Emma went to see her pumonologist

OU football starts Saturday, Emma wore her OU cheerleader dress today. She wanted me to post this and say GO OU!! for everyone to see.

Emma went to see her pulmonologist, Dr Royall today. He said she seems to be doing fine, he ordered his standard blood work on her, she got 5 stickers for being a good girl at the lab. He wants to see her again in a month and he will do another chest xray then. He was very nice to us today, and even joked with me when he saw me talking to my friend in the hall, whos daughter is also a patient. He told us to stop comparing notes on him, like we didn't have better things to talk about than him! Ha. She enjoyed getting outside and it wasnt as hot today so we spent a little time outside while waiting for our ride when we were done. She goes to physcial therapy tomorrow and she can't wait. I think she really misses Amy. I know her muscles sure do, she is stiff. Anyway that is the update for today.

GOING HOME!!

I took the lady bug ticker with "Days since Emma has been in the hospital down" because guess what? She is coming home tomorrow after 14 days there! We are so excited. She is doing much better and we are thrilled to get her home, we will be having a "party". Thank you all so much for checking on her and praying for her. I will of course be updating this blog as usual but hopefully won't have too much to share like I have the last few weeks.

On a not so happy note we have lost some of our nursing care because they no longer can keep us staffed so we have gone from 12 hrs a day 6 days a week to 12 hrs a day 4 days a week. I will be sleeping on the couch those 3 nights keeping an eye on her. Its actually a little bit of a good thing since I am very picky when it comes to Emma and no one takes care of her like me!

Thanks again for your prayers make sure you check back soon and see how her trip home goes tomorrow.

Hurry and come home Sissy

Just a note from Ella to say "HURRY AND COME HOME SISSY!" I miss seeing my girls loving like the above picture, its my favorite picture ever. Emma is doing about the same as when I left today and its only a few more hours until morning when I can see her again. I have to bring some things to the hospital so we can try her on her home vent. Wish her luck and I will update tomorrow afternoon.

What a diffrence a day makes

What a diffrence a day makes! We are doing the happy dance today, its the first day we have heard the words "home" as in "Emma should be going HOME in a few days!"

They want to try to put her on her home vent and see how she does the next few days, her xray is looking better. No more insulin so blood sugar is good. She is being slowly weaned off the 2 sedatives and she opened her eyes and looked at me today! Her home nurse DeLene came to see her and she opened her eyes and looked at her too. She looks much better. All pink and pretty. They had her hair put up in piggy tails when I got there it was so cute. The social worker set it up so I have rides through Sunday in case we stay that long.

I have to deal with the nursing company and see who our nurses aregoing to be, and make sure we have all the supplies we need. I hate to get my hopes up but it sounds like she really will be coming home. We also have to wait and see what her seizures do when she is off the sedatives.

Our friend Kara is in the hospital sick now, she is at a diffrent hospital than Emma though. All of those praying for Emma please add a special prayer for Kara too, she has an infection in her trach/lungs too. Poor kid. She cant seem to get a break lately.

Well that is all the news for now. Keep your fingers crossed that we will get to come home soon.

Monday Update

I tried to post this earlier but the website has been slow today. Nothing to update really, Emma is the same. Not any worse but not really any better. Xray is unchanged. I will be seeing her tomorrow and can't wait. Ihope tomorrows xray does better. They said she is just so very sick it may take her some time to get well. For all those who care, her big brother Derek went to school for the first time today. He did good and had fun and can't wait until tomorrow so he can go back.

No change on xray AGAIN

Today's xray is unchanged. Not worse which is great, but not better either. They said she is just very very sick and it might take her a while to get better. She has had a few good days the last 2 days, weaning off some of the oxygen and new ventilator settings and weaning off a few of the medicines. It is just highly discouraging that she isn't showing improvements on the xrays. It just feels like she is never going to get better. I know that she will and that we just have to be patient but I miss my baby girl and want her to come home. I can't wait to go see her on Tue.

Sunday Aug 20 10:20am

Emma had a good night last night, no issues with her oxygen, they made a few vent setting changes and she is doing well with that. The doctor did not order an early am xray so he ordered one done for later this morning. The nurse said that they should know what it looked like by earlier afternoon or so. She said since she had an uneventful day yesterday and last night she expected it would look much better. We will see I guess. Keep your fingers crossed. Derek picked out this Blue's Clues puppy for the blog today because its Emma's favorite cartoon. Hope you like it. I will update when we hear about the xray or when any news comes in. I made sure the nurse knew to turn on nascar for Emma to listen to.

Sat Aug 19 night time update

Well no big news tonight, no problems, no changes. I guess that is good in a way. I just wish she would hurry up and get better! I hate not having her here at home. Its too quite without her vent going, I never noticed that it was all that noisy but the silence is killing me. I keep looking at her bed tonight expecting her to be over there sleeping but she isn't. Emma is such a big part of our lives that we all feel lost without her here. I can't even sleep good at night without her in the house, and I worry that she isn't getting better. I just wish we would see a big improvement very soon. All we can do is keep praying, and Emma has to do the rest. She is very strong so I know she will be fine. I am hoping with the uneventful and restful day that means her next xray will show improvements. I already told the nurse that she has to make sure tomorrow's nurse turns on the Nascar race for Emma to listen to. I will remind the nurse tomorrow if we don't get a chance to get up there and visit her. Dad set up rides through our insurance for Tue Wed and Thur so atleast I know those days are set for me to see her (or Dad to go). Thanks for the support all good night for now.

Aug 19 Morning Update

Just got off the phone with the hospital and all is the same with Emma. No improvement on her xray today but its not any worse so atleast that is good. Last night I talked to them before bed and they said Emma had opened her eyes to peer at them once. She then started making a lot of "talking" gurgle noises and acting upset. The nurse read her an email from me, rubbed her hair and talked to her but she wouldn't quite down. Even after they put a bit more air in her ET tube to seal any leaks she kept talking. The nurse said she had been talking about her sister Ella stealing all her toys and clothes while she was gone (She has been a little stinker) and that is when she got all upset! Ha Ha. The nurse said maybe she was looking for Mommy. :-( Anyway she gave her some Motrin thinking maybe she was just hurting somewhere and she quited down. I think maybe her cheek hurt where that sore is or maybe her urinary cath is hurting her. I hate those things. Poor baby, she is being so strong and this is the first time she really "cried" of course she could have been talking because she was bored too. Hard to tell. Keep praying for her and pray that xray tomorrow shows some improvement, this sure is going to be a long hospital stay.

I saw my baby today!! Friday night update

I FINALLY got to go up and see Emma today. She is doing much better but is still very sick. She has a long way to go to get home. She is no longer on the medicine that paralyzes her. She is only on versed and fentanyl to keep her sedated, insulin because her blood sugar is still wacky, and her anitbiotic meropenum. She got taken off the Norepi for her blood pressure today, as it was finally stablized. She has gained 1.2 kg (2.6 lbs) since going in due to all the fluid retention, they dont have her on any iv type fluid, just her milk. They had to give her more lasix today to make her go pee pee for them and get rid of some of the fluid.

She was on her tummy all day yesterday and despite the nurses best effort to keep her out of her own spit, she got a very raw spot on her face. It looks like a carpet burn, there are 2 actually one the size of a quarter the other a dime. I know though that the position helped her lungs a lot so I guess its worth the sore face. They really felt bad about it and said they changed her bedding a dozen times yesterday so I guess they did their best.

They moved her AGAIN last night to another ICU room not sure why but this one is bigger and nicer. I read her some nursery rhymes and got lots of kisses today. She had her hair in a ponytail on the top of her head, pink and green socks with flowers on them, and a really sweet blanket on when I got there. I think they dolled her up for mommy. Anyway that is the just of today's visit, I am not sharing every detail because they are my special memories, only shared by Mommy and Emma, but I am glad I got to share a little with you. Thanks for the prayers and support.

I'm off to see my baby....the most wonderful baby of all. (shh dont tell Ella I said that) Going to the hospital in about 5 mins, I will write when I get home. News this morning is good.

Update Thur night

Just got back from Derek's back to school night, and I cant believe my baby starts school on Monday!! He did ok. Called the hospital as soon as we got back and Emma is doing about the same. They will have her off the nitric oxide by the end of the night with any luck. I am going up there early in the morning and can't wait to see her. I want to see the xrays too and see what we are actually dealing with as of now. Please pray that tomorrow mornings xray shows some impovement. Not too much else to share but I wanted to post to let everyone know she is doing ok.

A special prayer for Emma

Heavenly Father,Look with mercy on Emma,And help her in this time of sickness.Restore her to health, we pray,through Christ our Lord.Amen.

Finally some good news

Finally some good news, not HUGE news but at this point any positive things are good. Emma's chest xray is looking better today, the left lung anyway. The nurse said her right lung is still not improving, which was a shock to me because I never even knew her right lung was sick, they just kept saying her left. So when I get up there I will have to see the xrays for myself. The 3 I saw from this weekend her right lung looked fine. Anyway lets not take away from the GOOD news. Horrah left lung!! They have her laying on her tummy today trying to get that stuff in her lungs to break up. Its a good thing they have her paralyzed because usually she doesnt like that tummy much. She must be doing a little better, because last Thur at Physical Therapy Amy and I couldnt get her to tolerate her tummy well. The nurse told me on the phone she still has a long way to go to get better. I guess even MORE setbacks are expected but atleast finally I have some happy news to share, be it small happy news. Thanks for your continued support everyone!!

Wed. evening update

Emma had another spell where she didn't want to keep her oxygen saturation up today. Around noon time they had to go back in a do a scope down her neck and look at her lungs and "grab" a bunch of gunk out when they were in there. Poor girl. She did ok with it and its breathing much better now. They are doing cultures on the stuff the pulled out to make sure they are treating her with the right medicines. I can't wait until tomorrow to see if her xray improves. I thought she would be getting better by now. Its very discouraging but I keep looking at it this way: atleast she isn't getting any worse. Usually when she gets sick like this she is well and home by now. I have a feeling this is going to be a really long trip. Ugh. Poor kid. She is a fighter though. Keep praying for her.

Wed. Morning update

Emma's xray is unchanged again. They said she got a leak in the ET tube they had put in and that is what probably caused her not to improve. The reinserted the tube and she should do well now. Fingers crossed. I dont know if I touched on that or not but maybe my sister did. An ET tube is a little diffrent than a trach tube. It looks more like a clear straw and has a cuff inside of it that seals around the inside of her stoma (hole where trach goes) so that air can not leak out. They have her weaned almost completely off some of her medicines now which is good. The fewer the better. They gave her some lasix which helped her pee. I am not sure why she is not peeing good for them this trip but she isn't. The lasix just makes it where she won't reatain water. By the way for those of you who are interested in these medicines or conditions I mention I have found that www.google.com is a great place to look them up as well as the other search engine www.ask.com I have to use them every time I talk to the hospital so I can check the way a drug works or the side effects.

I am going to try to get up to see Emma today but it all depends on my friends who are supposed to take me. I have a ride set up through our insurance but the earliest they can pick me up is Friday morning, and then I can set up rides there after with them.

On a lighter note Derek has back to school night tomorrow night. Wish him luck, he is nervous about school.

Another Update

As I type Emma's oxygen sats are low again. They were at 83 when I called a few mins ago. Daddy is at work and the kids are in bed, or I think I would go on up there, but the nurse said its nothing to worry about really and I will see Emma tomorrow. The nurse said that they are weaning her off the nitric oxide they were having her inhale (it helps with oxygen absorbtion) and that she was maybe not ready to come off of it. They had just given her CPT where they pat her on the back to loosen up all the gunk in her lungs, got her rolled to her other side and she just started acting up. I am worried but since her sats are atleast hanging in the 80's I am not as worried as I could be if they were lower. It drives me nuts not to be with her but after the stress of the last few days it might be better if I worry at home instead of right in front of my baby girl.

The nurse had to run and help respitory figure something out for her so I will call again soon. I will try to post tonight with an update but if not i will post tomorrow morning.

Keep sending Emma your prayers

Update

Well Emma is doing about the same. They havent read her latest xray yet but yesterday's showed slight improvement. They stopped the dopamine drip, since her blood pressure has stablized. Yesterday the steroids were making her blood sugar all wacky so they have her on some insulin for that.
I did find out her redness the other day was from them giving her her vancamiocin (spelling!??) too fast and that is probably also what caused her breathing spells she had too, with the desats. Apparently she is very allergic to it, especially when given to fast. The redness is called "Red Man's syndrome" which isnt politically correct I guess but that is what it is called.
I am trying to get up to see her but things today are crazy at home, its payday, school is starting and my husband has to work but I am for sure going back up tomorrow. I hate being away but I know its for the best really because they are wanting her to stay calm and quite and have her in a dark room to try to keep her calm and able to get well.
Thanks for all the prayers. Oh they put her into a bigger PICU room 2 nights ago too, the other was too small for all the equipment she needs.

Monday Morning update

Well last night we called to check on Emma and they told us she had another one of those breathing episodes were even though she was breathing (the vent was breathing for her) her oxygen levels were much too low. Well now they think its a reaction to the antibiotic they gave her called Vancomycin. So they discontinued that and have started something new, I don't have the name of it yet. I asked yesterday if it could be the medicine that made her have the spell as she was also bright red all over like she had a terrible sunburn. They told me the red was from being excited, and that there was NO way she had never been given this drug before and that all the breathing problems were due entirely to her gunky lungs. I was not happy last night when they said it was the drug as you can imagine. So Daddy called this morning really early to check on her and she is doing much better on the new medicine and she is. Her x-ray showed signs of improvement! So lets just pray that she keeps getting well so she can hurry and come home.

I am taking brother school shopping today since school starts a week from tomorrow and then will see about going up there possibly later but Dad is working tonight so I might try to stay home one more night and be with Ella and Derek and return to the hospital during the day tomorrow. Not sure yet what the plans will be.

6:15 Pm Sunday the 13th

I will update as I hear more. I will hopefully be spending days with Emma and nights here at home so I can update.

Emma is still running a fever so they gave her Motrin instead of tyelonl. They did a blood gas test and it came back good, no worries with her oxygen or carbon dixoide or PH in her blood. They did have to start her on a drip of Dopamine because her blood pressure it too low. Mainly the lower part of a blood pressure. I will call in a few hours to make sure it making it go up.

I am just so tired, and worried. This is as sick as she has ever been. I am very positive when at the hospital but to be honest I am a total wreck inside. Its very hard seeing her this sick. But Emma is very strong and I know she will pull through this. I keep telling her how proud I am of her and how good she is doing and what a little fighter she is. Even though she was sedated today and most of yesterday I think she heard me!

Sorry if my posts arent pretty and fancy lately I am just too busy! Thanks everyone for your prayers

Sick Sick Girl

Ok I am home for a bit, so I thought I would update you. She is still sedated, and they also gave her a medicine to paralyze her so she would stop fighting the new vent and to keep her from breathing over it at all. Her xray was worse this morning. Her cultures grew something called Serratia Marcesscens, so they are now able to treat her with the correct antibiotics.

She had a very scary spell right before I came home, so I was stuck there for several more hours. She desatted into the low 80's and then kept going to 68, they were able to bag her and keep her in the low 80s while trying to gigure out what was going on. They did a chest xray to check for a collapsed lung but that was ok, they used sodium bicarb to suction her with, no luck with any plug. It was scary when the resp. person said "get a doctor RIGHT now!" So they did a scope on her and did a deep cleaning of her lungs while down there. She was just full of gunk normal suctioning wouldnt get out. I called when I got home and she is satting 100 at 40% oxygen. They will be doing a blood gas any min and if its ok they will crank the oxygen down. Thank God my friend Lori was there with me, she was a nervous wreck but I handle it fairly well. Now I am a wreck but I will be ok with a little time and some sleep.

Anyway that is a quick update, they are trying to wean some oxygen and vent settings, will do another xray in the morning. More breating treatments and antiboitics. They think her next xray will look better.

Update on Emma (from her Aunt Lisa)

Hi this is Emma's Aunt Lisa. Lori has asked that I get on and post an update because she doesn't have access to the Internet right now.

They took Emma into the Emergency Room in Norman yesterday and they have since transferred her to the PICU at Baptist Medical Center in Oklahoma City. She has pneumonia again. This time in the lower lobe of her left lung. The put a urinary cath in her yesterday which she didn't much care for as well as a femeral artery line in her groin area. The line will make it easier to give her medicine because they won't have to stick her each time.

They also went ahead and did a EEG on her this morning. The official report is not in yet, but it looks like the little "jumps" Emma has are indeed seizures. They gave her a big dose of phenobarbital through her IV today.

Emma seems to be doing okay for now, she just needs some medicine and rest.

Please keep Emma in your prayers as well as Lori. Pray that God gives them both the strength they need to get through this. If anyone has any questions or comments you can email me at QueenieLisa@aol.com

Anyone who would like to send a e-card to Emma through the hospital or a prayer requests may use the links below. Emma Richards in PICU

E-card https://www.integris-health.com/INTEGRIS/en-US/Locations/okcNorth/BMC-okc/GetWellandEcards/IBMCEcard.htm

Prayer Request https://www.integris-health.com/INTEGRIS/en-US/Locations/okcNorth/BMC-okc/GetWellandEcards/prayerRequest.htm

Sick baby

We have a sick girl at our house. I have not mentioned here yet this weekend because I was hoping I was overreacting. But looks like Emma has a cold, I just got over a cold too, tried to stay away from her but someone has to take care of her! She had a small fever last night so I am watching her carefully. She has been really gunky in her chest and we are having to suction her trach quite a bit. She had to have oxygen for about 20 or 30 mins 2 times yesterday. Not very much oxygen but some and that is not the norm for her. Anyway she is supposed to have her evaluation for speech therapy tomorrow but if she keeps the fever I am calling them and keeping her home. I don't want to make her worse or make kids there sick. I am hoping it will all be over with in the next day or two so she can atleast go to Physical Therapy on Thursday, since she missed last week she really needs to go. But better safe than sorry. I am just so afraid to get other kids out at JD McCarty sick. Those children are all so strong but they shouldn't have to deal with a cold because of Emma. She is resting in her bed right now and seems to be doing a little better. I will keep everyone updated.

A poem for Emma

A poem for Emma from her Mommy. Because she is a privilege to me always.

HEAVEN'S SPECIAL CHILD
A meeting was held quite far from Earth,
It's time again for another birth,
Said the Angels to the Lord above.
This Special Child will need much love!

Her progress may be very slow,
Accomplishments she may not show,
She'll require extra care,
From the folks she meets down there.

She may not run, laugh or play,
Her thoughts may seem far away.
In many ways she won't adapt,
She'll be known as handicapped.

So, let's be careful where she's sent,
We want her life to be content.
Please Lord, find the family who,
Can do a special job for you!

They will not realize right away,
The leading role they are asked to play
But with this child from above,
Comes stronger faith and richer love.

And soon they'll know the privilege given,
In caring for their gift from Heaven.
Their precious challenge, so meek and mild,
Will be known as Heaven's Special Child!

Emma's friends

From time to time I am going to start sharing about some of Emma's dear friends. She isnt friends with a lot of children but she is friends with some amazing adults who have her best interest at heart. Today I want to share with everyone Emma's friend and physical therapist Amy. I know she reads this so now I get my chance to make her blush. But I also have to let the world know how amazing she is. Amy works at the JD McCarty center in Norman OK. She is very good with Emma, she is very gentle but she can get tough with Emma if need be. Its people like her that really give Emma all the courage and strength to do things. She always seems happy to see Emma, and even gives her a few cuddles here and there (you cant fool me Amy I see you cuddling her!) She is very good at her job, probably the best therapist I have seen. If something is giving Emma problems she tries to fix it. Emma is very difficult when it comes to making splints and finding theapies that work for her but Amy has never given up. Most people would have told me long ago she is a lost cause but not Amy. She ordered a neck brace which we HOPE works but not sure it will, she really brain stormed on what to do about that little neck that always stays turned to the right. She also worked on foot splints even though she had never made them in the exact way Emma needed them (she is opposite from most people who needs splints). In Emma's life I have come across so many people that just give up and think I should give up too but not Amy she is very supportive of the things we try to do for and with Emma. THANKS AMY!! Take a bow. You are truly a good friend to Emma and our family.

Still a bit jumpy

Well Emma is still a little jumpy but over all is doing pretty good. She is over staring at her nurse right now. She missed Physical Therapy today due to a mix up in the rides (SORRY AMY!). Her new neck collar come via UPS today so next week I will take it in and Amy and I can try to figure the thing out. IF it fits her. I hope it does. It looks very small in the package which is good because she has no neck but I still wonder if its too big. I guess we will see. I am messing with the look of the blog, so if you don't like it let me know. I put a age counter up toward the top that will stay there always, because everyone is always asking me how old she is. Now you can just look. I put a welcome to Emma's blog at the top too, which will stay up there at all times. Its a work in progress. Hope you enjoy it. Emma sends all her love to everyone reading

Emma went to see Dr Wright today for her muscle stiffness. He was very nice, I was highly impressed. He told me a few options we have with Emma and let me kind of pick what to do. We have decided to try a medicine that should help her muscles relax some its called klonopin she was on it once before but they took her off to see if that was what was causing her to stop breathing, it was not. Anyway we see him again in a month and we can figure out if its working good or not and decide if we should continue it. It makes you sleepy, so we might make her so tired she sleeps ALL the time or it might cause her sleep apnea to act up but that won't be a big problem physically though thanks to her ventilator.

Our other options if this does not work is to try another medicine or try botox injections. He also suggested botox injections into her salvia glands to help reduce some of the spit she makes since she drools constantly. I am thinking that sounds pretty good, although I have to do some more research on it online, I hear it is painful and I am not sure about the side effects.

It was hot, the guy from the medical driving company was nice to us and waited for us to finish so we had no waiting and today's trip went quick and easy. We will get her Klonopin tomorrow and I will let everyone know how she does on it in a few days.

We will get her all fixed up soon I hope, atleast as fixed up as she can possibly be, it would be so nice to get her less stiff, it will be easier to hold her and dress her. She is very hard to get into pants so I am hoping by winter we see good results.