Khyras’ Medical Story
Khyra was born on November 27th, 2003. I remember walking into NPICU to see her after birth for the first time. She was having a seizure, I was asked to stand beside her and hold her hand while she was having her seizure. She eventually stopped, and I remember my disbelief that they just left me alone to tend to the seizure. I remember needing to sit down, because I felt faint. She finally stopped and I was overwhelmed with feelings that I didn’t understand. I now realize, it was just the start of our long journey in loving and nurturing my little girl, providing her with the support she deserves as she struggles with all these medical issues. Khyra continued to have seizures, she had a grade 2 brain bleed, brain calcifications, hypo plastic lungs, she was diagnosed with CMV, and due to so many hospital stays was tested positive for MRSA. We had her on Clobazam for the seizure activity for a few years; eventually she was taken off the medication. Khyra was diagnosed with CMV, which is a cold/flu virus most of us get when we are about 2. I never got this when I was young, so I didn’t carry the antibodies. I was working my first year in the school system when I was pregnant, and never got sick at all while I was pregnant. They explained that it could have just felt like morning sickness. Anyways, if baby comes into contact with this cold/flu virus, in the first trimester, there is a 1 in a million chance they will present like Khyra. She struggled through the pregnancy with this virus undetected, and the results were as indicated above.
Our family was pretty new, we had just married, and we were living on a farm out by Rowans Ravine, Strasbourg area. We were a blended family, we had Justin (11), Tyler (9); my two boys from my first marriage, December (5), and Logan, who would have been around 2; Khyras’ fathers’ girls from his previous relationship with Ivy. It was a challenge to juggle all our children, living out on a farm, along with all the hospital visits in Regina. We felt torn between time at the hospital and trying to be good parents to the rest of the children; Khyra was so fragile that we didn’t know if she was going to pull through and the kids became tired of being at the hospital all the time. Justin and Tyler would opt to stay at home, at the farm, almost an hour away from Regina. My parents, who resided 20 minutes away were their emergency contact. This was not ideal, as my boys, who always got along, were starting to fight and it was really hard to keep everyone happy. It was also difficult to travel to the city when the roads were bad, we took many risks to attend the city, when it would have been safest to stay put.
We finally got her home with 02, and she was eating by mouth at first, however, she was aspirating, and she ended up with reoccurring pneumonias. By May 10 or 11th 2004 Khyra was given a G-tube, where she didn’t have to eat food by mouth. By June 28th, 2004 Khyra had a tracheotomy and was on life support, this required her to have a ventilator, suction machine, O2, compressor, HMEs, etc. We were able to have her at home by hiring nurses. Khyras’ grandma, Val, took part in this care as she was working in Home Care and was fantastic with Khyra. This was a whole new world. We had caregivers in our home to watch Khyra while we slept. We had to figure out how we were going to attend work, because I had just started my career. Home care wasn’t in the habit of providing care for parents to attend work. Khyras’ father was attending University and we both felt like we needed to continue on our path in order to support and care for the rest of our family.
In July 2004, she had a fundoplication, this was to prevent aspiration. She gagged and wretched so much that this surgery was pointless, she ended up tearing it anyways. She was out of the hospital on the ventilator in November, 2004. We spend a lot of time in hospitals through all this; Saskatoon, Regina and Edmonton were our travel destinations for a while. We often got calls a day or two before they needed us to attend appointments in Edmonton. We had to quickly juggle our workplaces, care for our children and travel to accommodate this within a 24 hour period. It was ridiculous really. Telemiracle helped us with travel, and we used air ambulance a lot. We then discovered that she had an apnea condition, so the ventilator was staple to her care for some time. In 2005/2006 she was given a G/J tube. This was to prevent the aspiration, she would still aspirate with the g-tube, the g/j tube was a longer tube internally, and this was all to prevent further lung damage. Prevacid has been a great drug to help with the acid that would cause further lung damage from the aspiration. It didn’t help that she also had a paralyzed vocal cord.
We moved back to Regina sometime in 2005, this was to be able to spend appropriate time with our children and to be closer to the hospital. We tried using home care for our services, however policies made care for Khyra almost impossible and caregivers were constantly changing. We decided to use Individualized Funding, Cognitive Disability Funding and CLD for funding. We created a business called Bear Care, a business for a child with complex medical needs. This allowed the school to be able to contract our caregivers for continuity of care, and allowed us to hire and train caregivers to meet Khyras’ needs. It allowed us to put our caregivers on payroll and to provided health benefits to retain staff.
Fun fact: Bearcare used to be the name of a daycare I founded and ran for years in Regina, prior to my move to the farm. My previous last name was Bahr, so it was meant to be a play on words from that. A friend of mine, Heidi and I came up with the name years ago!
Khyra was going to school at Centennial School in Regina, we had worked out how to hire our own staff to be able to attend school with her and bring her home for after school care. Continuity of care was so important so she could develop attachments to people in her life. She was doing well. She was able to take weight on her legs, and was starting to be able to balance herself on counters for a few minutes at a time. She was learning how to take steps with prompting, and full body support. This was exciting for us because due to her having one side hypo and one side hyper, we were told she would likely never be able to walk. I have a photo of her standing at a counter at the school, on her own, playing with a toy. It’s moments like that that take my breath away.
September 11, 2007, we were holding a staff meeting for Khyra at the house, all her caregivers attended. At the time we had RNs on staff, LPNs, all levels of care. She was not in good space, so we had her go to her rom with dad while we finished the meeting. After they left, Khyra was still grabbing at her g-tube. She never does this. She felt cold, and we couldn’t get a read on her oximeter, so I warmed some towels in the dryer and kept trying, in the meantime, we pulled out the ventilator, and were administering O2. We called 911, they arrived and we had the doctor on the phone. We hooked Khyra up to the ventilator, as we couldn’t get a read, but we could see she was in distress. We debated on whether to keep her for the night, or have her brought in. Thank goodness we took her in. Khyra was taken to hospital to treat Midgut Volvulvus. This is where her stomach twisted. It’s no wonder she was pulling at her g-tube! I still remember , the next morning when I saw her, laying in the hospital bed, her belly was as high as she was long. I remember hearing myself crying as saying OMG, but I felt outside myself. I remember sitting in the waiting room during her surgery, waiting to know if she’d live. She still had her trach at this time. She lost 75% large intestine, but the ileocecal valve was intact allowing her to live. She had Short Bowel Syndrome following, as her villi needed to grow. Dehydrations followed. She would have minimum of 10 bowel movements a day. We have spent a lot of time changing diapers:)
September 12, 2007 was the surgery. I was working at Massey School at the time, and the teachers were amazing. They all prepared meals for our family and made sure we had food for her long hospital stay. Finally, in December, 2007 she was able to come home on TPN, just before Christmas. I remember being so worried about not having her with us at Christmas. We continued to have nursing care for her and we were trained to change out the TPN etc. She had a picc line that we had to change once a week, our house became equipped with a sterile fridge for TPN, a sterile closet for all the sterile supplies, my house was starting to look like a hospital, instead of a home. But, we were determined to try and have as much of a normal life as possible.
And Life Goes on and We Go Camping!
We even took her camping with TPN, we brought our caregivers, and purchased a very large camper for Khyra and her nurse, while the rest of us would camp out in tents. Children’s Wish Foundation helped contribute to the cost of the trailer. We really wanted our children to have some life experiences even if their sister was sick.
In August 2008, Khyra was able to finally have her tracheotomy removed, in Edmonton. This was a challenge, and for us, a miracle! No one would attempt to remove it, we had gone from specialist to specialist, and they were all afraid to take the risk. I finally decided that it was time to consult with the professionals in Edmonton, and ensured we had guidelines to follow to ensure it was safe. I was directed to build up her tolerance with a cap (plug to cover the trach ), monitoring her O2 levels. I had to find my own cap, as I was on my own. (I found one). I had been given paper work to fill out each night, as observations and data collection. Once I knew she could handle her time being plugged, I then booked Edmonton to assess if she could have it removed. She did have both Central and Obstructive Apnea; however we were able to take the trach out and put her on Bi PAP, which is pressure both ways. She didn’t much like the apnea machine; however, it allowed her to remove her trach and to finally vocalize. It was a blessing to hear her voice on a daily basis. You never really how beautiful it is to hear your children’s voices until you can’t. When she cried, it was mute, her hiccups had no sound. It’s beautiful to hear Khyra try to sing to her music. She can’t say words, but she makes sounds and can sing!
August 2009 we were able to get her off TPN. She was on some expensive formula, but she was able to maintain her weight. We also had to go in and get her stoma closed, because it wouldn’t close on its own. November 27, 2010 was the discharge date after stoma closed at 3pm. This was her birthday!
Her next adventure was one I didn’t enjoy much. Almost everything up to this point was emergency based. We now had to make a decision based on symptoms. Khyras hips were giving her problems so we were advised to get a femoral osteotomy; this was to keep her legs from popping out of her hip, and to prevent major arthritis when she was older. In 2010 Khyra went in for surgery, Femoral Osteotomy – She has a metal plate in her right hip. I was working at Ranch Ehrlo by this time. Khyra was no longer able to walk, or take weight on her legs. We were just trying to do enough physio to keep her healthy and to help her regain some strength. This was a hard one for me, I hated to see her in so much pain, I had to clean surgical wounds, dress them, and remove stitches.
By now, you might be thinking as we did, and be wondering if anything else could possibly happen to this little girl. Nov. 2011 we were going through the process of trying to figure out if Khyra had arthritis (rheumatoid arthritis was suspected.), as she had constant blood in her stools. From Nov. 2011-Nov.2012 she struggled with arthritis, blood in stools, and dehydration. She was sick no less than once a month, and sick for no less than a week at a time. We continued with this, still in June 2012, we were seeing blood in stools, and she was constantly dehydrating. Pedialyte and hospital visits for fluids were our routine. We were starting to worry that she was going to be on TPN again for good. Finally, in November, 2012 we discovered Sulphsalazine for the arthritis and colitis, with this med, we were able to get Khyra off of TPN and we found a formula that was actually working. They figured she became allergic to her past formula as well. It’s the last option for her now. She was changed from Vivonex to Neocate Jr. during this admission. Dr. Essalah took Khyra off of Bi pap machine during this hospital stay as well. She hated wearing it so much that it became an obstacle for her to sleep, probably more of one than her apnea conditions.
By the end of November this year, November 28th, 2012, Khyras’ father was done. He couldn’t do it anymore. He doesn’t see Khyra. I really must add, although I’m sad about the decisions made moving forward, I will state this truth: No one will truly understand the level of stress and strength needed to do what we do. Khyra doesn’t see dad, and I hope his new world is able to provide him with the happiness and freedoms every person deserves. This was devastating to our entire family. Our families had blended so well that the grandparents were friends, the siblings loved each other and I had to learn how to do all of this on my own. Khyras’ father had been in charge of certain rolls in Bearcare such as Payroll and the HR part of the company Bear Care. I was in charge of scheduling, training, all the front line stuff. We had lost Cognitive Disability Funding so we only had CLD and IF. It was still a lot of EXTRA added to an already full plate.
She did amazing from the time he left until March 2014 when she had a seizure which lasted 2 minutes. We followed up with an EEG in April. We were told that Khyra was having silent seizures, almost constantly. We made the decision to start her on a small dose of clobazam and revisit in a few months to see if this helped. Khyra had 3 more seizures in May/June/2014. She was then prescribed a higher dose of clobazam again; she has been on 10ml of clobazam. Seems to be controlling seizures for now.
Khyra has always been up to date with immunizations and has had special immunizations when she was younger due to her chronic pneumonias. She had Immunization Sept. 25th, 2014, Hep B, Human Papillomavirus, Meningococcal Conjugate ACYW-135, Records indicate Varicella (Chickenpox) complete 2005/12/01.
Khyra ended up with some red patches, a rash, on her skin so we saw a Dermatologist in 2014: Dr. Roberta M McKay Oct. 10, 2014. She was diagnosed with petechiae rosacea. It’s not contagious, however takes forever to clear up and can be quite itchy. She still has patches on her skin. We may have to revisit the Dermatologist to see if another cream might work better.
Khyra also has a flu shot every year, nurses used to come to our home and do Khyra and all our family, we now go to the clinics. She got her Flu shot dec.11, 2014.
On January 7th: 2015, Khyra had 2 Seizures, at 8am she had a large seizure, then again at the hospital. I had never seen Khyra have such a big seizure and it shook me to the core. We discovered she had pneumonia, and she was treated with antibiotics (Ceftin), and we had an increase in clobazam. On January 15th she had an x-ray of her left leg and right arm which were still sore from seizure- x-ray came back good. On January 21st Khyra’s right leg was immobile after school during a diaper change- reason unknown. I checked her saturation levels, and she was sitting between 86-89 on room air. O2 applied. We consulted the doc, and on January 24th the doc prescribed Tylenol with Codeine to relieve pain for right leg, the meds caused itching, and constipation. We were still thinking this was all aftermath from the large seizure. We couldn’t handle watching Khyra be in pain, so finally on January 28thAdmission to General an x-ray revealed tibia, smaller bone fractured (ziz zag break) and fibula fractured, larger bone (one bend), both still intact. Khyra was given a full leg cast on her right leg, applied January 29th in OR. She was discharge on January 29th, 2015. We’ve always known Khyra’s bones were more fragile than most children’s bones, however we now discovered that her bones are osteoporotic – very thin, 1/3 of a normal bone, and fragile- most bones are white, hers are clearish and pliable- high risk for fractures, lifts should always be two person or using a lift.
On April 7th, Khyra broke her femur on right leg, this happened at Wascana Rehab, we think it could have been from a lift at bath time. She was transferred from Wascana (she was on respite) to RGH. Khyra has been diagnosed with osteoporosis. As a result her bones are very fragile. They will not improve.
Since her fractures and breaks we have been dealing with unstable blood results. We aren’t able to see a bone specialist until her blood levels are stable. Her phosphate, calcium and vitamin D levels are low. Her Thera-thyroid is overworking, this is part of the absorption process (GI system) – it’s overworked because calcium and albumen (protein) are low. She is stable enough to be in the community but will be monitored closely in the community. She is taking calcium supplement, but we were told she could not take Phosphate in the community. We were informed that this would be given rectally when needed at the doctors after blood work is assessed. As a result of the new supplements, and her condition, she had become nauseous. When she is nauseous she will gag and retch. This will induce vomiting. Her fundoplication does not work, she will aspirate if she is not sitting up while retching and vomiting. O2 levels are affected by these events. She had borderline bronchial pneumonia, is done treatment, her throat was a bit inflamed, and drooling was present. To help with these symptoms, the doc prescribed Zefron. Zefron is an anti-nausea that won’t cause drowsiness- mostly given to patients undergoing chemo. Khyra was discharged April 12, 2015, she had a broken femur, and ended up with her second cast in such a short period of time. After the second break, I became scared to transfer my own daughter. I don’t want to hurt her, even by accident. Her supplements have been working well, her nausea has subsided, so we have not needed to treat with anti-nausea meds. Her bloodwork continues to be unstable but has started to get better.
On April 24th Dr. Essalah ordered phosphate due to low levels (apparently we can give this in the community, they are tablets), and her calcium is also low. The two supplements rule each other out, so they are to be given apart from each other. Blood work was ordered in two weeks, May 8th. She had an admission at Wascana so the rec order was sent with orders to STOP VITAMIN D two days prior to blood work. (May 6th, 7th). I was to make an appointment to gather results from doc following.
On April 29, my birthday, I had an appointment with Khyra to see Dr. Beggs at 9am at the General Hospital: an x-ray was done, and the the cast was to stay on for 3 weeks, at which time the decision to splint or recast would be made. May blood work: Orders were to discontinue zinc, because zinc levels are too high, reduce phosphate to 1 tablet a day and Vitamin d increase to 5 ml. On June 4th we had seen Dr. Beggs bone surgeon, and cast came off. Wascana is going to be contacted to create a brace for transfers only, for a 3 month term. I expressed my concerns about hurting her, and being afraid to do transfers with her bones being so fragile, the doctor explained that bones require pressure to build strength, however the catch 22 with Khyra is that they will break easy with pressure. Hopefully the brace will give me the courage I need, to safely transfer my daughter without feeling all the fear of hurting her. Blood work was also done this day. Khyra has been doing well with sats and has not been gaggy:) Wascana also coming in to home in July to look at lifts and bathroom. Her bed has now been moved to living room to better accommodate lifts.
June 18th Khyra has started a new med to help with Vitamin D levels. This medication is called Calcitriol and was not covered. It costed me close to $500 so far. August 18th, I finally got a phone call stating that it would now be covered:) Whohoo!! This is a drug to help with her vitamin D levels, not to be given with other mineral type drugs; we have set the time for 4am. The compound is almond based so we have been watching for signs of allergies, none to date. It also needs to be shaken well. Her Vitamin D has been reduced to 2.5 ml. Last blood work was done before her admission to Wascana August 1rst, I will check for the date. Khyra and I actually got our blood work done together, as I’m now needing by hormones monitored until they regulate:) Some mother daughter bonding time I guess:) Khyra’s blood results were that her thyroid levels have improved but are still not stable:(. We have improved half of our goal! The meds have not changed after this blood work which is also nice. I contact nutrition as Khyra has gained a significant amount of weight due to her immobility and she can hardly sit up. Her feeds have now been reduced to 80ml/hr, continuous feed. She has gained so much weight that it takes every ounce of energy I have to be able to get her to sitting position.
October –ish 2016
Khyra was at Wascana for 10 days, August 1-10th, I visited her through her stay because I missed her, and then I visited for a day when we got her home. I then went out to cottage for 5 days, to work on this website and to try and stabilize myself. This is the longest I’ve ever been away from my little girl. She missed me so much that yesterday she grabbed my hand and wouldn’t let me go. She sat me on a chair beside her and we snuggled. I woke up this morning, and my shakes were horrible. I woke up to concerns about her right leg seeming sore, (I checked and it seems ok today). I started my morning with my tremors and shakes. I am clearly not better. I had a list of med orders, and supplies to get and knew I needed to edit my site to be able to even start asking for help. I called my worker at Wascana and left a message again. I’m continuing to ask for the support I feel I really am in need of. I left this with her, my doc, and the general hospital prior to my respite August 1rst, only to have no results in additional supports. It’s frustrating to say the least. I’ve been told that our system really hasn’t the supports for families when we need extra supports, that many have to give up their child in order for them to recover. I feel like this is a huge gap in our system, when I want to keep caring for my child, want her at home, but need help with her medical care so that I can get better. After several calls out this week, I have learned what I already knew. Unless I spend an exhausting amount of time advocating through ministries and systems, I will not get the support I need. How do you do this when you are ill to begin with? I have been asking for additional supports for the past few years, I started at the end of my marriage, when I knew we needed help or I was going to loose my husband. We had Wascana respites and that was it (42 days a year) . They could offer nothing more. So life continued on that path, Khyras’ father left, and I’m now sick. What is it going to take? If I’m not healthy enough to care for her, they will have her full time, why wouldn’t they try and support me while I still can do this? Thought of the day.
Diagnosis: Short Bowel Syndrome, MR, CP affecting all four limbs- a result of level 2 brain bleed and brain calcifications at birth, Central and obstructive Apnea, G-tube fed, Autistic tendencies, Non-verbal, Arthritis, Colitis, Lung deficiencies, Osteoporotic.
Blood transfusions: platelet transfers when chronically ill, at least 6?
Our family looks so much different compared to when we started. Caldon is the boyfriend, who has been, from what I can tell, loving you for the past few years. Bailey and Rachel are welcome new big sisters to your world. And you got to meet Shylo, new big brother. You live with a German Shepard, and a Kitty named Fuzby. We are making some wise financial changes right now. We will be renting out our home in Regina, and moving to a less expensive home at Regina Beach, a place you are familiar with and love. We are currently working on building an extension as it is only like 600 square feet! We will build you a bedroom, a bathroom and place for you to play. We will also build a space for caregivers. This will happen July 1st.
We are now going to look for volunteers to help with the labour of the project, as Caldon (Van Johnson Creative Yards and Furniture) is going to be a huge contribution to the labour, however, he is also working through some medical issues, and I’m hoping we can have a few extra helping hands on board. I’m sad to move, many memories in our home. We have found some amazing people to rent the house and allowing us to keep a space for before and after school care, to help through the transition for Khyra!
We will also use this space as a SPACE to allow other families a place to take their children, and have the hired respite care provider perform the respite in this space. The families will be responsible for hiring their staff, however, we can give a list of people we have used for respite, and whom we trust. It has a wheel chair accessible shower, and will have a ceiling track for lifts. It is a wheelchair accessible house.