June 27, 2010

It's been a terrible, horrible, no good, very bad week

I really don't even know where to start to explain to all of you how absolutely terrible the past week has been. Last Friday, Max underwent his 13th surgery to replace his catheter. He spent the night in the hospital and was released on Saturday evening. Saturday night's treatment went okay. He had a lot of alarms, but we made it through the entire 12 hours. Sunday night was a totally different story. I couldn't get him past his second drain, so I ended up having to end his therapy very early. Same thing happened Monday night. So on Tuesday we made a trip to Children's Hospital. They put TPA in his line and it seemed to be helping, so we headed home. To our disappointment, the treatment ended the same as the two previous nights. We headed back to Children's on Wednesday morning and there we stayed. They did another dose of TPA and the catheter drained beautifully. We hooked him back up to his dialysis that night and couldn't get him past the second drain again. We ended the therapy early for the forth night in a row. Everyone, except for me, was ready to send Max back to the OR. I asked the doctors if we could try one more thing and they all agreed. It worked! They did a 6 hour run Thursday morning while we were at the hospital, and it went beautifully. We got discharged Thursday evening. When we got home, we hooked Max up to his dialysis, and you wouldn't believe it, but it did not work. I had to end his therapy after the second cycle for the fifth day in a row. I didn't give up hope just yet. I was trying to figure out what was different from the treatment in the hospital vs the treatment at home. Everything was the same, except for one thing. Max was awake at the hospital and asleep at home. So on Friday morning, I called the PD nurse like I was instructed to do and told her that I wanted to try one more thing. If it didn't work, I would bring Max right in. Everyone agreed, so I started my little experiment. I hooked Max back up to his dialysis while he was awake and moving around. Wouldn't you know, the dialysis actually worked. For 12 straight hours, the machine put fluid into Max's belly, dwelled it for an hour and drained him perfectly. Thank God!

So since Friday, Max has been hanging out in his room attached to a four foot leash. He has done remarkably well. Today we decided to bring his machine down to the living room so that he could hang out downstairs with everyone. Things were going perfectly. Max was hopping all over the place and ended up getting himself wrapped around his machine. When we went to unwrap him, we didn't see that the tubing was pinned under the machine, so when we picked him up, his catheter got yanked out of his belly. Max started screaming, fluid starting flowing from the exit site and I panicked. I ran outside to get Tim and then I rushed to call the fellow on call, that thankfully ended up being Dr. Ben. I was running around while on hold packing our bags and trying to get everything that we would need during our stay at the hospital. I finally got a hold of Dr. Ben and he told me to keep sterile gauze on it to catch the drainage. Tim was already on that, so I asked what else we needed to do. He told me that he was going to call the attending to see if we needed to come in and if we needed to start antibiotics. Ben called me right back telling me that Dr. D wasn't too worried about infection and that we didn't need to come in. I was blown away. I thought for sure that we had just landed ourselves into the hospital for the next few days. We spared our Sunday evening in the hospital, but we will be going in tomorrow morning for Max's 14th surgery.

We are due to arrive at CCHMC at 6:45am to get Max admitted. From there we will head to our room, answer 1000's of questions that I have answered over and over again, get Max's labs drawn, an IV put in and fluids started. We will then start the dreaded wait of when Max will be called to the OR to have his catheter replaced. It could be anywhere from 9am to 9pm. We are considered an add on, so they will fit us in when there is an opening.

And that ladies and gentlemen is what we call a terrible, horrible, no good, very, very bad week.

Hope all of yours was better.

June 22, 2010


I don't feel like "done" is a strong enough word to describe how I feel at this point. I am no longer pushing for transplant because it's a convenience to us, I am pushing for transplant to save my son's life. Dialysis is not working anymore. I don't know what else to say to get everyone on board with the transplant.

We spent almost 5 hours at the hospital today. Max had labs drawn, a 300mL flush that only drained 150mL, an xray to check catheter placement, TPA dwell, another 300mL flush that drained 250mL and another TPA dose put into his catheter. Everyone thought that this was it. It was going to work. I, on the other hand, wasn't so confident. I was right. We got home and let Max have some time off of that God forsaken machine. After I woke up from my nap, we started the process of hooking him back up. The next 38 minutes of dwell time seemed like an eternity. My stomach was in my throat. Something was telling me that this was not going to go well. 7 minutes before he was suppose to drain, I told God that this was His time to gain my faith back. He didn't. Four alarms went by and we had to bypass the drain. Negative 56. Dwell two came and went. Alarm after alarm. Negative 152. I finally called the fellow on call and I have to say that I was not happy when I got off the phone with her. I felt like she was telling me that she didn't feel like dealing with it tonight. She told me to go ahead and end his therapy, give him a dose of Kayexalate and call them in the morning.

I hung up the phone, walked upstairs into Max's room and lost it. I sobbed over my sleeping little boy for a good 30 minutes before I went to the floor and sobbed for another 30 minutes. I am scared. This is not funny anymore. The game is over. It's time to move forward. Max's body is obviously telling us that it's done as well.

I feel that the only thing holding us back from transplanting is that it's not convenient for the surgeons. Well, it's not convenient for me either, but I do it. I do it because I have to. It's not convenient for me to stop everything I am doing so that I can hook my son up to a machine. A machine that keeps him alive for another day. It's not convenient for me to have to take him to have a needle shoved into his arm every month. It's not convenient for me to have to hand him over to the surgeons for the 13th time. It's not convenient to have to change his clothes 3 times a day because his g-tube is leaking or because we can't find a diaper that will cover his vesicostomy. Life is not convenient for me either, but I do it.

But for now, I am DONE.
I apologize for not updating sooner. It has not been a good 4 days since surgery. Dialysis isn't going well to say the least. We are not sure if it's the catheter, the low volume that Max is on, or fibrin blocking the catheter.

Needless to say, we are frustrated, exhausted and done with dialysis. I don't have the strength to do this anymore. Max has only had one good night of dialysis since Friday. We have had to end his therapys early because of all of the alarms. I only have one more idea and that is to move the transplant up. Max can't keep missing full dialysis treatments. We are going in for labs today to see how bad they have gotten over the past 4 days. They didn't look great going into surgery, so I am very worried about what they are now.

I could rant and rave about how I am feeling right now, but I won't. We'll just keep it at this: I am on the verge of tears all day every day, I am exhausted, I hate dialysis, my faith is gone, and I am scared for my child's life.

Please pray. I don't have the strength to do so anymore.

June 18, 2010


Everything with the surgery went well. The culprit was not anything on the end of the catheter, it was simply that Max has outgrown it. The catheter has been in place for two years now, so it makes sense. *Cheers to Dr. Lim for putting in a catheter that lasted so long*

Dr. Alonso ended up removing the old catheter and placing a new one. It's on the side where is g-tube is so it's a little crowded, but it will work. My only concern is going to be dressing changes with a leaky g-tube, but we will figure it out just like we have figured everything else out.

Max had the worst episode of breath holding that he has ever had. Once we got back to his room from the PACU, I pick him up from the gurney and he immediately started screaming. I quickly laid him in his crib and he started holding his breath. His eyes were huge and I immediately felt horrible because I knew that I hurt him. He held his breath to the point that his oxygen saturation drop to the high teens. They are suppose to be in the mid to upper 90's. He was as white as your computer screen. Naturally everyone, including Tim and I started panicking. Max ended up passing out on us 3 times. I was yelling at him to wake up, one nurse was trying to get his leads hooked up and the other one was shoving an oxygen mask on him. Someone in the hall was yelling for the resident and on the phone calling someone else. After a few minutes of this I finally stepped back into reality and realized that he was no longer pissed because he was in pain, he was pissed because they kept shoving the mask in his face. He hates that mask. I mentioned it a couple of times and no one really listened so I finally raised my tone a little and stopped the nurse in midair from putting it back on him. I calmly told her to not put it back on him. I asked if we could see what he did with just the nasal cannula and everyone agreed. Max immediately started calming down and within a minute or so his sats were back in the 90s. I feel terrible now on how I reacted to the nurse, but I had to do something because they were calling in the respiratory team and I was afraid they would intubate him. I totally understand why she was doing it and I told her that afterwards, but there is a time when you have to step back to figure out why the child is screaming. I did that and thankfully it worked. It was by far the scariest thing that I have experienced so far in this journey and I never want to experience it again.

Max was doing very well when I left this evening. He was living the life watching Barney and having his daddy drop water into his mouth from a straw. He was perking up and looking a lot better. The plan is to let him relax and heal for tonight and we will connect him to his dialysis for a few hours tomorrow to make sure there are no leaks. If all goes well, we will be home tomorrow afternoon.

As far as how Tim and I are doing- we are exhausted. Tim worked from 7am Thursday morning until 8am this morning. He only got an hour of sleep before I woke him up telling him that we were heading to the hospital and probably into surgery. Needless to say he took a 2 hour nap once we got situated into our room.

My exhaustion has finally caught up to me. I have been tired every day for the past month, but have kept going because I had to. I had a little man to take care of, but tonight, well tonight Max is in the fantastic hands of his nurse and daddy which means that I will have an uninterrupted night of sleep for the first time in a very long time. With that said...

Goodnight ladies and gentlemen. I will update tomorrow to let you all know how Max is doing.

Thank you for the prayers. They are greatly appreciated.

Weekend Getaway

Tim, Max and I decided to spend the weekend at our second home in beautiful Avondale, OH at the last minute this morning. What this really means is that Max has been admitted to CCHMC and is scheduled to have surgery sometime this afternoon/evening.

Max woke up huffing and puffing this morning. I was very uncomfortable with it so I contacted Dr. Ben who told us to come on in. I went ahead and told him to get us a room because I knew Max wouldn't be coming back home tonight with the way thngs were going. Long story short, we are waiting in our room on A7 Central for Max's turn to go to the OR to take a look at his catheter. There is a chance they will have to replace it, but they will take a look first to see if there is omentum clinging to the end of the catheter.

Our guess is that he will be in house until the end of the weekend at least. If the surgery goes well and he tolerates dialysis we will be out of here sooner rather than later.

Please continue to keep Max in your prayers. I will update as soon as I get the chance. If you are on Facebook, I am doing updates there more frequently since I can do them on my phone.

Have a great weekend everyone!

39 Days

We are officially in the 30's as of 3 minutes ago. I have been getting asked a lot lately how I am doing with the surgery coming up and my first response is that I am very excited and that I can't wait. To be honest, I would be thrilled if the doctors decided that instead of taking a look at Max's dialysis catheter on Tuesday they would just transplant him. I will not be a happy mama if they have to replace this catheter when we are only 39 days from transplant. It's so frustrating that we are so close and now his catheter decides to stop working.

Have I mentioned how much I dislike dialysis? We have had a good run at it for the past two years, but I think Max's little body is telling us that it's ready for a new kidney. It's been a very long and bumpy journey, but I am not disappointed in the least bit to be finished with it. The day that I pack up the cycler to send it back will be a day to celebrate. It will be very tempting to not have a big ceremony on the Purple People Bridge as we drop that machine into the Ohio River. I don't think the insurance company would like that too much, but man would it feel good.

The past month has been the most exhausting month of my life. I don't function well anymore. I find myself wanting to do nothing but lay on the couch while Max plays on the floor beside me. I have a list of things I want to do before transplant, but don't have the energy to do any of it. We are trying very hard to get out and enjoy ourselves before we dive head first into what will be the craziest month of our lives, but it's hard. This is where I am going to get into the part where I say that I feel so bad for Max because he can't do what a typical 2 year old does. My 2 year old doesn't talk or walk. While everyone else is out enjoying their summer we are very limited because of Max's inability to get around. Max is stuck in a stroller because he doesn't have the strength to walk. He weighs 28 pounds, so it's not like we can hold him all the time. He doesn't know that he needs to hold on while we carry him, so we carry 28 pounds of dead weight. Needless to say, that only last a few minutes before our arms are shaking and we need to put him back into his stroller. It's not fair to Max. He gets so frustrated because of his limitations. You can tell that he wants to do it so badly, but can't. I want to take Max to the aquarium but they don't allow strollers. What kind of attraction doesn't allow strollers into their facility? There is no way in hell that we could carry him through the entire aquarium. He won't be able to do this for quite some time post transplant because of his immune system- or lack thereof.

So to answer your question, how am I doing with the surgery coming up? I am thrilled to be able to move on with our lives. I am finished with dialysis and dream about the day that it's all out of my house. I can't wait for Max to be able to live a "normal" life like all the other 2 year olds out there. I want to sleep through the night again. For everyone that says it's like having a newborn- it's worse. I can't pick up the cycler, feed it and rock it back to sleep. Nope, it just keeps yelling at me telling me that the little boy it's attached to isn't draining. Not only is the cycler beeping at me, the oxygen saturation monitor is beeping at me as well. It's actually beeping at this very moment because Max is laying in his bed gagging so badly that he can't keep his sats up at the minimum of 90%. Oh the sounds of End Stage Renal Disease.

Anyone want to trade me places for a day?

39 days...

June 16, 2010

Surgery #13

Well we almost made it to transplant without another hospital stay and surgery added to Max's very large medical record.

Max will be undergoing surgery yet again on Tuesday morning (June 22nd) to see what's causing his dialysis issues. He hasn't been draining well for about a month now. The only thing that we can think that could be causing the draining problem is that there is something wrapped on the end of the catheter that is blocking the fluid from draining. So, that explains why he is going into surgery.

I have to admit that I am kind of relieved that this is where we are going with this. As much as I hate that Max will have to undergo anesthesia yet again, it's a relief that we may be able to get a good nights sleep again. I don't remember the last time I slept through the night. I even woke up in the middle of the night while Tim and I were in New Jersey over the weekend. Habit I guess.

You read that correctly. Tim and I made the 10 hour drive to New Jersey this past weekend for Tim's brother's wedding. It was a Max free weekend, but I think I spent more time on the phone with doctors, nurses and my mom than I did enjoying myself. Don't get me wrong, I did have a good time. The wedding was beautiful and I didn't fall walking up the stairs to do my reading and the reception was a blast (thank you Amaretto and Coke)! We did have a good time but it was nice to get home so that we could take care of Max and the issues that he was having.

Anyway, if you could please keep Max in your prayers that this surgery goes well. I am also asking for you to keep Tim and I in your prayers. I am to my breaking point and don't feel like I can do this anymore. Please pray for our strength and that we make it to transplant without anymore hurdles to jump over.

June 2, 2010

54 Days

So I have had a loss of inspiration here the past few weeks, if you couldn't tell by my lack of posts. I am still not to the point of really knowing what I should write about tonight, but I felt it was time to post something so that all of you fantastic people know that we are all doing well. We have had a month of ups and downs here in our family.

I will start with the one that needs the most prayers. My cousin Theresa went to the doctor at the end of April for some headaches that she had been having. Her doctor sent her for an MRI and they found a tumor behind her right ear. The tumor is in the dominant hemisphere of her brain- where her speech function is located. Theresa has another MRI on June 10 and she will then followup with the neurosurgeon to see what the next step will be. The biggest concern is whether doing a biopsy and/or removing it will affect her speech. So I am asking all of you prayer warriors out there to please pray for Theresa and her family. If you could also pass this request on to those that could send up an extra prayer, I know that Theresa would appreciate it.

Another request is for my Aunt Michaelle. She recently had a heart attack and is still gaining her strength and endurance back. If you could please keep her in your prayers as she begins a new and healthy lifestyle.

Okay, I think that is it for the not so good news going on in our lives. Unless you want to consider the love/hate relationship that I have with dialysis right now. The only love part of this whole thing is that it's keeping my son alive. Oh should I get into why I hate dialysis? I think I should, because I need to vent about it. I know that no one out there will fully understand my frustration, but here it goes. If I hear one more beep, beep, beep in the middle of the night I think I might go insane. No wait. I know that I will go insane. Oh how I dislike the "cycler." Her and I are going to have a big old fight once Max gets his new kidney. To sum this up in a nut shell, Max isn' draining well at all. All of you other dialysis baby mama's out there know what I am talking about. We are ending up with negative UF's- which means that Max is holding onto the fluid that we are putting into his belly. This also means that Max gets short of breath a lot easier than when he drains well. This is what caused him to be hospitalized back in April. The only thing saving Max from respiratory distress is the heat. If he isn't breathing too well, we take him outside to sweat the extra fluid off. It works way better than sitting in a hospital room with machines beeping at us all day. The other bad thing is that I haven't had a solid night's sleep in about a month. I have slept on Max's bedroom floor a couple of nights just so that I didn't have to walk from one room to the other. Needless to say, I am exhausted. The only thing keeping me going is that we are down to less than 2 months before all of this is behind us.

Speaking of the transplant, I cannot wait!!! I am not nervous, I am not scared, I am ready. I am going to skip down the hallway of the same day surgery area at 5:30 in the morning on Tuesday, July 27th. I will sit there with my arm held out while my IV is administered with a big smile on my face. I will put my hospital gown and cute little surgery hat on with pride. Because in 54 days, I get to save my son's life, again. I get to give my son a chance at a life that he has yet to experience as a 2 year old. He and I will proudly show off our battle wounds. Our proof that miracles happen and that he is one of them. On that day, nothing else will matter. The world as we know it will stop. I will hug and kiss my husband and son goodbye as I am wheeled into the OR. I will lay on that table with pride as I quickly fall to sleep.

I try to picture what it will be like in the recovery room. Will my kidney already be pumping urine out of my little boy's body by the time I wake up? Will we know right away if everything is looking good? Who will be there with me when I wake up? How long after I go to my room will Max still be in surgery? The unknown answers to all of my questions. It is up to God now. I am finished worrying about the unknowns. We won't know until we try. God knows what will happen and I am at peace with Him knowing and not telling me. We are in God's hands and He will pull us through this. Max and I will survive and we will be better people because of it.

In 54 days, there will be no more dialysis, no more monthly deliveries of 16 boxes of fluid, cassettes and drainage bags. No more cycler- which means no more beeping in the middle of the night. No more dressing changes. In 54 days, Max will be free.

54 days is coming very quickly.