April 27, 2010

I think our little man might have a stuffy nose...

...but gosh he is so stinking cute!

I love him to pieces.

It's GONE!

My cyst has gone away! I am so happy to have gotten the news that I got today. Of course the ultrasound hasn't been officially reviewed by my doctor yet, but the tech could see the fear in my eyes so she said "honey, you have been worrying over nothing for the past 5 weeks." It took me a second to realize what she was saying but when I finally came to I excitedly asked her if it was gone. Her response was, "There is no longer a cyst on your ovary."

That was music to my ears.

*Big Sigh of Relief*

April 25, 2010

Follow Up Ultrasound

My follow up ultrasound is tomorrow afternoon (Monday) at 1pm. I am extremely nervous about what they are going to find since I am having a few more symptoms of having a cyst. I am still feeling great, but have had 2 new symptoms that have shown up in the past week.

I probably won't know anything tomorrow but I am going to try to get the ultrasound tech to give me some ideas of what she has or hasn't found. We'll see what happens.

Please say a quick prayer that this cyst has not multiplied and that it has either shrunk or gone away on it's own.

I will let you all know the results as soon as I know something.

Thank you everyone for keeping our family in your thoughts and prayers.

April 22, 2010

Open House this Saturday and Sunday from Noon until 3pm

Hey Everyone!

I just wanted to spread the word that we are having an open house this weekend from noon until 3pm. We really need to get this house sold so if you know anyone looking for a first time home or someone who is wanting to downsize please send them our way. If you want further information you can email me at Livingston318@yahoo.com.

Thank you!

April 16, 2010

August 17, 2010

I got a call today from the transplant coordinator letting me know that Max's transplant date has been set. She told me August 17th. I have to admit though that I was far from excited to hear this. I as nicely as I could ask what happened to July. She told me that they are having a hard time getting all of the surgeons lined up for July but that there are two days that are still in question. She told me that she would continue to see if we can get one of those two days.

I know I am being a pain in the ass, but we were told at the beginning of this whole process that one of the benefits of having a live donor is that we can schedule the surgery for when it works best for us and Max. So why do we want July? Our primary reason is so that Max has time to heal and adjust to his new medications before flu season hits in October. Max's immune system is going to be extremely low post op and we are wanting to give him that extra time to recoup. We also have the chance to go to Florida with my family in October. Obviously we can't commit to anything until we see how Max is doing, but we know for sure that we won't be taking him that far away so soon after transplant if it's to take place in August. This is on the bottom of our list for importance, but it would be so nice to get away and celebrate the new life that Max has been given.

Please don't get me wrong. I am so happy to finally have a date on the calendar, but it's so frustrating that we were told June but got pushed back to July and now we have yet again been pushed back to August. That's another few weeks of dialysis. I know that doesn't sound like a good enough reason to be upset about it, but it is. We are so ready for this to be over and for Max to have one less tube coming out of his belly. We are so ready to be able to just lay Max down for bed and be done with our bedtime routine. I am so ready to not have to weigh him, get a blood pressure, unhook and hook him up to that machine twice a day. The ability to not have to worry about getting home at a very reasonable hour so that Max isn't hooked up until noon the next day. Our list of babysitters will grow by a lot since we won't have to get someone who knows how to hook him up or if Tim and I go out we don't have to cut our date short because we need to get home to hook him up. Oh how we long for the freedom from dialysis. It's a day we have been waiting for for two long years and it just keeps getting pushed back further and further away.

So for now, August 17, 2010 is the big day. I will let you know if anything changes and we luck out with a day in July. Keep your fingers crossed.

April 15, 2010

Max is doing well

Just wanted to post a quick update to let all of you know that Max is doing very well. Dialysis went great on Tuesday night. We were able to pull off enough fluid to get him off of his oxygen yesterday morning.

He had labs drawn yesterday and the results were better than they have been in awhile. His BUN (level that indicates how much urea is in his blood) dropped from the 60's to 43 with his new dialysis prescription.

Maybe the whole hospital stay was a blessing in disguise.

We will be going back for Max's clinic appointment on Monday. They will be doing a different test (Kinetics) at that point to see how well the dialysis is working. He will have to have another blood test done on Monday which is a bummer, but he is tough and will pull through just like he always does.

Enjoy the rest of your week and weekend! We will keep you posted on how things go on Monday- including how much he has grown!

April 13, 2010

We're Home

He is on a little bit of oxygen and sitting with a monitor attached to his toe, but we are home. I am so tired, but feel so guilty sitting in the house on a beautiful day like today.

Maybe a little cat nap will get me motivated.

Thank you for all of the thoughts, prayers and concerns. If means so much to us that all we have to do is post something on here to get all of you wonderful prayer warriors set on a mission.

Thank you.

April 12, 2010

Free pass to A7 Central

Max is at Children's right now. He woke up this morning looking like he had just finished running a marathon. I was hoping that his breathing would ease up a bit after I got him out of bed but it seemed to get worse, so I cancelled all of our plans for the day and called Dr. Ben instead. That landed us a free pass to CCHMC's A7 Central floor. It wasn't Dr. Ben's fault this time though. The attending that was on today didn't feel comfortable sending him home with all of the retractions he was having so she wanted to admit him for observation.

Of course as soon as we got admitted Max's breathing eased up and he thought we were here for playtime. I was sitting here on the verge of breaking down while Max sat in his crib and laughed all day long. He thinks it's hilarious. I just sit here and wonder why?

So what's the plan? Max is on a 16 hour dialysis run right now. He is actually half way through it at this point considering it's 11:45pm. He is doing very well and draining beautifully. He hasn't been having this luck at home and that's why we are here. Max's PD hasn't been going well for about a week now and we were having a difficult time getting him to drain all of the fluid, so he was ending up with a negative total UF (ultra filtrate). Over the course of a few days this was causing him to have a diffiult time breathing because of the extra fluid he was holding onto.

So, instead of his regular PD prescription of 12 hours and 8 cycles, he is doing 16 hours and 16 cycles. This means that the fluid isn't sitting in his pertoneal cavity as long which is preventing his body from absorbing it like he was at home. He would dwell for 1 hour and 7 minutes at home whereas here he is only dwelling for 37 minutes- then he drains. Does that make sense?

We were told that this should only be a 24 hour stay. I packed for 2 days just in case. There is a slight chance that there is something blocking the end of Max's catheter. If this is the case he will be going into surgery sometime tomorrow. I don't think this is what's happening considering how well the dialysis is going tonight.

I will keep you all posted on how the rest of the treatment goes and what tomorrow holds in store for Max.

Prayers are greatly appreciated. If you wouldn't mind asking the Big Man upstairs to give us a daggone break, I would appreciate it as well.

PS: Dr. Ben is on a mission to get us a transplant date ASAP. Hopefully we will be able to put this stress behind us very soon.

April 9, 2010

I just found out this morning that one of our little dialysis buddies is getting her kidney today. Taylor has been through the ringer and back and is finally catching a break. Please say a prayer for her and her family today as she goes into surgery to receive her new kidney.

We are all praying for you Taylor!

I can't Sleep

I have been tossing and turning all night. I can't sleep. I have tried sitting in Max's room hoping that the background noise of his machines would soothe me to sleep. I tried laying back in bed, but I find myself staring at the ceiling thinking about all that's going on in life. Now I am here at 1:00am trying to take my frustration out on the computer- or to whoever will listen.

I am sure you all are tired of hearing me complain about everything that's going on in life. I apologize for this. To be completely honest with you, I am sick and tired of what all is going on in our lives.

I want the transplant coordinator to have called a month ago with the transplant date. How stinking hard is it to get a few surgeons and an OR room on the doggone calendar? Max has had 12 surgeries and it has NEVER taken this long to get it scheduled. This is not an optional surgery people. Tim also has paper work to get sent in BEFORE the surgery. Do they not realize that if this is to take place in July that we are only 2 1/2 months away from the month of July? Do they not know that Duke Energy is not an organized company and that it will be a miracle if the FMLA paperwork is back in time for Tim to take the leave of absence? Do all transplant families have to wait this long to get a date? I mean come on! We have known that this surgery was going to take place for 2 years now. Get it on the dang schedule!

I want this house to sell before the transplant. I am so stressed out about getting the house clean and ready for a showing, if we ever have a showing. It's only been a week, I know, but I am so impatient when it comes to meeting a deadline. This house needs to sell ASAP so that I can alleviate 10,000 pounds of stress off my shoulders.

I want our doggone builder to call us back with our estimate. It's been 2 months since we met with him and still nothing! We are starting to really question this one.

Then we have this "complex ovarian cyst." I am over this stupid cyst! I am so tired of thinking and worrying about this thing. I am so tired of having the thoughts of ovarian cancer running through my mind. I am pretty confident that it's not cancer considering I don't have any symptoms, but there is still that chance and that's all I needed to hear. Hearing that there is a small chance has scared the crap out of me and now that's all I think about. On top of the 110 other things that are going on in our life right now.

Oh yeah. Dialysis. Oh how I hate dialysis. Do I want to get into why I hate dialysis? Well I will give you a little glimpse into the reason. Max was doing fantastic for a very long time. Well God couldn't let it continue, because that's not how our life works. All good things have to come to an end right? Well, dialysis has gone to crap. Max isn't draining well at all. We are having to put him on all 2.5% strength to pull the extra fluid off. What does this mean and why is it such a big deal? Because we only have so much 2.5% solution and well we are running out. We are not going to have enough fluid to get us to our next shipment. I don't know why it's not going well anymore. We meet with Dr. Ben and Dr. Brad on Wednesday, so we will discuss it at that time. We are keeping him from having breathing complications, but we are running out of what we need to do so. I am really hoping that it's not his catheter failing, because that will put us into an emergency situation. Oh how I can't wait for the word "dialysis" to be eliminated from our vocabulary, at least for 20+ years (fingers crossed).

I want to complain about things that I can't complain about on here. I want to throw myself on the floor and kick and scream until all that's going on in our life goes away. Everyone keeps telling me to not let this get to me. Not to dwell on it and let everyone else involved take care of it. That is so easy for someone who is not in the middle of it to say. I so badly want our life to be "normal." All I want is a freaking break from all of this crap going on in our life.

Why God? Why are you doing this? Why do you keep throwing on more things to our already stressful and overflowing load of stuff to deal with on a daily basis? You know the saying, "God only gives you what you can handle." Well God, I can't handle anymore. You are testing me and you are about to push me over the edge. I can't handle anything else, you hear me? I am DONE!

Please give us the "normal" life that we long for. Please free Max from the everlasting nightly and morning routines. Please give him the chance to be a regular kid. Please give Tim and I the strength that we need to get through the ever growing list of things going on in our lives. Please let the thing that we can't talk about on here end in our favor. God, I am begging you to please take some of this stress away from me. I can't be the best mommy that I can to Max because of all of this other stuff going on. Please take it all away so that I can focus on what's most important in life. Please don't ask me to take on more than I can handle. God, please help us get through this.

April 8, 2010

For Sale

For Sale by Owner

3 bedrooms
1 1/2 bathrooms
Newly remodeled Kitchen and Full Bath
Unfinished Basement
Close to AA Highway, Park, Shopping and Restaurants

Email me at Livingston318@yahoo.com for more information or to schedule a viewing.

Spread the word, please.

April 5, 2010

Huge Favor to Ask

Hey Everyone,

We are trying to hunt down pictures from Max's benefit from last March. If anyone has anything that they can send to me we would greatly appreciate it.

You can email them to me at Livingston318@yahoo.com or you can get in touch with me and we will meet up.

Thank you all in advance.

TJ and Shannon- I already have yours. Thank you.