I've never been what I call a "Vaccine Nazi". The mother who vowed to not get her kids vaccinated because of the dangers of them, and then preached it on everyone else. I've never had a reason to investigate vaccines further than my pediatrician's recommendation. Yes, I know my child's health is a good reason, but they've always been healthy children. MAYBE had a mild fever once from a vaccine. I always would think the risks are so small and I wouldn't rather my child have Polio, or Measles, or some of the other diseases.
Now that Hailey has had Guillain Barre, there are certain vaccines that she shouldn't get though. According to the CDC website, the vaccines that say "You shouldn't get this vaccine if...." and then in that list says "You have ever had a history of Guillain Barre Syndrome" that I have found are: The Flu Vaccine (probably the most well known), The Meningitis Vaccine, and the Tdap (which has a bunch of different names - I knew it as Dtap. This is a combination vaccine and I want to do more research to see which of the illnesses it covers is related to the GBS).
The reason I initiated this research now is because yesterday Hailey had a follow up appointment with her pediatrician for her GBS and they also did her 4 year old check up. I asked when I made the appointment if there were any shots at a 4 year old appointment, the receptionist told me no, so when the nurse told me, "It looks like she is due for her Prevnar vaccine today" I was thrown a little off guard. 1) I didn't prepare Hailey for a shot at this appointment and 2) definitly didn't think they would even consider doing any vaccine so soon after her hospitalization.
I trust her pediatrician. He diagnosed her GBS immediately. He called our house while we were at the hospital and spoke with my Mother In Law for updates. He called the hospital for updates. We called him a couple of times from the hospital for advice and second opinions. I questioned the Prevnar vaccine she was due for and the timing of giving it to her and he assured me that it's a dead virus so we didn't need to worry about it with the GBS. He also said her case of GBS seems to be a very freaky thing. Hers wasn't caused by a previous vaccine, but by a virus she had a few weeks before (or the cold she was almost 2 weeks into when she stated showing signs). It was a vaccine she had already gotten before. She had no side effects from before, so she shouldn't this time. So I gave the permission to give her the booster.
All evening Hailey complained that her arm was sore. I figure she tensed up, that always makes it hurt more. This morning and afternoon, if you touched her arm, she said "Ow!" and said her arm was still sore. Tonight at the store I noticed a splotchy looking mark at the injection site. My first thought was to call the pediatrician, however, after going to the CDC website, this seems to be a normal reaction for this vaccine so I gave her a dose of tylenol for the soreness. Tried getting her to put ice on it while watching TV but she wouldn't.
I kick myself for not sticking with my gut that its too soon for any vaccines. Her immune system is probably still healing from the GBS. Maybe it is a normal reaction, but right now I am super paranoid about anything making her sick again and this little side effect just has my nerves going even more than before.
If you have any information about vaccines and GBS I'd love to hear it! I was concentrating on getting Hailey healed, and now that she is, I am trying to educate myself further about everything.
Saturday, June 11, 2011
Friday, June 10, 2011
Chapter Closed
Yesterday was Hailey's last day of Physical Therapy. Her therapist tested her again during their session and said she did great and was "well within normal range" with everything she asked her to do. They did an obstacle course where Hailey would have to climb up, down, etc to get to the end. They did a rope ladder which her therapist said she would normally hold at the bottom so the ladder couldn't swing (making it easier to climb), but Hailey did it without her holding it still. They even walked in moon shoes which her therapist said was hard and Hailey did it (holding hands, but her therapist said she had no doubt if they did it a bit longer Hailey would have been able to do it on her own). She said Hailey is a little weaker in her left leg still, but it's a normal weakness and it's only a smidge. A dominant vs not dominant, normal weakness. She also reassured me that the chances of her coming down with GBS again are just as rare as her catching it the first time. Although that should put me at ease, with as rare as it is, Hailey got it. She said that we know our child and knew something just wasn't right the first time and because we caught it so early she really believes that's why Hailey made such a fast recovery. And of course, if we had any questions, notice something, whatever, we could always call her.
Total Rehab Center in Robinwood rocks my socks! If you ever need physical, occupational, or speech therapy (which I hope you never do!) and you live close to Hagerstown, MD you'll want to go there!
If you remember, Hailey finished Occupational Therapy a week or so ago too. We are now therapy free, almost weaned off the nerve blocker medication with no complaints so far of any pain, which essentially means, we are closing the door to this chapter in our lives. Of course that doesn't mean that we'll never think about it because truth be told, I think about it every.single.day. I read articles about other people who have had it and how they explain it and I always wonder "Is that how it felt to Hailey?" I am always wondering, and in fear of the answer, "Was Hailey in pain at all in the hospital?" "Was Hailey scared?" "Did she understand, even if I'm sure she was scared, what was going on?" "How much does she remember?" "How conscious was she really during her hospitalization?" And of course when I think of the interaction we had with her, asking her questions and her head nod answers, her being upset and trying to cry over the breathing tube, following directions when asked to move parts of her body, I know that she was really awake during all this, and how scared she really must have been. Reliving the first few days in my head. It all just breaks my heart!
Then, when I get upset thinking about all those things, I try and take a peek at her as she is running around and playing with her brothers. I think about how well she is doing now.
This experience has taught me something, or maybe I should say, reminded me. Family is the most important thing. My kids, really enjoying them, takes priority over everything. Work can wait, cleaning can wait, who cares if we are eating hotdogs instead of an elaborate dinner because I was too busy enjoying my kids to prepare a big dinner?! It has shown me how precious life is. Even the healthiest of kids can be fighting for their lives in an instant. Hailey was running around like a normal kid one day and within 3 days she's on a breathing tube and completely paralyzed. Never take those healthy and fun moments for granted thinking that is what will be there tomorrow. That is not guaranteed. The dirty laundry is guaranteed to be sitting there tomorrow...a healthy child to enjoy is not.
I plan to continue writing in this blog. It's been somewhat therapeutic to me and I have actually enjoyed it. So don't go far!
Total Rehab Center in Robinwood rocks my socks! If you ever need physical, occupational, or speech therapy (which I hope you never do!) and you live close to Hagerstown, MD you'll want to go there!
If you remember, Hailey finished Occupational Therapy a week or so ago too. We are now therapy free, almost weaned off the nerve blocker medication with no complaints so far of any pain, which essentially means, we are closing the door to this chapter in our lives. Of course that doesn't mean that we'll never think about it because truth be told, I think about it every.single.day. I read articles about other people who have had it and how they explain it and I always wonder "Is that how it felt to Hailey?" I am always wondering, and in fear of the answer, "Was Hailey in pain at all in the hospital?" "Was Hailey scared?" "Did she understand, even if I'm sure she was scared, what was going on?" "How much does she remember?" "How conscious was she really during her hospitalization?" And of course when I think of the interaction we had with her, asking her questions and her head nod answers, her being upset and trying to cry over the breathing tube, following directions when asked to move parts of her body, I know that she was really awake during all this, and how scared she really must have been. Reliving the first few days in my head. It all just breaks my heart!
Then, when I get upset thinking about all those things, I try and take a peek at her as she is running around and playing with her brothers. I think about how well she is doing now.
This experience has taught me something, or maybe I should say, reminded me. Family is the most important thing. My kids, really enjoying them, takes priority over everything. Work can wait, cleaning can wait, who cares if we are eating hotdogs instead of an elaborate dinner because I was too busy enjoying my kids to prepare a big dinner?! It has shown me how precious life is. Even the healthiest of kids can be fighting for their lives in an instant. Hailey was running around like a normal kid one day and within 3 days she's on a breathing tube and completely paralyzed. Never take those healthy and fun moments for granted thinking that is what will be there tomorrow. That is not guaranteed. The dirty laundry is guaranteed to be sitting there tomorrow...a healthy child to enjoy is not.
I plan to continue writing in this blog. It's been somewhat therapeutic to me and I have actually enjoyed it. So don't go far!
Monday, May 30, 2011
Ballet Recital
3 Months and 1 week after the day she was put on a ventilator, Hailey participated in her end of the year Ballet Recital which was held at the Maryland Theatre. This whole week has really been almost a period at the end of the journey sort of. On top of the recital, Hailey has her graduation program from her 3 year old preschool class tomorrow. The fact that she was able to rejoin both of these programs she loved in time for the end of the year is amazing and we're so thankful! I'll be sure to take lots of pictures of her "graduation", but for now, enjoy some ballet pictures!
Their show was called "Squeeky the Mouse". I told her before she joined her dance class "I'd tell you to break a leg, but with your luck you would!" (Getting GBS is luck of the draw really. Only 1 in 100,000 odds and she hit it)
Hailey and her friend. Hailey is on the left.
The whole class during the dress rehearsal.
Hailey with her "Break a Leg" Bouquet after the show.
Their show was called "Squeeky the Mouse". I told her before she joined her dance class "I'd tell you to break a leg, but with your luck you would!" (Getting GBS is luck of the draw really. Only 1 in 100,000 odds and she hit it)
Hailey and her friend. Hailey is on the left.
The whole class during the dress rehearsal.
Hailey with her "Break a Leg" Bouquet after the show.
Thursday, May 19, 2011
Amazing Progress
I haven't been good about writing updates. There just really hasn't been much news to report...until now!
Wednesday when I was sitting in the lobby of the therapy office, the receptionist called my name and told me Hailey's Occupational Therapist wanted to see me in the back. Hmmm...is that a good thing, or a bad thing?! I gathered all my ribbon and materials I was working with and went into the therapy room. Her therapist then informed me she was having a hard time finding something to do with Hailey that was hard for her to do. She said even the things Hailey didn't know how to do when they first would do it, by a couple of times of trying it, she would be able to execute it with ease. The therapist said it shouldn't be hard for her to find things to do with the patient and when it is, that usually means its time to discharge the patient!! So, she is going to see Hailey on Monday and Tuesday of next week where they will concentrate on holding a pencil the correct way, this is the only thing Hailey resorts to "fisting" normally. Sometimes she'll hold it the proper way, and transitioning from toddler fisting to holding it correctly is age appropriate, sooo...Tuesday will be Hailey's LAST DAY of Occupational Therapy! Hooray for Hailey making great progress!!
Hailey's Physical Therapist tested her today to see where Hailey's strength was and to see if she would still need to see her. My husband went to therapy with Hailey today. He told me that the therapist said Hailey is making great progress but she still sees a weakness in her left leg. She stumbles some with that leg so for now, she will still be seeing Hailey twice a week. She said she has her scheduled for another month, but it might only be a couple of weeks. We will see. Whatever Hailey needs we'll do!
Tomorrow Hailey has a follow up appointment with her pediatrician for a recheck on everything. I am sure he will be testing her reflexes as they were still very weak when we saw him last, which was only a few days out of the hospital. I am going to ask about her nerve blocker medication, how much longer he thinks she'll require it. Dave and I both feel like she probably doesn't need it anymore and she never says anything is bothering her, however, maybe that's because she is on the medication. We'll see what the doctor says. I got a letter from our insurance company, I'll bring it with to the drs, that says we have to fill that particular medication in 90 day supplies because its a long term labeled medication. If we do fill it again in a 30 day supply we'll be subjected to a higher copay. Of course the letter doesn't state what that amount would be.
Hailey has made amazing progress this past month since being discharged from the hospital! She has started back in preschool one day a week. She has her end of the year picnic for that next week. She also started back in her ballet classes and has a dress rehearsal and then her recital next weekend at the Maryland Theatre! She is so excited (so am I!)! It amazes me how she has fit right back into her normal life. We have been blessed by the pace of her recovery!
Two weekends ago, after vowing to do more things as a family, we took a day trip to Gettysburg, PA to visit "The Land of Little Horses". It's the most beautiful petting farm you will find! We all had a blast (even the older boys who aren't as in love with horses as Hailey is)! I'll end this post with a couple of pictures!
Sunday, May 1, 2011
Our week in review
I was going to post this picture at the end of the entry, but it keeps putting it at the top!! This picture makes my heart so happy!! Hailey got a bike for her birthday! Her therapist thought it was a great idea and would be great therapy for her. She has actually started peddling herself! This is from a walk we took this past week with one of our neighbor friends! Good times!
Hailey had a great week! We had therapy Mon-Wed this week. Physical therapy was supposed to be in the pool on Tuesday, but we received a phone call that it would be "on land" instead because a light bulb over the pool burst and there was some glass in the pool. Hailey was a little disappointed (as was I! I am interested in watching and seeing what they'll be doing with her).
They've been working a lot on her fine motor skills. Coloring with smaller pieces of crayons to promote use of her pincher grasp instead of fisting the crayon. They are harping on this, however, I'm not 100% sure, but I don't even think she was using her pincher grasp before all this happened to color and write. If she was, it was only sometimes so she was still transitioning to this milestone. It won't hurt though to have them encourage it. They also were working with clothes pins to strengthen her fingers and playing with putty for the same purpose. The Easter Bunny brought Hailey some playdoh in her basket. She must have realized this would serve the same purpose!
After therapy one day this week we visited one of her preschool teachers. Hailey had so much fun playing with her younger son! They didn't know she was walking yet and Hailey loved showing it off up and down their hallway! It was a good time!
Other milestones this week: Hailey started back in dance class! She did fabulous! I am able to watch on the television in the lobby what's going on in the studio and Hailey did wonderfully! There is only a couple of things like skipping where Hailey can do it, she's just slower than the rest of her friends. It's the same with her running. She's started trying to run again. It's more of a fast walk, marching looking thing. The great thing is, Hailey doesn't care/realize she is any different right now than the rest of her friends and she isn't letting it hold her back. Saturday we had pictures for dance. She initiated races in the studio and of course everytime she would lose, but just kept saying "Darn! You win again! Let's race again!" I am so happy that she isn't taking it hard.
Hailey has also requested to start back at school. There isn't many classes left (school lets out mid May) and after speaking with her teacher, we have obliged. She is only able to go one of the two days she would normally go as we have a therapy scheduled on the second day. She has her long therapy that afternoon though so I'm going to keep an eye to make sure the day isn't too much for her with everything. She can fatigue easily right now. Her therapists have said that Hailey is really good letting you know when she is tired and needs a rest though. It feels good to be back to "normal" somewhat.
To top off the week, I've got both the boys who have pink eye!! Ack! We just had it go through the house in January...every single one of us got it. Luckily I've got plenty of eye drops left from that showing and we've started treatment. I pray Hailey doesn't get it (It's one of the viruses she tested positive for in the hospital, although her eyes weren't pink...carrier maybe?)! I'm just so paranoid about her catching any kind of cold right now, as innocent as they may be. It's going to happen sooner or later, I know, and I also know she'll be fine, but it still has my nerves in a tizzy!
Much Love and Many Thanks to you all!
-Jen
Wednesday, April 20, 2011
Therapy and Fundraisers
Hailey's in the middle of her first week of therapy. So far she has only done occupational therapy. Next week starts 2 days a week of physical therapy as well (this week she only has it once while they rearranged their schedule to get Hailey back to back appointments on Tuesdays). I've been sitting in the waiting room while Hailey goes back with the therapists. I think they prefer it this way. The kids are more apt to participate. My mother in law bought me a book to read while there. I took it out the first day, but just can't get into it. I'm not a reader. I'll pull it out another time and try again...someday.
Therapy has been working with Hailey on her fingers. Fine motor type stuff. The first day they made a necklace. Hailey had to get the beads out of a bin filled with beans and then string it through her string. It's a really cute necklace actually. It says her name with letter beads. It has a pattern so I am sure the therapist told her something like "Find a green bead". Otherwise it would be a mix of everything and letters that don't even belong in her name. They also worked with clothespins. Opening and closing them. This was towards the end and the therapist said after a bit Hailey started saying her hands were tired/hurt. She explained that because of Hailey's syndrome she asked her to do just one more and that was the end of that. Pushing her too much can actually cause her to regress so it's a fine line. She said until she feels Hailey is lying to use it to get out of doing something, Hailey basically runs the show.
Yesterday they worked with stickers. Made a birthday card for Hailey (her 4th birthday was on Monday!) and Hailey got to decorate it with stickers. They also worked with lacing cards. Both of these the therapist told me Hailey had a little trouble with. The stickers she had a hard time peeling off the paper, although after a few, she did get better. Hailey brought out a binder that we bring back and forth now that carries her "homework". Last nights homework was to put 2 sticker sheets on a piece of paper and also had two lace cards for her to do. Dave did these with her while I was out which was nice. It gives him the chance to watch what she can do and interact with her. He said she did great with it.
We have more occupational therapy today and then an early morning physical therapy appointment tomorrow. Then we're done with our first week...Hooray! The progress Hailey has made has been amazing. When I really stop and think about it....it was only 1 month ago she started falling and walking funny. About 3 weeks ago she came off of a breathing machine. And today she is walking on her own (wobbly and small steps).
The first Insurance Explanation of Benefits came in the other day along with our first hospital bill from the hospital we went to first before they flew her to the bigger University Medical Center. For those of you who were wondering, without insurance, a helicopter ride from one hospital to another will cost you about $30,000. My jaw dropped at this figure. I knew expensive, but that's the price of a new car, for a 20 minute helicopter ride. We didn't even get a lousy Tshirt...however, there were great paramedic nurses in the back taking care of my daughter to make sure she arrived at the next hospital alive. That's worth it.
Which brings me to my next topic. The amount of support we have been shown has been truly AMAZING! My facebook boutique friends did an auction of all sorts of handmade products to raise money to support us while we were in the hospital. It's not cheap to eat in a hospital and of course neither of us wanted to leave Hailey's side to get something outside of the hospital. It also helped with gas when either Dave or I went home for a day to gather more things and visit with our older sons who we missed while we stayed with Hailey. It helped out sooo much! This auction was arranged by Jessica, owner and designer of One Little Bow. You can click that link to go straight to her facebook page. That auction has since ended however we've got more amazing people in our lives!
Desiree Rose is hosting a fundraiser with Pampered Chef. Proceeds from anything you purchase is being sent to us to help out with the medical bills and rehab bills that are starting to come in.
Here is how you can help!
1- visit www.pamperedchef.biz/drose
2- Click shop online Enter Hailey Clark as the Host
3- Shop generously to benefit Hailey!!
ALL PROCEEDS go to the Clark's! If you are interested in hosting your own show to help the Clark's and earn Free product a portion of those proceeds will go back to the Clark's too!!
Thanks so much Desiree!
Another great friend Kathy Bandy has a Scentsy benefit going on. Scentsy is a plug in smell good system for your house. They also have goodies you can use in your car or anywhere else you can think of! I own a bunch of this and LOVE it!
You can go to: https://kathybandyscents.scentsy.us/Home and on the left side click on the "Benefit for Hailey" party. She is donating her commission to us.
All this support has been so amazing to us. We didn't realize how many people we had in our lives that support us to the extent everyone has! It's been eye opening and has made me become a better person as well. I vow to pay forward all this support everytime I can!
I will update again soon! Thanks for everyone's prayers!! It works! I'm a believer now!
Therapy has been working with Hailey on her fingers. Fine motor type stuff. The first day they made a necklace. Hailey had to get the beads out of a bin filled with beans and then string it through her string. It's a really cute necklace actually. It says her name with letter beads. It has a pattern so I am sure the therapist told her something like "Find a green bead". Otherwise it would be a mix of everything and letters that don't even belong in her name. They also worked with clothespins. Opening and closing them. This was towards the end and the therapist said after a bit Hailey started saying her hands were tired/hurt. She explained that because of Hailey's syndrome she asked her to do just one more and that was the end of that. Pushing her too much can actually cause her to regress so it's a fine line. She said until she feels Hailey is lying to use it to get out of doing something, Hailey basically runs the show.
Yesterday they worked with stickers. Made a birthday card for Hailey (her 4th birthday was on Monday!) and Hailey got to decorate it with stickers. They also worked with lacing cards. Both of these the therapist told me Hailey had a little trouble with. The stickers she had a hard time peeling off the paper, although after a few, she did get better. Hailey brought out a binder that we bring back and forth now that carries her "homework". Last nights homework was to put 2 sticker sheets on a piece of paper and also had two lace cards for her to do. Dave did these with her while I was out which was nice. It gives him the chance to watch what she can do and interact with her. He said she did great with it.
We have more occupational therapy today and then an early morning physical therapy appointment tomorrow. Then we're done with our first week...Hooray! The progress Hailey has made has been amazing. When I really stop and think about it....it was only 1 month ago she started falling and walking funny. About 3 weeks ago she came off of a breathing machine. And today she is walking on her own (wobbly and small steps).
The first Insurance Explanation of Benefits came in the other day along with our first hospital bill from the hospital we went to first before they flew her to the bigger University Medical Center. For those of you who were wondering, without insurance, a helicopter ride from one hospital to another will cost you about $30,000. My jaw dropped at this figure. I knew expensive, but that's the price of a new car, for a 20 minute helicopter ride. We didn't even get a lousy Tshirt...however, there were great paramedic nurses in the back taking care of my daughter to make sure she arrived at the next hospital alive. That's worth it.
Which brings me to my next topic. The amount of support we have been shown has been truly AMAZING! My facebook boutique friends did an auction of all sorts of handmade products to raise money to support us while we were in the hospital. It's not cheap to eat in a hospital and of course neither of us wanted to leave Hailey's side to get something outside of the hospital. It also helped with gas when either Dave or I went home for a day to gather more things and visit with our older sons who we missed while we stayed with Hailey. It helped out sooo much! This auction was arranged by Jessica, owner and designer of One Little Bow. You can click that link to go straight to her facebook page. That auction has since ended however we've got more amazing people in our lives!
Desiree Rose is hosting a fundraiser with Pampered Chef. Proceeds from anything you purchase is being sent to us to help out with the medical bills and rehab bills that are starting to come in.
Here is how you can help!
1- visit www.pamperedchef.biz/drose
2- Click shop online Enter Hailey Clark as the Host
3- Shop generously to benefit Hailey!!
ALL PROCEEDS go to the Clark's! If you are interested in hosting your own show to help the Clark's and earn Free product a portion of those proceeds will go back to the Clark's too!!
Thanks so much Desiree!
Another great friend Kathy Bandy has a Scentsy benefit going on. Scentsy is a plug in smell good system for your house. They also have goodies you can use in your car or anywhere else you can think of! I own a bunch of this and LOVE it!
You can go to: https://kathybandyscents.scentsy.us/Home and on the left side click on the "Benefit for Hailey" party. She is donating her commission to us.
All this support has been so amazing to us. We didn't realize how many people we had in our lives that support us to the extent everyone has! It's been eye opening and has made me become a better person as well. I vow to pay forward all this support everytime I can!
I will update again soon! Thanks for everyone's prayers!! It works! I'm a believer now!
Saturday, April 16, 2011
A post from Jen!
OMGosh! I am actually sitting at a computer viewing this blog instead of on my cell phone and it looks sooo good. I can't thank my sister enough for starting this blog! A doctor in the beginning of our journey recommended doing a blog as a way to keep friends and family up to date with everything that was going on and it was the best idea! For the first couple of days, we spent every free minute texting, emailing, updating facebook, and making phone calls. Every conversation and post was a repetitive, emotional mess. I owe my sister Heather big time for making timely and accurate updates. She spent a lot of time doing this and it took time away from her own family time. Heather, THANK YOU! I feel like I could spend every minute of the next year thanking everyone and it wouldn't be enough. My own customers who never once bothered me about pending orders that are now almost 2 months old. The many emails and comments with words of encouragement, thoughts, prayers. You don't even begin to know how especially during some of the worst times at the hospital, sometimes just the smallest little comment would help. My husband's fire department who brought us dinner almost every single night, their support and gifts. GREAT neighbors who showed my Mother in Law support by bringing meals or taking our older boys out for the afternoon, or just stopping by to see how SHE was doing. My MOTHER IN LAW especially! I don't know what we would have done without her! She basically missed worked for the last month to take care of our boys and pets. Became a "mother" again for the last month...dealing with school work and behavior. I know it wasn't easy. She also has stayed with us this last week while we got accustomed to our new normal. My own family who came and visited with us at the hospital many days. A change of face to look at, a shoulder to cry on (many times), a conversation other than "medical" stuff, somebody who could be strong for us and allowed us time to not be, was so nice! There are so many of you who I haven't mentioned and I want you to know that my husband and I sincerely appreciate every thought, prayer, and donation. We are truly blessed with the people in our lives and I didn't even realize just how much! Now for what you probably came here for...an update on Hailey! This past week we had evaluations with the rehabilitation place Hailey will be going to. She continued to amaze everyone there with her quick progress! Occupational Therapy determined she would like to see Hailey 3 times a week. This is for Hailey's fine motor skills. The neurologist who oversaw Hailey's care in the hospital said he first thought Hailey's feet (walking, etc) would be the last thing to come fully back, but he now feels its going to be her hands. The therapist in fact said "The hospital sent a report of what Hailey could and couldn't do and I shouldn't have even spent time reading it because what they said she couldn't do then, she can already do 2 days later. I should have just asked you guys for a report this morning!" We also saw the physical therapist. She has determined she would like to see Hailey twice a week, one day of which will be spent in their pool. The water temperature is kept in the low 90s which is a therapeutic temperature she said. The other day will be spent either outdoors or in their "play room" working on things. It's always very interesting to watch them interact with Hailey. They would have her do things and Dave and I weren't even aware she could do them yet! For instance, she had Hailey walk down the stairs. Hailey held onto the railing with one hand and the therapists hand with the other. She had a little tykes slide Hailey wanted to go on and the therapist helped Hailey and informed us Hailey had pulled to a stand all on her own. It's like watching Hailey go through the milestones she accomplished as a baby all over again, only at a much faster pace. They are as exciting the second time around as the were the first! We now have a regular therapy schedule which starts next week. 4 days a week will be spent going to therapy sessions. We also had an appointment with Hailey's pediatrician. I can't even begin to tell you how happy I am with the practice we belong to. They quickly diagnosed Hailey with the Guillian Barre from the beginning. If she had been misdiagnosed, this blog could be about something I don't even want to think about! For something this rare, I am so impressed with how fast they picked up on it! The pediatrician is going to be seeing Hailey again in another month to keep up with her progress and refill her prescription for her nerve medication. Dave and I? We're hanging in there. I think about the events of our last month constantly. Flashbacks of the most horrible parts. I am hoping time will heal this wound and it will be a distant bad memory. Dave goes back to work this week full time. He was approved for Family Medical Leave Act so if he needs a day off to take Hailey to therapy or drs appointments if I can't, he can do so freely. He also plans to start back on his duty nights at the firehouse very soon as well. Things are getting back to "normal". A new normal. A different normal. A much happier normal than the last month. To close, I want to wish the BRAVEST, STRONGEST, little girl I know, Hailey, a Very Happy 4th Birthday! We're having a VERY small party for her tomorrow at our house. Her real birthday is Monday and we are over the moon that she is spending her birthday at home instead of in the hospital! Her immune system is dramatically weakened by the plasmapheresis treatement she endured so we have to watch how exposed she is right now, however, we had a big party reserved for her at Pump It Up...a big moon bounce filled place. We had plans on inviting all of her friends from school and the neighborhood and we plan on throwing this big shindig at some point this summer. Instead of a "Birthday" party it will be a "Hailey can jump and run again!" party! We can't wait to see everyone there! I plan on writing updates often to keep everyone updated! Keep checking back! And let me say once again.... THANK YOU FOR EVERYTHING!!!
Tuesday, April 12, 2011
April 12, 2011
Hailey and her family spent their first night back at home last night! After passing her swallow study at the hospital on Monday and being allowed a "regular diet" again they discharged Hailey!
She spent the evening relaxing with her brothers watching TV! First time they've been able to do that in a month!
She spent the evening relaxing with her brothers watching TV! First time they've been able to do that in a month!
After waking up this morning in their own home, in their own beds, and relaxing to their own coffee, Jen and Dave got busy scheduling Hailey's therapy.
Today Hailey had Occupational Therapy. The Therapist said she shouldn't have even read the notes the hospital sent because everything they said she couldn't do then, she's already doing now! Hailey is impressing everyone she comes across!
She'll also have Physical therapy. They are looking at therapy 3-4 times a week at this point here. Hailey is already scooting herself across the floor on her butt and crawling on her hands and knees to get places. She still needs help going from floor to couch or vice versa and obviously can't walk or anything yet, but she's working those muscles so it will be no time at all till they start getting their strength back.
Can't wait to see the progess she makes as she makes it!
Monday, April 11, 2011
Friday, April 8, 2011
April 8, 2011 10:48pm
Hailey was moved to the regular pediatric wing last night!! In this wing of the hospital she has no monitors on her and nothing keeping her in the bed :)
Jen took Hailey to the play room today to get a few toys to bring back to the bed for her to play with. They brought back a farm toy and pretended to talk to each other with Jen being the cow and Hailey being the dog.
Therapy came by and worked some more with Hailey today. Therapy is custom making Hailey a pair of boots to stretch her achilles tendon and strengthen it.
More therapy tomorrow.
Until then I'll leave you with a picture of Miss Hailey getting ready to watch Dora :)
Jen took Hailey to the play room today to get a few toys to bring back to the bed for her to play with. They brought back a farm toy and pretended to talk to each other with Jen being the cow and Hailey being the dog.
Therapy came by and worked some more with Hailey today. Therapy is custom making Hailey a pair of boots to stretch her achilles tendon and strengthen it.
More therapy tomorrow.
Until then I'll leave you with a picture of Miss Hailey getting ready to watch Dora :)
Ahh I just wanna squeeze her!!
Thursday, April 7, 2011
April 7, 2011 12:37pm
Look at this beautiful girl!!!!
No more feeding tube!! IV's are out!! She's even in her own PJ's!!
And look at that smile!
"Family meeting" today at 1:30pm (Eastern time) to discuss the next steps. Let's hope Jen and Dave can take their little girl HOME!
No more feeding tube!! IV's are out!! She's even in her own PJ's!!
And look at that smile!
"Family meeting" today at 1:30pm (Eastern time) to discuss the next steps. Let's hope Jen and Dave can take their little girl HOME!
Wednesday, April 6, 2011
April 6, 2011 11:09pm
Hailey is working really hard at therapy each day. She's getting stronger and stronger. She's being allowed to have a "soft food" diet now instead of a "pureed diet" and is allowed a thickened juice box which is like the consistancy of maple syrup. She still has the feeding tube until she can take in more liquids. She's receiving pediasure to supplement her diet at night.
Jen and Dave have a meeting with her doctors tomorrow to discuss Hailey's rehab placement. Jen and Dave are really pushing for outpatient rehab for Hailey after being discharged from the hospital. The doctors are really pushing for inpatient rehab. Having her do inpatient rehab is not an ideal situation for the family, so pray they can sway the doctors to see things their way tomorrow!
Hailey's immune system is pretty much gone and they've given her an infant roomate who we've overheard is there with the flu! How the hospital can put someone with a compromised immune system with someone who is sick with the flu is insane! Hopefully they can get Hailey either a private room or at least change her room mate to someone who isn't going to compromise Hailey's immune system more than it already is!
Lots of mail came to Hailey's room today and made her and her mom smile! Love all the love and support everyone is sending them! Such cute cards and gifts! Thank you SO much to everyone. I told Jen pretty soon the mailman is going to have to carry a bucket with him to deliver their mail :)
Jen and Dave have a meeting with her doctors tomorrow to discuss Hailey's rehab placement. Jen and Dave are really pushing for outpatient rehab for Hailey after being discharged from the hospital. The doctors are really pushing for inpatient rehab. Having her do inpatient rehab is not an ideal situation for the family, so pray they can sway the doctors to see things their way tomorrow!
Hailey's immune system is pretty much gone and they've given her an infant roomate who we've overheard is there with the flu! How the hospital can put someone with a compromised immune system with someone who is sick with the flu is insane! Hopefully they can get Hailey either a private room or at least change her room mate to someone who isn't going to compromise Hailey's immune system more than it already is!
Lots of mail came to Hailey's room today and made her and her mom smile! Love all the love and support everyone is sending them! Such cute cards and gifts! Thank you SO much to everyone. I told Jen pretty soon the mailman is going to have to carry a bucket with him to deliver their mail :)
Tuesday, April 5, 2011
April 5, 2011 6:15pm
Therapy came by today and decided to bust Hailey out of her hospital room for a little trip outside the PICU to the place they call the "forest".
She looks SO good without those tubes and wires!
Her immune system is still pretty much gone, so she had to wear a mask, but even with the mask you can see her smile :)
She looks SO good without those tubes and wires!
Her immune system is still pretty much gone, so she had to wear a mask, but even with the mask you can see her smile :)
April 5, 2011 9:38am
Last night was Hailey's first night in intermediate care instead if the ICU! Hailey was also allowed dinner last night! She ordered beef and mashed potatos and gravy and peas. She's on pureed foods, so it was surprising that although gross looking, the food looked so "real".
Jen stayed with Hailey last night and had said last night:
Monday, April 4, 2011
April 4, 2011 5:00pm
Sorry that the blog posts have lacked! Doesn't seem like there is a lot to update on lately. I think it's a good thing though!
Hailey had her swallow study done today! She is now allowed to have soft/pureed foods (ie: applesauce, pudding, yogurt, etc) she is still not allowed liquids as she coughed on small sips of water. This is due to the Guillain Barre and will go away as she gets stronger.
Because of this she will keep her feeding tube for a little bit longer until she can tolerate liquids. But they'll allow her soft foods!!!
Hailey's arterial line is now out and she's down to one IV now.
She's already asking if she can walk now and is ready to go home.
Hopefully not much longer Hailey!
Hailey had her swallow study done today! She is now allowed to have soft/pureed foods (ie: applesauce, pudding, yogurt, etc) she is still not allowed liquids as she coughed on small sips of water. This is due to the Guillain Barre and will go away as she gets stronger.
Because of this she will keep her feeding tube for a little bit longer until she can tolerate liquids. But they'll allow her soft foods!!!
Hailey's arterial line is now out and she's down to one IV now.
She's already asking if she can walk now and is ready to go home.
Hopefully not much longer Hailey!
Sunday, April 3, 2011
April 3, 2011 7:46pm
Hailey has had a whiney clingy "grumpy old man" kinda day. Completely understandable though! Poor girl has been through the ringer!
She's doing good though! Keeping her vitals stable, talking, and even moving all her limbs! She just needs to gain some strength back to those movements! They keep putting her in the Physical therapy chair they brought for her (the carseat one). It really helps her work her back muscles, and stomach and everything so they want her to spend some time in it each day. Hailey hates the process of getting in it, but once she's in it she doesn't want to get out!
She's watching lots of movies and spending lots of cuddle time with mommy.
They've removed her NG line but have kept her feeding line in until she does a barium swallow test tomorrow. They are also going to have a speech therapist come tomorrow to evaluate her as speech problems are common with this syndrome.
They will remove the central line tomorrow also and hopefully the Arterial line too. They want to make sure they don't have to draw blood anymore before they get that removed.
Pretty soon she'll have no tubes at all hopefully!!
Still no talk on discharge or on where or how she'll do Physical therapy after she gets out of the ICU. But things are moving along!
SO proud of you Hailey!
She's doing good though! Keeping her vitals stable, talking, and even moving all her limbs! She just needs to gain some strength back to those movements! They keep putting her in the Physical therapy chair they brought for her (the carseat one). It really helps her work her back muscles, and stomach and everything so they want her to spend some time in it each day. Hailey hates the process of getting in it, but once she's in it she doesn't want to get out!
She's watching lots of movies and spending lots of cuddle time with mommy.
They've removed her NG line but have kept her feeding line in until she does a barium swallow test tomorrow. They are also going to have a speech therapist come tomorrow to evaluate her as speech problems are common with this syndrome.
They will remove the central line tomorrow also and hopefully the Arterial line too. They want to make sure they don't have to draw blood anymore before they get that removed.
Pretty soon she'll have no tubes at all hopefully!!
Still no talk on discharge or on where or how she'll do Physical therapy after she gets out of the ICU. But things are moving along!
SO proud of you Hailey!
April 3, 2011 - PICU Nurses
The PICU nurses at The University Of Maryland Medical Center have been awesome with Hailey (and Jen and Dave!) while they've been in the hospital. The nurses really take care of and talk TO Hailey and not at her, and always explain exactly what they are doing to her and try to calm her. They've also made Hailey a few things while she's been there. A couple of those items are...
The "Hailey" name at the head of her bed. This was made by her nurse Alisha one night.
The "Hailey" name at the head of her bed. This was made by her nurse Alisha one night.
Also her nurse last night Caitlyn left her a note and a little my little pony after her "big day" yesterday!
Great nurses really do make all the difference ;)
April 3, 2011 9:40am
HAILEY WAS EXTUBATED LAST NIGHT!!!!!
I've been waiting till I was given the "ok" to say it and I was finally given the OK just now!!!
They removed Hailey's breathing tube last night! She was immediately given a nebulizer treatment incase of any swelling. Her first "word" when they did so was "mommy". Then she asked if she could have a banana and then asked if she was going to school tomorrow. <3
She did GREAT all night without the breathing tube!!! Her vitals have been great and her blood work has come back with no problems either!
She won't be allowed to eat or drink till they do a swallow study though.
One more step in the right direction!!!
I've been waiting till I was given the "ok" to say it and I was finally given the OK just now!!!
They removed Hailey's breathing tube last night! She was immediately given a nebulizer treatment incase of any swelling. Her first "word" when they did so was "mommy". Then she asked if she could have a banana and then asked if she was going to school tomorrow. <3
She did GREAT all night without the breathing tube!!! Her vitals have been great and her blood work has come back with no problems either!
She won't be allowed to eat or drink till they do a swallow study though.
One more step in the right direction!!!
Saturday, April 2, 2011
April 2, 2011 7:22pm
Today has been a slow, boring, long day at the hospital. There hasn't been much to update today as things haven't really changed.
Hailey is getting stronger by the hour though and has started flapping her legs like a butterfly.
They have spoken about extubation (taking the breathing tube out) and have been testing her to be able to do so. There is still one criteria she hasn't met yet and we are waiting on that.
It's frustrating for Jen and Dave because Hailey keeps trying to talk to them and she can't because of the breathing tube and they can't figure out what she wants sometimes.
Hopefully soon so keep those prayers coming!
Hailey is getting stronger by the hour though and has started flapping her legs like a butterfly.
They have spoken about extubation (taking the breathing tube out) and have been testing her to be able to do so. There is still one criteria she hasn't met yet and we are waiting on that.
It's frustrating for Jen and Dave because Hailey keeps trying to talk to them and she can't because of the breathing tube and they can't figure out what she wants sometimes.
Hopefully soon so keep those prayers coming!
Friday, April 1, 2011
April 1, 2011 9:42pm
I just was told by Jen that we're about 20 min or so into a CPAP test!! We don't know what that means, or if they'll take the breathing tube out if she does well, but cross those fingers!!!!
Come on Hailey show them what you can do!!
**Update**
Hailey ROCKED her CPAP test! Woohoo!!!
Come on Hailey show them what you can do!!
**Update**
Hailey ROCKED her CPAP test! Woohoo!!!
April 1, 2011 9:40pm
I went and saw Hailey tonight. The little bugger kept squeezing her eyes shut and wouldn't open them! Jen and Dave were saying she's been doing that lately. She thinks if she closes her eyes and pretends to sleep no one will bug her and they'll leave her alone! She kept peeking at me real quick then closing her eyes again. I threatened to tickle her and give her a million kisses unless she opened her eyes for me and she gave me a smile.
They put her in her little carseat type chair and she was watching Tangled. She looks so much better than she has been looking! They are weaning her off the Fentinal (sedation) and it is making her stay awake more, which is nice.
She is shaking her head no so strongly that she disconnected her vent tube off the connector at one point! If we could just get this vent taken out she'd look almost "normal" if you know what I mean!
They put her in her little carseat type chair and she was watching Tangled. She looks so much better than she has been looking! They are weaning her off the Fentinal (sedation) and it is making her stay awake more, which is nice.
She is shaking her head no so strongly that she disconnected her vent tube off the connector at one point! If we could just get this vent taken out she'd look almost "normal" if you know what I mean!
April 1, 2011 8:40am
Hailey is receiving a blood transfusion this morning. Her counts were low. The nurse told Jen she doesn't think it's a result of the plasmapheresis treatments but Jen said she remembers reading it's a risk of them.
They say she can still get the plasmapheresis treatment today, but they are going to give her half a unit of blood.
They also moved an IV from one of her feet to her wrist.
They say she can still get the plasmapheresis treatment today, but they are going to give her half a unit of blood.
They also moved an IV from one of her feet to her wrist.
Thursday, March 31, 2011
March 31, 2011 9:37pm
They lowered haileys vent to 11. Respiratory said he'll lower it to 10 by the morning if she does well. Then they stick at 10 and then make the time greater where the machine gives her a breath.
He said the mode she is on now is basically cpap
March 31, 2011 6:36pm
Hailey did a nif test tonight and ROCKED it! The needle was between 40 and 60 the three times she inhaled. Then she let her rest a minute and did it again and she hardly looked like she was breathing and did 20. We think she wasn't sure she was supposed to do it again
Hopefully they ignore that last reading Hailey! You ROCK girl!
Wednesday, March 30, 2011
March 30, 2011 10:07pm
Jen didn't respond to my texts asking how the rest of Hailey's day/night went, so I'm just gonna post more pics :P
Hailey's Plasmapheresis machine! Looks like something you'd see next to Frankenstein!
All those tubes and wires carry her blood from her body, clean it out, and then put it back in her body.
Some balloons and just a few of the MANY stuffed animals Hailey has gotten.
The thing that made me the "best Aunt ever"
Can't wait to hear her doing this again...
Hailey Singing "Beat It"
:)
Hailey's Plasmapheresis machine! Looks like something you'd see next to Frankenstein!
All those tubes and wires carry her blood from her body, clean it out, and then put it back in her body.
Some balloons and just a few of the MANY stuffed animals Hailey has gotten.
The thing that made me the "best Aunt ever"
Can't wait to hear her doing this again...
Hailey Singing "Beat It"
:)
March 30, 2011 2:22pm
Hailey is receiving her 4th Plasmapheresis treatment right now. She has one more treatment left before the doctors "re-evaluate, and see where she's at."
She's gotten so many cards and get well notes! The back wall of her bed is covered! We're gonna have to start hanging them from the ceiling!
She's gotten so many cards and get well notes! The back wall of her bed is covered! We're gonna have to start hanging them from the ceiling!
Lucky girl ;)
Tuesday, March 29, 2011
March 29, 2011 9:56pm
Hailey had a pretty good day today! Her PT and OT therapists came to see her today and worked with Hailey's arms and legs. Lots for me to update today though!
Hailey wiggles her fingers really well! She shrugs her shoulders, and not only wiggles her toes but moves her whole foot while doing so! I even saw her knee jump a time or two when she was wiggling those feet! She gives a small smile and has a nice strong cough. They are suctioning her a lot because of her cough and getting a good amount up while doing so! She's moving her head and is wide awake and answering with a strong nod or shake of the head.
Don't get me wrong, there is still a LONG way to go. But these are steps in the right direction! She's making improvements!!
She has her days and nights mixed up and they are trying to straighten that out by keeping her up for most of the day today. Keeping the room nice and bright and interacting with her to help her sleep good tonight.
One of Hailey's preschool teachers came by to see her tonight. When she showed up Hailey's eyes opened SO wide and her whole face lit up! Hailey knew exactly who she was and was so happy to see her! She brought Hailey a cute "Hershey kiss" that the kids at school made for her. It was so nice and Hailey loved the visit.
Hailey's respiratory rate is all wacky tonight. Her O2 sats and vitals are nice and stable, but her breathing is weird. She's taking these short shallow breaths and the machine is counting her rate as anywhere between 70 and 108 breaths a minute. That is setting off the alarms on the ventilator. They took some blood to check her blood gas levels and for right now are keeping an eye on it. I guess we'll see what her vent settings are like in the morning. They didn't seem to concerned about it since her vitals and everything look ok.
Tomorrow is another plasmapheresis treatment. Looking forward to seeing some more movement from Hailey and more progress! Hopefully we can get off the ventilator at some point this week and maybe even get some talk about rehabilitation placement. Praying this respiratory rate is just a fluke and nothing to be concerned about.
Hailey wiggles her fingers really well! She shrugs her shoulders, and not only wiggles her toes but moves her whole foot while doing so! I even saw her knee jump a time or two when she was wiggling those feet! She gives a small smile and has a nice strong cough. They are suctioning her a lot because of her cough and getting a good amount up while doing so! She's moving her head and is wide awake and answering with a strong nod or shake of the head.
Don't get me wrong, there is still a LONG way to go. But these are steps in the right direction! She's making improvements!!
She has her days and nights mixed up and they are trying to straighten that out by keeping her up for most of the day today. Keeping the room nice and bright and interacting with her to help her sleep good tonight.
One of Hailey's preschool teachers came by to see her tonight. When she showed up Hailey's eyes opened SO wide and her whole face lit up! Hailey knew exactly who she was and was so happy to see her! She brought Hailey a cute "Hershey kiss" that the kids at school made for her. It was so nice and Hailey loved the visit.
Hailey's respiratory rate is all wacky tonight. Her O2 sats and vitals are nice and stable, but her breathing is weird. She's taking these short shallow breaths and the machine is counting her rate as anywhere between 70 and 108 breaths a minute. That is setting off the alarms on the ventilator. They took some blood to check her blood gas levels and for right now are keeping an eye on it. I guess we'll see what her vent settings are like in the morning. They didn't seem to concerned about it since her vitals and everything look ok.
Tomorrow is another plasmapheresis treatment. Looking forward to seeing some more movement from Hailey and more progress! Hopefully we can get off the ventilator at some point this week and maybe even get some talk about rehabilitation placement. Praying this respiratory rate is just a fluke and nothing to be concerned about.
March 29, 2011 10:13am
Hailey had a good night after the late scheduled plasma. She watched Dora most of the evening. She's still moving her fingers, and this morning wiggled a couple toes on her left foot! This was her weakest extremity so we're excited!
They dropped her O2 to 30% and that number that was at 17 yesterday this morning is at 15.
The respiratory therapist yesterday said that goes to 5 for extubation but the Dr last night said it didn't have to. Another example if different stories from different people :/
No plasmapheresis today.
They dropped her O2 to 30% and that number that was at 17 yesterday this morning is at 15.
The respiratory therapist yesterday said that goes to 5 for extubation but the Dr last night said it didn't have to. Another example if different stories from different people :/
No plasmapheresis today.
Monday, March 28, 2011
March 28, 2011 10:55pm
Hailey received another plasmapheresis treatment today. No changes otherwise. Hoping to see some improvement after 3 treatments now. *fingers crossed*
March 28, 2011 11:01am
They have turned Hailey's vent settings down again. They have said her volumes arent high enough to take her off the vent and even if they were they need to wean her slowly so her lungs don't collapse. She's been on the ventilator a week and a half now and Jen and Dave just really want to hear her voice again.
The nurse practitioner has made a case for NOT doing the PICC line by saying the ones Hailey has now have been good and she thinks if they do need to do another IV they could get another vein so it isn't a neccessity right now. Of course that could change, but they think they could do without it for now.
Hailey also moved 4 fingers on her hand this morning! When asked to raise her arm she wasn't able to, but she did wiggle her fingers.
Another plasmapherisis treatment today at some point.
Please pray for some progress in the breathing area so we can get Hailey off this ventilator!
The nurse practitioner has made a case for NOT doing the PICC line by saying the ones Hailey has now have been good and she thinks if they do need to do another IV they could get another vein so it isn't a neccessity right now. Of course that could change, but they think they could do without it for now.
Hailey also moved 4 fingers on her hand this morning! When asked to raise her arm she wasn't able to, but she did wiggle her fingers.
Another plasmapherisis treatment today at some point.
Please pray for some progress in the breathing area so we can get Hailey off this ventilator!
Sunday, March 27, 2011
March 27, 2011 9:09pm
So today has been a roller coaster of up and down emotions. First the PICC line, Hailey's trying to talk, but can't because of the breathing tube and that is very tough and heartbreaking. She's more alert and aware of things going on and Jenn was saying that Hailey is getting mad during her breathing treatments now and her blood pressure is going up and her face is turning red. Besides smiling today, Hailey also wiggled her middle finger! They called the nurse in to be a "witness" also!
Keep fighting Hailey! Slow and steady wins the race!
Keep fighting Hailey! Slow and steady wins the race!
March 27, 2011 5:53pm
When asked to smile the corners of Hailey's mouth now turn up just the smallest bit.
Baby steps...small victories.
Baby steps...small victories.
March 27, 2011 9:54am
As much as I hate coming here and saying "Hailey is the same and there's been no change." in the other sense I want to be thankful that she's remained stable and hasn't regressed.
Last night was another uneventful, stable night. No real changes. They're performing another nif test this morning (how strong her inhales are) and she'll continue with breathing treatments.
I'm ready for some positive changes! Come on Hailey!
Last night was another uneventful, stable night. No real changes. They're performing another nif test this morning (how strong her inhales are) and she'll continue with breathing treatments.
I'm ready for some positive changes! Come on Hailey!
Saturday, March 26, 2011
March 26, 2011 10:36pm
Today was a stable, uneventful day! We'll take it! As I said in the previous post Hailey's ventilator has been changed. It's now a bi-level ventilator which allows her to spontaneously breathe on her own while also giving her breaths when needed. The ventilator is giving her 11 breaths. Hailey is doing the rest of the breathing on her own! Her eyes are open nice and wide when she's awake and she's nodding and shaking her head softly in response to questions.
She is still getting the breathing treatments and her lungs still sound good.
Hailey will continue with the breathing treatments tomorrow and will resume the plasmapherisis on Monday. We're grateful for the stable days and are praying for some movement in Hailey's extremeties soon. We want her off the ventilator and back to her old self :(
She is still getting the breathing treatments and her lungs still sound good.
Hailey will continue with the breathing treatments tomorrow and will resume the plasmapherisis on Monday. We're grateful for the stable days and are praying for some movement in Hailey's extremeties soon. We want her off the ventilator and back to her old self :(
March 26, 2011 9:56am
A little bit of positive news. Hailey can do some weak coughs on her own and can shrug her shoulders some now! She's also begun to breathe over the vent settings again! (You can see on the machine when she is initiating a breath and not the machine) and we're seeing her breathing on almost every breath now!
March 26, 2011 8:54am
No real changes for Hailey this morning. They had to place yet another IV last night. No plasmapheresis treatments this weekend, just the breathing treatments for the atlactasis.
Please pray that we start to see some kind of movement from Hailey's extremeties. Let us know that this thing is starting to reverse itself and the treatments are working.
Please pray that we start to see some kind of movement from Hailey's extremeties. Let us know that this thing is starting to reverse itself and the treatments are working.
Friday, March 25, 2011
March 25, 2011 7:45pm
Hailey had a pretty good day! Treatment went well, her blood pressure didn't drop this time during treatment and her heartrate has been pretty normal all day.
This afternoon/evening has been a little bumpy. They turned Hailey and her O2 sats dropped and they had a hard time getting them to rebound. They had to turn up her ventilator settings again to deal with the drop in O2 sats. They've also talked about inserting a PIC line. Poor Hailey has been poked enough!
Pray for them to be able to not have to do a PIC line and for a stable night for Hailey. Hailey will not get treatments this weekend so hopefully she can rest!
This afternoon/evening has been a little bumpy. They turned Hailey and her O2 sats dropped and they had a hard time getting them to rebound. They had to turn up her ventilator settings again to deal with the drop in O2 sats. They've also talked about inserting a PIC line. Poor Hailey has been poked enough!
Pray for them to be able to not have to do a PIC line and for a stable night for Hailey. Hailey will not get treatments this weekend so hopefully she can rest!
Auction for Hailey!
There is an auction happening right now and proceeds will be donated to Hailey and her family to help with costs associated with her hospital stay.
Please take a look at the items in this album:
AUCTION FOR HAILEY
and see if there's something there you just can't live without! Lots of gorgeous things from lots of wonderful people!
Please take a look at the items in this album:
AUCTION FOR HAILEY
and see if there's something there you just can't live without! Lots of gorgeous things from lots of wonderful people!
March 25, 2011 10:54am
Hailey's heartrate has been in the high 120's to mid 130's this morning!! They also did the blood test to see if they can continue with another plasmapherisis treatment today. They need a count of 200,000 to do treatments and after a treatment the count can drop to 50,000. Well Hailey's levels came back at 400,000!! Her second treatment is being started now!!
Pray for the continuation of progress today! So far it's been a great morning!
Pray for the continuation of progress today! So far it's been a great morning!
March 25, 2011 8:49am
They say her chest is sounding a little better. Seems the IPV treatments (air puff) and the new antibiotic is giving this lung issue the boot!! Hopefully she gets her 2nd plasmapheresis treatment today. She's been more alert last night and this morning. Her head nod seems a little stronger. No movement from her extremities yet though. Soon I hope!
Thursday, March 24, 2011
March 24, 2011 8:41pm
Hailey has had a stable day! They did the plasmapheresis today and Hailey's blood pressure dropped once and they had to pause treatment and push IV fluids. They then were able to continue treatment and complete it. They believe Hailey has Atlectasis and not pneumonia. It is similar to pneumonia except it moves around so each time they put Hailey on her left side it moves to her left side and when she's on her right the fluid and stuff is in her right side.
They have her on a machine that basically puts little puffs of air in her lungs, like a fake cough. We hope along with the stronger antibiotic this will help get rid of the atlectasis.
They will take another blood sample in the morning to check her platelet levels and see if she can tolerate another treatment tomorrow.
Pray for Hailey's blood to replenish the platelets and for the antibiotics and treatments to work on her lungs!
They have her on a machine that basically puts little puffs of air in her lungs, like a fake cough. We hope along with the stronger antibiotic this will help get rid of the atlectasis.
They will take another blood sample in the morning to check her platelet levels and see if she can tolerate another treatment tomorrow.
Pray for Hailey's blood to replenish the platelets and for the antibiotics and treatments to work on her lungs!
March 24, 2011 1:32pm
Hailey's central line is in. Now we are waiting on the plasmapheresis machine. They will give Hailey a treatment today, another treatment tomorrow and then let her rest over the weekend.
March 24, 2011 12:43pm
While you are praying for Hailey please include her bed mates too. A little girl named Jewel whose parents just got some bad news, and a little boy named Jason who has severe pneumonia. We've all become a family here. Thank you to everyone for your prayers!
March 24,2011 11:37am
Hailey is having her central line placed right now! We've been asked to leave the room. Please pray really hard that everything goes off without a hitch!!
March 24, 2011 10:13am
Hailey had a rough day yesterday and her night was even worse. She had a real bad de-sat and we had to have an arterial line put in. After that was done she recovered nice and has been stable through the entire night. She still has a mild fever but her heart rate is down and her B/P via her Art line is really good. We're still waiting on the doctor so she can have her central line put into her carotid artery. Then the plan is to start the plasmapheresis today. Were hoping the new treatment will be what she needs to be on the upswing.
The treatments last 10 days and she'll receive a treatment every other day for 10 days. Prayers for no complications during the central line insertion and for the treatment to go well!
The treatments last 10 days and she'll receive a treatment every other day for 10 days. Prayers for no complications during the central line insertion and for the treatment to go well!
March 24, 2011 8:31am
I haven't received an update this morning yet, but I know Hailey goes to have her central line put in this morning. Please pray that the procedure goes well and there are no complications. After the procedure Hailey should be able to start the plasmapheresis.
Wednesday, March 23, 2011
Donations
Hey Everyone,
At the request of a few people I have added a donation button to the blog to allow people to donate to help Jennifer and David with Expenses while they are at Hailey's bedside and with hospital expenses they will have. I'm sure they'd appreciate anything donated, but please don't feel obligated to do so! The money will go directly into Jen's account which only she has access to. Just click the little "donate" button on the right hand side to donate.
Thanks!
At the request of a few people I have added a donation button to the blog to allow people to donate to help Jennifer and David with Expenses while they are at Hailey's bedside and with hospital expenses they will have. I'm sure they'd appreciate anything donated, but please don't feel obligated to do so! The money will go directly into Jen's account which only she has access to. Just click the little "donate" button on the right hand side to donate.
Thanks!
March 23, 2011 10:23pm
They just placed Hailey's arterial line. She's stable and the dr. is going to try to work her ventilator settings down throughout the night. She's been fighting a borderline fever all day. Her xray shows a lot of pneumonia in the left lung. They are starting her on a different, stronger antibiotic. Please continue to pray and send good thoughts for Hailey's heart rate to come down tonight and for her breathing to stabilize!
March 23, 2011 9:21pm
Haileys getting an arterial line now and they just ordered an emergency X-ray of her chest. Upped her settings again on the ventilator.
Plasmapheresis
Here is a little bit of information on the procedure that Hailey will be having done within the next couple of days....
Plasmapheresis is a procedure, in which plasma the liquid part of the blood is separated from blood cells by a machine recognized as a cell separator. There are two procedures that are usually used to remove plasma from the blood, on the first method separator spins the blood at high speed to remove the cells from the plasma. In second method the blood pass through a membrane with tiny pores that filters blood cells from plasma. The cells collected in the Plasmapheresis are returned to the Guillain Barre Syndrome patient, although the plasma that includes the antibodies is useless and restored by other fluids. Patients suffering from Guillain Barre Syndrome are kept under strict medication and medical support to keep the blood from clotting, often an anticoagulant is transmitted through veins.
The process of Plasmapheresis takes several hours.. This treatment maybe appears slightly uncomfortable however it’s usually not painful. The need of Plasmapheresis depends upon condition of patient and treatment recommended by neurological surgeon. Although an average time of plasma exchanges is 6-10 treatments within 2-10 weeks. In few Guillain Barre Syndrome centers, Plasmapheresis treatments are done once a week and in other hospitals treatment is done more than one weekly. Usually the patient undergoing plasmapheresis sits in a reclining chair or lie in bed. Catheter a small thin tube is inserted in a large vein, normally on the crook of the arm, and another Catheter is placed in the opposite hand or foot. Initially blood is transferred to the separator from one tube, as the removed blood cells are merged with replacement liquids and returned to the patient via other tube. The quantity of blood outside patient’s body is less than the amount usually donated during blood donation to blood banks. Are there any risks involve in Plasmapheresis? The answer is yes however these risks are easily controlled.
Plasmapheresis is a procedure, in which plasma the liquid part of the blood is separated from blood cells by a machine recognized as a cell separator. There are two procedures that are usually used to remove plasma from the blood, on the first method separator spins the blood at high speed to remove the cells from the plasma. In second method the blood pass through a membrane with tiny pores that filters blood cells from plasma. The cells collected in the Plasmapheresis are returned to the Guillain Barre Syndrome patient, although the plasma that includes the antibodies is useless and restored by other fluids. Patients suffering from Guillain Barre Syndrome are kept under strict medication and medical support to keep the blood from clotting, often an anticoagulant is transmitted through veins.
The process of Plasmapheresis takes several hours.. This treatment maybe appears slightly uncomfortable however it’s usually not painful. The need of Plasmapheresis depends upon condition of patient and treatment recommended by neurological surgeon. Although an average time of plasma exchanges is 6-10 treatments within 2-10 weeks. In few Guillain Barre Syndrome centers, Plasmapheresis treatments are done once a week and in other hospitals treatment is done more than one weekly. Usually the patient undergoing plasmapheresis sits in a reclining chair or lie in bed. Catheter a small thin tube is inserted in a large vein, normally on the crook of the arm, and another Catheter is placed in the opposite hand or foot. Initially blood is transferred to the separator from one tube, as the removed blood cells are merged with replacement liquids and returned to the patient via other tube. The quantity of blood outside patient’s body is less than the amount usually donated during blood donation to blood banks. Are there any risks involve in Plasmapheresis? The answer is yes however these risks are easily controlled.
March 23, 2011 10:51am
Gosh she seems to be getting worse!! They put lidocane on her wrists so they can do an arterial stick to check for blood gases and they are getting her a vest machine to give her little pats on the back to try and break up the secretions in her chest.
March 19, 2011 10:33pm
Tomorrow's plan is to do a nerve conduction test. Basically to my understanding they give her little shocks to her nerves to see whether its the nerves themselves affected or the outer covering of them. If it is the outer covering, that's another sign pointing to the Guillan Burre diagnosis. At this point, that would be our best outcome...otherwise it would mean its something else which isn't a temporary thing. Will update as I can. Thanks again to everyone for their prayers!!
About Guillain Barre Syndrome
Guillain Barre Syndrome is a rare and severe disease. It occurs after an acute infectious procedure. Guillain Barre Syndrome initially affects the peripheral nervous system. Normally it is acute form of paralysis in lower body area that moves towards upper limb and face. Gradually patient loses all his reflexes and goes through a complete body paralysis. Guillain Barre Syndrome is a life threatening disorder and needs timely treatment and supportive care with intravenous immunoglobulins or plasmapheresis.
The disease initially appears in lower limb and affects the muscle reflexes. Paralysis in lower limb and legs are commonly called rubbery legs or tingling and numbness in legs. Afterwards this syndrome travels in upper part of the limb. Generally in short span of time facial muscles and arms get affected and become completely paralyzed. Normally the lower cranial nerves get damaged and lead to bulbar weakness. It affects the swallowing and breathing resulting in constant drooling. In acute cases of Guillain Barre Syndrome patients complains of temporary Bladder dysfunction. The obvious indication of GBS is pain; it is quite similar to the aching that you get after over exercise or jogging
Generally Guillain Barre Syndrome weakened the muscles and entire body goes through acute paralysis. Often facial nerves get affected, blurred vision and slurred speech are the common signs of this type of paralysis. Numbness or tingling in the feet and hands are also among other obvious sensory symptoms. In other severe cases the muscles of swallowing and breathing get badly damaged. Guillain Barre Syndrome symptoms quickly grow and radically get worse. After that, approximately within 2-4 weeks disease progress usually ends and after 2-4 weeks full functional recovery begins.
Majority of Guillain Barre Syndrome patients regain all their functional muscle recovery within one year. Although there is 3-4% cases that became chronic and patients get severe paralysis affects that wastes their muscles and often lose their lives. Months of intensive physical therapy is essential even if the recovery process seems very slow and futile.
The disease initially appears in lower limb and affects the muscle reflexes. Paralysis in lower limb and legs are commonly called rubbery legs or tingling and numbness in legs. Afterwards this syndrome travels in upper part of the limb. Generally in short span of time facial muscles and arms get affected and become completely paralyzed. Normally the lower cranial nerves get damaged and lead to bulbar weakness. It affects the swallowing and breathing resulting in constant drooling. In acute cases of Guillain Barre Syndrome patients complains of temporary Bladder dysfunction. The obvious indication of GBS is pain; it is quite similar to the aching that you get after over exercise or jogging
Generally Guillain Barre Syndrome weakened the muscles and entire body goes through acute paralysis. Often facial nerves get affected, blurred vision and slurred speech are the common signs of this type of paralysis. Numbness or tingling in the feet and hands are also among other obvious sensory symptoms. In other severe cases the muscles of swallowing and breathing get badly damaged. Guillain Barre Syndrome symptoms quickly grow and radically get worse. After that, approximately within 2-4 weeks disease progress usually ends and after 2-4 weeks full functional recovery begins.
Majority of Guillain Barre Syndrome patients regain all their functional muscle recovery within one year. Although there is 3-4% cases that became chronic and patients get severe paralysis affects that wastes their muscles and often lose their lives. Months of intensive physical therapy is essential even if the recovery process seems very slow and futile.
Hailey
Hailey is a bright, intelligent almost 4 year old. She has 2 older brothers whose names are Hunter and Ryan. Her mom is Jennifer Clark, she is the owner, designer of Hailey's Hair Clips (which is now in hiatus status due to Hailey's condition) and her dad is David Clark.
Hailey loves all things horses, and also loves her ballet class. She was in preschool two days a week and loved playing with her friends at school and the "lunch bunch" there too.
On Tuesday March 15th 2011 Hailey started complaining that her "feet felt funny". Her mom noticed that she was falling down a lot while walking. On Wednesday she took Hailey to the doctor and by Friday they were being brought to University of Maryland Medical Center by helicopter. Hailey was diagnosed with serious Guillain Barre Syndrome and three other cold virus's. Hailey is now on a ventilator and has a feeding tube where she is receiving nutrition.
This blog was created as a way to keep everyone updated without her mom having to take time away from Hailey to update everyone. Please add this blog to your bookmarks or click "follow" on the right hand side to get our updates. You may leave comments and prayers and words of encouragement also as Hailey's mom and dad will be able to read/see them.
Please sending good thoughts and prayers for Hailey to get better and recover from this syndrome and for her parents to stay strong and be able to handle this journey they are on.
Hailey loves all things horses, and also loves her ballet class. She was in preschool two days a week and loved playing with her friends at school and the "lunch bunch" there too.
On Tuesday March 15th 2011 Hailey started complaining that her "feet felt funny". Her mom noticed that she was falling down a lot while walking. On Wednesday she took Hailey to the doctor and by Friday they were being brought to University of Maryland Medical Center by helicopter. Hailey was diagnosed with serious Guillain Barre Syndrome and three other cold virus's. Hailey is now on a ventilator and has a feeding tube where she is receiving nutrition.
This blog was created as a way to keep everyone updated without her mom having to take time away from Hailey to update everyone. Please add this blog to your bookmarks or click "follow" on the right hand side to get our updates. You may leave comments and prayers and words of encouragement also as Hailey's mom and dad will be able to read/see them.
Please sending good thoughts and prayers for Hailey to get better and recover from this syndrome and for her parents to stay strong and be able to handle this journey they are on.
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