Okay all of you prayer warriors, we need your assistance. One of Max's dialysis buddies came into the unit today for a treatment, but instead found out that he was getting his new kidney instead!!! His foster family had no idea. It was such an emotional experience for all us that were here to experience it. Willie is mentally handicap so he didn't have any idea what was going on or what was being said to him, but he knew something was different. He strolled out of the unit flashing his beautiful smile and blowing his much anticipated kisses to everyone.
Please keep Willie and his foster family in your prayers as he goes into the biggest surgery of his life this afternoon.
July 22, 2009
July 19, 2009
Weekend Thoughts
What a fantastic weekend! Everything started on Friday when we got Max's lab results. They're beautiful! His hemo dialysis treatment went picture perfect! To top it all off, Tim and I put an offer on a lot last week, they counter offered, we counter offered again, and they accepted it on Friday! We went to dinner to celebrate the days events with my mom and dad.
Max's first evening on 270mL went pretty well. We had a couple O2 alarms, but nothing major. We still aren't convinced that they are Max actually desating. The equipment isn't the best according to the respiratory therapist.
Saturday- a beautiful day! Max and daddy spent most of it outside doing yard work, while I finally got a free day to run some errands.
Sunday- daddy got called into work at 1:00am and didn't get home until 3:00pm this afternoon. He got two hours of sleep before we headed to my brothers house for dinner.
Tim and I had a conversation about how blessed we are tonight. We talked about the fact that even though our son has a chronic illness we wouldn't trade our lives for anything. Sure we would love for Max to be healthy, but we wouldn't have met the wonderful people that were brought into our lives through his illness. We wouldn't trade the friendships that we formed with the RCNIC nurses that took care of Max in his first 6 months of life. The laughs, the tears, the encouragement, the strength and the wisdom that those ladies provided to us will always be remembered. As bad as it was to have to go to the hospital to see our son, we met the best group of ladies in the process. They will ALWAYS hold a special place in our hearts. We love you ladies!
The nephrology team: what do you say about a group of people that have saved our son's life? We were talking about how devastated we will be if Dr. Ben switched hospitals after his fellowship is up in 2 years. I don't know what we will do if he chooses to take a different path. He has been with Max since he was a month and a half old. My heart breaks to think about it. The relationship that we have between Dr. Ben and Dr. Dixon will be one that will last a lifetime, whether they are Max's doctors or not. The nurses that we spend 14+ hours a week with in the dialysis unit will also hold a special place in our hearts forever. We are actually getting pretty close to not seeing them 3 days a week. Once Max's catheter is out, we will only see them once a week for awhile and then only once a month. I honestly have no idea what I am going to do with my spare time. They are my adult interaction throughout the week. What am I going to do to keep myself from talking babble and singing nothing but Handy Manny and Playhouse Disney songs? It's another chapter in Max's novel that I will have to end and a new one that I will have to begin.
I'll keep you posted on how chapter 223 goes. With all of that said, I am asking you to please keep the McRae family in your prayers as they begin chapter 1 of their very long novel. They 5 year old little girl, Kate, has a very aggressive brain tumor. Read her story at www.prayforkate.com. She is having a test tomorrow to determine her kidney function and then will be starting her chemo treatments Tuesday or Wednesday. Please pray for this beautiful little girl. If you go to www.youtube.com and type in Kate McRae it shows three videos that her family has made asking for your prayers.
Have a great week everyone. I will let you know how Wednesday's dressing change goes with the stitches and catheter. Please continue sending up those prayers.
Max's first evening on 270mL went pretty well. We had a couple O2 alarms, but nothing major. We still aren't convinced that they are Max actually desating. The equipment isn't the best according to the respiratory therapist.
Saturday- a beautiful day! Max and daddy spent most of it outside doing yard work, while I finally got a free day to run some errands.
Sunday- daddy got called into work at 1:00am and didn't get home until 3:00pm this afternoon. He got two hours of sleep before we headed to my brothers house for dinner.
Tim and I had a conversation about how blessed we are tonight. We talked about the fact that even though our son has a chronic illness we wouldn't trade our lives for anything. Sure we would love for Max to be healthy, but we wouldn't have met the wonderful people that were brought into our lives through his illness. We wouldn't trade the friendships that we formed with the RCNIC nurses that took care of Max in his first 6 months of life. The laughs, the tears, the encouragement, the strength and the wisdom that those ladies provided to us will always be remembered. As bad as it was to have to go to the hospital to see our son, we met the best group of ladies in the process. They will ALWAYS hold a special place in our hearts. We love you ladies!
The nephrology team: what do you say about a group of people that have saved our son's life? We were talking about how devastated we will be if Dr. Ben switched hospitals after his fellowship is up in 2 years. I don't know what we will do if he chooses to take a different path. He has been with Max since he was a month and a half old. My heart breaks to think about it. The relationship that we have between Dr. Ben and Dr. Dixon will be one that will last a lifetime, whether they are Max's doctors or not. The nurses that we spend 14+ hours a week with in the dialysis unit will also hold a special place in our hearts forever. We are actually getting pretty close to not seeing them 3 days a week. Once Max's catheter is out, we will only see them once a week for awhile and then only once a month. I honestly have no idea what I am going to do with my spare time. They are my adult interaction throughout the week. What am I going to do to keep myself from talking babble and singing nothing but Handy Manny and Playhouse Disney songs? It's another chapter in Max's novel that I will have to end and a new one that I will have to begin.
I'll keep you posted on how chapter 223 goes. With all of that said, I am asking you to please keep the McRae family in your prayers as they begin chapter 1 of their very long novel. They 5 year old little girl, Kate, has a very aggressive brain tumor. Read her story at www.prayforkate.com. She is having a test tomorrow to determine her kidney function and then will be starting her chemo treatments Tuesday or Wednesday. Please pray for this beautiful little girl. If you go to www.youtube.com and type in Kate McRae it shows three videos that her family has made asking for your prayers.
Have a great week everyone. I will let you know how Wednesday's dressing change goes with the stitches and catheter. Please continue sending up those prayers.
July 16, 2009
Lots of Info Coming at You
Good afternoon everyone! It has been a busy week here in the Max household. I have a lot of information to share. I will start in the order that events happened. So, here we go:
We have a medication that we are trying called Renagel. This is a binder that we are putting into Max's formula to pull the phosphorus out. The only place that we can get this drug is from a pharmacy in Michigan. We noticed that for some reason we were going through the powder very quickly. So Dr. Dixon called to get it refilled and the pharmacy told them that we shouldn't be going through it that fast. After they looked at all of the info they realized that they (the pharmacy) MISLABELED the drug. We were OVERDOSING Max on Renagel!!! Guess what they're doing to make up for their mistake? They're sending us ONE free refill. What the hell? Luckily this medication is skimmed off of Max's milk, so it's not going into his system. But what if that was morphine or heparin or anything else for that matter? They could have KILLED my son. I am INFURIATED!!! Needless to say, so are Dr. Dixon and Dr. Ben. We'll see if we make anything else of it. Lesson learned: Check your prescription labels!
Anyway, Max's catheter has been working so far this week. We go packed every time we go in, just in case. It's working. Nurse Sara changed his dressing on Wednesday, and believe it or not, the catheter was actually pushed in a little bit. Rather than a 1/2 inch it's only out about a 1/4 inch beyond the cuff. With that said, it's still falling out, but we're safe for another week as long as Mr. Busy Hands doesn't take us all by surprise.
Pulmonolgy has cancelled his sleep study for next Tuesday. They didn't realize that Max's wasn't on his full dose of PD fluid. So they found it silly to proceed with the study. They will reschedule it once he gets to the 400 mark. They are going to do the saturation study next week. We think they are doing it on Tuesday. We are able to do this test at home, so they will bring the machine here to the house and we will connect him that night to monitor his oxygen saturation.
With that said, here is the PD plan. As Dr. Ben says, "we have to stay ahead of the catheter." So they are going to increase it volume from 250mL to 270mL on Friday (tomorrow). As long as that goes well they are going to make a jump to 300mL on Monday. If he continues to tolerate that, they will be working up to the 400mL mark over the next three weeks. From there they will do the sleep study to make sure he is breathing okay with it and that he is able to remove the carbon dioxide from his body.
I had my surgery consulation with Dr. Tiao yesterday. That went well, but he gave me some VERY bad news. Dr. Sheldon (Max's transplant surgeon and urologist) is very ill. I am not sure what is wrong with him, but Dr. Tiao said that it was going to put him out of work for a long time. He also said that since he is a little older, this could actually push him into early retirement. I am very upset about this. This guy is recognized across the world for his expertise in exactly what Max has. I don't want anyone else doing Max's two biggest surgeries. We want Dr. Sheldon and only Dr. Sheldon. We are so worried about him, so please pray with us that he gets well soon. Not only for Max, but for himself and for all of the other little ones that are his patients. This is a huge devastation to the urology, nephrology and surgery departments at Children's Hospital.
Okay, I think that is it. I feel like I am forgetting something, but I think that was enough for now. I will repost if I think of something else to say.
Enjoy your nice and cool weekend!
We have a medication that we are trying called Renagel. This is a binder that we are putting into Max's formula to pull the phosphorus out. The only place that we can get this drug is from a pharmacy in Michigan. We noticed that for some reason we were going through the powder very quickly. So Dr. Dixon called to get it refilled and the pharmacy told them that we shouldn't be going through it that fast. After they looked at all of the info they realized that they (the pharmacy) MISLABELED the drug. We were OVERDOSING Max on Renagel!!! Guess what they're doing to make up for their mistake? They're sending us ONE free refill. What the hell? Luckily this medication is skimmed off of Max's milk, so it's not going into his system. But what if that was morphine or heparin or anything else for that matter? They could have KILLED my son. I am INFURIATED!!! Needless to say, so are Dr. Dixon and Dr. Ben. We'll see if we make anything else of it. Lesson learned: Check your prescription labels!
Anyway, Max's catheter has been working so far this week. We go packed every time we go in, just in case. It's working. Nurse Sara changed his dressing on Wednesday, and believe it or not, the catheter was actually pushed in a little bit. Rather than a 1/2 inch it's only out about a 1/4 inch beyond the cuff. With that said, it's still falling out, but we're safe for another week as long as Mr. Busy Hands doesn't take us all by surprise.
Pulmonolgy has cancelled his sleep study for next Tuesday. They didn't realize that Max's wasn't on his full dose of PD fluid. So they found it silly to proceed with the study. They will reschedule it once he gets to the 400 mark. They are going to do the saturation study next week. We think they are doing it on Tuesday. We are able to do this test at home, so they will bring the machine here to the house and we will connect him that night to monitor his oxygen saturation.
With that said, here is the PD plan. As Dr. Ben says, "we have to stay ahead of the catheter." So they are going to increase it volume from 250mL to 270mL on Friday (tomorrow). As long as that goes well they are going to make a jump to 300mL on Monday. If he continues to tolerate that, they will be working up to the 400mL mark over the next three weeks. From there they will do the sleep study to make sure he is breathing okay with it and that he is able to remove the carbon dioxide from his body.
I had my surgery consulation with Dr. Tiao yesterday. That went well, but he gave me some VERY bad news. Dr. Sheldon (Max's transplant surgeon and urologist) is very ill. I am not sure what is wrong with him, but Dr. Tiao said that it was going to put him out of work for a long time. He also said that since he is a little older, this could actually push him into early retirement. I am very upset about this. This guy is recognized across the world for his expertise in exactly what Max has. I don't want anyone else doing Max's two biggest surgeries. We want Dr. Sheldon and only Dr. Sheldon. We are so worried about him, so please pray with us that he gets well soon. Not only for Max, but for himself and for all of the other little ones that are his patients. This is a huge devastation to the urology, nephrology and surgery departments at Children's Hospital.
Okay, I think that is it. I feel like I am forgetting something, but I think that was enough for now. I will repost if I think of something else to say.
Enjoy your nice and cool weekend!
July 8, 2009
Catheter Update
Okay, well we are here at dialysis and the catheter is WORKING!!! That's the good news. The bad news is that when Nurse Keri changed the dressing, we noticed that the catheter has come out even more. There is a cuff that is suppose to be under the skin to hold it in. That has been out for quite some time now, but now there is about a 1/2 inch of catheter above the cuff that is exposed. We told Dr. Dixon and the look of disappointment shot across his face. We all knew that this time was coming, but we were really hoping that it would last awhile longer.
With that said, we aren't going to do anything at this point. We have another week before the dressing needs to be changed again, so we will wait and see how it looks then. Everyone that holds him will have to be VERY careful that we don't put a lot of pressure or pulling on that site. Other than that everything is going great! Max is laying in his bed being an absolute crazy man. He is LOUD!!!
Enjoy the rest of your week!
With that said, we aren't going to do anything at this point. We have another week before the dressing needs to be changed again, so we will wait and see how it looks then. Everyone that holds him will have to be VERY careful that we don't put a lot of pressure or pulling on that site. Other than that everything is going great! Max is laying in his bed being an absolute crazy man. He is LOUD!!!
Enjoy the rest of your week!
July 7, 2009
240
Max's PD fluid was increased to 240mL's last night. He did fantastic!!!
We do have one issue: During his hemo treatment yesterday, his catheter stopped working. There are two lumens on his catheter and when this happens it's usually just one lumen. Yesterday it was both. We had to cut his treatment an hour short. His blood was fairly thick so I am hoping that it was just a clot and that his TPA will break it down. Please say a quick prayer that this is what it was and that the day hasn't come that the catheter is finished. We will find out tomorrow afternoon. I will be packing our bags... just in case. Maybe if I prepare ourselves for not coming home then it won't happen. ***fingers crossed***
Dr. Dixon is covering the dialysis unit this week so he got to see Max again yesterday. He is still very happy with how things are going, despoite the whole catheter incident later in the day. He said that if the saturation study that will be done next week shows that all is well, they will move a little faster on increasing his PD fluid (20mL's per week rather than 10mL's). His main reason is because those levels that were gorgeous last week are slowly increasing back up. They are by no means where they were, but are trending upward and he wants to stop it before they get out of hand again. I also asked him what his idea of waiting for the transplant meant and he said hopefully two years, which would mean that Max would be about 3 years old.
As far as appointments and tests go we have the saturation study next week, sleep study on the 21st and his pulmonology appointment on August 3rd. We also have his 6 month follow up with the First Steps program to go over how he is doing and what not. This will determine if he needs more or less therapy, etc. This takes place on the 29th, I think.
Overall, Max is doing GREAT! He looks like he is growing to me, he is developing and sleeping with some pretty good sats. We couldn't be happier.
One more quick piece of info that we ARE totally looking forward to is that my dad is setting up a long weekend trip to Dale Hollow Lake in October. This will be Max's first trip and we are pumped about it! It's going to be a lot of stuff for a four say trip, but we'll make it work. Can't wait!!!
Enjoy your week!
We do have one issue: During his hemo treatment yesterday, his catheter stopped working. There are two lumens on his catheter and when this happens it's usually just one lumen. Yesterday it was both. We had to cut his treatment an hour short. His blood was fairly thick so I am hoping that it was just a clot and that his TPA will break it down. Please say a quick prayer that this is what it was and that the day hasn't come that the catheter is finished. We will find out tomorrow afternoon. I will be packing our bags... just in case. Maybe if I prepare ourselves for not coming home then it won't happen. ***fingers crossed***
Dr. Dixon is covering the dialysis unit this week so he got to see Max again yesterday. He is still very happy with how things are going, despoite the whole catheter incident later in the day. He said that if the saturation study that will be done next week shows that all is well, they will move a little faster on increasing his PD fluid (20mL's per week rather than 10mL's). His main reason is because those levels that were gorgeous last week are slowly increasing back up. They are by no means where they were, but are trending upward and he wants to stop it before they get out of hand again. I also asked him what his idea of waiting for the transplant meant and he said hopefully two years, which would mean that Max would be about 3 years old.
As far as appointments and tests go we have the saturation study next week, sleep study on the 21st and his pulmonology appointment on August 3rd. We also have his 6 month follow up with the First Steps program to go over how he is doing and what not. This will determine if he needs more or less therapy, etc. This takes place on the 29th, I think.
Overall, Max is doing GREAT! He looks like he is growing to me, he is developing and sleeping with some pretty good sats. We couldn't be happier.
One more quick piece of info that we ARE totally looking forward to is that my dad is setting up a long weekend trip to Dale Hollow Lake in October. This will be Max's first trip and we are pumped about it! It's going to be a lot of stuff for a four say trip, but we'll make it work. Can't wait!!!
Enjoy your week!
June 29, 2009
5.2
Ladies and Gentlemen:
5.2! 5.2 is what Max's phosphorus was on Friday. This folks, is a NORMAL phosphorus. The doctors have been trying for oh about 4-5 months to get this particular level down. All I can say is SUCCESS! Between a couple of medication changes and a month of peritoneal dialysis we have SUCCESS! They rechecked it this morning and it went up to 7.9, but that is awesome considering we went the entire weekend without hemo. Needless to say, Dr. Ben and Dr. Dixon are VERY happy about his levels.
So, the plan for this evening is to go up 10mL's on his PD fluid. The increase is small, but this is a step in the right direction. We have to get his volume up so that we can get him off of his hemo. If all goes well, the overall plan is to go up by 10mL once a week. They will then do a saturation test in 2 weeks to see what his oxygen saturation levels are overnight while he is sleeping and on PD. This along with Tim and I watching how he is doing from a breathing standpoint will determine how he is doing with the volume increases. They will do this saturation test every 2weeks. I am definitely not expecting him to have any trouble with this 10mL increase.
Dr. Dixon feels that Max is doing great with the PD and is VERY happy with how everything is going. With that said, he feels that the transplant may be more of a long term goal, meaning waiting a couple of years rather than a year. We are good with that. Whatever it takes to make the transplant more of a success for Max.
Long term plan is that they continue to increase his PD fluid and slowly wean him off of his hemo. This months plan is to reassess him at the end of July and if all of his levels are good and he is tolerating his PD, they will drop his Wednesday hemo treatment. YAH!!! So at this point we are officially only going to the hospital 3 days a week.
We are definitely feeling some relief that the PD is working and that Max is tolerating it beautifully. He has been keeping his oxygen saturation anywhere from 93 in a deep sleep to 99 awake. We couldn't be happier at this point. I have been telling everyone that Max is doing better than he ever has. Of course I have to make sure that there is wood that I can knock on when I say that.
Sorry for the delay in this exciting news. It was a crazy weekend. Tim got called into work on Friday morning at 3am and we just saw him for the first time Sunday morning when he got up at 11:15am. He came home sometime very early Saturday morning, but Max and I were sleeping when he came and we were still sleeping when he left again. Max and I had a busy day on Saturday with our first big grill out at a friends river camp to celebrate my cousin college graduation. What a blast! It was extremely hot, but we got a fan and blew it right on Max, he fell asleep and woke up a ham bone. We were a little late getting home on PD, but it was worth it. We both needed it.
We are planning another big grill out with our friends Rick and Allie's family at her dad's farm for Fourth of July. Can't wait for the hay ride and firework display! Max's first Fourth at home!
Enjoy your holiday weekend everyone!!!
PS: Tim just got off of the phone with my cousin Chris (Tessa's daddy). They had there appointment with Dr. Sheldon today and they are just going to keep an eye on Tessa's bladder. They are going to do monthly ultrasounds to see how things are progressing. Thank you for all of you prayers. I am sure that Chris and Jessica greatly appreciate them as well.
5.2! 5.2 is what Max's phosphorus was on Friday. This folks, is a NORMAL phosphorus. The doctors have been trying for oh about 4-5 months to get this particular level down. All I can say is SUCCESS! Between a couple of medication changes and a month of peritoneal dialysis we have SUCCESS! They rechecked it this morning and it went up to 7.9, but that is awesome considering we went the entire weekend without hemo. Needless to say, Dr. Ben and Dr. Dixon are VERY happy about his levels.
So, the plan for this evening is to go up 10mL's on his PD fluid. The increase is small, but this is a step in the right direction. We have to get his volume up so that we can get him off of his hemo. If all goes well, the overall plan is to go up by 10mL once a week. They will then do a saturation test in 2 weeks to see what his oxygen saturation levels are overnight while he is sleeping and on PD. This along with Tim and I watching how he is doing from a breathing standpoint will determine how he is doing with the volume increases. They will do this saturation test every 2weeks. I am definitely not expecting him to have any trouble with this 10mL increase.
Dr. Dixon feels that Max is doing great with the PD and is VERY happy with how everything is going. With that said, he feels that the transplant may be more of a long term goal, meaning waiting a couple of years rather than a year. We are good with that. Whatever it takes to make the transplant more of a success for Max.
Long term plan is that they continue to increase his PD fluid and slowly wean him off of his hemo. This months plan is to reassess him at the end of July and if all of his levels are good and he is tolerating his PD, they will drop his Wednesday hemo treatment. YAH!!! So at this point we are officially only going to the hospital 3 days a week.
We are definitely feeling some relief that the PD is working and that Max is tolerating it beautifully. He has been keeping his oxygen saturation anywhere from 93 in a deep sleep to 99 awake. We couldn't be happier at this point. I have been telling everyone that Max is doing better than he ever has. Of course I have to make sure that there is wood that I can knock on when I say that.
Sorry for the delay in this exciting news. It was a crazy weekend. Tim got called into work on Friday morning at 3am and we just saw him for the first time Sunday morning when he got up at 11:15am. He came home sometime very early Saturday morning, but Max and I were sleeping when he came and we were still sleeping when he left again. Max and I had a busy day on Saturday with our first big grill out at a friends river camp to celebrate my cousin college graduation. What a blast! It was extremely hot, but we got a fan and blew it right on Max, he fell asleep and woke up a ham bone. We were a little late getting home on PD, but it was worth it. We both needed it.
We are planning another big grill out with our friends Rick and Allie's family at her dad's farm for Fourth of July. Can't wait for the hay ride and firework display! Max's first Fourth at home!
Enjoy your holiday weekend everyone!!!
PS: Tim just got off of the phone with my cousin Chris (Tessa's daddy). They had there appointment with Dr. Sheldon today and they are just going to keep an eye on Tessa's bladder. They are going to do monthly ultrasounds to see how things are progressing. Thank you for all of you prayers. I am sure that Chris and Jessica greatly appreciate them as well.
June 24, 2009
Tessa Needs some Prayers
I know that this blog is for Max, but I feel that it's very important to not only ask for all of you to pray for us, but for those around us that need them as well.
Little Tessa needs all of you prayer warriors to pray for her. She went in for some tests on Tuesday and they showed that her bladder is larger than normal and that it's oddly shaped. She isn't peeing as much as she should be. They also found a cyst on her spine, which at this point, they aren't too concerned about. I don't know much about the news they got today, but something to do with her intestines not functioning properly. She is also not pooping as much as she should be. They have an appointment on Monday with I believe Dr. Sheldon. This is the urologist that is working with Max.
I plan to call Jessica tomorrow to get a little more information from her and to see if there is anything that we can do. What we need ALL of you to do is to pray that all of this ends up being very minor.
I am having a very hard time dealing with all of this news. It is tearing me apart to think that another family, especially a family who we are so close to, is going through something like this. It's not fair to be living, what's suppose to be the happiest time of your life, in fear. Bringing your first born child home isn't suppose to include going to Children's Hospital to have tests done to figure out what is going on with him or her. It's not fair to have to spend your maternity leave going to numerous doctor visits. All of this is bringing back our first few weeks of Max's life. The fear, the tears, the heartache. It's not fair.
Chris and Jessica, we love you and we are here for all of you. We are praying that all of this passes through quickly and as painless as possible. Tessa is beautiful and very lucky to have the two of you as her parents. I am not going to sit here and tell you not to worry, because it's impossible not to do. It's what parents do. You will worry (a little) about her for the rest of your lives. What I will sit here and tell you is to enjoy her, love her and cherish her.
I have to get this off of my chest. I have been wanting to say it for a very long time, but have kept my mouth shut. I think it's important to make everyone realize how precious life is- even the very small things. Please! Please, remind yourselves every day that things could be a whole lot worse. When something as small as someone cutting you off on your way to work ticks you off, remember that someone else in this world has something much worse happening to them. Maybe that person who cut you off is on their way to the hospital because they just got a phone call that their child or parent has taken a turn for the worse. CHERISH the tiniest of things that your loved ones do. I was jumping for joy and had tears in my eyes the other day because Max had snot and spit! Snot and Spit people! He has lived his life so dry from his hemo dialysis that we have never seen him have snot dripping out of his nose. He does now! When Max whines at me because I am not sitting right next to him playing. I CHERISH that. Think of all of the TINY things that your children do for you. Their smiles, laughs, screams, crys, tears... SNOT!
I have been told so many times, "At least you didn't have to deal with the middle of the night feeds with Max." Do you have any idea how much I would have killed to have those middle of the night feeds? Instead I was waking up and calling 513-636-4466 to check on my son. A number that I will have embedded in my head forever. I couldn't just walk into his room and pick him up to comfort him when he cried. Instead a nurse did that for me. I couldn't nurse my child because he had a breathing tube down his throat or because he didn't know how to. Instead I had to pump my milk so that his nurse could give it to him through a tube in his nose. I couldn't walk more than two feet from my son's bed because he was hooked up to monitors and machines. My son was five and a half months old before I could walk around with him. I don't have those first hospital pictures of my son. I don't have "Baby's first foot prints" of my son. The first time I saw my son was when he had a breathing tube down his throat and was in the NICU. The first time I got to hold my son was at Children's Hospital when he was three days old. It took three people to get him out of bed so that I could hold him. We can't stay out later than 9:00 on the weekends because we have to come home to hook our son up to a machine.
But, I wake up every day and tell myself that things could be a lot worse. There is another family out there who is going through much worse than what we are. The bald little boy that I saw running down the hall riding his IV pole like a scooter the other day makes me realize this. The bald two year old little girl that I saw holding the hand of her daddy (pushing an IV pole) while they look a stroll down the halls of the hospital makes me realize this. The other kids that I spend my Mondays, Wednesdays and Fridays with at dialysis make me realize this. The little girl that I saw in the urology clinic last week that had two prosthetic legs and was WALKING brings be hope. Running into the surgeon who saved my son's life by performing an open fetal surgery in the cafeteria brings me joy. Seeing in the halls the doctors, nurses, respiratory therapists, radiology techs, social workers, lactation consultants, physical and speech therapists, the cafeteria lady, etc. All of these people have gotten us through this tough journey, seeing them brings be happiness. I make it a point to smile at least once a day.
I may live my life in fear and worry, but I live it with a smile on my face and the mindset that things could be a lot worse. My son is alive and doing well, I am married to the greatest guy I know. I have a loving and supportive family and group of friends. I have a PERFECT kidney that I will soon give to my son to improve his lifestyle. I have a roof over my head and food on my table. What else do I need? A healthy child? It would be great, but giving birth to a healthy child would mean that we wouldn't have Max and Max is what makes our lives worth living.
Life is too short to worry about the "tough" times or the "bad" days.
CHERISH your lives! CHERISH your family and friends. CHERISH the tiniest things!
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