Friday, October 23, 2009


Yep, I'm doin the happy dance! Got a text message from the potential donor telling me she had too much to text and to call her!!!! Oh my gosh, I was so nervous as the phone was ringing! But it all worked out because she passed the latest test and was scheduled for her all day appointment with the lab, nurse and surgeon!!!! She'll get all the final testing completed at this appointment... chest xray, blood work and I think sent for a CT Scan of her kidneys!!! Her appointment is right before Thanksgiving!!!!! We're soooo excited and so relieved that she's moving on to the next step! I just hate that it's so far away! It seemed like I wished away time for it to be Oct 15th (Neil's appt) and now I have another month to wait.. I hate waiting for stuff like this!

Neil had his first transplant dream last night... he said it was weird.. he said he woke up and they still had a tube in his throat. I think the anxiety is setting in after seeing the surgeon. He told him 2 things that kind of freaked him out.. he'll have a catheter for a few days post surgery and he'll have a main port, I think they called it.. I think that's for dialysis if there's complications but I'm not sure. I suppose I ought to read up on that.. all Neil said was that he hopes both of those are put in after he's asleep! I hope he doesn't start having a lot of dreams about the surgery... I guess that's normal but I know how dreaming about stuff can sometimes make it worse!

All the boys are better, by the way.. thank goodness because I was getting sick of everyone being sick! And thankfully Neil didn't catch any of it! I guess his immune system is better than we thought!

I probably won't update much till next month because there's really not much else going on! We have done everything we need to do.. we just need to wait for the donor's appointment and then go from there! Pray for patience for me.... I'm going to need it! :)

Friday, October 16, 2009

The good, the bad... the ?????

"I have good news and I have bad news.. which do you want first?"

Ugh.. don't you hate that question? How do you pick? You know right off the bat that something is going to make you happy and something is going to make you sad/mad.. it's such a tough decision. Some people like the bad first, so that when they hear the good.. it's better than good! Some people like the excitement first, because they can't wait for the good news and want to hear positive first and leave the bad for last...

anyway.. today was a good day and a bad day... but for 2 very different reasons.. so I'm going to pick for you.. I'm going to give you the good first but you can scroll down to the bad news first if you just have to know!!!!

The good news is:
our appointment today was wonderful! We had asked if we could get out early so that we could get to school in time to get the kids (it was an early dismissal day). They said they would try their best.. and that they did! The first 2 hours were spent getting lab work done and listening to an 'education' class on kidney donation. Because we have already been through this with Christ Hospital, almost all of it was review. A few new questions arose and we learned a few new things so it wasn't a total waste! After we finished with the educational portion, they took us back to an exam room. We met our new nurse coordinator and answered a million routine questions. She left and brought in the surgeon!!!!!!!! It was so exciting to finally meet one of the surgeons.. I really felt like this was major progress! He spoke with us and did an exam on Neil.. he said while his kidneys are large at this time, they are not large enough to need to be removed before or after transplant!!!! :) He said that could change and other things could come up that would mean they need to be removed but as of now, they are good to stay in, he has room for a new kidney and he's ready for surgery!

*Side note* While we were meeting with the surgeon, our donor called me and left me a message saying she can't get the results of her glucose test till Monday because the nurse that needs to read the test is out sick. I just happened to mention this to our new nurse case manager and she said she would go over and see if she can read them.. and possibly sign off on them so that the donor can make her appointment with OSU.. We're getting so close to her being a match.. keep praying it all works out!

After the surgeon left, the social worker paid us a visit.. again this was all stuff we already knew so she skipped almost all of it and just got to the nitty-gritty... i.e. Medicare... UGH.. not fun stuff but if we have to do it, we have to do it. After she was done, the nurse coordinator came back and and we finished up and I think we were out the door around noon! We were so excited to be done that we decided to go to lunch! While at lunch, I sent a text message to my coworker at school to let her know we would be picking up the boys and not the other person we designated yesterday! We texted back and forth and all was well.

The bad news is:
While Neil and I were enjoying our nice lunch, my phone rang and it was my coworker.. telling me that the recess duty teacher checked in on child #1 and he was sitting on the carpet (it was indoor recess) and looked totally out of it. She said he felt hot and wanted to know what to do because she knew I was at the appointment and couldn't leave to get him. I informed her that we finished early and were having lunch but we would finish up and get there ASAP!

So.. we finish lunch and get to school to get the boys.. at this point, we're signing them all out because it's only an hour till dismissal anyway. Child #1's temperature at school was 101. The school nurse just happened to be there so I chatted with her about him and the whole H1N1 scare etc.. I decide that I probably won't call the Dr but just take him home and load him up with Ibuprofen and put him to bed. However.. when we got home, I checked his temp and it was now 103!!!!! So I called the Dr office. They are obviously inundated with sick calls because they put me through to a nurse to be screened first. I told her his symptoms and she said if it's the flu, there's nothing they can do and she doubts it's strep throat because he has a cough... but that it's up to me if I want to bring him in. I tell her he looks miserable and that I would feel better if he was seen. So she said they had a 615p appt avail! I was really surprised because they normally close at 430p and never take patients that late. She said the waiting room is full and they have to see their patients.

We made it to the doctor and went back into the room.. they took his temp with the head scan thermometer and say they need to get him some Ibuprofen fast.. they didn't even tell me his temp but I could still see it on the display... it was... (hold on to your seat)... 106.4

Whhhhhhh-------what????? Are you kidding me?? I looked at the Dr and almost fainted.. I thought kids died at temps that high! And here my kid has one THAT high! After I picked my jaw up off the floor, I felt really guilty for making him go to school today and wanted to cry! The Dr assured me that she didn't think it was accurate and that kids have high temps like that and it's ok... she said he looked and acted sick but didn't act or look like he was THAT bad.. she left to go get a popsicle and to get the flu test and I started in on the child... "When's your birthday", "What day is it?", "Where do you live?", "What's our phone number?", "How old are you?"... he answered every question correctly and asked me, "Why are you asking me this?".... I told him I just needed to know that he was OK...

The Dr comes back.. and makes his day with a Popsicle... but not before she can stick the flu swab up his nose and practically into his brain.. he complained it hurt.. it hurt me to watch her do it to him! She promptly came back to tell us he tested positive for Influenza-A and that they are considering that to be H1N1 since seasonal flu starts later. She said there is nothing they can do other than pump him full of fluids at home and administer Ibuprofen every 6 hours. She told me what to look for and call if I see any of it and also that he should be fever free by Sunday. She said to watch out for the fever going completely away for 24-hours and then coming back!

So we left and I took him home to get into bed... I went to the store and stocked up on all kinds of drinks and Popsicles for him! I had told the Dr about Neil and she advised I get on the phone with the nephrologist office and find out if they want to start treatment for Neil. On the way to the store, I called the answering service and told them what was going on and to have the Dr on call get in touch with me. He called me when I was in the store and I explained to him what just went down with the child and he said he honestly didn't know what they were going to do because it hasn't happened to anyone else before. He finally said that if Neil has any symptoms of flu, to get to his family Dr immediately for a flu test and go from there.

I've checked on the child twice since being home.. his fever has dropped to normal... which seems extreme to me.. so it either really wasn't that high or Ibuprofen is golden! At the 6-hour mark, I checked again and it was still 98... so i gave him another drink to sip on and more Ibuprofen in case it decides to come back in the next couple of hours.. while I'm sleeping! Tucked him back in bed and told him to holler if he needed anything.... poor thing.. he felt hot to me so I think the fever was going to come back.....but I hope the dose of Ibuprofen zaps it away!!!!!!

so yea, there it is.. extremely good news today...... and extremely shocking, bad news today. I really feel like 'it never ends'... or 'it's always something'... I try to have faith that it will all work out in the end but with days like today, it's tough to get over the hump of chaos!

Wednesday, October 14, 2009

The Big Day!

SIGH... tomorrow is the big day.. the ever so anxiously awaited appointment with OSU... errr maybe it's supposed to be 'eagerly awaited'... (YES I know the difference...)

Regardless of the feeling, it's seemed like eternity that this appointment would come. And it hasn't come without complications and scares...

First of all, I took last Thursday off to go to Neil's regular nephrologist appointment.. only to have child #3 with a high fever the 2 days prior.. and not being able to find someone to care for a sick child, I knew I would be staying home with him. To my dismay, I woke up last Thursday with the stomach flu!!!!! So I ended up staying home in bed with the sick child while Neil went to his appointment alone. I hated doing it but I told him he needed to ask a lot of questions and get details! He is so ornery that when he called me after his appointment, he informed me he was being referred to dialysis in 2 weeks. I was devastated and ready to burst into tears but didn't want to do it on the phone with him so I held back... only to have him say he was just kidding and that his appointment went really well! While I'm glad and relieved his appointment went really well, I was slightly peeved he played that joke on me.. NOT the thing to joke about.. let alone the fact I was already down and out feeling sick. The good and shocking news is that his Creatinine went down 2 tenths.. which seems rather odd to me but I'm not going to question or complain about that since that # is the key to his ticket to dialysis.. oh and he gained more weight which is either attributed to eating more, water gain or his kidneys increasing in size. The doctor wasn't alarmed that he's gained weight. (I'd joke about the weight thing more, saying I wish my doctor felt the same way about me, but Neil would quickly remind me that at least my kidneys are healthy.. so I tend to not joke around with him about that stuff... but ...)

So anyway.. all seemed well over the weekend and then Monday night we get home from school and child #1 complains of not feeling well! All I could think of was a repeat of last week and THAT'S not happening.. I am NOT missing this appointment nor are we rescheduling it so child #1 stayed home from school the past 2 days... and if that's not bad enough.. I WOKE UP SICK on Tuesday! Seemed the stomach flu decided to reappear! Not sure what's going on there but it came back and I stayed home Tuesday.. then today I woke up and had the worst headache ever along with all over body-aches and just extreme tiredness. I decided to stay home again today and rest up so that I'm better tomorrow. I am already feeling much better and have been eating normally tonight.

I have everything ready to go in the morning.. kids lunches are half packed.. I have breakfast to pack for them because I have to drop them off early.. thanks a million to my coworker who will watch them in the morning before school so that we can get to the appointment on time!!!! Love ya K!!!! I'm just finishing a school assignment and decided that writing would help relieve some of my anxiety over tomorrow.

Our donor, who has progressed to the next step, is still doing well and she's ready for this to happen! I think she just has to pass the glucose test she took this week and then I think the last step is a chest xray.. I think and pray we are close cause I'm tired of waiting.. I know other people wait longer and have a lot harder time with donors and being on the list but for me.. I'm tired of waiting and ready.. we are close and I'm excited but at the same time, I know that in an instant we can find out she's no longer a match and have to move on to the next person and go thru all this again.. I guess I will deal with that bridge when/if it comes..

Thanks again everyone for all the positive thoughts and prayers... keep 'em coming and I'll try to update tomorrow night.. but if I don't, don't be alarmed.. I might be too tired to get online.. but I will update eventually! <3

Saturday, October 3, 2009

No news is still no news...

My math professor said in class today that some of the smartest people he knows are people who journal... people who write things down.. people who keep notes... reminded me that I should update.

Nothing new is going on. SIGH...

Neil sees his nephrologist this week for his regular checkup. He had his blood drawn this morning.. please pray his Creatinine hasn't gone up enough to start dialysis. He still feels really good so I would be surprised if that was the outcome of the appointment this week... but I never know what to expect at these appts.

Next week is the 'big' appointment with OSU.. the one that we waited and waited on this spring when we found out OSU and UHC were no longer in network with each other. Anyway.. now that we're back with OSU, I honestly haven't been 100% satisfied. Our coordinator is hard to get in touch with and the 1 potential donor isn't sure the next step as she's not had luck getting in touch with said coordinator. I'm really looking forward to next week's appointment though because we will meet with the surgeon AND get a NURSE coordinator assigned... the coordinator we've had so far isn't a nurse.

A good friend of mine, who is also a kidney transplant patient, sent me this link today on a new study on PKD... very interesting. Thanks Sue!

Please keep my other blogging friends in your prayers. Bruce has had quite a few complications while waiting for a transplant. He just recently found out he 'might' have a live donor as 2 people came forward to get tested! YAY! And his brother, Sean, has his transplant scheduled for Dec 29th.

Thanks for reading, commenting and praying. Your loving thoughts ARE appreciated!