I've posted as many links as I could that had stories bout Katie. Some old and some newer but they are there for all to see. I found something that may help Katie till the PT equipment finally gets here called an upsee harness. Hoping it'll help her stand and walk again. She seems to like it so far.
Next appointment for her trach they have promised to move her down to cpap which is good. She can now drink lightly thickened liquids. Still can't eat yet. Still trying to get her right arm to move and still working on standing and walking
Katie can now sit unattended with no help. She can't put herself in that position yet but if placed there she does fine staying there
4 weeks left of rehab now.
Smiling even with what she goes through
Standing machine now. All the way up
Finally got her helmet. And is approved to go off the floor now. Tryin small foods now like yogurt and pudding. Very small amounts. So far so good
Fell asleep after throwing up all the night before finally
Katie is allowed to lay in bed without brace but will need it when she gets outta it till neck is strong enough. Has a horrible rash from the brace.
Surgery is over. Halo is finally off. Has to ware neck brace for a couple weeks.
Daddy's here to visit.
Baby girl followed more commands today. Spoke a lot also. Baby jabber and word mixture
Peep went down to 7 last night. She did great. Stats are lookin awesome. Let's hope with each change to that vent that she continues to do well. If so she'll be off it in no time. Still praying.
Chest X-ray came back lookin good. They tested her bladder also. Looks good. They decided for now to not cath her anymore. Thank god. She's done great with peep at 8 so soon they'll take it to 7. Halo comes off 9:30 on the 7th. Can't wait
Katie wasn't as cranky during therapy thankfully. Peep is down to 8 now. Cuff deflated. So far so good. Lord please keep healing my baby.
My hubby is boarding first flight. To Atlanta he goes. :(. Katie has a very busy day tomorrow. Poor baby. In between all the therapy she has a app with bone doc tomorrow to check shoulder and halo healing progress. Tuesday she has some sort if a scan on her kidneys and such to make sure all is well with how often she's being cathed. Since Katie has been here she has thrown up almost every day. Now to the point that if giving her meds for settling her tummy and meds for possible dizziness don't work she'll have to have an iv. :(. Don't want that at all. She has gotten a lil more motion outta both arms and legs since we've been here. It's just for some odd reason her stomach won't settle since she's been here. Also. I got to hold Katie today. Finally. Even with halo. That thing is seriously heavy lol. But I didn't mind. Was so happy to have her in my arms. I'll be happier once that halo is off. She seemed happy too. She slept on me. :)
We will be leaving Monday or Tuesday depending on the weather in Maryland. Should know for sure which one by today. To all of you that have continued to pray and/or donate to help her I thank you with all my heart. My daughter is my life and I can't tell you how much your support and kind words mean to us.
Update: great news insurance finally approved. So as long as we can raise money in time and the weather holds up she'll be leaving for rehab Monday between 10-11am. I wanna fly with her but small plane. Not sure if it'll hold me and my bags and wheel chair and walker. So gotta check on that.
To all that have prayed and donated money to help my baby girl I can't thank ya'll enough. My daughter is my world and without her i'm nothing. I thank all of you from the bottom of my heart for your continued prayers, kind words and support. Thank you.
Should hear something hopefully today bout the rehab in Baltimore, Maryland Hope it's good news. I pray this one or New Jersey will take her. Please lord please.
Update: rehab in New Jersey is willing to accept her as long as my insurance goes through. Should know something bout that within next couple days. If they do accept her they'd need Ryan to come up every weekend weather by car or plane so that's something needing to be figured out. Weather rehab denies her due to insurance or not we need to find a house still ASAP. When I came in today Katie was sittin in a wheel chair rather then Layin in a bed which is a huge improvement. Sat in it 20min then put her back in bed. Said they'll be gradually upping the time she spends in the chair. Is gonna have eye specialist as well as a specialist that works on testing ones swallowing ability see Katie soon so we can know how much she really is seeing and when she'd be able to eat food without a tube. Hopefully these specialists have good things to say bout her when they do finally come to see her.
Katie made several spontaneous movements today. Course the nurses are trying to make it seem not as amazing as it is. I'd be just sittin there talkin to her and she'd move her leg up or move her toes. Majority of rehabs case manager have contacted are sayin no cause of Katie being on a vent or cause Katie won't respond to commands. I had given her some more that were given to me this morning and she called me about ten min ago saying they all said no for the same reason. She's waiting to hear back from three of them. She is saying if these decline her as well that she won't be trying anymore because if the bigger well known places all say no then the not so well known places will probably say the same. She said in that case if she hears from these last few and they all say no that we will be trained on Katie's machinery and after fully trained that they may be able to live with Katie in the hospital for a short time to watch us and make sure that we are doing what we learned correctly and if so they will send Katie home.. Our home is still not suitable by any means for her condition or her machines. So please pray we find a rehab or a home that is suitable for her to go to soon.
Update. Shriners denied her. Katie's brain isn't healed enough yet. Case manger has called a lot of different recommendations y'all have given. Most don't take patients her age though there is a couple she's waitin to hear back from. Mother in law found a site that can help you search for brain and spinal rehabs so I gave that site to my case manager to utilize. No new updates on Katie except she moved her foot without me touchin it and she may or may not have taken one breathe unassisted. They aren't sure. They are tryin to teach me how to do different things. Don't think I'm ready. They were showing me how to suction her and change gauze around treak and I saw the hole in her throat. Had never seen the actual hole till today. I cried. And it almost sounded like Katie was tryin to cry. I calmed her down when they were done but they are wanting me to do it tomorrow. I honestly ain't sure if I'm ready for that in just one day if seeing them do it not to mention seeing how upset Katie got. Feel so bad for my baby girl. Please continue to keep her in your prayers. and pray we find a rehab soon. I don't want Katie to get worse. The longer she is without rehab the harder it'll be for her to heal. Pray that until a rehab is found they don't make her come home. it's not suitable for her. Too small and crampt. It'd never fit her machines and with the rooms being upstairs we wouldn't get it all up there. Please let us find a house soon that'll work for Katie before they release her.. at the very least.
Michelle Oliver: I gave that recommendation to the case manager so we'll see what happens.
Update: We were told last night that Katie will not be going to Scottish Rite. They said she's not improving enough. Now we are trying to find another place for her to go and quickly. We were told by hospital that if they can't find another rehab for her and fast that they'll have no choice but to send her home. Our home is very small and crampt and has no room for any of this equipment. She shares a room with her brother on the second floor to top it off and they said that won't work that the house has to be all on one floor not two so now we gotta find another place to live. Please pray that we are able to find a new place to live and a new rehab for Katie to go as quickly as we can.
Tuesday Update: No new news. Everything still the same. no changes. We will be leaving to Atlanta tomorrow or Thursday more then likely but still not a sure thing. They have to make sure all the paperwork is in order. I really hope that the rehab will make her stronger and that we see her progress. I miss my baby girl so very much. I just want her to be better again. She was still giving lots of kisses and moving her tongue around alot. Which is good. She had her first BM today without the help of meds which is a great sign. Lets hope they wait on giving her anymore laxatives to see how she does on her own considering what she was able to do without it today.
Mondays visit. Full of kisses. Every five seconds I get kisses. EEG showed no seizures. Yay.
After Ryan's visit last night he came back sayin that the surgeon was comin by some time today to check Katie's arm. They are concerned with the way her arm is strapped that it may be dislocated. They tried to do a X-ray yesterday and wasn't able to see anything due to halo being in the way. So surgeon will be deciding if they will force her arm upward to get a better shot in the xray. I hope he says no cause if her arm is fine they could break it by moving it like that. Was also told piece of her skull wouldn't be put back in for like 6mo and that's not what all the other docs said so I don't understand why it's being said now. I plan to ask a whole lot of questions when I get there this morning cause I don't think either of these things are right.
Doc came in said specialist about lookin at her arm and said they call me with what they'll do. As far as skull they said the nurse who spoke to Ryan was probably misinformed they still think it'll be put back soon after rehab.
They gave her some tylonal today cause of me being concerned from the expression she had on her face. been making a crying face for a few days. Lookin like she was tryin to scream. Don't know if from pain or if from just tryin to hear herself and being confused as to why she hears nothing. It appears to be helping cause i haven't seen it near as often. also have noticed that she's interacting a little more like closing her eyes when i cover mine then opening them up when i say peek a boo. she's improved so much in one week. for that i'm so thankful. really hope it keeps going.
Now that Katie's account is up those of you who wish to donate money directly to her you can go into any "Tennessee Valley Federal Credit Union" bank and deposit your checks or cash in Katie Barkley's account. They said to just give them first 6 of her account number 210229. And they will deposit it. Or you can mail them to my home 3475 hedge dr. Cleveland tn 37312 and as soon as I get them I'll place them into her account myself. Those of you who have made donations I thank you from the bottom of my heart. Every little bit helps pay all these medical expenses. I hate seein my baby girl having to endure all of this but glad to have people in my life willing to make it possible to get what she will need.
They were talking bout taking off catheter in the morning. sadly Catheter not being removed. They need it to be constant a while. Probably won't see specialist till after rehab. I do hope when she sees one they'll let her be off one cause she is pooping and peeing on her own and most of the time empties it. She tolerated full feeds though they r bringin it down the calories of it so she don't gain too much weight till she can be more active. Trek being changed Monday. She just burped. Miralax every other day. Tomorrow will be on antibiotic for preventing uti. Kidney and lung docs will be here today. They will see her again after rehab to see if catheter can come off. The other handles vent stuff but I'm gonna try and get tony on that. My cousin. Said she may be partially blind due to not reacting to quick movement toward her face. But that's something that'll be worked on at rehab. Said she'll see a specialist to confirm or dis prove that after rehab.
Thank you lord for letting Katie know me. For giving her to me. The blessings you allowed her to show today warmed my heart. To see her grin when I sang. To see her calm with my touch. To see her show her love with her sweet kiss. And to see her down when I left. That showed she was gonna miss me and didn't want me to go. I thank you for all she showed me today and pray it's your will for her to continue to show this to me and to continue to progress forward. I know it was you that healed her enough to show what she did today. And I can't thank you enough. From the bottom of my heart and soul thank you. Amen.
Katie will be going to Scottish Rite. They are thinking that she will being going Wednesday or Thursday. They said that she has a good chance where she may be able to speak and eat without feeding tube with time and a lot of work. walking or breathing on her own they are giving her a very small chance. I'm glad that when at the rehab rather then being across the street I'll be either in her room or a room close by on same floor. It'll be nice to be with her through everything day and night. I'm really hoping that I'll see her improve past their expectations in the 6 weeks we'll be at rehab. they said she'll be able to be taught how to speak with the trek but i'm hoping she'll one day not need it. But they can attach another machine to make it easier for her to talk through the trek. Please continue to pray. Pray she'll do the impossible and breathe on her own. And walk. Lord please make a miracle. Be with my baby girl. Heal her.
In case any reader or interested party would like to read more and view more pictures daily, please go to Pray for Katie Barkley on FB; or to Glyndora Condon's page, or to Katelynn Barkley's page, and even to Kathy Quinn's page; and there will be more to read and more current pictures each day regarding our Katie.