In ICU again

I want to update everyone and let you know Alicia is in ICU. Please forgive me if I do not make since I have no slept a wink all night. It started around 4pm yesterday when she woke up from her nap. She started vomiting non stop for 4 hours and runny stool with blood in it. I got her to the Emergency room and she was rushed to the trauma bay. She has a very High temp and her blood pressure went critically low again. She is on oxygen and is having very bad tummy pains. They took an x-ray and it shows no air in her bowels which could be an obstruction or infection. They have consulted with the surgeons but are waiting to do a CT and the cultures to come back. Her face and body is very swollen due to the amount of fluids they have given her in the past 8 hours. I will update more when I know something. Please Pray for my baby!!!!!!!!!!!!!

Day +250

O my I can not believe it has been 250 days since Alicia has had her transplant. Today I was just sitting here thinking about how slow the days are passing but to look at that number just proved me wrong. So much has happened in our lives these past 250 days. Alicia has came so far.


I got a call today from our social worker and the date is set for us to go HOME!!!!!!!!!!!!!!!!!! We are leaving now on the 11th and that is confirmed. I don't know all of the details or the time but the date is set in stone. All of our stuff is being shipped back home on the 5th. Children's Miracle Network back home is helping us with the expenses and I am so grateful to them. The day we actually get off the plane and we are home will be a wonderful day!!!!!!!!!!!!


My Mom and Denise are moving all of our stuff into the new apartment this weekend. I do not know what I would do without the two of them. I owe Denise and my mom so much. They have went over and beyond for us. I love you both THANK YOU!!!!!!!!!!!!!


I also want to say a very special Thank You to our Church back home. Mrs Helen and Bobbie are such wonderful people. Before we left they did a fundraiser for Alicia and the money that was raised is being used to help with the rent in our new apartment. This will give me time to care for Alicia and not rush back to work. I am so grateful to all of them. THANK YOU!!!!!! I can not wait for the day Alicia and I can return back to church.


Alicia has another appointment Friday, hopefully we will not have the same experience as last week. I will let everyone know how it goes. She is doing so well at this point, at this moment she is in the bathroom putting on lipstick. (it should be named face stick ) I better get in there before she turns into a clown. Thank you so much for all of the support and prayers.

Day +247

Sorry I have not updated sooner. We were discharged early Thursday and everything is going well. Alicia is so happy to be out of the hospital. We had an appointment Friday and it was so hard to convince her that she was not staying at the hospital. She just kept saying " No Hospital ".


Our appointment Friday was a nightmare within its self. Of course my luck I had to get a nurse that obviously didn't get much sleep the night before ( my luck with nurses are not good lately) I am not the one to be messing with anymore and I think she realized it. It all started when she came in to do Alicia's vitals. Alicia does not like to be touched and ALL of the nurse's know this including her. Well she was insisting on pulling Alicia's sleeve up (and she had on short sleeves) and she wasn't having it. I told her to just take it over her shirt and she said fine I just won't take it and opened the door and pushed the machine into the hall. This made Alicia mad because she ALWAYS gets to take my blood pressure after they take hers. Well this nurse told her No because she would have to wipe it down if she played with it. She was pushing every button I had. I then told her that my child has had many blood pressure issues and by her not taking it she could be putting Alicia in jeopardy. She said she was not going "break" the policy. That was very strange to me because we have been here for 9 months and they have ALWAYS taken it over her shirt. Then she went to draw Alicia's blood and Alicia always gets to help but of course the nurse told Alicia No. She told Alicia to do her job and color and let her do her job and draw her blood. That was the last straw for me, I lost it. I told her not to tell my child what to do and I told her to get out of our room and send in Dr Davies.


Our nurse practitioner came in shortly after and I told her what had just happened. She got the machine from the hall and took her blood pressure (over her shirt) and it was very very high. She asked Alicia if she could do it under her shirt and Alicia let her on the first try ( she didn't just grab her and try to shove her shirt up like the nurse) With her blood pressure being high that made me even more madder. I asked to speak to the charge nurse so I could let her know what had happened and ten minutes later the Director came in instead. She assured me it would be addressed an I felt a lot better. She messed with the wrong Mee Ma.


Today we have been just relaxing and I started packing a few boxes. This excited Alicia so much. I let her pack a box also and she kept saying "we go home now" If all goes well we only have 16 days until we will be back in Kansas. I am still not getting excited yet as we all know the situation can change in a matter of minutes. When we are at the airport and out bags are on the plane I will get excited.


I want to ask everyone tonight when you are saying a prayer for Alicia if you could please include a friend of ours as well. I got a call from a very good friend this morning who's son has FA as well. He has had 3 transplants already and she just found out yesterday that his Leukemia has came back again. His name is Anthony and he is such an awesome person. Roxanne, his Mom, has helped me through so much during all of this and it just breaks my heart to know that this is happening to them. PLEASE say extra prayers for Anthony and his whole family.

Day +245 New Port

Another long day!!!!!!!!!!!!!!! First of all Alicia is doing fine. She went down to the OR around 1pm to get her Mediport. She did a really good job and she wasn't scared at all until the Doc put the new NG tube she was getting on the bed beside her and she started crying. I was like HELLO can you please put that away so she can't see it. Here is a picture of Alicia going down to the OR......

Off to the or she went and to the waiting room I went. They had told me it wouldn't be that long and after an hour and a half I began to worry. Finally the doc came out and told me every thing went fine, they just had a hard time finding a place to put it since she is so small and has NO fat tissue at all. He said the port was going to be very noticeable due to the both of those. He then went to tell me that it might take her a little longer to wake up because in the middle of the procedure Alicia decided to wake up. I WAS LIKE WHAT IN THE WORLD!!!!!!!!!!!!!! I wanted to know right away if she would remember any of it and how it happened. He said they had a hard time putting her to sleep and had used the max amount of sedation for her size and weight but they had to give her more in the middle.

Alicia seems to be ok and she is not in any pain as I can tell right now. She is very proud of her New Line and even called Ne Ne and Mommy from the recovery room to tell them about it. Here are some pictures of her new port.............................

We are still on schedule to be discharged tomorrow which couldn't be soon enough. I am soooooooooooo ready to take her out of here!!!!!!!!!!!!!!!!!!! If plans go as expected we will see Doc Davies on Friday and get the exact date as to when we will be on the plane to HOME!!!!!!!!!! Our social worker is working on getting us a flight but no luck yet. I also have to figure out how I am going to get everything back to Kansas. We came with two suit cases and one baby doll and now we have soooooo much stuff since we have been her for nine months.

Thank you everyone for the prayers being said for Alicia. Hopefully we will get to go home soon.

Day +244

Another long night. Alicia's HBG and HCT were both low with the CBC taken yesterday so preparing for the mediport being put in today they started transfusing her blood around one am. That of course means BP checks every 15 minutes for the first hour and every thirty the following hour than an hour after that. Alicia also got another IV ( this makes her twelfth since ICU) and of course this one gave her problems also. Her machines beeped all night so needless to say we are very tired. I am so glad we will be discharged tomorrow!!!!!!!!!!!!!!!!!!!!!!!

Megan with Child life came in yesterday with Freddy which is Theo's cousin. He has a mediport and wanted to show Alicia how cool it looked. (how cute) Alicia looked at him kinda crazy in the beginning ( he is orange) but she warmed up to him quick. Poor Theo was pushed to the side and she wanted to keep Freddy. That didn't happen though but now she is excited about getting a new line today (Thank you Meagan and Child Life, you all are so wonderful) This is a picture of Alicia and Freddy......................................................

And this is of poor Theo and Bubba ( I heard Theo was going to have to retire after Alicia)

Alicia's procedure is set to happen at 1pm but I also heard that once the labs come back and they her HBG and HCT are high enough than we are heading down early. I will let everyone know how she does.

I almost forgot, lil Anson called me yesterday and he was talking so well. He kept saying HI. He will be 2 on the 15th of March I can not wait to see him and I am so glad I will be home for his Birthday!!!!!!!!!!!!!!!!!

Day + 240

Happy Valentines Day to everyone or " Happy Valentines Birthday" as Alicia has been telling everyone all day. I laugh ever time I hear her say it. She has had a very uneventful past two days. She is feeling like her old self again and she is getting very hyper stuck in this little room.


I am very tired, as I usually am being in the hospital but this time around is three times as bad. I am having to sleep with one eye open. This floor we are on is driving me nuts. The nurse's are very nice but when it comes to caring for a BMT patient they lack alot of knowledge. The past two nights they have been late giving her her meds, so I have had to set my alarm for three and four in the morning just to make sure it is getting done. Thank goodness I did last night, her Zocin, which is the anti-biotic that is fighting the many bacterias in her blood was given over an hour late. I pushed the call button three times before they finally came in. On top of the meds I have to watch every nurse coming in. They hear the machine beep when it is finished and anyone of them just walks in, leaves the door open and has on no gloves, mask or gown. I am going crazy watching them and correcting them. Then the worse happen this evening. One nurse was about to hook up her fluids and meds and I could not belive what I was seeing. She was cleaning Alicia's line with an alcohol wipe. I about freaked. I said STOP. She looked at me strange when I told her she needed to scrub it with a chloro scrub. She said well it only an IV, I said are you serious. I told her that we are here for a line infection, that this was nothing to play with and yes I was serious. I asked her how many BMT kids she had cared for and she said only a few. I will be so glad when Alicia gets her Mediport Wednesday so we can get as far away from this floor as possible.


Thank you so much Dianne, John, Michelle, Tina, Jo and Jacy, Jenny and Tana, ans Steve and Shawn for the many valentine gifts you sent to Alicia. And thank you George and Anita for the gifts as well she loved all of them. She kept saying it was her Birthday and I told her no it was Valentines Day so I believe that is where she got the Happy Valentines Birthday.


I will update more hopefully with a lot more rest.

Day +238

Ok I am going to apologize from the start because I feel like I am about to vent..............

First Alicia is doing very well. Still no fevers. She is on her 7th day of antibiotics so only seven more to go before we can be released. The Port is still set to be put in on Wednesday and her labs are all looking good. Her Magnesium is holding steady which is good news.


We were moved o the 6th floor yesterday so se is currently in room 82 on A6. The care here is so much different. I literally did not see a nurse for over six hours yesterday and her pumps beeped for over an hour this morning starting at 7am. I had even pushed the call button 3 times. It woke up Alicia so we have been up ever since. And with being woke up at midnight and 4am for vitals I once again am very tired. Hopefully this week goes by very quick.


I am sooooo getting to my end with this. I am very ready to go home and I think it is in the best interest for Alicia to go home also. The Rmh is wearing very bad on me and I feel Alicia needs better isolation than I can give her with being there. Germs are all over the place there. And it is so hard to stay in that room. Alicia is out of the room way to much, with doing laundry, eating, checking the mail and having a normal conversation with someone over the age of 6. The kitchen is closing there next week so that is going to add to the even more frustration having to leave to even feed her. I feel very comfortable being in the hospital because I know she will not leave the room and everything is provided here so she won't have to leave. I know when we get home the situation will be so much safer for her. It even makes it worse with her getting so many bugs for somewhere ( probably the RMH) At home we would have our own kitchen, washer, and family so she would be much more isolated. (and I would have my sanity)


I called Michelle this morning which is Alicia's nurse coordinator and voiced my concerns. I told her as soon as I was assured the the bacteria was gone, and that would show after she was off the antibiotics for a few weeks then I wanted to take Alicia home. She was very patient and listened to everything I had to say so hopefully we will be leaving here soon.


Alicia is ready to take my temperature and blood pressure so I have to end my venting. Thanks so much for all of the support.

Day +237

The Infectious disease team came and seen Alicia yesterday and she has officially broken the record. I am just so proud of her ( yeah right ) There was one of the bacterias that even they can not find anything info on just minimal he said. He did agree that the antibiotics she was on is the right treatment, but he also said she would have to be inpatient through the whole course of antibiotics.


So the plan today in rounds is to have the mediport put in a week from today on the 18th and then be discharged on the 20th which is a Friday. So it looks like we still have another week inpatient for sure. Doc Davies said yesterday that we are still on the road for home so I am hoping to at least go to Kansas by the week of March 10th. That is a two weeks past the original plan but I am ok with that. At least I will be home for Lil Anshons 2nd Birthday which I am excited about.


I decided to include a list of all the bacterias. What scares me the most is after the antibiotics are done that any of them do not grow back. The Lord has been on our side for this whole Journey and I trust and have Faith he is going to guide us through this obstacle also. Thank you so much for the many prayers.

1. Enterobacter Cloacae
2. Pseudomonas Putida
3. Pseudomonas Aeruginosa
4. Acinetobacter Species
5. Pantoea Species
6. Chryseobacterium Meningosepticum

Now if those are not enough to scare anyone. Can anyone even pronounce one?

Day +236

Not much has changed since my last update. I was right about the Platelets yesterday, Alicia did end up having a nose bleed last night so she was given platelets at 1am.

In rounds the morning the doctor said they Infection Disease Control team has been called in due to Alica having so many uncommon Bacteria growing and they were so surprised. They said Alicia broke a record and they have not seen one child have so many RARE forms of bacteria grow from one Culture. Leave it to Alicia to break a record.


The soonest time they have available to put the Port in will be a week from tomorrow so it looks like we will be here for at least another week to two. Dr Davies came in this morning and said she don't for see this prolonging us from going home to much longer than it was planned for which made me feel a little better.


I will update more later.

I wanted to share these pictures of Alicia. I soooooo love them. This is Bill a VERY nice guy who came to the RMH and gave massages. Denise got one when she was here and she said it was AWESOME. I gave my slot to Alicia as you can see. Alicia LOVED it. Bill came back the next day so I could get one, (which i sooooo need) but we were at the Hospital most of the day ( go figure ) Make sure you let me know when you will be back Bill and Thanks so much for what you did for Alicia.

I also want to thank Anita and George back home for the shoe,s and angel and many many many cards you have sent Alicia. I can not wait to meet the both of you. Also Thanks Dianne, John and Michelle for the Diego coloring kit. Alicia is coloring it now as I am writing this.

Now to the update. Alicia is still fever free and now we are dealing with high blood pressures instead of low. They believe the high Bp is coming from all of the fluids she is getting so the dave her lasics which seems to be helping. Her Platelets also have dropped drastically. They are down to 11,000 today from 104,000 just a week ago. She was going to get platelets this evening before she went to have her Pic line put in tomorrow morning but that all has changed now. Dr Davies now wants to put in a mediport instead of a Pic. This is a device that will be placed under her skin in her chest that will have to be accessed with a needle every time but it is not as easy to get infected plus it is more convenient for when we go home. They want to wait til the end of the week to put it in to make for sure her body is clear of the bacteria that has been found. We are up to 6 types now and all but one the doctor in rounds said he has never heard of before. GREAT!!!!!!!!!!!!!!!!!!! They did say these are very serious bugs and he wanted to research a little more to make sure she is being totally covered for all of them. Tina looked them up and is explaining them a little better to me so I will let everyone know more when I understand myself.

We will more than likely be in the hospital til the end of next week and I was told this will set us back a few weeks to when we will be going home. I am ok with that as long as Alicia is ok.

I will update more when I find out. Thanks to everyone

Photos

Something happened when I tried to posts the pics with the last post. Sorry

Day +234

I just wanted to update everyone real quick. I am sorry I did not update everyone yesterday but it was so very busy with Mommy and Daddy here and we had some very much needed "Family time". Erika and Anson are leaving for the Airport in 30 minutes so the tears are starting to roll.


Alicia was moved from the ICU Friday and her Pic line was removed also. She has been fever free since we have been on the BMT floor. We learned yesterday that there is not just one type of bacteria growing in her lines. They have already detected 5 different kinds which is not good. All five are responding to the antibiotics which is good news. I will let everyone know more when I find it out. I do know that they are planning to have her Pic line replaced tomorrow so that means only one more day of being poked. She is already on her 3rd IV. She will have to be on a long coverage of antibiotics to fight the bacteria they just have not determined whether all of that time we will have to be inpatient.


Thank you for all of your support and I will update when I find out more. Here are some pictures I took just before we left the ICU. I know everyone wonders why I am never in the pictures, someone has to operate the camera LOL. I am not photogenic.

Day +232

O my what a long day yesterday was. I was a walking zombie but I feel a lot better today after some rest. Alicia is doing some what better today. They battled her fevers all night but she has stayed clear of them for the past four hours. Her Blood pressure is under control though which is a HUGE relieve!!!!!!!!!!!!!!!!!! I know everyone was praying for her yesterday and I want to thank you from the bottom of my heart and I want to say an extra Thanks to Tina. Thank you so much girl for updating Alicia's site and checking so much on her LOVE YA!!!!!!!!!!!


It all started yesterday morning I woke up after only sleeping for two hours. I stayed up late and watched 9 episodes of Dog the Bounty Hunter. I couldn't sleep probably from the excitement of knowing Erika and Anshon were on the way. Any way when I went to change Alicia's pull up she was as hot as an oven. I took her temp and is was at 106. When we got to the ER she was at 105.7 with her heart rate at 262 and she was breathing very hard so they took her to the Trauma room and she was swarmed with Doctors from there. They started three different Antibiotics and that's when her Blood pressure bottomed. She got as low as 39/21 so she ended up going to the ER.


Erika and Anshon got her around 7:30 last night and of course when Alicia seen them and of course she was healed. She turned the light on sat up and her and Daddy started playing video games. ( I could of strangled her LOL). After Alicia fell back asleep we went to grab something to eat and then I came back to stay with Alicia at the Hospital so I would not miss the Doc's in the morning. I slept really well and fell a lot better today. Her Blood Cultures came back that they had drawn in the ER and it showed that she has bacteria growing in both of her Pic Lines so that was the cause of the high fever. They are pulling her line today and she will have to have regular Iv's put in until she has a Negative culture which could take a couple of days. Then they will either put in another Pic or go back and put in another Central Line we are not sure which one yet.


I will keep everyone posted. Thank you again for the many prayers.

ICU

This is Krisstina updating for Michelle.
Michelle has not access to the Internet for a few days and just wanted to let everyone know what is going on.
Alicia is in ICU for high fevers and low blood pressure. This morning about 6:30 AM Michelle felt Alicia and she was really warm, so she took her temp. The thermometer maxed out at 106. so Michelle rushed her to the ER. Her blood pressure was dropping and got to 40/20. She has been admitted to ICU. Please pray for her.
Erika had a pre-scheduled trip for today, so as we speak she is on a plane for a weekend visit. Thank god, Michelle is exhausted. She will be in Dayton about 5:15 PM and here in Cincinnati at about 7 PM. God works in mysterious ways!!
We will update as we receive information.
Thank you so much for checking in on Alicia.
Updating for Michelle
Krisstina

Day +228

Everything is still going well here. I am just waiting to see if the Groundhog sees his shadow................... We definatly have luck on our side now and do not need any more bad weather ( if you know what I mean)


Alicia is getting sooooooo excited to see her Mommy. Today she woke up at 6am and woke me up to tell me it was only three more days. I could of strangled her. I just smiled to my self though and thought she must be feeling so good inside!!!!!!!!!!!!!!!!!!!!!!!!! So needless to say we started our day off very early and Mommy and Daddy where the means of our conversation for over an hour. Erika and Anshon will land in Dayton around 515 and it is an hour from here and with time allowing to get the Rental I believe they will arrive here around 7pm. I really want this weekend to be special for the three of them. This will be the last before we get to go home!!!!!!!!!!!!


Robin the Home Nurse just arrived to give Alicia her weekly infusion of IVIG and she informed me the Ground Hog did indeed see his shadow.................... GREAT!!!!!!!!!!!!! Another six weeks of winter. Hopefully there was a different Ground Hog in Kansas than here in Cincinnati. As I am writing this Robin is drawing Alicia's blood and she is singing. Alicia believes if she sings while her blood is being drawn it makes it come out faster. Alicia has such an awesome voice. I truly believe on day she will be on American Idol. Alot of you guys have probably heard her, it is so cute to listen to. I need to teach her a new song or at least the rest to the song she sings now. It is "Jesus Loves me" she sounds very good and can hit some notes I have never heard before. It makes me laugh and feel warm inside when I see her. Pastor Watson if you are reading this we will have to let the Church hear her!!!!!!!!!!!!!


Well I am being summoned from the other room. I am usually hooked to a pic line by now. Alicia gives me a line and hooks me up the whole time she is getting her IVIG. Alicia has a home made pic line she made out of a blood pressure cup and used caps and she has a line hanging from her pole that I am connected to every Monday morning for at least two hours.


Thank you for so many prayers.