he would be 2 just a month after Zander was born. He was seizing all night, on crazy meds, the palliative team came to the house to discuss end of life plans. That stress was also not healthy for mom or baby. When Zander decided to make his entrance into the world, Braxton was sick. We were actually in middle of packing up to take him to children’s hospital when labour started and we had to change plans. On my way to hospital to deliver at 1am I was on the phone trying to arrange care for Braxton, and thankfully both Brock’s mom and my mom, along with my homecare nurse, were able to keep him stable at home until I was able to get discharged as soon as possible after giving birth. The first few months were a blur. If I thought I was exhausted before, I was barely surviving new baby sleepless nights plus Braxton’s needs. Thankfully Brock took over most of Braxton’s night care and we were given a night nurse 3 nights a week. Still there were hospital stays, trips to emergency, appointments and therapy. I genuinely can barely remember Zander as a newborn. The body and brain can only take so many months of physical and mental stress, anxiety, panic attacks, sleepless nights, then it goes into a protective state, kind of a mindless blur, not really awake or asleep, not really motivated by pleasure or food or friends. It was chalked up as depression, but in my mind I just needed some decent sleep. I really had to advocate for myself, which is hard when you are barely getting through the day. I remember many days thinking “okay I have about an half an hour of me time, I can eat, I can shower and get dressed, or I can sleep….or I can make the needed phone calls to get supports in place so tomorrow might be better.” (Sleep almost always won.) But I was able to fight for respite care through FSCD and had a wonderful lady come into our lives who still works with Braxton and truly cares for my kids like her own. I also fought to keep our night nurse time through AHS and as Braxton’s needs increased over the next couple years with pneumonias and bi-pap we were eventually able to get night care 7 nights a week. Finally we are not sleeping with an ear open to hear seizures over the baby monitor and getting up to do night feeds and change soiled sheets. Zander finally slept through the night after I weaned him at 21 months old. Finally I found myself, my sleep, and my happiness, again. Now I’m pregnant with baby three. Currently I’m 14 weeks along. The first trimester really sucked. I was far more nauseous this round than with the previous kids and found I had more food adversions. Gluten left me in a ton of stomach pain, tea just wouldn’t stay down. Even though I was sleeping through the nights I was far more tired than before being pregnant.
So, I take naps. As often as I can. Many days we are out all day at therapy or appointments or getting groceries. Some days the boys don’t want to nap or only one does but the other needs mommy. But, on those glorious days that we are home and I have help, straight to bed for me. There is guilt that comes with this self-care. Someone else is looking after my kid while I sleep? The laundry or dishes are sitting undone, the phone calls to return are piling up, supper isn’t being made! Oh well. I have learned that those things can wait, but my body cannot. I am hoping by taking it easy on myself though the pregnancy I won’t burn out as fast and hard once baby three arrives. Our lives are unpredictable. I’ll never know if tonight is the last night with Braxton in this world, if we will have to be in emergency tomorrow, or if a snow storm will keep us home from scheduled appointments. So the best I can do is control what I have control over, which is myself. So if you need me, I’ll be napping. Each year we get photos done by the amazing Erin Shepley erinshepleyphotography.com
I’m really struggling with mommying right now.
The monotony. The early mornings and late nights, or sometimes all nighters. The endless chores. Circles of tidying, sweeping, washing, cooking, laundry and dishes. But at the end of the day, quite often the house looks worse than in the morning. The to-do list (or as I call it, the “I-don’t-want-to-do list”) that is never done. Making appointments with doctors, dentists, teachers, therapists, and specialists. Piles of paperwork to be completed or filed. Groceries to buy, diapers to buy, toilet paper to buy…why are we always out of these things? Coordinating caregivers, nurses, dayhome, and the hospital’s day care, as well as often grandparents to help. Because all of this regular mom stuff, that moms around the world and throughout history do, yeah I’m sucking at it. I’m drowning in it. I’m needing a village to help take care of my kids. And yes I know we aren’t a “typical” family, and that Braxton’s needs are far greater than average, but still, I mean these are my only kids and I feel like I should be able to handle stay at home mom (“SAHM”) duty. I mean they eat every day, multiple times a day. How do all you moms feed your children so often? Healthy food without preservatives and sugar and GMOs or whatever is scaring us now? No, I’m pretty sure Zander is surviving on rice, French fries, frozen waffles, and oreos. Then there is all the stuff we are supposed to teach kids. Alphabet, numbers, to pee in a toilet, to not hit, to not yell…and that’s just before they are 3. It’s a tough one because the teacher in me loves to see Zander loves books, loves to be read to, and seems to be a sponge always soaking up all I teach him. But there is so much pressure. A million posts popping up on social media asking am I teaching him right? Does he get enough free play? Have the right toys to encourage him to be a creative thinker? Too much screen time? Will he understand money and time in a digital and electronic world if I don’t start now? Is he developing good posture and coordination? Don’t be a helicopter parent, but don’t let your child be wild and rude. And how on earth do I make sure he isn’t a bully one day, because, man oh man, he can get aggressive with his hugs. Everywhere are Pintrest/Instagram perfect parents with lovely smiling children. And all I want is a shower without someone puking or running out the front door or tantruming in the tub at my feet. I guess I just thought after 4 years as a SAHM I would have my feet under me. Maybe I could give both kids a bath without burning dinner at the same time. Maybe I wouldn’t scare my kids with fits of yelling when they just won’t get to sleep after hours of putting them to bed. Maybe I would not be offended when people look too long at Braxton in his wheelchair. What it really comes down to is I’m scared I’m messing this whole parenting thing up, while everyone else is getting it right. And that I’m spending my days begrudgingly playing the part of who I think a super SAHM should be, that I’m not being authentic to me or my kids. This turning bundles of joy into real humans is hard work. Real work that should be authentic and individualized to each family’s needs. So are all you moms just nodding along with me? Like, do none of us actually have a clue what we are doing? Because each kid is so freaking different, I swear I could read every parenting blog and not find one that would have all the solutions for our family. But I talk to some parents who seem to have found “the answer”, the one way to get kids to sleep, or eat, or potty, or walk, or talk, and if I just do it their way, ta-da, my problems will be solved. And, you know what, I do go home and try their answer, but apparently we have a completely different test sheet because it just doesn’t make sense for us. I do think there is a general parenting paradigm that works better for me, and probably certain ways of parenting that work better for you. But so far I have not found “how to raise your 4 year old who has the motor skills if a 6 month old, while helping a 2 year old be kind and eat protein, without being able to have a daily routine because you will have appointments scheduled at different times of day each week, while being a domestic goddess on the side”. If you see this in bookstores please let me know! So a huge thank you to my village. My nurses and caregivers and mom and mommy-friends and husband. Those who I can lean on, to take a breath, have a laugh, and get grounded again. Today is rare disease day. And so today I want to share a bit more about Braxton. Many of you know about my son, the one with the amazing eye lashes and bright smile. He’s super determined and loves to sing and kick his legs. He can’t walk, sit up unassisted, talk, or eat orally. Yet. Here are the most common questions I get about Braxton and the short answers.
Q: Why can’t he walk? Why is he in a wheelchair? Will he ever walk? A: Nothing is wrong with Braxton’s legs. In fact he loves to kick them when he lays on his back or to swim in water. But the parts of his brain that helps Braxton to coordinate his motor movements did not form properly. He also has been on medications that slow his brain down. These have been used to prevent seizures, but it has made learning hard. Now Braxton is on less medications and his brain is making new connections, but his body is so much bigger than a babies when a baby first learns to stand and walk. We use special equipment to help him build muscles and lately Braxton has been wanting to walk with our help, so we hope one day he will be more mobile, but for now he uses his wheelchair. Q: What does he have? A: This question usually is a stumbling block for me. Braxton doesn’t have an easy to say disease or disorder. He has a whole collection of abnormalities in his brain. The quick answer is he has cerebral palsy. The longer answer is he has dandy walker malformation, agenesis of corpus collosum, microcephaly, polymicrogyra, and cortical visual impairment. He has these abnormalities because he has a super duper rare gene mutation on his TUBa1a gene. There isn’t a lot known about this gene, but we do know its job is to make the brain become its different parts early on in pregnancy. Braxton’s specific mutation of this gene hasn’t been seen before, and until a couple months ago he was the only kid in Canada with any mutation of the TUBa1a gene! But more and more kids are getting tested for this mutation now and I have been connecting to more families with kids who have this genetic mutation. Neither Brock nor I have this gene mutation, so it’s very unlikely any other kids we have will be affected. Braxton’s brain won’t get worse, but it won’t become normal either. He isn’t contagious, but we do have to be careful that he doesn’t get sick because sometimes he’s on medications that suppress his immune system, and even on his best day he has a much harder time fighting off bugs than other kids. Q: What is that on his stomach? Why is there a tube hanging out of his shirt? Does he eat? A: Braxton is fed though a G-tube (gastrostomy tube). When he was about 8 months old he lost his ability to swallow his milk without aspirating. So he has a surgery that put a tube right into his stomach that we feed him through. Braxton has a special ketogenic diet to control his seizures. I blend up meats, fruits, vegetable, and oils, and a pump slowly pushes his blends into his stomach. He eats 4 times a day, it takes 2 hours to complete a meal. Braxton can eat while he sleeps or while we are our and about, but he has to stay pretty still while he eats, since he throws up really easily. He also gets all of his mediations and water through his g-tube. He might be able to eat with his mouth again one day. Right now he can get tastes, but he is pretty scared to eat with his mouth because he has choked so many times. Q: Can he see? Can he hear? Is he awake? Braxton has a hard time seeing. He only opens his eyes half way and can only see things clearly if they are really close. When Braxton was born he had cataracts and had to get the lenses cut out of both eyes. So he didn’t use his eyes when he was a baby before he had the surgery and therefore learned to use his hearing instead of his vision to understand the world. He needs glasses or contacts to see well since he doesn’t have lenses in his eyes. Braxton can see lights and colours and enjoys watching tv, but he probably won’t look at your face. Because he doesn’t look at you and often closes his eyes when he is listening, he often looks like he is asleep. Most of the time he isn’t asleep. He’s almost 4 and so he now rarely naps during the day, most of the time when we are out and about he is awake. When Braxton was a baby it used to really annoy me when people couldn’t tell if he was awake or asleep, but know I understand it’s hard for people to tell if my floppy closed eye boy is cuddling and listening or sneaking in a nap at church, and I no longer get offended. As for his hearing, oh he can hear amazing, probably better than you and me. He recognizes voices and sounds in the house, like the garage door opening means dada is home. So go ahead and talk to him like a 4 year old, his understanding of language is really great! Pregnancy and Birth or Too Much Information I got pregnant the first month we tried. He was planned, I took my vitamins and avoided any concerning foods. The pregnancy was uneventful. We thought we were prepared. Then, during Braxton’s 20 week ultrasound, the tech apparently had trouble imaging part of Braxton’s brain. We were sent to get more imagining done at a different radiology clinic. We were perfectly naive, and this didn’t seem too unusual to us. When the doctor came in to give us our results he did so in a non-concerning manner. The part of his brain called the cerebellum was rod shaped instead of barbell shaped. And they were unable to image the corpus collosum. I honestly don’t remember much more, other than a tightening in my heart that hasn’t gone away since. I rubbed my ever-growing belly constantly, maintained my careful pregnancy diet, completed my practicum working in a junior high, graduated with my bachelors of teaching, went to the ballet with feet so swollen I couldn’t wear my shoes by the end of the performance, painted the nursery, bought baby clothes on kijiji, and as far as I remember had a typical pregnancy. One Sunday at church we asked for prayer for our unborn son. Our obstetrician let us know about our options, fetal MRIs, other diagnostic tests. We declined. What good was more knowledge at that point? Baby Braxton was growing in me as best we could and that was that. Three days before his due date Braxton made his entrance. Contractions started before dinner, I went for a walk, made dinner, they were irregular and gentle. Brock went to bed and I stayed up, bouncing on my exercise ball and resting in the dark, then showering and woke Brock up around midnight. It was time to head to hospital, the contractions were coming closer and stronger. A half hour drive into the city and through triage we waited. I was barely dilated and contractions, although steady, were about 5 minutes apart. I was told baby would be at least 4 hours, and then we were left and mostly ignored. They had those annoying contraction monitoring bands on me that were unbearably uncomfortable, and the contractions came stronger and stronger. I got louder and louder and more and more uncomfortable, much to the annoyance of my nurse. I went to the bathroom, just so I could be by myself to labour standing up without the monitors for a bit, and when I was checked on my way back chaos ensued. I was dilated, I was pushing (without meaning too, without even know that’s what I was doing…I was at the body taking over stage and was just doing what I felt I needed to do), there was meconium, I needed an IV (which I tore out before it was secure as a contraction hit spraying blood), they needed a monitor on baby’s head, too late for any drugs, rushed to the delivery room where more and more nurses piled in. I pushed when they told me to, I disappeared into myself and my baby and that primal state where you no longer feel pain or see your surroundings. I hear a countdown and shouting. Brock later told me this is a countdown until I need a csetion, counting down in seconds. Braxton is stuck. He told me that a nurse climbed on the bed over me pushing on my stomach, they used vacuum but baby is still stuck and can’t breathe and has his arm twisted up funny and needs out. Now. But all I remember is that then he was out. And it’s a blur of people doing things to baby Braxton on the other side of the room and I’m grateful that my mom and husband are there since there are now two of us needing to recover from the birth. I remember seeing baby Braxton for the first time and of all things noticing his chin first…it was just like his daddy’s. The next couple days were more of a struggle than they should have been, announcing the beginning of the hardest years to come. Braxton wouldn’t latch. His head circumference was small. He arched back continuously. He was perfect to me. Different lactation consultants tried their hand positioning us (often literally grabbing me and trying to shove me into Braxton’s mouth as he arched away). They brought a pump and syringe. He drank my milk like a baby bird. After a long May long weekend in hospital we were discharged, with a pediatrician who wanted to follow us. We had no idea it wasn’t normal for a pediatrician to come introduce themselves at your bedside and want to follow your baby. We didn’t even know what it meant to be “followed”. We would soon learn, but first everyone seemed to pretend I was just a crazy mom imagining my baby wasn’t normal, and telling me we would have to wait and see what would happen to my baby. Then the RT says "I think you need to take him in."
Oh how I miss the life I had before I understood the weight of those words. Before I already had a hospital bag packed to go. I always feel silly to take Braxton to emergency. I mean, we pretty much have a hospital in our house. As soon as he got sick we got him on oxygen, slowed his feeds, started Ventolin nebs. We know there are limits to what further interventions the hospital can provide, once Braxton catches a bug it's a slow battle back to health. I packed the car and the RT tells me, "I called triage so they know you’re coming, the nurse knew Braxton." We always jump the waiting room line, the other moms often glare. I'm sure one day I'll sit with Zander in that waiting room for hours and feel their frustration, but now special treatment at triage is just a sign of how a little cough is actually a big problem. "Wheezes and crackles" "inspiration and expiration" "increased work of breathing" "Other than that he's healthy?" oh yes I answer. Wait no, you mean why is my 3 year old not walking or talking, right? He's medically complex, abnormal brain, cp, delays...oh you want the full story again, "was it a normal pregnancy?" I hate this conversation, trying to explain why Braxton is the way he is, fill in the whole story. How much brain space do I lose trying to remember all his surgeries and admittions, clinics and doctors, weight, last feed, last poop, meds, seizures... In the emergency room Braxton is choking and I suction him. Emergency isn't like I imagined before becoming a frequent visitor, it's just full of tiny rooms where you are mostly ignored for hours. (Unless you end up in trauma...I have nightmares of the trauma room.) The nurse comes in and hands me a syringe. This is why I feel silly for coming, I'm administering meds, I'm suctioning, he's getting a Ventolin neb, might as well be at home, at least I wouldn't be starving, sitting on a plastic chair, for hours. Okay I'm done complaining. I should be grateful we have a great children's hospital and a wonderful healthcare system and I'm not being charged to be here. But at the moment I wish I could go back to being naive, thinking hospitals fix kids and a mama's vigilance can keep their kids safe. You miss the things I haven't done,
the goals not scored, or races won. The steps my feet have never walked, the words my lips have never talked. In my wide eyes you know my fear, you take my hand and hold me near. In children all around you see, the child that I may never be. Not so able, tough or agile, often tired and much more fragile. You see the tears I've often cried and cried them with me, side by side. Your heart is heavy for my trials but you wear it well, with weathered smiles. You think of all the things I'll miss, first dance, first love, first date. first kiss. Yet here I am, as I should be. Not missing out on being me. Do not fret or worry so, and make your spirit tired with woe. And when those nights are feeling longer, lean on me until you're stronger. For all we have is one another, special child and care worn mother. Nothing matters more you see, than seeing all the life in me. I don't need to be able to, do the things that others do. See the words I do not say, in the smiles I give you every day. When I'm tired, let me rest, with my little head against your chest. Look at what I can achieve and celebrate me, do not grieve. Please do not be sad because, I'm not the child I never was. Different isn't less you know, and you're the one who told me so. Some days will be hard to take, and you'll feel as though your heart might break. But we'll bounce back, we always do. Because you've got me and I've got you. - Author Unknown. February 13, 2016 Braxton was admitted to ACH with pneumonia. X-ray showed viral pneumonia, and test revealed it was human metapneumovirus. The next night he was much worse, xray showed possible bacterial infection had developed. Started antibiotics- completed February 20th. Ventolin and Saline Nebulizer seemed effective, was able to return to room air with 100% oxygen saturation. Discharged Feb 17.
February 20th saw family doctor when he was struggling to breathe again, prescribed prednisone – completed February 23. February 24th admitted to ACH with fever and indrawing when inhaling, needed to be on oxygen (oxygen saturation 69-72% on room air), xray was much better than Feb 15 but still lots of ‘fluff’. Tested positive for Influenza A. Supported with Ventolin and Saline Nebulizer and frequent suctioning. Although not recovered, after a week it was felt Braxton could be supported as well at home as in hospital, and went home with a nebulizer and prescription for Ventolin nebs every 4 hours as needed for a month, and oxygen 1LPM 24/7. Follow up with respiratory march 30. Discharged March 1. We were advised that Braxton will take a long time to recover from the back to back respiratory virus infections, probably at least a month for the pneumonia, during which time his immunity would be compromised. Braxton now requires: -oxygen 1LPM nasal prongs at all times -Positioning to allow drainage, sitting up leaning forward- especially when coughing. Sleeping on side with head elevated. Turning him from one side to other throughout night to make sure the infection does not get a chance to stick to one lobes of lungs. -frequent suctioning. He is coughing up the mucous from his lungs and is at high risk of aspiration if not assisted. Suctioning in nose and cheeks of mouth, trying to avoid gagging to reduce chance of vomiting. -Ventolin nebulizer as needed when breathing becomes difficult up to every 4 hours -chest percussion to loosen mucous (not during feeds). Saline neb can also be used to loosen mucous but can lead to coughing fits, so Ventolin should be given after saline nebulizer -tylenol/advil to control fever and throat pain -comfort during coughing fits. A cool damp cloth to forehead or back of neck helps. Warm bath in steamy bathroom. Lots of cuddles and back rubs. -frequent change of bedding/clothes that have been drooled, spat up, or sneezed on -extra water in between feeds if tolerated |
Archives
September 2019
|