Nakai and Logan Beasley
Logan Beasley (more pictures)
My first son his name was Nakai Angel Beasley, he was born November 25,
1980, in Fitchburg, Massachusetts; weighing 5lbs 8ozs and 21 inches long. I was at that
time a young mother (20) and really didn't know anything about his diagnosis. He was born
a month premature, I had a tough time delivering him, he was blue and had the cord wrapped
tightly around his neck. The doctors didn't know what was wrong with him and he was sent
right away for x-rays which didn't show anything. Nakai stayed at the hospital he was born
in for 24 hours and the next day was taken to Memorial in Worcester, Massachusetts where
they had a NICU. On arrival at Memorial he was intubated and put on a respirator with 50%
oxygen, put under the billi lights because of course he was jaundice. For the next two
months it was an up and down situation, one day the oxygen would be down and the next it
would be back up. Finally they had him stable enough where he was off the respirator and
oxygen, and they decided to send him to UMass Medical Center also in Worcester so that he
could start to get therapy and his diagnosis, because still at this point they had run all
kinds of test and still did not know what he had. When he arrived at UMass he was stable
and again was put back on oxygen, they ran some more test and finally did a muscle biopsy
at which time he was diagnosed with Centronuclear Myopathy. At that time they told me he
probably wouldn't live to be a year old, and I believe they said he was the seventh child
ever born with this. They operated on him and inserted a G-tube.
The following was added by Maria Beasley in October 2000:
I thought I would send an updated story on Logan, so that hopefully it will help others and so you can see where he is. I will go back to the end of the first one when head had been recently trached and was a little over a year old.
When Logan was trached I was very much against it, but really had not choice. Looking back and seeing where he is today it was the best decision I made for him. Logan has grown stronger, has much more stamina, no more blocking off, less infections and less atelectasis. It hasnt been all peaches and cream, we have had some problems and the trach has some minor problems that come with it. Please understand that these are things that we have tried and are trying and they have worked for us.
Logan, came home on the vent after being trached and was only off for 1 hour three times a day. I let Logan basically wean himself off the vent. When he came home he was on the pulse ox 24 hours a day 7 days a week. What I did was when he would wake up in the morning I would make sure he was fully awake and I would take the vent off. I would keep it off as long as his oxygen level was 92 or above, I also didnt jump and put him on it as soon as he dropped I gave him that chance to bring himself back up. Sometimes he did and sometimes he didnt. This is how we went for a couple of months, until he no longer needed it while he was awake (unless he was sick). Also Logan was not on oxygen with or without the vent. Logan only needed oxygen when he was sick. The next step was getting him off while napping, that took a little longer but he did it, and we did it the same way. I am still working on nights, thought we had it a couple of months ago; Logan went 11 out of 14 nights without the vent. Then Logan decided he was a big boy now and he no longer needed a nap during the day, so now when he falls to sleep at night he falls asleep hard and needs it. We are back to square one on nights. I have discussed this with Logans pulmonologist and asked it I was better to put him on the vent or oxygen at night. For now Logan will use the vent but he will go in the hospital for a sleep study, because the concern is to make sure his ECO2 levels are fine and then a decision will be made. Just to let you know Logans vent settings are minimal, 15 bpm, 150 pressure, 7.5 peep and assist control.
Logan was trached in May and between 5/98 and 4/99 he had only gone in the hospital a couple of times for what I thought was pneumonia, but was just bad colds that caused atelectasis. Then on April 1, 1999 Logan had routine surgery that is done when you are trached. He went in to have a trach size change, a laryngoscopy and a bronchoscopy. What I understand is when they are first trached the ENT needs to make sure there is no granulation (scar tissue) building up at the end of the trach. He had done this surgery a number of times before because with his first trach style (Shiley cuffed) I could not change his trach at home. I have no problems changing it with his current one (Bivona cuffed) Anyway he went in had it done (same day surgery) and came home. The only sign of bleeding after surgery was a small amount in his saliva. Then on April 3rd Logan started bleeding heavily, went by ambulance to the hospital and was admitted to the PICU. Because it was the night before Easter (late) they basically let him bleed for a day, but constantly watched him, cleaned him and watched his blood levels. On Monday the day after Easter April 5th Logan went in to surgery and was cauterized, it stopped for a day and again on April 6th Logan went back in to surgery and was cauterized. It seemed to stop and he came home on April 8th. On April 13th Logan started bleeding heavily again went back in to the hospital and had surgery right away, again he was cauterized and it stopped for two days. This time his ENT thought that maybe Logan had a bleeding disorder so he had had a bleeding time done and it was on the high level. On April 15th Logan started bleeding again this time he was given DDAVP which is a clotting medicine before he went in to surgery and was cauterized for the 4th time, it seemed to stop again but Logan stayed in the hospital and had a bunch of bleeding tests done, everything came back fine. On April 20th he started to bleed again and this time was given Amacar which is a medicine to help the clot stay and Alphanate which is a blood product to help clot. He stopped bleeding and came home on April 27th. On April 28th Logan was back this time bleeding like some one had turned on the water faucet, he had clots coming out of his mouth the size of tennis balls. I called the ambulance and the policy here in Massachusetts is they must stop at the nearest hospital; which I knew could not help him at all. When we arrived at hospitals ER of course I was a mad woman. They wanted to put Logan on the gurney and exam him and they wanted us to wait for another ambulance which was going to take 45 minutes because the one we arrived in the guys where not EMTs but the next level down. So of course the first words out of my mouth where not very kind, and as soon as I threatened a law suit if something happened to Logan we where rushed out of there like we where contagious and within thirty minutes we where at Umass Medical Center which is our hospital of preference. Thank God because by the time we got there and they started working on him the Doctor said he had lost his blood pressure and he only had 15 minutes left to live. I was with him and talking to him the whole time the ER Doctor was working on him and it was awful. The problem is it is just so hard to get an IV in him and especially since he had just gotten out of the hospital less than 24 hours before. I thank God that the ER Doctor on that evening was a Doctor who teaches a course called PALS (Pediatric Advance Life Support) he did everything to keep him alive. When he finally got one of the IOs (they take a screw and literally screw it in to the bone so they can put whatever is needed in to the bone marrow) and this was the last resort because they had already tried everything else with no luck. After the Doctor got the IO in he just took 60cc syringes and started pumping Logan with saline, blood, the Alphanate and antibiotic. He saved Logans life. Logan was admitted and they gave him the Amacar and Alphanate for 6 days, he had two blood transfusions, three MRIs and he stayed in the hospital until May 21st. Before Logan had gone home and all the medicines where out of his system and the blood was his, they ran all the blood tests again and some rare bleeding disorder tests where done and they all came back fine. We still do not have a diagnosis. The bleeding tests that had been done where Vitamin K deficiency; Factor 8, Platellate Aggregate, Bleeding time, hemophilia and another which was something like Dino something. The initial cause of the bleeding was that Logans jaw had been cut by the thongs they use to keep his mouth open during surgery, Logan has a very narrow jaw, his tonsil and the back of his throat had been nicked by the scope during the first surgery. I did see the jaw cut and also the nicks they where very small, like I said nicks. After everything happened Logan went back in the hospital in July and October because he had two sinus infections which showed signs of blood in his saliva but to be extra careful I brought him to the hospital and he stayed both times for two days for observation.
COLDS OR INFECTIONS
It has been almost one year since Logan has been admitted to the hospital for anything. We have gone to the ER twice both for high temps. Once was just a bad cold and the other was a stomach bug. I can always tell when he his sick because his heart rate starts creeping up and the O2 starts creeping down. When Logan is sick he gets CPT every two hours, sometimes he needs the vent and oxygen, sometimes just the vent, the last time he didnt need anything which was about a month ago. You see and I cant at this point say for sure but I started Logan on Echinacea also he is using TES. When Logan had gotten the stomach bug I knew before it happened we would be going to the hospital because you see it was Logans 3rd Birthday and he had not been home yet on any of his Birthdays. I told the Doctors as long as nothing showed on his x-ray or there was nothing in his blood work I wanted to take him home; I did and he was not up to his party but he was home and that was all that mattered.
Logans trach size is a 5.5 Bivona cuffed. The only real problem at this point is Logan does not swallow so I am unable to try the speaking valve, because every time you take the cuff down he has a tremendous amount of saliva that drains and he barely can breath. The other thing is it has just come out or he has pulled it out. Which taught me a lesson. Last Thanksgiving we where at my sisters and Logan pulled his trach out, I didnt panic and I knew where everything was. The problem everything I needed was everywhere. This bag, that bag, that pocket, this pocket, etc. After that experience I went home and took two Ziploc bags and I put in each bag, a trach; trach tie; one empty syringe; one syringe with 2 ½ cc of saline (to inflate the cuff); a pair of gloves; scissors (to cut the old tie off); and a pack of KY Jelly. I hung one on his bed and packed the other. I knew that day had I been alone it would have been difficult trying to get everything. Now if I am alone or one of his nurses and this happens it would be much easier.
Logan started to see the Orthopedists when his was about a year and a half. He sees her every six months. His curvature was and still is at 21% we just had new x-rays on 9/21/00.
Logan went to see a Pediatric Opthamologist in August of 1999 to have his eyes tested. His eyes tend to wander and he has Congenital Myopia (Nearsightedness). He has glasses but still refuses to wear them. I try every day some days he will wear them and some days he wants nothing at all to do with them. The eye Doctor is not concerned and said just keep trying.
Logan has always had fluid built up in his ears and has had a number of test showing the ear drum does not move. He will be going in on October 3rd to have tubes put in his ears, he will also have a hearing test called an ABR which is done while you are under and ear molds done so when his hair is washed no water can get in.
Logan had hand splints from 2 months until 1 year he no longer needs them. Logan had AFOs for his ankle, feet and thighs. He was fitted today for KAFOs, knee, ankle, feet and thighs. The Orthopedist prescribed these and we should have them in two weeks. I dont know if they will help him to stand and walk or not. Have to wait and see.
Logan's testicles have not dropped at all, one is above the sac and the other the Doctor cannot find, he was scheduled for surgery last May but the bleeding had started and it was postponed until sometime after he turns 4 years old. Most likely it will be sometime after he gets out of school in June 2001.
Logan currently does not eat anything by mouth, he is starting to taste things a little more but he does not swallow. He is on Pediasure and we use a Flexiflo Companion feeding pump. He gets two bolus feeds during the day one at Noon and 5:00pm. He is on continuous feeds from 9:00pm until 8:00am. He receives one can of Pediasure and 110cc of water at Noon and 5:00pm. His continuous feeds are at a rate of 80 per hour and he gets 550cc of Pediasure mixed with 330cc of water, because of what happen to Nakai I will only put in 1/3rd of the formula at 9:00pm, Midnight, and 4:00am. The whole 880cc is never put in the feeding bag at one time.
TES - THRESHOLD ELECTRICAL STIMULATOR(more info)
Logan;s Early Intervention Physical Therapist thought that the use of TES may help him and she is a trained therapist in TES so she recommended him. First it cannot be used on them until they are at least two years old, you must also have a trained therapist to monitor them and you must see a Doctor to prescribe it and monitor them. Also most insurance companies do not pay for it. So to begin TES was a lengthy process, it took us almost one year to see the Doctor, there is only one Doctor in this area that I know of that can prescribe it. The Doctor was willing to accommodate us and see Logan on the weekend but it is a long trip to Boston, he is a Doctor at New England Medical Center, and it was the winter time so I decided to wait until he was at the Rehab Clinic which is much closer for us and he is only there one day out of the month. We finally got to see the Doctor in March and he thought Logan was a good candidate for TES. Logan is part of a clinical study for people with XMTM and he will see the Doctor every six months. We will see him again on 9/27/00 to get his input as to what and if anything he may see has changed. What is it? Well it is a little machine that is no bigger than a game boy, when Logan falls asleep I attach 1x4 electrodes to his neck and his right or left side in the front and back (the sides are alternated each night), then the leads are attached to the electrodes and the machine. The therapist is the one who determines what strength it is put on when she comes to teach you about using it. While Logan is sleeping the machine is turned on and the strength is set, it stays on as long as he is sleeping and it is used 6 nights a week. The therapist put this on me so that I could feel what it felt like. It felt like a very small vibration every few seconds, not continuous. What is it suppose to do? It is suppose to stimulate the unaffected fibers. Why are we using it? To see if it will help Logan maintain his current muscle strength; and also to see if it will build Logans muscle strength. It can take 6 months to 2 years to see any difference. What areas are we focusing on? Currently the areas of focus are his neck and his trunk, which are the weakest. What do I see? After 4 months of use as I said earlier Logan was able to stay off the vent at night for his first time, (11 out of 14 nights); Logan can lift his arms to the top of his head wasnt able to do this before TES; I also see him sitting in a more upright position rather than slouching. Can I say all of this is TES? I dont know because Logans strength has been increasing slowly since birth.
I knew about Carnitine from speaking with Pam and then I got the copy of Quest that had the article on Carnitine and CoQ10. When Logan was in the hospital for the bleeding I asked the Doctors if they could have Logans Carnitine level checked. It was checked and took about 7 days for the results to come back. His results he had an extremely low Carnitine level, at this point Logan was put on Carnitor. He receives 5 cc twice a day and I did see an increase in his energy level almost right away. He had slept quite a bit before this and then his naps had been shorter.
VITAMINS and FLOURIDE
Logan receives 1cc of Poly-Vi-Sol (vitamins) once a day and ½ cc of flouride once a day.
Logan is a very wet child he has a lot of mucous so he is on Robinul which helps to dry them up. He gets 3cc 4 times a day.
I had heard a lot of good things about Echinacea, so when Logan went for his 3 year old check up in May I asked his Pediatrician if we could try it. I also spoke with his Pulmonologist both of them felt it could not hurt him so they said sure. They didnt know what dosage or how it should be used so I let them know that the pharmacist we use is also into herbal medicine and I would ask him. The pharmacist said we should use the liquid form; alcohol-free Echinacea root; .7cc twice a day and his recommendation was 21 days on 7 days off. In June we started using it; the first thing I noticed was Logan does have allergies (not tested yet) but the runny itchy eyes and the runny nose is minimal. The other thing was in August everyone was sick, I had a cold for 2 weeks, his nurse had to go on antibiotics and Logan was done and over it in 3 days. No vent no oxygen (first time ever). The real test will be this winter.
We have two vents a LP6 plus and LP10; two suction machines a portable one and a stationary one; a Healthdyne pulse ox used as both if needed; a large tank of oxygen; and a 3 medium size portable tanks. Chest Percussor.
Logan started out with a TLC Cart II only. He currently has a Bronco Gait Trainer and a Easy Stand Magician. He is in one or the other approximately 1 hour twice a day. We are currently in the process of trying to get him a Permobile Power Stander Wheelchair. The insurance company has deffered it for more documentation, it has been 4 months already don't know how much longer.
Logan gets 30 minutes once a week Occupational Therapy; 45 minutes twice a week Physical Therapy; and 30 minutes twice a week Speech Therapy.
Logan started pre-school one week after his 3rd birthday. He went to school until they got out for the summer and then he went in July for 4 weeks, and started back for the regular school year after Labor Day. He goes to our local elementary which is 50% integrated with special needs children and healthy children. He goes to school with his nurse Tuesdays and Thursdays from 9:30am to 11:30am and this is where he gets his therapies. He loves it and it is working out well.
Logan cannot sit up on his own or walk, but when I put him in a sitting position he can sit by himself, I am still a little leary leaving him because of the trach but Mom's getting better. He cannot stand or walk alone but when held up he does take steps and puts some pressure on his feet and legs. His only way of communicating is with sign language which he is picking up very fast and he can tell you a lot with his finger. He currently signs about 100 words and does 4 - 5 word sentences. He can finger spell his name, counts to 10 and signs most of the alphabet. We make up signs for his videos and different toys. He loves music and music videos. His favorite person in the world is Shania Twain. He signs his girl friend whenever he wants to listen to her CD or watch her video. He is a normal happy 3 year old with the little temper tantrums except he can't run so he pulls on his trach instead. In my last story I told of his father and I divorcing, we did but his Dad has become a big part of his life and he comes to see him as much as possible. I basically kept Logan secluded for the first two and a half years of his life we really didn't go many places, and I let everyone know including his nurses if your'e sick don't come to our home. It was much harder then to do anything because I had to take his pulse ox, oxygen, feeding pump, suction machine, etc.; now as long as I have an ambu bag, suction machine and a spare trach and I know we will be home by 5pm where all set. I always bring oxygen and leave it in the car just in case. In the past year Logan had his first trip to ToysRus for his Birthday where his Dad let him get what he wanted (a keyboard and Tekno a Robotic dog), he went to an amusent park, and to the fair where he went on his first ride the Carousel. Logan only gets CPT if he is sick or once in awhile he will wake up a little tight and he gets CPT. I wish everyone all the best and pray for all of you. It has been tough but it has also gotten easier.
Below is a poem I wrote for Logan and would like all of you who read this to know I wouldn't give him up for the world.