November 30, 2007
Taegan and I made another 10 hour trek by car out to the Blue Ridge Mountains of North Carolina where she is receiving another round of hyperbaric oxygen treatments. She’s completed six dives so far (as I type this) and already, her speech is flourishing. It always amazes me how quickly the oxygen begins to work wonders in her body. I hope these improvements can be maintained after we complete this round of 40 treatments. I’m also anticipating more improvements in her muscle tone/range of motion, especially in her legs. After our July session of HBO treatments, she made significant improvements in her range of motion in her legs. (Read previous posts from July/August for specific measurements of improvement in her range of motion.)
We’ll be finishing up this round of HBO treatments a few days before Christmas and then we will return in April for her last session of the 120 HBOT program. I’m organizing a spaghetti dinner/bake sale/auction for March 8th in an effort to raise enough money for the lodging and transportation etc. that we will need for that session.
Award winning composer/keyboardist/soundescape artist Jan Pulsford has once again generously offered several of her Christmas compositions up for download in the “download and donate” section of Taegan’s website. http://www.musicallmusic.com/angels4taegan_music/index.html
Jan’s main website can be found at www.musicallmusic.com
We hope everyone enjoys a happy holiday season. May you all have a blessed 2008, filled with an abundance of love, laughter and peace.
October 29, 2007
She was fitted for a new pair of AFO orthotics (leg braces) last Friday. Once casting is completed, she will hopefully be able to start wearing her AFO's on a regular basis.
This week she has had to wear a knee brace on her left leg at night while sleeping. Her leg muscles were beginning to shorten due to her keeping her legs pulled up close to her for a prolonged period of time.
She's still able to participate in all of her therapies during casting which has been a blessing.
Cramping only proved to be a problem during the first week and a half of the casting process, so I'm also thankful that it has tapered off and she is able to have restful sleep.
More updates soon....
October 9, 2007
Taegan caught a pretty bad viral infection (are there any good ones? LOL) 3 weeks ago and is still on the mend, recuperating from that. She missed a week and a half of school and therapies, which threw off her whole routine. She was able to receive the Botox injections 2 weeks ago, and we are just now beginning to see the effects.
She is no longer able to stand or walk, as it is extremely painful for her to place any weight on her left leg. We believe this is happening because the Botox is relaxing that left calf muscle enough now that Taegan is no longer able to depend on the high tone, or tightness of that muscle to bear weight on (usually up on her tip toes.) It's a muscle that she has never been able to use before which now that it is loosening up, is obviously weak from never having been used.
It is probably quite sore as well. Taegan has been saying "foot ow" quite frequently in the past week. Last night I heard her saying "ohhh please... please foot... no foot...please." My heart aches for her, that she is having to experience such things. But really, it is good that this is happening, because it means changes are occurring in her muscles which will hopefully allow her to have more functional use of her legs.
The Botox can last anywhere between 3 to 6 months. It is different for everyone. So, she could receive another dose in 3 months if needed. Most likely, she will need to have this treatment on a regular basis, especially during growth spurts, as the muscles will lengthen and tighten during periods of growth.
Serial casting was supposed to occur last Friday, the 5th. Taegan was still too sick at that time, so casting will take place this Friday, the 12th. I am apprehensive about casting, but realize it is necessary to hopefully achieve the outcome we desire. I'm just worried that since she is already having complaints of her foot hurting, when it is casted it is going to cause even more discomfort and cramping.
Over the weekend, Taegan's foot was hurting her so badly that she screamed when Gramma tried to take off her shoe. She was so sensitive, she pushed away my hand and said 'No!' when I attempted to feel for swelling etc.
On the brighter side, she was in wonderful spirits Monday after school. She really enjoys school and is a much more pleasant child when it's part of her weekly routine. :-)
In other news, I am busy planning the spaghetti dinner benefit for Taegan. It should be either the first or second Saturday in March. This benefit will help pay for our accommodations while we stay in North Carolina for our final round of 120 HBO sessions in April. Watch Taegan's blog space for further details.
Thanks to everyone for keeping Taegan in your thoughts and prayers as she goes through this difficult month ahead of serial casting.
September 18, 2007
It's hard to believe fall is upon us already! Taegan has really enjoyed being outdoors this summer. She is very curious about grass, trees, flowers, and especially rocks!
Taegan began a special needs preschool program in August which she attends 4 days a week. It is provided through our local school system. It took a few weeks for her to adjust, but she is doing well now. She LOVES riding the school bus especially. Her new words are: friends, school and bus. She's singing a lot more songs now, and is able to pronounce the words quite well. She loves to sing "Head, Shoulders, Knees & Toes."
She receives PT, OT and Speech therapies through school now, but she still receives them privately as well. She actually has PT 4x's a week, OT 2x's a week, Speech 2x's a week, Hippotherapy 1x/wk, craniosacral therapy 1x/wk and chiropractic care 1x/month. So, we're still busy, busy, busy!!!
We met with the physiatrist (doctor of physical medicine) last week and decided to go ahead and try the Botox injections and serial casting. Taegan has had such a growth spurt, that her muscle tightness in her ankles is extremely tight now. It is causing her to be unstable with her balance and she has much difficulty walking. Her braces have not fit her for several months now, which is also contributing to her spasticity. The braces keep her muscles stretched out when she wears them. Since she's been unable to wear them, the problem is exacerbating We don't want to fabricate a new pair until after the Botox and serial casting, or they will not fit properly.
She will have her Botox injections on September 26th. We are only doing her calf muscles this time to see how well it works for the rest of her foot. She will be able to have more injections in 3 months, so at that time, the Dr. might decide to inject different muscles, depending on the outcome of the casting and first injections. She will have her casts put on the following Friday (Oct. 5th). Both of her legs will be casted at that time. The Dr. will stretch her foot as far as the muscle will allow, and then cast it in that position. She will have the casts for one week. Each Friday she will have the casts taken off and her foot muscles stretched again, even further, and then recasted in that stretched position for another week. This process will go on for about 4 weeks, depending on how fast the muscle stretches.
Please have good thoughts that the muscle cramps/charlie horses for Taegan will be few and far between! I can only imagine how this might go... when she wore her night splint on ONE foot, she would have terrible muscle cramping where she'd wake up screaming and grabbing at her leg. I could see it spasming. I don't know how I'll be able to help her when this happens with casts on that you cannot take off to rub the muscles when they're spasming.
The Dr. also gave us new dosing instructions for the Melatonin (natural sleep aid) to try for two weeks. Hopefully this will help regulate her insane sleep patterns!!! Lately she goes to bed about 10:30pm, and is up by 3am. She then stays up (in her bed) until roughly 7-8am and sleeps until I wake her for school! She's been grumpy and moody a lot, I presume from this erratic sleep schedule.
The chromosome testing showed that Taegan has what they call a duplication of 8p23.3
It is a duplication of part of the 8th chromosome. Instead of having 2 copies of that part of her 8th chromosome, she has 3. It is a very rare disorder, so rare in fact, that the genetics doctor had to get all the information on it from Wales. They sent me a pamphlet on the disorder about the studies these doctors in Wales have conducted on people with this disorder. The pamphlet only references 40 people who have this genetic disorder. I've taken the information with a grain of salt, because quite frankly, Taegan really doesn't fit into many of the categories they address in the pamphlet.
Some of the physical symptoms of the disorder which Taegan exhibits are: flat nose bridge, extra skin folds around the eyes, lower set ears, and a shared toe joint. The pamphlet discusses mental retardation and heart defects, which appear to be common for this disorder. It's not treatable or curable. Since Taegan has Cerebral Palsy, we're not sure if it is her chromosome disorder that is causing her delay or the CP. That is something we might be able to distinguish as she gets older.
We might have to investigate the possibility of a heart defect, although I would think the NICU would have found evidence of that after her birth. Taegan had a hole in her heart at birth, which they monitored during her first week in the NICU. They did several echocardiograms during that time, and the hole in fact closed on its own by the end of the first week.
We're looking forward to fall... pumpkin decorating, apple cider and Halloween! Perhaps Taegan will go as a mummy...her casts would go quite well with that gettup!
Before we know it, Taegan and I will be headed back out to the Blue Ridge mountains of North Carolina for her third set of 40 HBO treatments! (November 25-December 18)
August 4, 2007
She measured her ROM on her last visit, just before we left for the HBO treatments. So these changes have occurred since her last visit, obviously as a result of the hyperbaric oxygen treatments....
Taegan's hip abduction increased by 20 degrees on her right leg. On her left side, she improved 10 degrees. Hip abduction is the movement you make when you lift your leg straight out (away and to the side) from your body, while keeping your knee straight.
She also improved 15 degrees on her right side with her hip flexion. On her left side, little change, if any was noted with this movement. Hip flexion is if you would lie on your back and raise your leg straight up into the air, keeping your knee straight, and trying to get it as close to your shoulder as you can.
Both of her ankles remained the same in measurement, which was a bit of a disappointment, but I'm extremely happy with the muscle changes this most recent HBO session has helped her achieve. We could potentially see more improvements up to two months down the road from this last set of 40 HBO treatments. The oxygen will continue to 'dissolve' inside her blood stream for up to two months.
It's extremely important right now that we hit all her therapies really hard. The oxygen has awakened dormant neurons in her brain, and also has encouraged new capillary growth. We now have to 'train the awakened neurons' by making sure she gets all the therapy sessions she can receive. I'll be increasing the time spent working with her here at home on all her stretching exercises and speech techniques etc.
Taegan's had a growth spurt too during the past month. She's gotten taller, her hair has grown quite a bit and her feet have grown. Even her finger nails grew like wild fire while we were out in NC. I had to cut them twice a week! Since we've been back, everyone has noticed that she's taller.
Her speech continues to flourish! She comes out with new words almost daily! Her latest phrase is "Uh-oh! I get it." She's so animated when she says it too! She had her first speech session Thursday as well, and she was coming out with all kinds of words and phrases I'd never heard before. She has SO MUCH locked inside her brain, she just needed a little oxygen to help it come out. :-) She was saying "Mine" during speech, and "what?" and "yes" and "I want it" and "I did it!" Oh, and one of her favorites now is, "I know." And she says it appropriately, that's the funniest thing. She started that one while we were out in North Carolina. While in the bath tub, I told her the soap was slippery, and she matter of factly said, "I know."
She's still doling out hugs and kisses too! You can't ever have enough of those, that's for sure!
Thanks to all of Taegan's earth angels for making these accomplishments possible for her.... it is most definitely the hyperbaric oxygen treatments that are awakening our daughter before our very eyes!!!!
July 28, 2007
We ended up having to stay a few extra days because we missed 4 sessions due to bad head colds (both of us.)
This time I noticed an increase in her speech and an increased awareness of her surroundings. Also, her social skills appeared to improve, as she actually engaged in play with other children there at the clinic. It was so wonderful to witness that. She is definitely more 'spirited' and filled with an abundance of energy. So many small things improved this time around, which really have filled my heart with joy. One evening, I opened the car door to get Taegan from her car seat, and she looked directly at me in the eye and smiled the sweetest smile. I'm sure that doesn't sound too significant to those of you who don't know Taegan well, but it really was a major milestone in my book.
There are so many more instances I revel in, and I wrote them all down in a journal to keep for her as she grows. I imagine one day she will read through them and appreciate how far she's come, and all the achievements she attained.
She has been able to express more verbally during and after this round of HBO. She is speaking several 2 and 3 word sentences now. She put her arms around my neck last week and said "I give kiss." and leaned in and gently kissed my lips. She then pulled back and said, again while looking in my eyes, "I give hug." and squeezed my neck as tight as she could. Of course I turned into a puddle right then and there! It was such an amazing feeling to experience my child EXPRESSING her WANTS in intelligible words appropriately! She's continued to do this almost daily, which I am so thankful for indeed.
We'll be returning to Miracle Mountain at the end of November for our 3rd set of 40 treatments. Our 4th round of 40 will be completed by the middle of May next year.
I purchased a wonderful documentary video that was put together by the Discovery Channel called "The Healing Chamber." It is an in depth look at how hyperbaric oxygen is being used to treat various illnesses and diseases, including brain injury (like Cerebral Palsy.) Hopefully I can upload it and provide a link for everyone to be able to view it if you're interested.
There will be a car show to benefit Taegan on Sunday, July 29th from noon to 6pm in the parking lot of the Lone Star restaurant off US 31 South in Greenwood. All proceeds will be donated to Taegan's fund. This car show is for all car buffs and car enthusiasts. Anyone can enter their car into the show for a minimum registration fee of $5.
I am planning to organize a spaghetti dinner and/or pancake breakfast to benefit Taegan's fund in order to help pay for the housing facilities and car rental we will need for our next two HBO sessions (housing for one month, each session.) If anyone has any suggestions/tips/advice, please contact me! :-)
Taegan will begin preschool on August 13th. We have a boatload of appointments between now and then... geneticist, orthotics, neuropsychologist, OT, PT, SLP, CST etc. Summer has flown by... it's hard to believe it will be over soon!
Thank you to all of you who continually check in on us... we truly do appreciate it!
Enjoy the rest of summer 2007.....
June 22, 2007
On July 2nd, I will have to drive Taegan to visit with an open minded Dr. who works closely with the the facility, in order to obtain a prescription for the HBO treatments. I called for directions to the Dr's office today, and was quite shocked to learn it is 2 1/2 hours away from the hyperbaric clinic! Should be an interesting ride all around... Both facilities are deep in the mountains, and having lived in flat, corn field land-Indiana most of my life, it will be a refreshing change.
I am a little nervous though... the friendly woman I spoke with on the phone this afternoon from the Dr's office advised me to pump the brakes while driving through the mountains, and not to push hard to the floor on the pedal, or I might burn up the brakes! I definitely want to be sure to complete Taegan's 120 sessions during the summer and spring months, and avoid the winter months! I don't want to go sliding off the side of a mountain or anything! LOL
Taegan's motorcycle ride was a wonderful success! Everyone worked so hard to make it run smoothly, and it turned out to be an excellent day! We raised just over 6k for Taegan! That will pay for all 120 treatments of HBO at Miracle Mountain. We are thrilled!
Well, there's a ton of packing to be done... will update as I can....
Much Love & Brightest Blessings To All!!!
June 8, 2007
Here is a preview of some of the items that will be auctioned off soon via eBay and local fundraising events.
Richard Oakland is an exceptional photographer with a unique eye from the UK. He has generously donated a limited edition, autographed, numbered print from his collection. It is entitled "Creeping Sun."
To view more of Richard's inspiring collection, visit one of his three web sites at:
This is a 2006 Harley Davidson mountain bike. It is barely used and in mint condition. Previous owner only rode it twice.
If anyone is interested in the mountain bike or the four beautiful pieces of art work listed here, please contact me via email@example.com. Also, dimension specifics can be provided upon request.
Thanks again to everyone for their continued love, prayers, and support! You are helping to change Taegan's life forever... and we will always be thankful for that!
May 6, 2007
April 21, 2007
I was a bit sad when the HBO sessions were complete because Taegan seems like a different child while receiving HBO. She was very content and social (which she hasn't been in recent months prior to HBO). Also, one of the best things to come from the HBO treatments was a major improvement in her sleeping habits. She was sleeping all through the night (except for 3 nights during the 40 treatments, but even then, she was only awake for an hour or so then!) She slept 8-10 hours per night, which was truly wonderful! She is such a different child when she has SLEEP! (Aren't we all?) In her 3 short years here on earth, she's never slept for an 8 hour stretch of time, ever!
Her appetite also sharply improved during HBO. I am positive she has gained weight. We'll see just how much when she meets with the nutritionist next week.
Unfortunately, she has resorted to her old sleeping habits. She's still pretty much a pleasant child, just a bit moody at times. I've recently learned that her moodiness and insomnia could be coming from a copper toxicity.
While at the Cole Center for Healing, I had a tissue sample sent to the lab for extensive analysis. The results were really quite shocking. Taegan has very high copper and aluminum levels, and has very low sodium and potassium. Her adrenal gland is also not functioning as it should be and is causing a glucose intolerance in her body.
I've purchased the suggested supplements to help correct the various imbalances in her body and hopefully we'll begin that regimen along with major dietary changes next week after consulting with her nutritionist.
Another thing I did not realize is that copper affects the ability of the muscles to function properly. It even affects the myelin sheath of the nerves (which is already a concern/problem area for people suffering from CP!) So, I'm hopeful that once the supplements and dietary changes correct her imbalances, we'll see some positive effects reflected in her mood, improved sleeping ability and muscle function.
She showed such positive improvement during that first week of HBO, especially with her muscle tone. She was able to get her left foot flat on the ground for the first time in her life. By the second week of treatment, her braces no longer fit properly (I am guessing it is because of the changes in her muscle tone, but I'm no expert!) She can no longer wear them because they rub blisters on her heels, especially her left heel. However, she isn't really putting her left foot down flat anymore on her own. I have to physically make her do it now, which still baffles me. When she walks, she's back to walking on her tip toes on the left, and is very shaky and unsteady.
My only rationale for this is that perhaps other muscles in her legs loosened up too, considerably, during HBO and she has never had to use those muscles before. I'm wondering if she's just unsure of how to use those muscles to steady herself and walk... they obviously would be weak from never being used before. Maybe we just have to focus on strengthening those muscles in order for all the muscles in her leg to work synergistically. I'm hopeful that her physical therapists might have some insight into what is going on. The HBO technician reminded me that it is possible to see continued changes from the HBO treatments up to 1-2 months after the cessation of treatment.
Her appetite continues to be healthy and she's even trying some new foods now. Of course, we'll be altering her diet quite extensively soon (no refined carbs and no sugars, including fruit and fruit juices.) Dietary and supplement recommendations were included in the tissue analysis process. They recommended Taegan be retested in 3-4 months, so that supplements can be adjusted or stopped altogether if no longer needed.
Meanwhile, we're continuing to raise money for Taegan so that she may continue to receive the HBO treatments. I'm hoping she can receive at least another 40 before she begins preschool in August.
I mentioned briefly in a previous post, I've met a very generous man who has a HBO clinic in North Carolina. He's offered 120 HBO treatments to Taegan for $6,000 (for a limited time, as his company is a cooperative.) The 120 sessions do not have to be done consecutively, but can be broken up into sets of 20 or 40 until completed.
I'm researching the possibility of flying there with Taegan when the time comes. There are several non-profit organizations out there (I believe that is correct) that offer free flights to parents/children of special needs, to help them receive the necessary medical care they require. I'm still just learning about this possibility....
Many thanks to the Women's and Men's Eagles Club of Fairfield, Ohio... they raised $505 during their recent benefit for Taegan on April 12th. They are a wonderful group of people who have taken a special interest in helping Taegan.
Taegan seems to be missing Jake and Alli... she looks all around the living room and kitchen calling "baby!!! baby!!!" and I think she's looking for her 6 year old friend/playmate Alli. She often times called her baby while we stayed there with the Ball family in Cincinnati.
Taegan was evaluated this week by the Special Services team for our local school system. They will use the results to qualify her for services through the school system when she starts in the special needs preschool program this August. We'll have her case conference to determine eligibility and to write goals in late May.
It doesn't seem possible, that my baby is ready to begin school!!! I still cannot believe she will be turning 3 in June! The NICU days really don't seem all that long ago... I still have dreams (nightmares!) about her time there. It absolutely doesn't seem like 3 years has passed since her traumatic birth. Where does the time go?
I'll post another update soon... ~Be well~
**Pictures: 1)Taegan inside the HBO chamber. 2) Taegan and Certified HBO Technician Scott Fuhr. 3) Cara, helping Taegan with the steps at the Eagles Club benefit on April 12th. 4) Alli and Taegan having fun in the bubble bath! 5) Taegan examining her new Barbie on Easter. 6) Alli, Cara, and Jake... Jeff was working when this pic was taken. Taegan adored him too!
April 11, 2007
They will be hosting a cook-out at the club on Thursday, April 12 at 5pm. Proceeds from the cook-out will be donated to Taegan's medical fund.
The Eagles Club is located at:
8560 Michael Ln, Fairfield, OH
If you're in the area, stop by and enjoy some good food for a great cause!
April 10, 2007
Some more obvious gains are her improvements with speech. She is very vocal now, and jabbers almost constantly. She's saying new words almost daily. And the fact that they are spontaneous is even more thrilling. She will say "Hi!" often times when she enters a room (to whomever is in the room, and even to the dog!) In the past, you'd have to prompt her, sometimes 5 and 6 times before she'd say "Hi!" if she'd even say it at all. Now, she's saying it on her own many times, with no prompting.
She has continued to say "Yes" when asked a yes/no question, but much of the time requires prompting to do so, but STILL! That is a MAJOR improvement for her. Her speech therapist will be thrilled, I'm sure! (We've worked on yes/no for the better part of a year it seems!)
Taegan has said "Open!" to the HBO Technician twice now, as she waits for him to open the chamber door. It's too cute to hear her little voice... and to hear her saying an APPROPRIATE word in the context of the situation, all on her own. She was even proclaiming "Open!" to each door we came to at the clinic today. It's so wonderful to see her grasping the 'cause/effect' of her language.
Her social development has even improved! I'm not sure how much of it is from being around a 6 and 9 year old daily, or how much is from the HBO, but she definitely is making gains socially. She continues to have better eye contact, and is smiling at people and interacting with them, and seeming to ENJOY it, whereas prior to March 27th, she showed little interest in interacting with peers. Her shyness with the opposite sex is diminishing as well. She no longer cries when Jeff talks to her or when the male technicians at the clinic help her in/out of the chamber.
Another major improvement has been her increase in appetite. She is eating so well, I would swear she's gained at least 5 pounds!!! I am anxious to see what the nutritionist reports when she meets with her on April 25th. She's still pretty picky with what she will eat, but she definitely has a healthier appetite since beginning HBO treatments. She ate an entire can of green beans for supper this evening, along with a Nutra Grain cereal bar, 5 Ritz crackers, 4 nice sized strawberries, 6 ounces of chicken noodle dinner and 6 ounces of apple juice!
The improvements with her muscle tone have seemed to plateau a bit this week. She seems to be fighting off an illness... perhaps a cold? Her muscle tone in her legs actually began to feel tighter at the end of last week, which was concerning to me. But she was showing improvement in other areas, as mentioned above.
In the past, when Taegan is ill, it presents in her muscle tone first, and then she has the more obvious symptoms of illness like runny nose, fever, cough etc. So, I have been worried that she is trying to fight off an illness. So far, she's only had a bit of a runny nose. The drastic change in weather hasn't helped anyone, that's for sure. It was 85 degrees here in Cincinnati for 3 or 4 days last week, and overnight the weather pattern changed and the high for the next few days was in the upper 20's! And it snowed off/on for 2 days! It is plain crazy.... Snow on Easter... Go figure.
I know that changes are occurring in her legs though, because her AFO's (leg braces) no longer fit properly! I was trying to keep her in them as much as possible to get prolonged stretching of her leg muscles, and she was crying and trying to get her AFO's off, which is unusual for her. When I took them off, I noticed a red blister on her left heel. It's since scabbed over, and still looks pretty painful. So, she's not been able to wear them since. When we get back to Indy, I'll have to take her back to the orthotist and see what can be done so that they fit properly again.
Her stretching exercises are still much easier to do now, which I'm thankful that hasn't changed with this recent muscle tightness she's experiencing. She's not been standing flat footed as often as she had been the previous week. She's loosing her balance quite a bit now, and has resorted to tall-kneel crawling some.
Today I noticed she winced as she put weight on her left leg and her heel went down to the floor. She picked her leg up real quick and decided to crawl instead of walk. I'm not sure what is going on with that.... I might try to talk with Dr. Cole about these things, and see what his thoughts are about her progress.
We've got 12 treatments left....
Meanwhile, I've recently come across a facility out in North Carolina that has the same type of HBO Chamber/set-up as the Cole Center does, and they are offering 120 HBO treatments for $6,000 (limited time only!) That is an AMAZING deal for HBO! The 40 treatments Taegan is receiving presently cost a total of $4,620. I have spoken with the owner of the clinic in N.C. and told him I'm going to try my best to raise 6K before the end of summer so that Taegan can receive the 120 treatments before she begins preschool this August. He said he'd work with me if the offer was expired when we were able to come to his clinic.
So, once we finish up here in Cincinnati, I'm going to try to organize several more larger scale fundraisers back in Indy. If any of you would like to volunteer to help me out with fundraising, please contact me! I'd like to organize a spaghetti dinner and a silent auction.
There will be a motorcycle ride to benefit Taegan in June. I will post more details on that as I get them.... until then, keep checking back for updates.
Big hugs to everyone for all their prayers, love and support for Taegan!!!
April 6, 2007
April 5, 2007
Here are some recent photos of Taegan in the hyperbaric chamber as well as photos of the chamber itself. Taegan really enjoys the therapy... she sometimes cries when we have to get out of the chamber! She is always in good spirits after the treatments... perhaps it's a side effect? Enjoy the photos. The last photo is of her standing flat footed on her left leg. I am shifting her weight to the left so that she HAS to weight bare through that leg and foot, as she still will not do it on her own. I'm sure it's awkward for her since all she's ever known how to do is stand on her tippy-toes on the left foot. I hope her progress continues to be as wonderful as it has been to date.
March 30, 2007
Taegan had her evaluation with Dr. Cole on Tuesday, and also began treatments that day as well. The evaluation went well, and I really enjoyed the time with Dr. Cole. He is a very knowledgeable man. He feels that Taegan will be a wonderful candidate for HBO and that her progress should be remarkable. He told me a story about a man with CP who received HBO for the first time at age 20, and the improvements for him were significant. He also explained that the benefits Taegan receives from HBO will be PERMANENT. Even if she regresses during illnesses, she will not lose any function she gains as a result of HBO. That was a relief to hear, as I wasn't sure as to the longevity of HBO. He also explained that each person is different, and each person benefits from a different number of HBO treatments. For example, he can't say that after 40 treatments, Taegan will have received all the benefit from it that she possibly can... it may take 50 treatments, or 120 treatments. No one knows... the body will tell you when it's done all the healing it can do with these treatments.
We also met with a homeopathic doctor who discussed supplements with me and several other testing options to help Taegan achieve optimum health. I will probably put her on a few supplements that will assist in healing. Omega 3 fatty acids is one that was mentioned. This helps with the mylenation process (protective layer covering the nerves in a person's body.) With CP, myelination is affected.
As of this evening, Taegan will have completed 8 'dives,' or treatments. We do two treatments a day, about 4 hours apart, and will complete a total of 40 altogether.
She is doing quite well for the 90 minute sessions. The HBO is technically 60 minutes in duration, however, we're in the chamber for approximately 90 minutes. It takes about 10 minutes to drop the atmospheric pressure down to 1.5 ATA (about 20 feet below sea level) and it takes about 15 minutes to return to sea level ATA. Taegan fusses a bit while we descend, as it is slightly uncomfortable on the ears. I have a whistle that she blows while in the chamber (and I squeeze her nose while she blows) that helps to release the pressure build-up in her ears. I also bring in a bottle of juice, as it also helps to drink during the pressurization and de-pressurization periods.
The chamber has 2 portholes that you can see out of (and outsiders can see in.) Outside one of the portholes hangs a TV. We watch videos through the porthole, and the sound is played inside the chamber on a speaker system. Once we are at 1.5 ATA, I place an oxygen hood over Taegan's head and hook up her O2 tubes to the bottom of the hood, and the 100% oxygen is piped in through the tubes and stays inside her hood. So, she is always breathing 100% oxygen while the hood is on. Inside the chamber itself, there is normal room air. I do not wear a hood while I'm in there with her (I'm sure I'd have to pay for that!) But, the technician did say I can also benefit from the treatments just by breathing the room air at the 1.5 ATA depth.
I have felt more tired since doing the treatments (which is a side effect of HBO actually.) In fact, Taegan has slept through the night the past 2 nights now! That is AMAZING for her. As many of you know, her typical sleep pattern prior to HBO has been to sleep for 4-6 hour periods (6 on a good night!) and then be up for several hours before falling back to sleep. She has very restless sleep. Last night, she went to bed at 10:30pm and when I turned in for the night around 1am, she hadn't moved from the position in which she fell asleep! I heard her change positions about 4am. She didn't wake once throughout the night. In fact, I had to literally drag her out of bed at 8:45am in order to get her dressed for her 9:30am treatment! She was not a happy camper!
She is jabbering a lot more, and is using spontaneous words! She answered a yes/no question for me yesterday for the very first time! I asked if she would like a drink and she said "YES" as plain as day! She also is saying Cara and Alli (the names of my friend and her daughter whom we're staying with here in Cincinnati)! She has been putting a few words together to say short phrases like "I did it." and "I go," "I eat," and even a "Mommy, I eat." She has never requested to eat before! She is counting more clearly now. (She counts to 20, skipping a few along the way). She's saying her ABC's more clearly as well.
I've also noticed she's beginning to make better eye contact with people, especially when they are talking to her. Usually, she appears to 'ignore' people when they are talking to her.
Her muscle tone is slowly improving. I had hoped for more drastic effects...but I keep reminding myself she's only had 7 treatments, and her feet are the furthest thing from her heart and brain! Patience, patience. :-)
Her muscle tone in her right leg and foot has improved by about 15 degrees, easily. However, her right foot was never significantly tight. It had some tone in it, and requires her to wear a brace, but nothing as significant as her left foot.
The high tone in her left foot is definitely changing though. I can get it to stretch with more agility than before and I'd say she's gained a few degrees of movement in it so far. When she is barefoot and walking, she is still up on her left toes, but I can tell it isn't as high. Her gait is very unsteady now, and she is falling a lot. So much so, that she has resorted to 'cruising' again... she tries to keep one hand on furniture or a wall while she's walking barefoot now, to help steady herself.
At first I was alarmed by this change in her walking pattern, but then I realized, her muscles are loosening up, and she's having to learn to adjust to that. Before this, she's compensated for her muscle tightness and walked high up on her tip-toes and the top half of her body sort of bent into a "C" shape as she walked, to balance herself. Now, she's not 'bending herself' into that shape as sharply and her heel is slightly closer to the floor.
When she is standing with both arms against a piece of furniture etc. she is standing FLAT FOOTED! She's never been able to do that prior to HBO! It's amusing to watch her do this, because I don't think she realizes she's doing it at first, and then you can tell when she realizes, because she will pull her foot up off the floor and rest it on top of her right foot! I also think that perhaps it feels like a muscle stretch while she's standing flat footed. I compare it to how you do a pre-jog warm-up stretch. I imagine that might be what she's feeling, and causing her to notice she's flat footed while standing.
I'm thrilled to see these small changes already after only 7 hours of HBO! I continue to pray we see some significant changes by the 40th hour!
I will be posting pictures of Taegan inside the chamber and doing her treatments shortly. I've gotten permission from the technician at the center to take some video as well. We just have to do it at a time when it's not so busy at the clinic. So, hopefully this weekend will allow that opportunity, and I'll post the pictures here for everyone to enjoy.
Thank you again to all Taegan's earth angels for helping to make these changes a permanent reality for her! After all, it is the kindness all of you showed by donating to Taegan's fund, to allow us this opportunity. We continue to be thankful for each and every one of you.
March 21, 2007
To view a more in depth account on the specifics of HBO and what it can help promote, click here: http://www.colecenter.com/therapies/hbot.html
The appointment is rescheduled for March 27th. We're keeping our fingers crossed that we'll both be healthy enough to begin HBO that day!
We cannot do HBO with any kind of head congestion etc. because we have to be able to equalize the pressure in our ears as the atmospheric pressure inside the chamber drops. We will be 'diving' to a depth of 20 feet below sea level. It is equal to 1.5 ATA
Fingers crossed that we both are completely healthy by Tuesday morning!
As always, thank you all for your continued support and prayers!!!
March 9, 2007
Click the link below to view more details about JeAnnah's journey and how HBO helped her forego a life of permanent disability.
See how one mothers strength and determination in pursuing HBO ended up saving her daughter's life.
March 19th is the day!!! Taegan has an evaluation scheduled with Dr. Cole and could possibly receive her first treatment that same day!
I will try to provide updated blogs throughout the course of her treatments so that you all can come along on this journey with us (a virtual journey, but nonetheless...)
Thank you to all of Taegan's angels here on earth who have helped make HBO a reality for her! You all hold a special place in our heart.
Every donation was/is appreciated no matter how large or small. Every dollar donated will help make a difference in Taegan's life! But most of all we are THANKFUL...thankful to all of you who made this possible for Taegan!
Please continue to pray for Taegan. Pray that this treatment is the key that will unlock her caged wings... and afterwards she will be able to spread her beautiful wings and soar!
~Blessings of Love and Light~
March 2, 2007
The ENT called last week to say that he consulted with several other doctors and they feel Taegan's sleep apnea isn't significant enough to warrant any further action at this time. He said they feel she should out grow it in 6-12 months. He'd like to see Taegan again in 6 months. I'm not so sure how comforted I am by that answer, since he stated to me that the sleep study was so "wishy-washy" that it really told him nothing. I'm also sure he realizes that insurance will not pay for another $3,300 sleep study until next year, and I surely cannot pay that out of pocket expense! So, that is where things stand with the sleep apnea issue.
The neuropsychology appointment went well. It was basically an appointment for the neuropsychologist to meet with Taegan and get a little bit of background and history on her. They want to set up a 3-4 hour evaluation/test for her in the next month. It could be longer than a month, as I told them we hopefully would be in Cincinnati by then. :-)
The physiatrist suggested we do Botox injections along with serial casting on Taegan's left leg/foot. Her tone is increasingly worsening, as is expected as she grows. The muscles aren't relaxing as she gets taller, which is a typical occurrence in spastic diplegia diagnosis. More than likely, Taegan will need to have Botox injections and serial casting until she is done growing (through young adulthood). Once she's done growing, she most likely will have to "maintain" her muscle tone through the use of Botox injections and night splints as well as wearing her braces daily (AFO's).
The physiatrist also suggested we move forward with the genetic testing, just so that we have a complete 'picture' of Taegan, and also so we can best help her. She wrote a prescription for a medication that is supposed to help Taegan with her sleep difficulties. It is actually a blood pressure medication, but has been used for it's side effects of drowsiness. I've gone the natural route with little success... so reluctantly, I've agreed to try commercial medications. So far, I haven't seen any improvement with her sleep patterns/habits, but perhaps it needs to build up in her system before it takes effect.
She also wrote a script for another medication to help with Taegan's continuing bowel issues. Hopefully something will give her some sense of normalcy in that regard. Thankfully, Taegan's hip X-rays look fine at this time. She will need X-rays every 6 months to make sure her bones are aligning properly in the hip sockets.
Taegan continues to have eating issues, and at present is eating about 8-10 foods consistently. I worry that having Pop-Tarts for 3 meals a day isn't 'cutting' it... but I've been reminded by several of you that kids just go through these odd stages. I just hope it doesn't last too terribly long.
The recent fundraiser at Chick-fil-A netted $206.59. Many thanks to the wonderful people at Chick-fil-A (Greenwood) and especially to Katy Johnson, who organized the event and made sure everything ran smoothly for us. Also, thank you to everyone who braved the snowy weather to come out and offer support for Taegan.
Thanks to all of you for the recent private donations you've sent to Taegan's fund. I'm thrilled to report that we're about $500 shy of having the full amount for the HBO treatments!!! I spoke with the Cole Center this week and they're all ready for us.... have our insurance info etc. Wonderful news: Our insurance will pay for the consultation and evaluation with Dr. Cole. (it just will not pay for the HBO treatments!) So, we're hoping to be in Cincinnati sometime this month!
February 22, 2007
These pictures were taken last Saturday during Taegan's fundraiser at the Chick-fil-A. The weather didn't cooperate as much as we would have liked until late in the afternoon, but we still had a pretty good turn out. Thank you to everyone who helped make the day a success! We should know the total amount that was raised during this benefit by next week. I'll keep you posted...
Unhappy Taegan (she had little sleep the night before, per her usual!)
Her best attempt at a nap....
Looking out the window with Gramma....She enjoyed watching the cars drive by after exiting the drive-through window.
Later that night, a more happy Taegan appeared....
February 16, 2007
I still think she's having some kind of vision issue because she does not see things on her high chair tray that are closest to her. Also, when she is walking, she fails to see things in her path closest to her, and stumbles over them frequently. For example, if she is walking by the couch and people are seated on it, she will trip every time over their feet, as if she doesn't see them there.
Her Occupational Therapist mentioned the possibility of vision therapy and more vision testing that can be done for children Taegan's age. I'll probably pursue that possibility.
I took Taegan for Xrays of her hips this past week. We should find out the results on February 26th when we meet with the physiatrist.
Taegan's appointment with the ear, nose, throat (ENT) doctor was less successful. The doctor was very nice and personable. However, he was unable to give us any guidance on what the next step should be in remedying her sleep apnea. The sleep study test that was performed on Taegan back in December did not provide enough details for the ENT to determine a course of treatment. The ENT said he would make some phone calls to the sleep lab physicians who read the test results and see if he could find anything more conclusive and then he'd give me a call. Still waiting on that call......
I'm extremely frustrated that we wasted our time on that sleep study, and spent(accrued more medical debt!) $3,300 for a test that failed to provide enough details to determine a further course of treatment for Taegan. I'm even more infuriated that Taegan had to endure such discomfort and distress for no reason...why did we bother having it done if the test couldn't provide adequate details for further treatment options? I'm sure the sleep study test CAN be given in a manner that DOES allow adequate and accurate recorded information that CAN be beneficial in determining a proper course of treatment. Unfortunately, the facility where we had Taegan's sleep study done wasn't able to provide that.
I think I should start a support group for parents of children who require frequent medical care/appointments. Seriously! Two and a half years of constantly seeing specialists and added doctor visits due to prematurity and the plethora of problems Taegan has faced has really been an 'experience,' to say the least! Until you live it, I don't think anyone can possibly understand the frustration it causes and the energy it drains from you. I have often remarked that even though I am not working at the present time, I have been busier and more exhausted than I have ever been, even when I was working full time!
More updates to follow....
January 31, 2007
The Greenwood Chick-fil-A on St. Road 135 in front of the Meijer will be having a fundraiser to benefit Taegan on Saturday, February 17th from 6:30am to 10pm.
You may dine in or stop by the drive-thru. Be sure to tell them you'd like the coupon for Taegan's fundraiser if you haven't gotten one from me ahead of time. The cashier will need to write the total amount spent at the bottom of the coupon. Twenty percent of what you spend goes directly to Taegan's Benefit.
Taegan will make an appearance at some point, probably for lunch, and possibly dinner. We'll have to see how she sleeps the night before etc.
Be sure to tell your friends and family to bring a big appetite to make a BIG difference in the life of a child.
January 29, 2007
Taegan's ophthalmologist appt. is still scheduled for February 7th and the ENT Dr. is still on February 8th.
Taegan continues to struggle with her sleeping. Her typical sleep pattern has been to sleep unsoundly for 3-4 hours, and then she will be awake, sometimes for 2 and 3 hours before falling asleep again.
The other night, she awoke with a shrill scream that caused me to bolt out of bed practically before my eyes opened! She was having what appeared to be a muscle cramp in her leg. It was her left leg and she was wearing her night splint at the time. When I got to her, her left leg was tremoring and she was grabbing it. I had adjusted the splint the night before, and increased the tension by one increment. (The tension goes from 1-5.) It is set on 2 presently. The orthotist had suggested I increase it one increment per week. The number 2 setting is only slightly bent, so I was quite shocked that it could cause such a reaction. Of course she should be up to 5 by now, but she had all that trouble with being able to tolerate it because of how sweaty her foot would get. We have special socks that she wears with them that have helped reduce the sweating significantly. But, now it seems there is an issue with muscle cramping.
When I meet with the physiatrist, I am going to ask about Botox injections for her high muscle tone in her left leg. Another mother of a CP child advised me to ask for Valium for Taegan if we went ahead and did the serial casting. She said the muscle cramping was almost unbearable for her son when he was serial casted, and that they had to use high doses of Valium to manage his pain. I just cringe when I hear these stories.... and it makes my heart ache even more for my little girl who has to go through all these painful things. She should be enjoying being a child, and exploring, running, jumping, climbing etc. etc. All the things that healthy 2 1/2 year olds enjoy. I still have faith that one day Taegan will do all those things, and I hope that day comes as a result of HBO treatments.
I have been keeping a food journal for Taegan to see if I cannot identify some sort of 'trigger' for these sleep disturbances, but so far, nothing is jumping out as the cause. It may not be a food cause at all. I'm trying to brainstorm all possibilities. I'm hoping after her ENT appointment, there might be a more clear picture painted....
Taegan has been back on Prevacid for approximately 3 weeks now. It seems to have helped her reflux, although she still is having it, just not as severely as she did prior to beginning the Prevacid.
Some good news.... Taegan started saying "Grandma" and "Grandpa" this week. It sounds like "Gamma" and "Gampa" but it's definitely music to our ears! She also said "Taegan" last week as I was spelling her name for her on paper. I got to "TAE" and she quipped, "TAEGAN!" as if she knew what I was spelling. Perhaps she does!? You never know with her...our little puzzle. I just love her adorable voice when she talks.
In other news... Taegan enjoyed her first 'snow experience' last week. She helped build a snowman with "Gamma" and mommy. Her favorite thing to do was EAT the snow. She loved it, except for when the snow touched her skin...she got really upset a few times when it got on her arms where her mittens weren't covering her skin. It was a hoot watching her trying to walk in her snow boots (as if she doesn't have enough trouble trying to walk in regular shoes w/braces!)
You can view some of her snow pictures on her myspace page, which is: http://www.myspace.com/angels4taegan
Hope everyone is staying healthy and warm this winter!!!
January 18, 2007
Her Physical Therapy sessions were increased to 75 minutes per visit, and her Developmental Therapy sessions were increased to 1x/wk instead of 2x/month. Also, Occupational Therapy services will be 2x/month. Nutrition services will stay at 1x/month, and Speech Therapy remains at 1x/week as well. She's still receiving CranioSacral Therapy weekly as well (privately).
For her OT sessions, she will be able to receive that through the same facility where she is doing private Physical Therapy (in addition to First Steps Physical Therapy). She will be able to do hippotherapy during her OT treatments as well, which I am thrilled about, and I'm sure Taegan will be excited, as she absolutely loves having therapy there. She just lights up and participates in therapy so well while she's on the horse.
A representative from our local school district met with me as well and explained a bit about how the special needs preschool program works. Taegan will be transitioning out of the First Steps program in June when she turns 3, and will attend the special needs preschool program beginning in August.
Even though I worked in a special needs preschool setting for 5 years, it is still scary to think about MY CHILD going off to school! It seems like it was yesterday that I brought her home from her month long NICU stay, weighing 5lbs 5oz. Just thinking about how much she's grown brings a tear to my eye.
I'm pleased with how her therapies are going... it's a slow process with Taegan, but I know we'll get there. If we could get her tone issues resolved, I know she'd just take off in her PT sessions. I am anxious to see how HBO treatments affect not only her muscle tone, but her SPEECH as well. I've read many reports about non-verbal children speaking after ONE session of HBO treatment. So yeah, I have high hopes.... but I'm also realistic, and know that if it doesn't happen for Taegan that way, it's ok. It will happen when she's ready and when it's supposed to happen.
It's just so frustrating for me (and I'm sure for Taegan as well) when she cannot communicate her needs. She had a really rough couple of nights this week. One night, she was up crying every few minutes until 7:40am! She kept saying "Owie" and rocking herself in her crib. I tried everything I knew to help her... and nothing could comfort her enough to stop her tears. I asked her where it hurt... where was the owie.... in many different ways. "Show mommy your owie Taegan..." Nothing. "Tell mommy yes or no.. Does your tummy hurt? Does your head hurt?" Nothing. "Touch where it hurts Taegan." Nothing. "Shake your head yes or no Taegan.... " Nada. She is able to shake her head no, but isn't consistent with that unless she adamantly does not want something you're offering or suggesting (meal times come to mind here!)
Since she's started back on the Prevacid(to help manager her reflux) last week, she's developed an aversion to medicines. That includes all flavors of Tylenol. You'd think she was being stuck with a needle or something the way she fusses while getting her to take that Prevacid! It's not even that bad of a taste!
So, now apparently, she associates all 'medicine' with the Prevacid experience, and it's like a full fledged wrestling match trying to get her to swallow it. Oy!! So, here it is, 3am the other night, and I'm trying to get her to take some Tylenol, hoping that whatever it was that was ailing her would be eased with the Tylenol. It didn't seem to help any... It's times like those that I wish I were a mind reader. It's frustrating and tears at my heart to see her in pain, especially since she cannot tell me what her needs are, ever!
We've been working really hard with this in Speech Therapy. Hopefully she'll be able to communicate her needs one day.
I've scheduled an appointment with a pediatric ENT out on the west side of Indy for February 8th. I suspect he'll want to remove her tonsils and adenoids to see if that corrects her sleep apnea. Sedation is so scary, in my opinion... especially for kiddos so young. But if it needs done, we'll do it.
In other news... we're about $1,400 shy of reaching our goal of $4,400 for Taegan to be able to receive the hyperbaric oxygen treatments.
More updates to follow soon....
January 6, 2007
Also, she wants to go over past blood work/tests Taegan's had done (birth-present), as she's concerned about a possible genetic disorder. No specific disorders were mentioned, only that there are some that fit the characteristics of Taegan's bowel problems, as well as some of her physical features.
The physiatrist is the doctor who ordered the PH probe and EEG monitoring be included in the sleep study, which of course was not implemented. So, I'm not sure whether we'll have to do these tests separately or not.
I believe I am supposed to be scheduling an appointment with a neurologist for EEG testing as well... Also, hip X-rays were discussed at our previous meeting, but no order was written for it.
She will also have her first appointment with a neuropsychologist this day as well, although I think the appointment is more geared towards the parent. I believe he will be discussing possible behavioral issues that could arise that are characteristic of cerebral palsy diagnosis, and how to best handle them if/when they arise.
On February 7th, she will have an appointment with the pediatric ophthalmologist. She's seen him 3 previous times, all in her first year of life. With Taegan's PVL diagnosis, it is common to have vision problems. Some PVL children have cortical blindness, retinopathy, cataracts, and a whole plethora of other vision issues. Thankfully, Taegan only has an astigmatism in both eyes (as of her last eye appt. at 12 months old).
Taegan hasn't been able to wear her night splint consistently due to the excessive sweating issue. The orthotist ordered two types of special sweat absorbent socks that just arrived Friday, so we will be trying those out and hoping that solves the problem.
Since the last update on December 2nd, Taegan has had another cold and also a stomach virus. She's currently fighting off the beginnings of yet another cold... in the sneezing/itchy nose stage at the present time. I have no idea where the exposure to these illnesses is coming from, as I am careful where I take her during RSV season (October-May). This is the first year we're not living like hermits during RSV season. She doesn't have to receive the RSV shots monthly anymore, thank goodness. They were nearly $6,000 per shot!!! She does have contact with other children and shared toys at the facility where she has her hippotherapy once a week. That could be where she's coming into contact with all these lovely germs... also, her immune system is still fragile, as she hasn't built up much immunity to all the germs that are out there. Other than that, she makes the occasional trip to the grocery store etc. Go figure, I guess it's inevitable.
Overall, she's just not been her normal, pleasant self for about 3 months. She's cranky and just doesn't act like she feels well. I suspect she's having reflux issues again. She continues to have bowel issues, despite being on a prescription medication for constipation for the past year.
She has also struggled with eating, and has progressively gotten more finicky with what and when she will eat. Most days, I rely on the Pediasure supplement to meet her nutritional requirements.
At Taegan's two year pediatrician visit, she weighed 26 pounds. Six months later, she has only gained a few OUNCES. She is in the bottom 25th percentile for height and weight for her age.
In mid December she was re-evaluated by the nutritionist/dietitian and again qualifies for services. She will be seen once a month.
Taegan's sleep hasn't improved... she continues to sleep for 2-3 hour stretches most nights, and is then up for hours at a time. She just lies in her crib babbling and crawling around, and singing to herself, with an occasional holler here and there. Most days, she refuses her nap. I still make her lay down for one, and get her up after 90 minutes if she's not sleeping. I don't understand how she can be so tired, and yet not sleep! This is something I will discuss with the physiatrist again in February. (as I type this entry at 4:03 AM, she has been up for the past 70 minutes. She didn't fall asleep until close to midnight tonight as well...so there's her 3 hour stretch!)
The lack of sleep is carrying over into all of Taegan's therapy sessions. She is so tired, she is not wanting to participate. She's also very grouchy as a result... which I understand, because I am too when I am sleep deprived. So, overall, Taegan and I have been a pretty grumpy duo.
January 11th Taegan will be re-evaluated by the Occupational Therapist, Physical Therapist, Developmental Therapist, and Speech Therapist by the early intervention team here in our state. This is to make sure she still qualifies for services (which she's entitled to until she is 3 yrs old.) She will definitely qualify for services, as she's still very delayed in all areas. They call that "globally delayed."
On January 17th, all of her current therapists and her therapy service coordinator will meet with me and discuss the results from the evaluation the week prior. We will then write new goals for each therapy, and a time line in which we hope they will be achieved. Also, a teacher from the school system will be coming out to the house to discuss placing Taegan into the special needs preschool program in our district for August, 2007.
I think that's it as far as upcoming appointments are concerned... Hopefully the ENT appointment will be before February!!!
Taegan finally had her sleep study at the children's hospital (which shall remain nameless) here in Indianapolis on December 19th. It was one of the most terrible medical experiences I've been through with Taegan since her NICU days... Suffice it to say, I will be writing the CEO of the hospital a detailed letter explaining why I will not be returning to their hospital for future medical care for my daughter.
It isn't just this particular experience I will be referencing, but every appointment, every hospitalization, and every encounter we've ever had with this hospital has been an unpleasant experience. I know you're thinking, "How can any trip to the hospital be a 'pleasant' experience?" I'm referring to the way we were treated, the professionalism, or lack thereof, and overall competence/incompetence.
When we arrived, they acted as if they had no idea we were scheduled to be there. No surprise there really, since they canceled our previous appt. 40 minutes before it was supposed to start, saying they had 'overbooked' the sleep lab that night.
When I called to reschedule, they scheduled me on 2 different nights while on the phone, changing between the two dates several times before deciding on the date. What is that all about!? They were also not very nice about me having to reschedule it, when it was their mistake for overbooking.
Well, unfortunately, Taegan caught a bad cold the week of the rescheduled sleep study, and *I* had to cancel that appointment. I rescheduled at that time as well, and again was given 'attitude' for canceling.
The lady on the phone remarked, 'How many times have you canceled now?' I should've gotten a clue and just said "Never mind...we'll go somewhere else." But I wasn't aware of any other hospital that did sleep study testing on pediatric patients aside from the children's hospital.
So, they found us a room, and told me to dress Taegan in her pajamas and put her in the crib. As I was dressing her, I noticed the sheets on the crib were soiled! They had what appeared to be dried mucous on them!
Twenty minutes later when someone returned to the room, I requested clean sheets be put on the crib, and pointed out the soiled spot. The employee did not change the sheets, but folded them down and tucked them under the mattress. I think my eyes were the size of saucers...
She said it would be fine... I said "I don't want my daughter sleeping on dirty sheets. She still puts everything in her mouth!" The lady assured me that she wouldn't be able to get the sheets in her mouth because she wouldn't be able to move around in the bed. What!? How was that an appropriate answer?
The night progressively got worse from here...
Taegan was supposed to have a PH probe test(measures acid reflux) as well as an EEG (checks for seizure activity) during the sleep study testing. I faxed the order to the sleep lab 3 weeks prior to our appointment, and even called to verify that they received it. The night of the study, there was no PH probe placed nor was their an EEG performed.
I questioned the person running the sleep study (I have no idea if she was a nurse or a technician, as she wore no name tag and did not identify herself... in hindsight, I should've asked for her name as well as the other rude people I dealt with that night!) and the lady assured me that "The most comprehensive tests will be performed on your daughter during the sleep study."
Well, that's all fine and good, but, where is the PH PROBE?? She tried to tell me that the "nasal cannula" would be placed in her nose last (as she was hooking up all the other wires, this conversation was taking place.) I suppose she thought by throwing out some medical terms like 'nasal cannula,' it would reassure me that they've got it all under control and that they know what they're doing. Unfortunately for her, she didn't know that I work in the medical field and am very well aware of what a nasal cannula is and also what a PH probe is and how it is to be inserted into the nose.
I questioned her further, and she simply stopped talking to me! I showed her the prescription that I had in my possession stating Taegan was to have a PH probe as well as an EEG and explained that it had been faxed 3 weeks prior... she just said that they have all the information they need, and all the tests were going to be run. I then told her I wanted to speak to whomever was in charge. Again was ignored...
All the while, Taegan was being hooked up with electrodes and being wrapped up like a mummy. The only thing you could see on her face was her nose and eyes. No cheeks, no chin, no ears, no hair etc. They put 'angel wings' on her arms that prevented her from bending them at the elbow so that she couldn't pull the wires off. This made Taegan extremely upset. I did my best to calm her, stroking the bridge of her nose..as that was the only exposed skin on her face!
What followed were several hours of crying... and coughing, and more crying... She cried so much that she was becoming congested in her lungs from all the mucous draining, I'm sure. Taegan was so exhausted before the test even began, I thought for sure she'd sleep despite being wrapped up like a mummy. No... she just kept crying... wouldn't keep her pacifier in her mouth, or take any milk etc. I tried singing to her etc. Everything I could think of to comfort her (as I could not hold her... she was in a 'crib' which looked rather like a cage, and I couldn't fit my arm through the slats.) I tried ignoring her... figuring she's got to stop crying at some point! (This began at 9pm by the way.)
Eventually, they asked me to step out of the room, and wait outside. So I did. There was a chair sitting out there, so naturally I sat there. Twenty minutes or so passed, and after several unusual stares from various staff members, I was asked to leave the area. I was told I couldn't sit there (even though there was a chair there.. I guess for decoration, I don't know!?) because of patient confidentiality. Okay?! I simply did what I was told... to wait outside the room..
They shuttled me off down the hall to the 'parent lounge.' I said I did not wish to sit in there, I wanted to stay in the room with my daughter. (They even tell you that you can sleep in the room with your child, and there is a fold out chair bed in there for the parent to sleep on). They said they felt Taegan would do better if I wasn't in there. They told me I could sleep in the lounge. I declined, and said I wanted to be notified when she was asleep, and at that time I would go back into the room to sleep there. This was 10:50pm.
At 1:10am, one of the lab workers came into the lounge and seemed to be irritated. She motioned for me to come with her, and I asked what was wrong. She told me that Taegan would not stop crying, and they needed me to calm her down. I asked if she'd been crying this whole time, and she said "yeah, pretty much." Nice.
Before I even entered Taegan's room, I could hear her crying and saying "Mommy! Mommy!" as she cried. (She rarely does this... only when she has a belly ache or something is wrong do I ever hear her cry my name.) I went to her side and slid the railing down and she tried to reach for me, but couldn't because of the straps on her arms. I just leaned down close to her and held her hand and stroked the bridge of her nose and told her it was ok...
Every cell in my body was screaming at me to just take her out of that hospital right then and there... I should've done it when they were first hooking her up and realized there would be no PH probe or EEG, and no one would even talk to me about it... I don't think anyone was even "in charge" there! If I learned anything from this experience, it is to trust my instincts. Also, to be more assertive, and to not be so nice while being assertive.
I must have stood there by her bed for an hour or so.. there was no clock in the room... but she finally fell asleep while I stroked her nose bridge. She slept off/on, waking every 20-30 minutes to cry for a few minutes until I calmed her again, reassuring her I was right there. In my estimation, she probably slept 90 minutes to 2 hours during the whole study, and not continuously.. as she would wake every so often as I described above.
At some point I fell asleep (and actually had a nightmare while sleeping...and that rarely happens to me!)
"TIME TO WAKE UP! YOU'RE ALL DONE!!!" is what I heard at 5:30am while bright lights from above blinded me. I lurched up out of the chair bed clutching my heart... Taegan started crying and was trying to cover her eyes but couldn't. I replied "Well that's a nice way to be woken up..." and was ignored.
Then the lady (technician? who knows!) started unwrapping Taegan's head and started yanking off the electrodes... I say yanking because that is what she was doing! I couldn't believe how rough she was being. I even told her I would take them off and put my hand on hers as a hint to make her STOP!!!!!!!! She didn't stop, but allowed me to assist.
Then she says, "You're going to take her home and put her in the shower, right?" I knew what she was implying... she didn't want to have to wash all the goopy gel/glue out of Taegan's hair and off her face.
I said, 'I cannot take her outside with this in her hair, it is too cold, and it will get all over her coat and her hat and the car seat. Just give me the shampoo and a towel and I will do it." and she gave me a look like I was being a pain in the ass, and said, "No, I can get her washed up, it's not a problem." Really...
So then she starts scrubbing Taegan's head with a wash rag and soap, and Taegan's whole head is bouncing all around because she's scrubbing so hard. Taegan, who as many of you know, is very even tempered and good natured, grabbed this lady's hand and pinched it real hard. I didn't have the heart to tell her NO, because I didn't blame her one bit! That is the first and only time I've ever seen Taegan react that way to anyone, even play mates! Other kids have taken toys away from Taegan etc. and it doesn't phase her... she's an easy going kid. I didn't know my child had it in her... so in a weird way, that was good to see.
After the pinching incident, I took the wash rag and soap and told the lady I'd finish the other side of Taegan's head. And I did. And we left... not even a goodbye.
I was so exhausted and emotionally drained... Taegan cried all the way out to the car, and looked worse than I felt(red face and eyes all puffy). We cried together on the ride back home at 6:30am. and I worried that I might have scarred my daughter for life with that experience. I pray she doesn't remember it... My earliest memory is around the age of 3, so I can only hope she wont remember this terrible experience.
She's been more clingy to me since then, and also gets upset when I leave her at Grandma & Grandpa's (if she realizes I'm leaving or I've left). Could just be her age... I hope anyway!
I called her pediatrician for the test results this week and it turns out she does have sleep apnea. So, the next step is to get her into an ENT (ear, nose, throat) doctor. The pediatrician scheduled us for an appt. at the same hospital as the sleep study was done in, and I am going to cancel that appt. on Monday and find another ENT. Nothing against the Dr. they have chosen, it's the hospital.. and just yesterday I heard that several people have had terrible experiences at the ENT clinic in this hospital. I'm not even going to waste my time...
I'll be sure to update this site once she's been seen by the ENT. Hopefully we can get this apnea under control/fixed before too long, as it can be dangerous.
Thanks for everyone's thoughts and prayers.