...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 11, 2008
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
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.
October 7, 2008
Pictures from Tonight
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!
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!
Thanks!
Beth
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!
Thanks!
Beth
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!
September 29, 2008
It wasn't a fluke
Shortly after restarting the dialysis yesterday, Max's scrotum swelled up again so they ordered another ultrasound to see if anything would show up this time. Again, the radiologist did not see a hernia or a hyrdocele so he feels that it is nothing that would require surgical repair. That is the positive, the negative is that we still have no idea what it is. The radiologist did say that the fluid is not in the scrotum itself, but in the tissue surrounding the scrotum. So, they did a blood test this morning to see if a particular level is low that would result in the tissue absorbing the fluid, but they didn't have the results back when I called to check on him today. They don't think that this is it due to the fact that he isn't swollen anywhere else on his body, but why not go ahead and rule it out I guess.
Leave it to Max to keep EVERYONE guessing on what is going on with him. It seems that everytime something goes wrong, it takes a week for the doctors to figure out what it is or it goes away and we never know what it was. It's so frustrating.
I'll keep you all posted as I get knew information.
Leave it to Max to keep EVERYONE guessing on what is going on with him. It seems that everytime something goes wrong, it takes a week for the doctors to figure out what it is or it goes away and we never know what it was. It's so frustrating.
I'll keep you all posted as I get knew information.
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