October 31, 2008

Surgery went well

Max came out of the surgery without any complications. He now has a catheter on the right side of his neck that comes out behind his ear. Unfortunately the surgeon couldn't get it to tunnel and come out where his clothes would have hidden it. He said that Max is just too small right now. Although it is not attractive and it kind of made me queasy to be honest, if it works I don't care where it comes out of. When I left Max was still very sedated from the anesthesia, but Tim hung back to be with him.

As far as the hemo dialysis goes, the nephrologist is very confident that it is going to work for him. When he said this to me I made him promise that it would work and surprisingly enough, he did. The plan at this point is to have him on it for about 2 months and reasses him. If he isn't doing as well as they would like on the hemo they can retry the peritoneal dialysis. If (and we are praying so very hard) he is doing great on the hemo, they will continue with it and remove the PD catheter that is in his belly. What this means is that when he comes home we will have to take him into the Dialysis Clinic 3-4 times a week where they will hook him up to a machine that will filter out his blood for 3-4 hours. Tim and I are looking at the positives of this whole ordeal and that is that once he is off the machine and we leave the hospital, that's it. We come home and he can crawl, play and roll over without getting tangled in his wires and tubes. *sigh of relief* We will be able to walk around our house without dragging an IV pole behind us. I know it seems like such a little thing to be excited about. You don't realize how much you miss out on until it's taken away from you.

Let's see... he is still on a high flow nasal cannula, but they are slowly weaning him off of it. They are going to put him over a continuous feed to see if it will help with the gagging, coughing and retching that he has been having. Umm... I think that is it. As soon as Max is feeling better and up to it they will do his first round of hemo dialysis. This could be as soon as tomorrow. We'll see.

I'll keep you all updated. Thank you so much for all of the prayers!

Please Pray!

I have to make this short and sweet because I need to get to the hospital. Max had a horrible day yesterday. An x-ray showed that Max had so much fluid surround his lungs that it was pushing his heart and lung over where they didn't belong. With that said they tried to needle his chest and only got 3mL of the fluid. Another x-ray right after that showed that the fluid was worse. So, Max had to get a chest tube put in to drain the fluid off. As of this morning 124mL of fluid (over 4 ounces) was drained.

Needless to say, nephrology has decided to put him on hemo dialysis. This means that Max is going in for his 6th surgery to have a different catheter placed in his neck or right under the clavical (sp?). I don't know many details about this dialysis, besides that it is very nasty. We are hoping that it is only temporary. 8-10 weeks of this will give his body time to heal from all of the leaks that he has into his lungs and scrotum.

I will keep everyone posted as I get more information. He is on the add on list for the surgery so it will probably be sometime later today. Please keep him in your prayers. As you all know, a simple surgery is NEVER simple when it comes to Max.

Thank you!

October 29, 2008

My evening thoughts

Update: Max had to go back on oxygen today do an increase of "wetness" around his lungs. We aren't sure what is causing the fluid buildup because the doctors make way too many changes all at one time. You would think they would learn from the first 10 times that they have done this. Despite my concerns, they decided to give him another dose of Lasiks to see if it will pull some of the excess fluid off. It didn't work the first two times they did it, so I am not expecting it to work this time around either. We'll see... I hope to be proven wrong!

My Thoughts: I am a blubbery mess right now because I feel like I just can't do this anymore. I am so tired of hearing bad news, I am tried of having to driving 30 minutes EVERYDAY just to see my son, I am tired of worrying about finances, I am tired of being tired, I am just tired of how our life is going right now. I am ready for things to start moving in the right direction and to STAY in that direction. I am willing to lay on the operating table tomorrow to give up my kidney if it meant that all of this would go away. When I don't feel like I can do it anymore, Max looks at me with his beautiful blue eyes and he gives me the strength that I need to make it through another day. I am so proud to say that my son is my hero.

Our friend Brett says is perfectly:


How about me and you get together some time? I would love to play toys with you. But I have to be honest, I have ulterior motives

I want to learn about how you get the courage to not shut down, to keep going in the face of impossible odds. I want to know how you overcame all that you did with "a smile on your face". I want to know how you were able to do what you did without anybody telling you how.

These are all things that everybody can do, we just sometimes don't do because we THINK we cannot or we don't think we should.

Thank you for showing us that life is worth all that it has to offer. And that the crosses that we bear in life can only make us stronger.

They say, "Actions speak louder than words". You haven't said anything yet and you have already taught me so much by your actions.

Can you show me more? I really want to learn.

I always wonder, why do things like this happen to innocent little babies who did nothing, absolutely nothing, to deserve any of it. Why is it that Max had to have a stupid flap of tissue block his urine output that caused him to have tiny lungs and two kidneys that don't function properly. I look at all of the babies laying in the NICU helpless and I just cry. I cry for them and for their families. My heart aches when I see a new admit come in and I see their mommy and daddy standing back while the nurses hook their brand new baby up to a thousand machines and a crowd of doctors come in and surround the isolette to exam what is going on. The look on a parents face standing in the background is forever etched into my memory- the look of fear, worry, heartache all rolled into one. No one truly knows what it's like until they live it, and I wouldn't wish living this on my worst enemy.

I was watching Oprah yesterday and this particular show was about children that defied the odds and survived life threatening diseases. There was one family that was told that their little boy Eliot wouldn't survive past day one due to his disease. His parents knew that it was going to be for a short period of time, but they look him home on oxygen and with a feeding tube. Eliot lived for 99 days before God decided that it was his time to join Him in Heaven. Eliot's mom always told herself that she would be sad later, that she had to enjoy the time that she had with her only son. What she said has inspired me to live for what we were given. Max is a miracle in itself and we have to remind ourselves that we are truly blessed that he is even here with us today. The odds were very much against him, but he fought and stood strong. His mission is far from over and he inspires me to be sad later- to live my life to the fullest and to love the hand that I was dealt. Go to http://www.oprah.com/media/20081001_tows_99balloons and watch the inspiring video that Eliot's mother and father created for him. Eliot and Max should be inspirations to us all for their willpower and strength to survive- whether it be for 99 days or 99 years!

October 23, 2008

Max continues to do a little better everyday. Yesterdays x-ray looked slightly better than the one before so that's good. He ended up spiking another fever yesterday, so they drew another round of cultures from everywhere and started him on an antibiotic. Finally, after Tim and I have been saying it for a week now, they think he might have pneumonia. So that's what they are treating him for. It's so freaking frustrating to not have anyone listen to what you have to say!!! But they are going to do a 7 day antibiotic and hopefully it will nip whatever it is in the butt.

Dialysis continues to go well. They started mixing the dextrose in his solution because everyone was finally on the same page and agreed that they were dehydrating him. He seems to be doing better with this and he is still having positive outputs. Which means he isn't holding onto any extra fluid that he shouldn't be.

They have tried to wean him from his 28% oxygen to room air and he doesn't tolerate it too well. His sats drop into the 80s and we are not comfortable with that. His nurse today said that he slept from 9:30pm to 6:00am last night and that was followed by a 4+ hour nap late yesterday afternoon. He is awake and smiling and talking up a storm. This is also new for him. He has talked a little bit, but now he really talks. You say something to him and he "answers" right back. It's like he knows exactly what you are asking him and he has the right answer. So stinkin cute!

We have a few prayer requests if you wouldn't mind:

My Uncle Dick had to have quadruple bypass surgery plus another emergency surgery to remove a blood clot. He is on the ventilator, has chest tubes and his kidneys shut down so he too is now on dialysis (which is hopefully temporary). Please keep him in your prayers along with Aunt Dianne and their children, that they continue to have the strength that they need to get through this rough time.

Tim's sister also got put into the hospital this week for severe abdominal pains. She ended up having gall stones and had to have her gall bladder taken out yesterday. Please pray that she has a quick and easy recovery and is back up on her feet very soon.

I also juat got news that a friend of ours father was just diagnosed with pancreatic cancer. He will be undergoing surgery and chemo shortly. They think that it's just on his pancreas at this point, so that is reassuring. Please pray that the surgery goes well and that the chemo kicks the cancer in the butt and that he recovers quickly.

We also just got news this week that my cousin Chris and his wife, Jessica are expecting in June 2009. Please keep them in your prayers that they have a happy and healthy pregnancy.

Also keep little Miss Avah who was Max's neighbor in the F Pod of the RCNIC. She got transferred to the trach unit this week. Pray that she continues to grow stronger everyday and that she will soon get to join her family at home.

Also for Miss Carmen who was also Max's neighbor in the F Pod. She was born with her intestines on the outside of her little body and they are finally starting to talk about her going home soon. Please pray that it's a easy transition for her family and that they get to enjoy every moment with her outside the walls of the RCNIC.

Thank you everyone for all of your love and support. We'll keep you posted!

October 21, 2008

Max is doing better. The x-ray that they did yesterday was worse than the one they did on Saturday, but he seems to be breathing a little better than he has been. He is still on the nasal cannula but they are slowly starting to wean him off of it. They did an echocardiogram today and it came back normal. He also spiked a temp this morning so they took cultures and those have also come back negative. They stopped his Lasiks dosage because of the long term effects it can have on hearing. His nephrologist said that he didn't feel it was doing much anyway.

They still have him on the highest dextrose dialysis solution they have and it seems to be doing the trick to some degree. They pulled over 400 mL off of him just from his dialysis yesterday, so hopefully that helped. They will most likely decrease the dextrose of his dialysis solution tomorrow.

They will also be doing a repeat x-ray tomorrow... keep your fingers crossed that this one is better than the last. His heart rate is still in the 180's-200's when he is awake but goes down to the 150's-160's when he is sleeping. His mouth is VERY dry so I am starting to think that they may be pulling off too much fluid- which would increase his heart rate.

No one is really sure why this happened, but at least his heart and any infections have been ruled out. It has been a very crappy weekend and week so far, but it's definitely good to see him feeling a little better. I will feel much better when he stops pulling and tugging every time he takes a breath and when his x-ray starts to clear up.

One good thing that he started doing while he's been in the hospital is suck on a green lollipop looking sponge. His nurses have been dipping it in sterile water or breastmilk and he goes to town on it. Also another reason why I think he is starting to get a little too dry. This is very encouraging though since he hasn't had any interest in sucking on a pacifier or bottle in a very long time.

I'll keep you all posted!

October 19, 2008

I am making this very short because Tim and I are both scared out of our minds and mentally and physically exhausted. And frankly I don't feel like going into full details tonight.

Max isn't doing as well as we would like. They are giving him some oxygen with the nasal cannula to help him with this oxygen saturation levels. The xray that they took yesterday morning was a little worse than the one on Friday morning. He is pulling and tugging VERY hard and it gets him very upset and frustrated that he can't breath without struggling. Umm... They are trying a higher concentration on his dialysis solution, but it didn't seem to do the trick as of yesterday or today so now they are trying something called Lasiks. This is a drug that helps pull excess fluid off of the body. Bad thing is that this drug isn't as effective with people who have kidney failure, so they flat out said they are not thinking that it's going to work. Needless to say, we have no idea why he is holding onto so much fluid and we have no idea what the next step will be to get it off.

Our biggest fear is that Max will give up on trying to breath. We will talk to his main nephrologist tomorrow to see what his thoughts are. I am hoping they will do another xray to see how it looks. PLEASE PLEASE PLEASE keep him in your prayers. He is really struggling and right now he just needs all the prayers he can get.

I'll keep you posted.

October 17, 2008

Max was admitted back in the hospital yesterday. He had an increased work of breathing all week and the doctors told me to keep an eye on it. Thursday morning I noticed it was getting worse so when we went in to the office I asked for a chest x-ray. It showed that he was holding onto a lot of fluid that was in the vessels and it was putting some strain on his heart. The actual fluid around his lungs was very small. So the doctors thought that it would be best if they kept him to be able to monitor him and work on pulling the excess fluid off.

Luckily, he was able to go back to the RCNIC, so he has the nurses that know him best. It's pretty sad though that when you walk into an ICU setting everyone knows your name. Max was very sleepy when we went up to be admitted, but as soon as we walk in and all the familiar faces came to see him, he just laughed and smiled like it was no big deal! It's like he was saying...."I'm back!!!" Such a booger!

The doctors are hoping that this is a very short stay. As long as they can get the fluid off and get his breathing back to a normal pace, he should be good to go. I am just very thankful for the education that we got while we were in the RCNIC the first time. Some people would not have thought twice about something like this. I am just glad that we got that x-ray and we caught it before something really bad happened.

Needless to say, Max gets to spend a few extra days with all of his girlfriends at Children's, which they all love!!!

Please, keep him in your prayers that all goes well and that he is back home with us in a few days. I told his nephrology fellow Ben, that he has to be home for his mommy's birthday on Monday! Keeping my fingers crossed!

October 14, 2008

New pictures...

...of Max at home!

October 11, 2008


...sorry for the long delay in between posts :o) Well let me start by saying that Max's first three days at home have been WONDERFUL! When we have time to just stop and take it all in we realize that we would not trade any of this in for the world. We are extremely busy with trying to get organized, clean (still haven't gotten that carpet scrubbed yet), do dialysis, feed him, give him his meds, and most importantly love and enjoy every minute of him! I love being a mommy :o) It truly is the best feeling in the world.

Max had a doctor's (nephrology) appointment yesterday. Everything looks great! We don't know the results of his blood work yet, but we're not too concerned. Everything with the dialysis has been going pretty well. When we got there they told us that some of his nurses from the RCNIC had already been down looking for him, so they had to page them when we got there. They said that he looks bigger already!

Tim and I also did a first last night when we packed him and his dialysis supplies up and went back to the hospital to see some of his night nurses that didn't get to see him before we left. It really wasn't that bad. We'll definitely do it again. We got a pretty good system down with how we hang it all on his stroller! Tim and his creativity got us there :o)

I think that is it. Max is finally catching up on his naps today. He is one very happy little boy and is doing great! We are thrilled to have him here with us- all under the same roof!

October 9, 2008

I told you that I wouldn't post anything until he was in our living room, and well he is in our living room! Well he is actually sleeping his is very own bed right now. I got a phone call this morning saying that Thursday or Monday was going to be the big day, then I got another phone call about an hour later. Three of Max's nurses and his discharge coordinator had me on speaker phone announcing that he was actually coming home today!!! Talk about a moment of panic. My main concern, for some reason, was that I hadn't steamed cleaned our carpet yet. Oh well, we'll do that later. I ran around here like a chicken with my head cut off trying to figure out what last minutes things I needed and to make phone calls. Then I headed off for my last visit to Children's Hospital- had to make a last minute stop to Wal-Mart to pick up a timer though.

The day was totally hectic. We had the home care nurse in his room showing us how to use his feeding pump (we will be using this for feedings throughout the night so that we don't have to wake up to feed him every 3 hours.) We also had nephrology giving us last minute directions and to make sure that we were good to go plus the nutritionist on top of that. The discharge coordinator and tons of nurses were in and out all afternoon until we left as well. It was a HUGE party in B9 for a few hours! So much fun and so many memories!

149 days! That's how long Max was in the hospital. It was the most trying time of our lives, but the most exciting and memorable time as well. Max has overcome so much in his short 5 months of life- more than what most of us will ever experience in a lifetime. He is truly my hero and I look up to him for the strength that he has and for all that he has endured (with a smile on his beautiful face.)

I also have to take this time to thank EVERYONE that has helped us get through this time. We couldn't have done any of this without our family, friends and newly acquired acquaintances. The love, support and prayers that you all provided to us has gotten us to where we are today.

The most important group of people that I need to thank (and bow down to) are our doctors and nurses. Ladies, you all are our angels here on earth. You will never know how grateful Tim, Max and I are that you were brought into our lives. For 5 months you were Max's adoptive mommies and we are so thankful that you were there to care for him and to love him when we couldn't be. Max will grow up knowing who each and every one of you are and the impact that you have made on our lives. I don't know what I am going to do not being able to see you all everyday. Believe it or not this is hard on us as well. October 8, 2008 was a very bittersweet day. We got to finally bring our sweet little boy home, but we also had to say goodbye to our hospital family and friends. I did tell some of you though that this is not goodbye, it's see you later. We will most definitely be keeping in touch and we will see some of you on Friday and Monday when we're there for his follow up appointments. We love all of you ladies and please know that we thank you from the bottom of our hearts for taking the best care of Max and for making a huge impact on us. You all will forever hold a very special place in our hearts.

To all of our primary nurses:
Aimie H.
Tanya B.
Tonya F.
Amy S.
Lori T.
Kelli W.
Allyson V.
Liliana P.
Chenelle M.
Tina L.
Sara B.
Reanna S.

These ladies have gone out of their way to take an extra class on how to do Max's dialysis. Some of them our going even further beyond their call of duty to take on the challenging tasks of becoming Max's home care nurse on top of their jobs at the hospital. Do you all see why we love these ladies so much! Here is to the best group of primary nurses a person could ask for.

First trip to load the car!

A handful of Max's primary nurses

Max wasn't a happy camper to be strapped into his carseat

Max looked out the window the whole car ride home

Meeting his doggies for the very first time

Our precious angel is home and asleep in his very own bed

October 7, 2008

Pictures from Tonight

Daddy's favorite tee shirt

Max is grabbing at his new toys! Yah!!!

All tuckered out from a hard day of playing
Okay.... we are switched over to a manual setup for the dialysis and Max's numbers have dropped tremendously. One went from 60 something to 20 something- that's HUGE! He is in a much happier mood and feels a lot better since they made the switch.

Only one VERY minor problem... we are fighting the insurance company to pay for the supplies that go with the manual setup. It's $2,500 a month and well, unless we win the lottery sometime VERY soon, we can't afford that. The doctors and discharge coordinator are working on this. Hopefully, we will have an answer within the next couple of days. They are also working on getting the nursing care situated. We'll see what happens with all of this.

Ummm let's see. Something very cute that Max did the other day: Max was laying in his bed and his nurse said that he was getting pretty sleepy. She said that he rolled his torso over grabbed his blankie and pulled it up towards his face and fell asleep. Now how stinkin' cute is that? Pretty stinkin' cute if you ask his mommy!

I think that is it everyone! I'll keep you all posted on the insurance ordeal!

October 3, 2008

Tastefully Simple Fundraiser

Ladies- Another one of my fellow message board mommies has done it again! She sells Tastefully Simple and and has offered to donate her earnings from her sales through November 30 to Max.

Here are the "Guidelines" for ordering Tastefully Simple from her:

1. You can shop online, or you can request a catalog from me, I would be more than happy to mail them out!

2. If you shop online, the credit they receive is 25%, if you host a party it is 25% + your hostess credit (10%) = 35%

3. If you are ordering online, please use "Max KYBride" as the Hostess so I know to allot the appropriate credit

4. If you need samples of anything, or if you want to take some samples to work, family functions, etc (our samples make one full size serving of everything) let me know and I can get those mailed out to you right away.

5. If you would like to order gift packages, or if you are interested in buying gift cards for your company or as christmas gifts, they can be personalized and Max will still get credit

6. The fundraiser will last thru November 30th, unless it is kicking butt, in which case I will extend it indefinitely to help out as much as possible!

If you have any questions, feel free to call or email me. My cell phone number is on my website and my email address is tsbylindsay@hotmail.com

Lindsay A Searing
Independent Consultant
www.tastefullysimple.com/web/lsearing - shop online!!!

Thank you ladies! Again, we are very thankful for all that you have done for us and for Max! There is nothing that we can do that will thank you all enough!

Any questions, let me know!


October 1, 2008

Let's start with saying that Max is doing great! His scrotum is still very swollen, but the doctors are thinking that surgery is not the route to go. They have done 4 ultrasounds now, I think. All four of them haven't shown neither a hydrocele or a hernia, BUT the urologists, surgeons, and nephrologists believe that there is a small communicating hyrdocele somewhere. Either that or a leak in the actual peritoneal membrane. They can put a dye into his dialysis fluid and do a CT scan while he is filling to find out where the hole is , but I don't know if they are planning on doing this or not. I know that all of this seems so scattered brained, but honestly everyone of the doctors that I have talked to over the last 5 days has been totally scattered brained since no one seems to know exactly what is going on.

The surgeon came up last night and explained to us that the membrane is sort of like skin, so a pretty thin layer. If they go in and try to sew the hole, they are actually risking more harm than good since they would actually be putting more little holes around the main hole. Make sense? So, I think from what I got out of what everyone has told me is that for right now we are just keeping an eye on it.

Here is a funny for you. They want us to ball up a bunch of gauze pads and elevate his scrotum so that "gravity" helps push the fluid back into the belly area. Let me tell you that this really just makes for a good laugh, because it doesn't work. Max would need to be left laying totally flat in his bed at all times. Meaning that we wouldn't be able to hold him. Also keep in mind that whenever Max is laid flat, his lungs fill up with fluid. He has been elevated in his bed for as long as I can remember. So, the nurses are doing it to make the doctors happy :o)

The nephrology team came in today to let me know that Max was going to be in the hospital for a very long time (months) since they can't get him on the cycler successfully (right now he will have to be on the manual setup). So I asked them if they meant until his transplant. The nephrologist didn't want to admit this, but he couldn't say no either. His hesitant response was, "I wouldn't say for that long." ANYWAY, as my eyes filled with tears his wonderful nurse, Tanya, jumped in to argue. So, very long story short, they said that if we can get home nursing care for 5 days a week for 12-16 hours a day they would agree to it. They also said that as long as we had a good support system at home, that they would agree. Their main concern is that I would go insane being in the house 24 hours a day, 7 days a week having to fill and drain Max every hour around the clock. So we got the discharge coordinator and told her the scoop. She will be working on getting this arranged tomorrow. His dialysis nurse is also on the prowl of getting some training classes set up so that we can learn how to do the manual PD :o) Don't tell anyone that I said this, but even a caveman can do it! So, if you got my gist, I WILL NOT ALLOW Max to stay in that hospital room until he is 12-15 months old. My son is not learning to crawl at Children's Hospital. I will not let it happen.

I'll keep you all posted! Enjoy the rest of your work week!