Since when is health a measure of success?

I noticed the other day that most people say that if their children grow up to be happy and healthy than they were successful. And what happens if they don't grow up healthy? Does that mean they or their parents are any less successful? I find that such an odd measurement of success since in most cases health is by chance. Yes you can work towards being healthier but for the most part it's a series of chance happenings. It's not as if I could have done anything to insure that Logan's kidneys grow. I did everything right and yet still he is not truly healthy by a medical standpoint.

For us with children who it is not necessarily easy to keep alive, I think success is just that, keeping them alive. But, then, if they do die despite us doing everything we can, does that make us any less successful?


--I have come back to this post several times in the last minute because I can't seem to figure out what else to write. So I ask you, what is success?

Home again, home again, jiggity jig.....

Well, as the title alludes to, we are home again. Hopefully this time for quite a while and not just a few days. Tuesday morning after a very uneventful few days Logan woke up around 4 am with an exploding diaper. Boy will I miss those some day. This is not out of the ordinary at all as the Kaexalate causes him to have diarrhea-ish, explosive poops. It keeps him alive though so I guess we'll keep it around. : ) While I was changing his diaper I noticed him shivering. My first thoughts were, "hmmmmm....he did this last time at the beginning of infection." I took his temperature and it was really low grade. Looked at his drain bag and it was clear with no fibrin. So, we went back to sleep. When I woke up in the morning I recalled the low grade fever and went to check the bag only to find it looking like dirty water with TONS of fibrin swimming around in it. Well, blah. I call to Corpus and of course we need to bring him in because it means the infection is back. From here out I go into panic mood thinking of all the possible bad things this could mean. We pack quickly and for the first time ever, Vidal comes with us. YAY! This is really great because the last few hospital visits he has said he felt very helpless. We dropped the big boys over at my mom's and then took off. On the way, I got pulled over and got my very first ever speeding ticket. At least I have something to hold over Logan's head one day, LOL. Mr Police Officer was not at all concerned with the very sick child in the back seat. Though in his defense, I'm sure he had not clue as to what peritonitis is and how serious it can be. And he really didn't know that this was an infection coming back, making it a bit more serious. I wasn't driving crazy fast but defintely over the speed limit. I admit it. In my defense, there was no shortage of horrible thoughts coming into my head about why the infection was back two of them being that it had now become a fungal infection as well and the other being that this was an antibiotic resistant infection. Again, there is not a high mortality rate in these children for no reason. And as I've visited before the thought no matter how slim the chances of having to bury one's child is just about every parent's worst nightmare. Though I know I shouldn't have been speeding, I think most people would have in my position. I'm going to call on Tuesday morning for an appointment with the judge to see if maybe he can lower the ticket amount as money is hugely tight. For that matter, I would prefer community service. My mom said I already was, working with a disabled child. I don't think your own counts as community service mom. : ) Considering this is my first EVER speeding ticket in 10 years worth of driving AND it's only my second ever ticket the first being for an expired inspecition sticker, I'm thinking the judge may at least hear me out.

Once we got to the hospital they ran tests and admitted us. Logan was running around happy as could be to be "back home." He loves the hospital. It doesn't phase him a bit. He loves flirting with the nurses, CNAs, and heck even the maintenance guy. Dr Al-Akash was kind of at a loss as to why the infection came back as it should have been adequately covered by the two antibiotics he was on and the dosages were adequate as well, or so we all thought.

Logan was on dialysis 20 hours a day in the hospital since when there is an infection the peritoneal membrane doesn't function as well. This was really interesting and we made up all sorts of games for in the bed. Trying to keep a 15 month old in a bed for 20 hours a day is quite the task. It would have been 24 hours a day but Dr Al-Akash gave Logan 4 hours off a day for good behavior. During Logan's 4 hours off we ran him and ran him and ran him. It turns out that because Logan is such a great urinater, he needs a higher dosage of antibiotics than normal. With the increased dosage, the infection seems to have gone away completely. And Logan is still happy and running around with his 8 hours a day of freedom. 16 hours a day/night of dialysis does raise some challenges while still trying to homeschool Cristian and keep Jaden out of trouble, oh yeah, and trying to keep (get) this house in order. Thank you Fly Lady for helping me to get slightly more organized. Though I am definitely not even close to being all the way organized--you'll know if you've seen my house, I'm definitely on my way there. It was awesome coming home to clean bathrooms and a clean kitchen.

It is awesome to be home again! I missed my big boys a ton. It seems that they are a half foot taller since the last time I saw them. I also missed my bed so much! It's amazing how much your bed is an extension of you. And since my sweet Logan is kind enough to make sure that I change my sheets everyday--my bed is always so nice and fresh.

Well, there is much laundry to do and I don't see the maid anywhere so I guess I will get to it. The chore that never ends.

Before I forget, Driscoll has quite a few new dialysis patients and so if you could find it in your hearts to pray for them all that would be awesome. I don't know their names or anything but God knows who they are. Also, our friend Baby Finn will be going in for surgery to put a new central line in and he and his mama could really use some prayers as well.

Not Me Monday....

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

This week after the initial worry about our poor Logan I was NOT bummed to spend Mother's Day in the hospital, away from my other children. I was also not at all bummed that nothing was done for me for Mother's Day. I'm a bigger person than that. I also did not demand a regular hospital bed instead of crib so that the little one and I could get sleep. Of course my baby can sleep in a crib. I did not forgo a bit of sleep to get online. I did not run my baby boy for 4 hours during his time off the dialysis machine causing him to then sleep more than I've ever seen him sleep before.

I did not send my big boys over to my mom's so that I could clean house. When my mom came over the other night I did not let her do my huge pile of dishes.

At our new playgroup today I did not forget a mom I had met before and then remember a few minutes later that I knew her from an earlier meeting. I also didn't think to myself, "That's right!" and almost say it out loud.

Logan update

Well, we had quite the interesting Mother's Day. Around 4 in the morning Logan started shivering. At first I thought he was having a seizure but looking closer I realized it was just shivering. He didn't have a fever at the time but by an hour later he was feverish. I checked his drain bag at that time and it was completely clear and not even a hint of fibrin. We gave him so tylenol and he fell back asleep. When I woke up at 8 I checked his temperature again and it was decent and then went to check his drain bag and it was full of yuck. I sadly hugged the other two little ones and left to Corpus. Logan was happy as could be when we first got to the hospital. After two failed attempts at accessing his mediport, we got blood through his hand. We set him up on dialysis and he crashed for most of the evening. I can tell this infection was much worse than the last. It took a lot longer to heal up and he was retaining fluid because his dialysis wasn't working very well. It's working much better now but he still looks a bit bloated. Monday Dr Allen gave Logan a four hour reprieve off the machine and I ran him and ran him. He played so much and I took him for rides in the wagon. He had a blast! The resident said it was the first case of peritonitis he had seen and that no one would ever believe him that the patient was running around happy as could be. He slept so well that night and into the next morning. I don't think I've EVER seen him sleep that well. Tuesday Dr Al-Akash was back and Logan crawled over to him and gave him big smiles so he told Logan he was convinced and that Logan could go back home. The nurses all loved seeing him again since they've seen him grow since about 5 months old when his catheter was placed. Hopefully the next time we see them will be during transplant.

It's getting ever closer! It looks like he will be listed next month. He hit over 9.5 kg--9.5. But, alas, it was water weight and now he's back down to his normal weight of 9.28 kg. He just needs about a 1/2 lb to be activated.

Logan appears so healthy most of the time. Sometimes I forget how quickly that can all change. Hopefully he will be healthy for the rest of his time on dialysis.

Logan is on 15 hours of dialysis for now until his dialysis is working up to par again. It's so hard to get used to. I don't know how people do it who are on longer than that even. Well, I feel in the middle of the post but at this point I'm exhausted and I'm headed to bed. I hope all is well in your lives. Here's a pic of Logan in the hospital. Tomorrow I will post some pics of Logan playing in the hospital. He had an awesome time playing. What a trooper this boy is.

There was.....

There was an old woman,
Who lived in a shoe;
She had so many children,
She didn't know what to do.
She gave them some broth,
Without any bread;
She whipped them all soundly,

And sent them to bed.

Some days I really think the old woman knew what she was doing.

Welcome to the club...

Lately I find more and more friends and acquaintances whose children have become "special needs" recently. It seems no matter what the illness it grants you entrance into the club of parents of a special needs child. It's the club you never knew existed and you never wanted to be a part of. It's the club you are forever a member of. It's a comfort to be able to talk to other moms whose children are going through similar fights. It reminds me that I am not alone in this. It helps me to feel grateful for all that we DO have. So welcome to the club mamas. After the initial shock it's not so bad here. What gets you through the day is your beautiful child.

Nephrolgoy Update

Logan had his monthly nephrology appt yesterday. I was expecting bad news because he felt like hell and he woke up that night at 1 am and then tossed and turned and never did get back to sleep. Meaning mommy didn't get to sleep at all that night. But, surprisingly his labs were great! They were probably the best they've been since before he started dialysis. His potassium and phosphorous were in a perfect range. His protein and iron were up. His iron was actually almost in normal range again. His protein was the probably the highest it's ever been. His weight was up to 9.08 (a little over 20 lbs for the calculation challenged) (after 6 diarrhea dipes and 4 throw ups). AND Dr Al-Akash said that IF he was 9.5 kg at his next appt they would probably go ahead and activate him on the list and that the weight for a kidney would not be long at all. He said (I'm sure joking), "We'll probably call you on the way home."

I am soooooooooo excited as we've been waiting for this for what seems like forever (but really is only about 13 months). But, on the other hand, I'm scared to death too. Such a scary thing to hand your baby over to be cut open from nipples to groin. Logan's two hernia surgeries didn't bother me much. His placement of the feeding tube, dialysis cath, and mediport did--during and after but directly before it didn't. Of course, that could have been because I had basically NO time to process the info and with my grandma having past away the week before, I think I was just on auto pilot. During the surgery the clock NEVER moved or so it seemed to me anyway. Afterwards, I was so sad that he had to be cut so many places. Once in the neck and near his nipple and several spots in the abdomen. I gasped and my heart fell onto the floor when I first saw him. It hurt to look. But, now it just looks normal and when I hold other babies his age I am always careful not to pull on their feeding tube. Oh what? That's right, they don't have one! LOL. It feels more normal to hold Baby Matthew because at least he has the dialysis cath and it feels normal to me.

And speaking of babies....... I got to hold a little one this afternoon. I made a house call to help a mom with latch on and I got to hold her little one while she pumped to relieve engorgement. Byt the time I left baby was nursing much more comfortably than the piercing pain she was experiencing before. YAY! It made me feel great as lately I feel like I'm basically worthless to anyone. I feel kind of torn in so many directions that I feel like I'm not doing anyone right. And speaking of babies again. He was so adorable! He was squishy and smelt like a newborn. Ahhhh...... I swear if money and time were no object I would have 15 babies.

And onto Logan again, he is doing awesome (if you don't count the endless diarrhea and vomiting). He is running all over the place and he ate more by mouth today then I think he has some whole months--in fact, I'm sure. He had about 6 bites of vanilla yogurt, a strawberry, 2 bites of banana, and a whole bunch of tortilla chips. I know, tortilla chips are so unhealthy but for anyone who has a dialysis baby they will tell you that if you can get them to eat by mouth you will basically give them anything since it's almost a miracle.

Since we are basically down to the finish line, I asked Dr A if it would be better to wait on a live donor kidney or to give him a deceased donor kidney and he said it was my choice. So I asked him what his opinion on it was. And he said his opinion was that if we had a kidney available we should get it in him since life span directly correlates with kidney function. Logan's BUN is still high (it's been higher though) and his creatinine is 4.9. That's probably the highest it's ever been. Who knew we would long for the 2.0-3.0s we got in NICU? I needed to hear his opinion on this since I find him the expert on this at least much more so than I am. I trust him. Which is odd because I'm not normally quite as trusting of drs. He's almost more like family to us.

Well, I guess I had better head to bed as the past several days I haven't gotten much sleep. I hope all is well in the lives of those who read my blog.

Not me Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Well, this week I certainly did not do school with my oldest only three times. And even if I had done that, I definitely would not have given my son 75% for participation causing him to get a B in math. No way! Not me!

I did not let my laundry pile up because there have been mice sightings in the laundry room. And I definitely did not send my 8 year old into the laundry room in front of me before I got the diapers out, just in case. I also did not hide when my husband was not taking said mice out to the garbage. I am a big helper to my husband, not a fraidy cat.

I did not let the mac and cheese burn because I was chatting on Facebook. For one, I would never feed my children mac and cheese out of a box. And IF I did I would not let it burn.

I did not run my son's feeding tube extra long in order to get more calories in him.

I am right now not letting my children play a video game so that I can finish this post. Definitely not!

Feeling hopeful...

Logan is feeling much better. His ear infection seems to have healed and though he still has explosive poops, he's not throwing up as much. His weight is heading up and I love it when that happens. He was 9.12 kg (about 20 lbs 1 1/2 oz) this morning. So we're getting really close to the 10 kg mark and his nephrologist said we would talk about his transplant after he hit 9 kg. Well, we're there. I think we would probably like Logan to be closer to 9.5 kg or even closer to 10 kg but it's awesome to see that we're making progress. For so long we seemed to be at a stand still and I really felt like this time would never come. Logan was so frail for a while there and now he is running around and loving life. I can really see the will to live in him now and that makes me happier than anyone could ever know. When your child loses the will to live, it's a scary thing for a parent. I can honestly say it's happened a few times in Logan's life. Everyone says that I'm wrong. But, I'm his mother and I know that it's the truth. There were times when he would have been perfectly content to go on to heaven. Thankfully he is well past that point and is enjoying life. He is full of life. It is such a joy to see him running around and playing with his big brothers. They all have such an awesome time.

We have a nephrology appt on Tuesday. I'm really excited to go and show them how well Logan is walking and to hear more about us getting closer to transplant. Prayers for a donor would be awesome. We're getting very close to a deadline on finding a donor. I know that God has a plan though and I'm doing my best to go with the flow.