Going Home TOMORROW

We should be able to go home tomorrow after Katie's 9 o'clock (a.m.) dose of medication! I am so excited that I can barely contain it! She is doing great. Eating like crazy and playing most of the time. Nothing else new to report. We have scans/tests at the end of February and then will begin immunotherapy at the beginning of March. Other than that we should be able to just enjoy life!

Pictures

Thought I would add a recent picture of both of the girls. =) I can't believe that my babies are 4 years old and 18 months old! Time flies fast.

Update

Katie will get to go home on Sunday. She will NOT have a central line when she comes home. They will put it back in before we get our scans at the end of February and then begin immunotherapy at the beginning of March. Katie is doing great. Aunt Karla came and stayed with her for Tuesday and Wednesday night. I greatly enjoyed the break and the time I got to spend with Laura Beth and William. Thank you for the prayers and support. We appreciate you all.

Grrrrrr......

Katie had to be stuck TWICE today because the first time didn't work...and now they tell me that she has a NEW blood stream infection! Yeah go us! I covet your prayers for peace. I am so upset that my fuse is very short. Even with my little drunk girl (they gave her some adavan to calm her before sticking her...and she is one happy drunk!). Hope every else's day is going better than my Monday is. The infectious disease doctors should be coming by today to let me know what the plan is. So much for having a little break before beginning immunotherapy.

Hurry Up and Wait

They took out Katie's central line yesterday and placed 2 peripheral IVs in her left hand/forearm. She handled all very well and was in a great mood. After we were sure she was doing okay after anesthesia, William left to go home. Katie has been doing well. She has complained some of her hand hurting and tonight the nurse took one of the IVs out due to swelling in her hand. Please pray that the remaining IV will hold out until we can get out of here. They have found a name for the bug causing Katie's line infection. Apparently it is a common one among bone marrow transplant patients...you would think that they would have guess this then?!?! You would have been wrong. Also they say that Katie's pneumonia is getting better. They have done 3 separate chest X-rays now. Katie also had to have a blood draw today and didn't get to upset with it. Well that is not true...she did get very upset but it did not appear to hurt as much as she thought it was going to. Please pray for strength for all of us...this hospital will wear you down...but you have to continue to fight for your child and yourself. Thank you for all of your prayers.

9th Floor

Katie was moved to the 9th floor last night. They removed her central line this morning and put in 2 IVs in her hand. She is doing well and eating her Spaghetti O's & Meatballs right now. They are unsure of the exact name of the infection that caused her line infection (she had a line infection and a touch of pneumonia.) Once they know what the infection is then they can tell us how long we will have to stay here. Pray that it will not be very long. Right now we are all doing pretty good.

Life on the 8th Floor

Katie has not had a fever in about 48 hours. She also has not had problems with her blood pressure in about that long. She is eating well and is in a good mood for the most part (Tonight her giggle box has been turned on). Yesterday after getting to the 8th floor, I went home so that I could go to my doctor's appointment (annual exam...just a check up with my favorite doctor in the world, Dr. Smith) and so that I could go to work. I have started working PRN for a company that has contracts with home health agencies, the school systems, and early childhood intervention programs (ECI) in the area. So far, I am seeing one person for home health and am starting in Madisonville schools tomorrow. William stayed with Katie...and he has had a difficult day. They are now saying that she has a touch of pneumonia (much like her sister did a couple of weeks ago) and that they want to keep her until at least Tuesday to keep her on IV antibiotics. The first doctor that came in did not explain herself very well and as a result she upset William, who eventually told her to get out of his room. Later Dr. Simko came and spoke with him, explained things better, and William calmed down. Dr. Simko has been with us since Katie first came into the ER this past Tuesday. Of course, by the time that they came to talk with him, he was already upset because they had taken off Katie's dressing to do her echocardiogram and did not put it back on (in effect leaving her open to infection). It took me calling and speaking with Dr. Russel's nurse practitioner before they came in to put a new dressing on her. But it is fixed now. Well that is about all for now. Thank you for your prayers. We are doing better.

Update

We just made it to the 8th floor! Yeah! Other than that there is not anything new to report...they do not have any results back from the cultures yet. Preliminary tests show that it is not the flu or a rhinovirus. Time shall tell. Pray for a speedy recovery. Katie has not had any fever since about 2 this morning. Her blood pressure has, for the most part, stabilized and is within the normal range. Thank you for your prayers and loving texts, calls, and messages.

Continued Prayer

We were admitted to the PICU about midnight. They put us in the PICU because she had to have dopamine to help elevate her blood pressure. However, soon after getting to the PICU they weaned her off of the dopamine and her blood pressure has been holding its own. It continues to be low but not so low that she needs medication to assist her body in elevating it. Her fever continues to persist though it is coming down some. Katie's complaints of pain seem to get better when her fever is lower. They are suspicious of a line infection, though it is not as bad as last time. The nurse says that it is possible that we will get to go to the BMT floor today. Please keep us in your prayers.

Prayer Needed

As I write this, I am sitting in the ER with Katie and William. This morning we went to the clinic and got a check up with Dr. Russell and everything was going good. When we got home Katie took a nap. When she woke up she had a fever of 103. We called the oncology people, packed our bags, and headed to Houston. Please pray for us. Ironically we are in the exact same ER room that we were when we were here the first time back in May...it is not a happy time. =/

Home...

Katie and I headed to Houston on Tuesday. We spend TWO hours in the waiting room, just waiting to get blood work and then another hour waiting to get to see the nurse practitioner. They said that everything is where it should be except for her white count which continues to be a bit low. They did NOT have an answer as to why it is still low...We have scans and tests scheduled for the last week in January...and then hopefully we can get her central line taken out for about a month and half. We are planning on doing the immunotherapy beginning about the middle of March. It will be nice to have a break. The immunotherapy consists of 6 cycles that are once a month in the hospital for about a week each.

Tuesday night/Wednesday morning Katie woke up feeling bad and having a low grade fever. I gave her some Tylenol and some Imodium (the blasted diarrhea is back!) After some rest yesterday she seems to be doing some better. Laura Beth has had a cold since Sunday and Katie just finally caught it. William and I seem to have a little touch of it as well. Hopefully we will all get better soon.

As for my job...God has been doing some great things. A friend of mine got me a PRN job while her OT is out on maternity leave...it only will last a couple of weeks but I may be asked to help every now and then even after she comes back. I also have been talking to a woman about a part time job in the school system and with home health. And then today my rehab director called to say that they may be wanting me back full time at the nursing home in Madisonville because the lady from Conroe is not working out. So we shall see...God has a plan in mind and I just have to be patient! LOL (if you know me then you know that this is a very hard thing for me to do...I like to have control of life...hahaha)

Nothing new...

Katie and William headed to the BMT today. Her hemoglobin and platelets held steady since Monday. She needed some medicine to boost her white count. They took her off of the TPN/lipids (IV nutrition that we were doing at night...but now Katie is eating well and doesn't need it.) The BMT also released her from their care back to the solid tumor doctors (Dr. Russell). We have an appointment on Tuesday with them. All is going pretty good. Thank you for your prayers and support.

More of the Same...

Nothing much to report. Katie is doing well. We are still having to go to Houston 2-3 times per week for blood work and to get transfusions. Today was the first day that we did NOT have to get blood products! We were home by a little after noon (of course we left the house by SIX in the morning!) But of course I didn't stay home...I took William to the doctor in Bryan. As for me...well I now do not have a full time job. They decided that since I have to be away so much that they need someone more stable...I will continue to work PRN (as needed) for that company and am on the lookout for more opportunities for PRN work. Thank you all for your prayers and help. We appreciate it!