Day +281

I am soooo sorry I have not updated in a while. Alicia is still doing very well. We have had a few scares with her vomiting but she is doing fine other wise. We are trying to get back in the routine of being at home. It feels very weird and I miss all of my friends so much back in Cincinnati.


Erika and Anshon and Denise have been here everyday. Alicia keeps telling me that we can not go to the McDonald house, I think in the back of her mind she still thinks we are going back. We have an appointment there on the 21st. I know I am going to have to tell her over and over again that we are coming home. I can only imagine what is going through her little mind.


She seen Dr Rosen again yesterday and I told him my concerns with how the Nurse and his self clean her line. He assured me that it was safe but I am not convinced. The nurse came out Tuesday and changed her picc line dressing and it was a nightmare. It was the most unsterile procedure I have ever seen. I voiced my thoughts very loudly and I am not sure if I am going to let her do it ever again. I can do it myself. I definitely do not want Alicia to get another line infection.


Alicia's counts are all great. Her Platelets are still in the 400 thousands and her Wbc has finally came down to 10.8. Her Hbg is dropping slightly every week so they are keeping a close eye on that. Her electrolytes are finally under control which makes me feel a lot better.


We are going to Cincinnati the week of the 21st of April and until then we will be seeing Dr Rosen every week until told otherwise. I will keep everyone updated on her progress. Thank you so much for all of the support.

Here are pictures of Alicia and her Brothers... The first is with her and Lil Anshon and the 2nd is of her and Jayshon..................

Day +275

So far so good. Alicia is still doing great. I was a little freaked out though when i took her to see Dr Rosen, here in Wichita yesterday. He barely scrubbed her line. She has another appointment next week on Thursday, I plan on talking more to him and the home nurse about the way her line has been cared for. (Heck), we definitely don't need a third line infection.

Here is a picture of Alicia and her cousin Kortnie, who which has been spending alot of time at our apartment. She will be watching Alicia when the time come for me to go back to work in a couple of months.

This picture is of Alicia and the home nurse Becky. I have a feeling Alicia is going to eat her alive.

Alicia is taking a nap now so i better do the same. I will update more later!!

Home Sweet Home

This is Alicia at the Wings of Hope Headquarters... She got a grand tour..............................

We made it HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! This is the best feeling ever!!!!!!!!!!!!! As soon as I got off the plane was drop to my knees and kiss the ground. I am totally serious I know it sounds unsanitary but who cares. Alicia was so excited. our whole family lined the Run way, My Mom told me she could see Alicia's little face waving as we pulled up. Alicia ran right to Ne Ne's Arms. It was an Awesome Home coming.

The leaving was a little hard though. I didn't realize how much of an impact everything and everyone had on me in Cincinnati. I am going to miss my friends very much. That 10 months of our life will forever be in my mind. I am starting to cry just writing about it. Our friends Tina, Jo, Jacy and Cameron came took us to the Airport to see us off. Tina about fell out of her chair when she seen how small the plane was that we were taking LOL it was so funny.

Erika, Anshons and the boys came over after Erika got off work. Boy my Grandsons are ROTTEN!!!!!!!!!!!!!!!!!!!!!!!! I have a lot of work to do before I think I can be able to handle all Three of them. I think the boys were just tired. Alicia was already laying down by the time Mommy and Daddy got here, her tummy had been upset but today is a lot better.

The Home Nurse was here within an hour after we got to the apartment, it took her all of ten minutes to teach me how to work the pump and an hour on all of the paper work. I do not know how well I am going to adjust to this lady. Alicia is pretty hard to handle and she kept looking at her crazy every time Alicia told her not to touch her. She has an appointment tomorrow at 2:30 with Dr Rosen the Hematologist here.

Dr Davies came to see Alicia Tuesday before we left our last appointment. I am so thankful for all that she did for us. She is an awesome person. Theo also came in to say good bye. it was so cute... Alicia told him she was going to miss him and she would call him and she gave him a huge hug.

Day +270

Sorry I have not updated in a few days. Everything is still good. Alicia is doing great and all plans are still in action. I held my breath all weekend and we made it!!!!!!!!!!!!!!!!!!!!! So this morning I got up and packed everything. I didn't dare move anything through the weekend. I was scared it would jinx us. Alicia was napping when I was packing and every time she woke up she would smile so big and ask if we were going home now. Finally I said YES!!!!!!!!!!!!!!!!!!!!!!!


We have one more appointment tomorrow so Dr Davies can give her the good look over and Michelle, our nurse coordinator can go over everything about the discharge and it HOME from there. Our flight leaves at 11 am with Wings of Hope again. They are such gracious and wonderful people.


Hopefully the next update will be from Kansas!!!!!!!!!!!!!!!!!!!!!! I plan on pacing my computer in the morning. Thank you for all of each and everyone of yours support!!!!!!!!!


WE DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I AM SOOOO PROUD OF YOU ALICIA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +266

Well we made it out of the hospital today. I watched Alicia like a hawk all morning until we left (and all night also) Alicia was dancing and singing all the way down the elevators and she has been such a happy girl all day long. I have to admit I was very nervous when I hooked Alicia to her Antibiotic and fluids this evening. It has been a while but the main thing that worried me was she might get another line infection. It is all done and I feel better now, it was the first time jitters after we have been through so much.

Alicia has an appointment with Dr Davies tomorrow at 2pm and another Tuesday at 8:30 then we are Homeward bound!!!!!!!!!!!!!!!!!!!!!!! I feel we are going to make that flight this time. I am sooooo excited. I am sad because I will miss Anshon's Birthday Sunday but I will make it up to him when I get home.


Denise has not been feeling well lately so please keep her in your prayers. Between her and my Mom they have been a HUGE support to me. Erika is very excited we will be home also. That is all Alicia talks about is going to see mommy, daddy, ne ne and aunt Kelli. My self, I can not wait to see my Grandsons I know they have grown since I seen them at Christmas.


We will have to return to Cincinnati in 5 to 6 weeks after we get home but it is only for a short stay. Hopefully only good updates from this point on. Thank you so much for all of the support and prayers once again.

Day +265

Alicia is back to her normal little onery self. The lab finally reported on the type of orgaisms growning from her self infliction of sprite and they are all common water bugs as Dr Davies put it. We are being released tonorrow with an anti biotic that I will have to give her every 12 hours through her IV and back to fluids over night as well. Dr daives want s to see her back in the clinc on Friday and then again on Tuesday then we are set to leave on Wednesday the 18th. I feel like this last episode was a message from the Lord and now I feel better about leaving. My eyes are wide open and I know I have to watch her like a hawk.


I thought today would be a bad day since I was supposed to leave today but it actually is a good day. We are about to go down and have another Picc line out in so wish us luck. Alicia is going to do this without any medication at all. I will update more tomorrow. Once again thank you so much for all of your prayers.

Day +263

Alicia did well with having her port removed this morning. She is a little upset though because they put the IV in her foot and she does not like anyone messing with her feet. The next two days are going to be long ones. She is scheduled to have a picc put in on Wednesday at 2. So I guess that this would mean that we will not be on that flight at 11 am. Here is a pic of Alicia just after she was waking up this morning in the PACU.........................

I am just soooooooo frustrated about this whole situation. The waiting and not knowing is the worse!!!!!!!!!!!!! Now I do not have a clue as to when we are going home. Hopefully Dr Davies will come and speak to me today. And to make the matters even worse, yesterday when I was leaving to go across the street to eat dinner I stopped to double check that the nurse server was lock and I could not believe it.... it was unlocked again. I was livid. I went to the nurse and told her to come and lock it and I let the charge nurse know how upset I was. I told her when will it be enough after a child kills their self........................................... I was smart though, just before I went to gt the nurse I took a picture so I could e-mail it to Dr Davies..............

Luckily I checked or who knows what Alicia would of gotten into this time!!!!!!!!!!!!!!!!!1



Before I end this I want to take a little time and Thank my mom for all she has done for me. I stressed yesterday how Denise has went over and beyond for us but my mom has also. She is the one who took the time to find us the apartment, she has done so much with it also. She has been there every day doing more and more. Thank you so much mom I love you!!!!!!!!!!

Day+262

Alicia has had two positive cultures in a row now. Dr Davies said it is best to pull her port which they are going to do tomorrow. After 24 to 48 hours she will have another picc line put in and a couple days after that we should be able to go home. Who knows when that will be though. I am just so frustrated.


Denise and her Husband have been at my apartment this morning finishing up. I owe Denise so much. She has went over and beyond for me. My Mom has been so great also. I do not know what I will do with out them.

I will update more as i know it.

Day +261

Alicia seems to be doing well. She is still being closely Monitored. In rounds this morning the Doc told me the lab had told her this morning that it will not be til tomorrow until they can let her know what Bacterias are growing because there is a multiple of them. GREAT!!!!!!!!!!!! They are still not ruling us going home. In a way I think they want to make sure we get home as soon as possible because they know how mad I am and this could be a BIG issue for this dept and Hospital. Little do they know that this is not going to be forgotten and swept under the rug. The neglect of care that day could of taken my baby's life. She was just doing what is done to her many times during the day. Alicia and I have had many talks about what happened and we will have many more until I believe she truly understands that is not OK to play with her own line.


As soon as I know the outcome of the organisms growing I will update everyone. Please pray we get home soon!!!!!!!!!!!!!!!!!

Day +260

This morning started off with the nurse telling me that Alicia's cultures have came back and they are positive for gram neg rods. They are not sure exactly which bacteria is in her blood stream but that should be determined soon. She will continue on all three anti biotics until the bacteria has been identified.


Doctor Davies came to see us and assured me that the situation with the unlocked nurse server is being addressed. She also told our social worker not to change our flight and that she did not want to make any decisions til Monday. She said if the bacteria can be cleared without have to pull her mediport than we would still be going home and I could give Alicia the antibiotic at home. She said if it was a type of bacteria that required having to pull her line to clear the system than she would make sure it was done early nest week and this would mean we could go home the following week. First and most important is that all cultures must come back negative which they are taking daily.


I am so glad that this all happened before we left. First of all it has opened my eyes. I have thought about this all night and I am convinced if we were already discharged the outcome would of not been good. Alicia reacted so fast and it was very serious. I realize now that I can never be to aware. Who knows if she has done this before. This could very well explain the last line infection. When we return home all medical supplies will be locked up and Bubba and Theo had to say good bye. Alicia has seen and learned to much while she has been here so long. She just did to herself what she has seen the nurses do many many times. She even scrubbed her line first. I am sure the scrub was not sterile as well as the sprite and syringes but I can laugh about it now. She had played doctor and put water in Bubba's and Theo's lines so many times but I never even gave it a thought that she would do it to herself. This could of taken my baby's life!!!!!!!!!!!!!


I will update more as soon as I hear. Thank you for so much support and Please keep Alicia in your prayers.


P.S After I posted this I did some thinking and I thought a lot of what Charisse left wrote in her post and Alicia and I had a talk and we decided it would be cool if Theo could still come visit, but now he can come and every night and watch a movie and have popcorn and they could color together. This made Alicia very Happy. The bond between this puppet and Alicia is very strong and Theo has been there foe Alicia through most of her difficult times through this journey and I decided it was not fair to break that bond.

Day+259 A very bad day

Where do I start.............. first Alicia has been doing very well the last couple of days. She has had problems with her Magnesium and Potassium levels but they were finally under control and we were to be discharged this morning, just in time to be at the RMH to meet UPS to ship out our stuff and wait out the final 6 days until we were homeward bound. Lets just say things did not turn out that way and I am sssssooooooooooooooooo MAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I have reached my limit and I am very very frustrated.


Everything was good this morning, Alicia and I woke up early and we were in the mist of being discharged. All that was left was to pull her IV's and give her morning meds and we were out of here. I had to run down tot he pharmacy to pick up a few new meds they had put her on which took all of twenty minutes. When I walked back in to her room I about fainted!!!!!!!!!!!!!!!!!! Alicia was sitting in the bed with 9 FULL syringes full of her own blood. I immediately looked at her line and she had hooked herself to a line from who knows where. Here line did not have any blood in it so i FREAKED!!!!!!!!!!!! I asked her what did she use to flush it and she said water. Mind you I work for a water treatment company so I know everything in tap water which is full of bacteria. I grabbed the blood and started counting how much it was and it was 42 cc's she had taken. the nurse was in the room so I started asking how this happened...................... there were also needles and cbc vials in her bed so I knew she had to of gotten into the nurse server which should of been LOCKED!!!!!!!!!!!!!!!! A few minutes later Alicia started grabbing her neck and crying and saying she wanted to lay down and that her chest burned. Her heart rate went into the 200's and she spiked a fever that kept rising. All of the Docs rushed in her room and started ordering all kinds of test and was worried that she had pushed air in her line as well. I lost it. I was so livid!!!!!!!!!!!!!!!!!!!!!!!!!! This is when I looked beside her bed and it hit me that the cup Alicia said was water was the cup I had poured SPRITE in earlier for her to drink. Alicia had flushed her line with SPRITE!!!!!!!!!!


Of course it was hush hush because they realised that the nurse server was not locked, and at one point had tried to convince me the nurse said it was. I told them so explain where the needles and vials came from because I do not carry them in my purse. They could only shake their head.


Alicia is stable now. No results have came back on what all she had put inside of her. Dr Davies said she wants to watch her for a couple of days and she has not canceled our flight. I believe this is a sign from God telling me that I need to keep a much closer eye on her. I made Theo go home to his mommy, no more syringes and play medicine and I called my mom and told her to put a lock on my closet before I got back so I could lock up her meds.


I am very exhausted so I will update later. Tomorrow is going to be a hectic day I am sure because all kinds of Higher up people were trying to talk to me but I told them I was not ready to talk to anyone. I was to MAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ICU Update

I am here at the RMH and wanted to give everyone a quick update. Alicia is doing much better. She is still in the ICU. The CT and Cultures have showed nothing yet which is good news. She has not had a temp since yesterday morning. They had to put in a Catheter (sp??) because they were not sure she was urinating due to the large amount of stool she has had. The surgeons do not thing=k it is an obstruction which is very good. Everything is leaning towards a stomach virus but she is still on three antibiotics. They had to place three more IV's which did not make her happy at all.


Yesterday was very hard on me. My family was moving everything into our new apartment. I am not sure how long if any this will set us back, but I thank the Lord she was here when this happened. Lil Anshon's Birthday is two weeks from today and I really hope to be home for that.


I am heading back to Alicia, thank you for all of the messages and I will update next time I am back at the RMH.