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jailynni s home! she came home yesterday (friday). We are so happy to have her home and she is happy to be home. i am happy to be home too. Now we just have to gear up for way more therapy i think we are going from 5 sessions a week to 8. even our dogs are excited.

6th floor

yesterday maybe 6 or 7 pm, Jailynn was moved out of PICU to the 6th floor. Once there she began running a fever. She is in good spirits but sleepy. My dad insisted that he was staying the night with her. He had caught a bus early in the morning yesterday and spent hours getting here from Pennsylvania. So finally he convinced me to go home so i would get some sleep. I did but my sleep was filled with crazy scary dreams all about Jailynn. I am waiting for jason to finish packing the coolor with his lunch and stuff and then we will head bak to the hospital. I called after we woke up and they said she was fine. Her neuro said yesterday she can possibly go home friday.

roadbumps and picu

Written 2-24-09
Tomorrow was our discharge date from kennedy BUT today jailynn had a fever was. Moved to isolation and then acted fine smiling eating ect but after jay and I ate dinner Jailynn had a long seizure long story short it was like the one she had 1 week after surgery and now we are back at hopkins in the picu. Please pray for my baby! She was doing so great!

2-25-09 we are with her I slept here at the hospital and kennesy kreiger let jay sleep there. She is awake now but quiet I think she's kinda scared n confused
2-25-039 12 noon
Right now jailynn is stable no ng tube no vent she is laying in her. Crib drinking apple juice and eatting italian ice and talking. She is supposed to go to the floor but they don't have a room yet. Ct looks fine and all cultures so far negative for infection

roadbumps and picu

Written 2-24-09
Tomorrow was our discharge date from kennedy BUT today jailynn had a fever was. Moved to isolation and then acted fine smiling eating ect but after jay and I ate dinner Jailynn had a long seizure long story short it was like the one she had 1 week after surgery and now we are back at hopkins in the picu. Please pray for my baby! She was doing so great!

2-25-09 we are with her I slept here at the hospital and kennesy kreiger let jay sleep there. She is awake now but quiet I think she's kinda scared n confused
2-25-039 12 noon
Right now jailynn is stable no ng tube no vent she is laying in her. Crib drinking apple juice and eatting italian ice and talking. She is supposed to go to the floor but they don't have a room yet. Ct looks fine and all cultures so far negative for infection

roadbumps and picu

Written 2-24-09
Tomorrow was our discharge date from kennedy BUT today jailynn had a fever was. Moved to isolation and then acted fine smiling eating ect but after jay and I ate dinner Jailynn had a long seizure long story short it was like the one she had 1 week after surgery and now we are back at hopkins in the picu. Please pray for my baby! She was doing so great!

2-25-09 we are with her I slept here at the hospital and kennesy kreiger let jay sleep there. She is awake now but quiet I think she's kinda scared n confused
2-25-039 12 noon
Right now jailynn is stable no ng tube no vent she is laying in her. Crib drinking apple juice and eatting italian ice and talking. She is supposed to go to the floor but they don't have a room yet. Ct looks fine and all cultures so far negative for infection

discharge date!

Today was Jailynn's steering meeting. Jason and I were ready to argue and fight for what we wanted but we didn't have to! They told us they would take out the tube today after the meeting. They gave us a discharge date of february 25th!!! They are so impressed with Jailynn! She said 3 new words today that she didn't know before surgery and took steps on her own!

We also had a visit by Al and Jody. That is a wonderful family and I am so glad we met them!

Doing Great!

Jailynn is really taking off. Each day she becomes more and more the Jailynn we know and love. Today I was so happy to come to Kennedy Kreiger after my math class and see her progress. I was so excited when I laid her in her crib and she layed down and turned and went to sleep the same way she did at home pre-surgery. So strange to some but so special to me as her mom. Her little personality and mannerisms are all coming back. She did awesome handling all her therapies today for the first time. She had the rest of her staples removed today and all sutures except 1. when her grandma came to pick her daddy up Jailynn lit up. She srtaring laughing, clapping, smiling and her smile changed to a full smile insteada lopsided half smile. She said nani daddy and yay! I am so pleased with how far she is coming all on her own even.

jason and me kinda had it out with a nutritionist, she wouldnt listen to jason at all and for my husband to speak up it must be something important on his mind. she totally blew off what he was saying like she didnt believe him. She doesnt want to reduce jailynns tube feeds, which are 22 hours a day until jailynn eats more by mouth but they are pumping her so full she doesnt build too much of an appetite. we wanted to change the feeds to be after meal times to supplement. tomorrow things should change though. I talked to the pediatrician and we worked it out.

i also figured out why jailynn has been throwing up, hopkins had her on too high of a dose of depakote/ valporic acid. Her dose was raised in november and then lowered because her stomach could not handle the higher dose. her neuro had never changed the dose back down in her medical record, but now it is straightened out.

KKI

Jailynn is at the childrens rehab hosptial and so is Jason. there is a bathroom in he room so he agreed to stay with her tonight. It makes it easier because i have class at 8 am and this way neither of us has to get up as ealry, plus i deserve abreak because i have gotten no sleep at the hospital and im exhausted, plus i needed a good quiet place to do homework. i hope jason can get some sleep tonight. i had to ride home and pack him clothes and food and take it back. i felt so guilty leaving them but only 1 parent can stay and jailynn always wants me now, she has only said dad once. I hope she does okay with therapies tomorrow. i told them if she doesnt have her swallowing evaluation by 6pm tomorrow i would be taking her home and never coming back, so Im sure she will have it.
i realized after i was home i left my meds at the hospital in the drawer with my clothes, ugh i really need them...

oh and icing on my cake, my trackball on my blackberry broke, its not covered by warranty cause its wear and tear and the insurance company for my phone is closed for the night, i cannot open email, send texts or scroll or use the net on it grr21 i hope i can get a replacemtent asap!

kki

We are now at kennedy kreiger. We got here around 11 or 12. Nothing was accomplished today except getting jailynn a chair to be transported in. They sent us here with jailynns central line and a tube ( its not a regular ng tube but they have been feeding her pediasure thru it) well now kennedy will not let her have food until she has a speech and swallowing eval and they are not on jailynns schedule til friday! I have put in a call about that! Hopefully we will have great progress I want her home so bad!

bye picu

So yesterday we left picu to to be put on the regular childrens floor. No bathroom in the room, it is the same room we were in thursday. had to take what we could get cause they've been short on beds. When we got here a neursurgeon on the phone told our nurse to stop food by mouth since she didn't have full time nurse supervision until a swallow study or something could be done. He was not our actual surgeon just a doctor that the nurse ha to talk to to get new "orders" from. I said no way n put my foot down. I know he thinks he was making the right call, but I told the nurse to tell the dr I respect his opinion but I would be here all night and then dad would be here when I am not here, plus it was getting late so she probably would have much more today but I can watch her drink as well as the nurse can and she was fine all day with little attentivness from her picu nurse that other baby in our picu room had issues all day and most of her attention. Its 6 am friday morning and jaiynn hasn't ha any problems from drinking juice and eatting jello. She did hoever wake me up a million times by maiking her monitors go off because she was trying to pull the pulse-ox thing from her toe. I put her socks back on and so did thenurse. Stinker. She also urned her body in a half circle and had her feet haning through the crib bars funny girl!

mri

Jailynn had her MRI they told me they would general anesthesia and no ventilator this time! We are waiting for results now, do no know how long that will take. They decided to stop the EEG. Jailynn has been awake today but not very responsive this morning.she is slowly responding a bit more. She does kinda respond to touch but she still isn't right. Jason and I are going to advocate for her to get her back on a plan to eat soon, atleast on clear liquids soon, she is trying to chew her lips and everything else. I am thinking we will not be in the picu much longer. My aunt called and she is going to bring us dinner

back to picu

Last night jailynn had several long seizures. They were bad and not like her typical seizures. They were very scary. She was sent for a head CT and that came bacl noral just like her previous CT. I was alone in her room when they started. My MIL brought herself and Jason. We stayed til atleast 4 am. They had her hooked up to an EEG and I think they still do. They were going to sedated her with midaz but she was sedated enough by all the ativan and phenobarb and whatever else she was pumped full of. Jason and I are getting ready to go back up with his mom. Right now my parents are with her til we get there.

This is so dissapointing and heartbreaking. Things were going so well. Now we took giant steps back, she is intubated again and I'm not sure if they put her arterial line back in yet. All the wires are going back on and we are starting over. I do not know if I can keep myself pulled together this time

For any families here that had post op seizures how many days after surgery were they

looking good

I am on my cell typing. Jailynn looks sooooo much better, wait til I can get pics on! She looks like a jailynn and not a lil puffed balloon. She is still out of it a bit because of the dilaudid it is on constantly. Her pain dr said soon they would turn it off except for the demand button, that's where we watch her and if she's crying in pain we hit the button and she gets some. She did say yes twice! Her voice is very quiet

she is slowly slowly starting to go down slowly slowly. When i left she still wasnt totally out of her daze. they turned down her dex med 1 step, the nurse could have done more but she spent too much time with another kid and ignored jailynn for a long time, jailynn wasnt in distress but still she could have made time to adjust her meds. we will probably be moving out of picu tomorrow. not 100% but maybe. so i will have to pack clothes just incase. Also today we received a care package from the hemi foundation, we also received our valentines day hemi hug the other day. Sar, dagny and dagnys dad, sorry forgot his name visited us!

awake... kinda

Jailynn has had her catheter and breathing tube removed. It happened when I was on my way back to the hospital from school. Her eyes are open but she still on a high dose of delodid (sp? A pain med) and some of the med they were using to keep her asleep they are weaning her because she was shaky when they tried to turn it off. She is still drugged up "out of it" she has not talked yet. I can't wait now to hear her! Thank god for keeping my baby so safe!!!

awake... kinda

Jailynn has had her catheter and breathing tube removed. It happened when I was on my way back to the hospital from school. Her eyes are open but she still on a high dose of delodid (sp? A pain med) and some of the med they were using to keep her asleep they are weaning her because she was shaky when they tried to turn it off. She is still drugged up "out of it" she has not talked yet. I can't wait now to hear her! Thank god for keeping my baby so safe!!!

2-9-09 some progress

today i had to go to school for 4 hours. jason's dad brought jason to the hospital and sat here until I came from school. i tried to stop at toysrus for a blues clues doll, but they do not have any so i ordered off of ebay today.

Last night before bed I called the PICU, they started turning down Jailynns ventilator setting> this morning the surgeon took out the drain from her head and they began elevating her! Its 3:57 and her neurologist just came in smiling from ear to ear! she is doing great! He said they both he and the surgeon just talked a bit ago about her and she is doing so wonderfully. They have taken away 2 meds and are switiching one today. They will wake her up tomorrow and take her breathing tube out today. They will also elevating her more. Tomorrow or wednesday she will proabbaly move out of the PICU. I am so happy. On thursday they will retest her for the RSV, if shes good we hopefully will not have to wear gear to touch her the nurse today said she couldnt believ she had RSV because there is no snot, that is good because that means it is clearing up or gone hopefully.

My Jailynn is a miracle baby. Everyone has been so great! Strangers, family and friends. I love everyone for it! Thank you for keeping her in your prayers.

She is still very swollen. I cant wait to see it go down. I cant wait to see her open her eyes tomorrow. I love her so much.

a very swollen day

I WROTE THIS EARLIER TODAY
so jailynn finally had her CT after 1pm. Luckily it took no time at all to get the results. We totally expected to wait forever. THe CT looks great but for whatever reason, they have not given me one they decided not to elevate Jailynns head today, which means also no weaning the sedation. A nurse did say that elevating would be good for her oxygen levels or something like that. I am so disappointed. I know shes doing great and I should be happy and its for her own good, but i had my hopes up and for whatever reason i am on the verge of tears. I just took some of my ativan> I really dont want to sit here with jason and the nurses crying like a baby over elevating her head. They are already acing like im crazy for being upset about it. It just seems like a big deal to me and i am so anxious to see more prgress and be closer to her. Is really hard. I cannot hold her, hug her, kiss her, feel her skin, cuddle her, hear her talk ect... its wearing me down. especially since all the doctors told me yesterday that they would start the elevating as long as the CT was clear and it is.

Its infuriating when they do as little as possible just cause its the weekend! I'm sorry life/health/ recovery is a monday-friday schedule!

later a stranger in the waiting room prayed with me to calm me down and for jailynn and everything it made me cry and i started to calm down but then the pain management drs walked by and they know me from seeing us so many times. they asked me what was wrong and i told them and started crying. A few mins after i finished talking to them they found me again and gave me a travel pack of kleenex. I didnt know at the time but they went back to jailynns room and told the nurse to let me touch jailynn bare handed and kiss her goodnight. so later while i was in jailynns room. the nurse told me before i left for the night i could touch and kiss her, jason too. so that way we would be on our way out and wouldnt spread "germs through the picu". It made my whole day better. i cried when she told me and when i actually got to kiss and touch her i was bawling! it made so much of a difference for me. She was responding with lots of arm and leg movement. we saw her moving her left arm leg and toes!!!!!

Day 3

I have some more pictures. jailynn is very swollen. They turned her to midline this morning before we got there. She is heavily sedated but still moving around! My stubborn miracle! She is no longer trying to move her head and it is not taped down. Im sure she is much more comfotable. They took her catheter out today but after hours of her not peeing they put it back in. They said not to worry becuase this sometimes happens because she is so heavily medicated. With her head being unwrapped and turned to midline you can really see how badly swollen she is. She would move her arm and legs when touched and sometimes when we talked to her. She was even trying to rub her face with her right hand. I did see her left leg move today a good sign. Tomorrow morning they are doind a CT scan to check her and if it comes back good, they will start elevated her head and slowly start to wean the sedation.

My dad, visited and so did Jody, Lynn and Al. They are all so great. I am scared, nervous and excited for the next phase, waking her up! I cant wait to hear her voice and see her eyes and hold her.

A lady from the american legion contacted the paper and i called her back, she brought this teddy bear called a spinoza bear for jailynn, she was incredibly sweet and generous

We watched Gifted Hands tonight and i cried. SO amazing how far medicine as come. God bless Dr Carson and and doctors for that matter and god bless Dr jallo. Our nurse are so great as well.

I just called to check on her before I go to bed and the nurse said she is doing fine, but they put her on a new antibiotic just in case because of her fever (which has already gone down) and drew blood for blood cultures.

pictures from today

today jailynn is much more swollen, but that is to be expected. we were visited by Dr kossoff, dr Jallo and diana pillas. A few family memebers came for a short while to peak in on Jailynn a few mins. Diana brought Jailynn a hand made blanket from volunteer women. So sweet! The Dundalk Eagel contatced me with a woman named Mays phone number and asked me to call. Well I called today and she said she wanted to give Jailynn a Spinoza Bear. I have never heard of it but she said its a large bear that comes with tapes to talk and play music. she is very excited to be able to give it to Jailynn. she sounds so sweet. SHe is from a nearby neighborhood and is bringing it to use tomorrow morning. She is involved with the American legion Womens Auxillary and they buy and donate bears> this particular bear she bout with her own money to donate and she wants Jailynn to have it. We are so blessed to have so many people to reach out to us and truely care about us and pray. Jason and I are both doing well and happy with her progress so far. Shes our lil trooper.

another update

Jason and I are here with jailynn. We have ate lunch downstairs and watched part of a movie on our portable dvd player. She's doing well. Very stubborn and still wants to move even though she is on a TON of meds! Dr kossoff came in and said he is very happy with how she is doing. 2 of my aunts wanna come later and see her and bring us dinner. Dr kossoff said they might let her move her head later tommorrown then sunday slow down meds and she should be more jailynn by monday and by thursday he said tough love ( moving and therapy) he said next monday she will probably go to kennedy kreiger rehab because they do not like to take patients on fridays at kennedy.

Going to see Jailynn

I called last night before bed and after waking up this morning. both times I was told by Jailynns PICU nurse that she was doing well and no problems. They have increased meds to make her stay still and not turn her head. they also retaped her head I have a few pics from yesterday

Jailynn is out of surgery and doing well

Jailynn is out of surgery and resting in the PICU. Jason and I sat with her for awhile. Now Jason and I are home trying to relax. Jailynns surgery went very well without a problem or any complications. They finshed way earlier than they expected! Dr Jallo did a great job and even kept all jailynns hair except at the incision lines! I love Dr Jallo. I hugged him twice after asking if I could. Jailynn looks great! Her left side in strating to become puffy. She is a strong and stubborn little girl. They have been trying all different meds and doses to keep her still. She keeps trying to turn her head, i think because normally at night she sleeps with her head turned the other way and with her belly down or sidelying. I held together so great. I am so proud of myself self. I of course broke down crying when i walked her to the or and had to walk back to the waiting room and again when they came and told me she did great and was done.

We do have 1 bit of bad news, now jailynn has RSV. So we have to wear gowns, gloves and masks whenever we aproach her bedside. The mask make me so hot and make my eyes burn.I also really want to touch her skin even if i could just tiuch the bottom of her foot but i cant. Its hard not to be able to touch your baby unless gloved. Human touch is healing and i want to comfort her. I think she will be unhappy with the gloves and masks when she is alert.

Jane from the hemispherecotomyy foundation came and sat with us for comfort and support for a long time and then Al Miller came. I swear I have a huge extended family from joining this group.

I want to thank everyone for the thoughts,w ishes and prayers I belive they worked. And thank God for watching over my little girl. I cant wait to she her awake and eventually hold her.

I also did get a copy of the article from the dundalk eagle they did mention the foundation but not the website ( i really tried to plug the foundation)

surgery day

Jailynn got an all clear to have surgery. They have taken her back and are starting ivs and stuff they will start making incisions around 10 they will call us and tell us when we start anf then call every 2 hrs to update us. It is me and and seven others waiting so far. I felt very jittery this morning and took ativan, jason and I broke down crying and family members too.

colds

My husband and daughter have had colds so guess who is sick now..... yup yup me, how lucky :-( I am drinking OJ and taking airbourne I dont feel horrible and i hope i dont get worse 2 girl today swore by airbourne. I pray it works. I will be heartbroken if i cannot visit her after surgery. I am drink oj and taking airbourne. Iwould rather me be sick and her get surgery than her not be able to
have it. She is still kinda sick with the cold but seems to be getting better each day.

we have looked into getting an account for Jai that people can donate to, the newspaper suggested it. I checked at bank Of America today, it was 30 mins til close and they
had others waiting so someone took a few mins to answer a few
questions for me. They told me I will definately need a tax id number
form the IRS. how would i get that? They took my number since i could
not wait and said they would call me tomorrow. They said it would be
a donation/foundation account. Ugh, I probably will not be able to
get it done in time.



Someone here online said to me something I thought may be true after I
said that I have been worrying more about jailynns cold than the
surgery. I thought by now i would be out of my mind with panic over
negatives of the surgery. Well they said maybe God gave her this
cold to take your mind off the surgery and she will be better just in
time for surgery. Weird way to think but quite possibly true. All
things happen for a reason I believe. that was not word for word from the comment though.