Last week Maddox stepped on a picker while he was barefoot. The screaming and sobbing was unbelievable. While I was trying to help calm him down, he yelled "But it feels like a poke from the hospital".
Oh sweethart.
I had to talk him down and have him repeat after me, "I'm not getting a poke, There aren't any needles, I am at home, I am safe, Mommy and Daddy are with me, Mason and Jack are here etc...". It was heartbreaking to see and hear. It took a good 15 minutes for him to calm down. (Then I had to repeat the same things to myself ;) )
Ever since the hospital stays, he becomes very upset with any scrapes or cuts that bleed. He cannot stand the sight of blood anymore and just panics when he sees it. Blood never used to bother him before. But he had some messy IVs at the hospital, so there you go.
Mason is still dealing with some stuff as well. Maddox had a follow up appt 2 hours away yesterday, so I had a babysitter (we now have TWO babysitters) hang with Mason at home. He was anxious that Maddox would have to stay at the hospital and that Mason would be alone with the babysitter.
I suppose it will be a while before we aren't reacting in these ways.
Maddox came down with a cold over the weekend which meant there was vomiting and retching again, however, it wasn't anything like before and we were able to manage it, even though it meant he didn't get his full feedings for a couple days. I am starting to feel more confident when he is sick, because I feel like Craig and I have a plan of action, so we aren't just pulling stuff out of our behinds.
Maddox had a follow up appt yesterday. He is 36 pounds (he lost a bit from the weekend) and is 40 inches! He is at the 25th percentile for weight and height. I guess they want to see him at the 75th percentile. We did get the go ahead to decrease the time he is on the feeding pump for 1 hour for 2 weeks. If he makes up the calories lost on his own, we can decrease by another hour for 2 weeks and so on. If he doesn't make up the calories, then we go back to 15 hours. Whoo-Hoo!!!
Can you hear the angel choir singing?! I can!
This is the first step of weaning him off the feeding tube. Our GI doctor was very impressed with the amount of food Maddox is eating and the change in his weight and height. He feels Maddox's stomach and GI system finally "grew up". I am guessing the entire system has matured. Hooray for maturity.
The doctor also said that when we go camping, we can just leave him unhooked from the feeding pump the whole time. We aren't quite ready for that. It would be 3 days without enough nutrition and that would leave Maddox tired and cranky. Not a good combo for tent camping. We will only hook him up when he is sleeping, so he won't need to worry about it while running around. bbWhat a gift for him!
Those are the big things happening around here.
Mason and Maddox have reached a new level in their sibling relationship. They are playing board and card games together, playing together and are pretty inseperable. Mason even camped out in Maddox's room two nights in a row. The giggles and laughter were plenty. It's heartwarming to see this development. I hope they remain close throughout their life. (I'm not saying they don't have their moments, they are normal, but this is a big thing around here)
Jack has turned into a very naughty dog. I am hoping it is just "adolescence". Training does not start until the middle of July. He is still a very fun dog. The boys taught him how to "beg". It is very cute. He is a fun loving, mischevious, smart dog. He is kind of like a dog version of Maddox. But Maddox's personality is much bigger.
Wednesday, June 13, 2012
Wednesday, June 6, 2012
The Business of Eating
Maddox is eating.
A. Lot.
It's unbelievable.
He is eating baby carrots, pea pods, orange and apple slices, beans, peas, corn, all meats, mango. He has tried and eaten a leaf of spinach, blueberries, golden raspberries.
I do not know who this child is.
It's amazing. I tear up thinking about it. What a gift! He is excited to sit at the table for meals and he is excited for his food and excited to try new foods and he is so very proud of himself. This boy, the one who gagged looking at many foods, who would take a bite and say "I'm full", who would become anxious at meal time and who would cry. I am amazed at this change in him and I need to give God all the credit.
We had people come from our church and pray for Maddox and our family once a week for several weeks. This is when the change started.
I have to admit I had a hard time typing that. I have always struggled with the healing part of God because so many people pray for healing for themselves and loved ones, and people still aren't healed. I have friends and family who have lost babies and children who never wavered in their faith and never gave up asking, and God didn't heal.
I don't know why God is healing Maddox, but I can't deny the fact that He is. It certainly isn't because I am super faithful and never doubt or question. Or that I am some super Christian. In fact, I never really asked God to heal Maddox because I just didn't believe in that part of God. But I came to the point where I had no other choice. I really didn't. And so I started asking God to heal him, and when I was exhausted and tired of asking, I asked others to come and ask for the healing.
I am tempted to delete everything I just typed. I am conflicted with sharing all of this. In my heart I am grateful for the healing God has done, I just don't feel right sharing it. I certainly wouldn't want to hear about some healing going on in someone's life if it wasn't happening (or didn't happen) for my loved one. Maybe that's just my immaturity showing, but it's how I feel. And yet, I feel I need to give credit where it's due. But not in a gloating, boasting, bragging way. It's actually very humbling when I think about it.
Wow. This was just going to be a post about how well Maddox is eating. Let me know how you feel about all of this (ha! That would be about 2 or 3 opinions ).
But the good news is, Maddox is eating!!!
A. Lot.
It's unbelievable.
He is eating baby carrots, pea pods, orange and apple slices, beans, peas, corn, all meats, mango. He has tried and eaten a leaf of spinach, blueberries, golden raspberries.
I do not know who this child is.
It's amazing. I tear up thinking about it. What a gift! He is excited to sit at the table for meals and he is excited for his food and excited to try new foods and he is so very proud of himself. This boy, the one who gagged looking at many foods, who would take a bite and say "I'm full", who would become anxious at meal time and who would cry. I am amazed at this change in him and I need to give God all the credit.
We had people come from our church and pray for Maddox and our family once a week for several weeks. This is when the change started.
I have to admit I had a hard time typing that. I have always struggled with the healing part of God because so many people pray for healing for themselves and loved ones, and people still aren't healed. I have friends and family who have lost babies and children who never wavered in their faith and never gave up asking, and God didn't heal.
I don't know why God is healing Maddox, but I can't deny the fact that He is. It certainly isn't because I am super faithful and never doubt or question. Or that I am some super Christian. In fact, I never really asked God to heal Maddox because I just didn't believe in that part of God. But I came to the point where I had no other choice. I really didn't. And so I started asking God to heal him, and when I was exhausted and tired of asking, I asked others to come and ask for the healing.
I am tempted to delete everything I just typed. I am conflicted with sharing all of this. In my heart I am grateful for the healing God has done, I just don't feel right sharing it. I certainly wouldn't want to hear about some healing going on in someone's life if it wasn't happening (or didn't happen) for my loved one. Maybe that's just my immaturity showing, but it's how I feel. And yet, I feel I need to give credit where it's due. But not in a gloating, boasting, bragging way. It's actually very humbling when I think about it.
Wow. This was just going to be a post about how well Maddox is eating. Let me know how you feel about all of this (ha! That would be about 2 or 3 opinions ).
But the good news is, Maddox is eating!!!
Thursday, May 17, 2012
I Love this Dog
Jack is a great dog. Today we found out he can climb trees a bit. We are going to have fun with him. Mason and I are going to try and train him for agility. Jack loves the boys and they are his people. He needs to be where they are and they need to be where he is. It can get crazy around here at times, but it's a good crazy.
Look at that face.
Tired puppy.
I love these pictures of the boys and Jack.
Mason keeps drawing pictures of Jack.
Look at that face.
Tired puppy.
I love these pictures of the boys and Jack.
Mason keeps drawing pictures of Jack.
Tuesday, May 15, 2012
Camping
Last night Craig and I decided we are going to tent camp with the boys this July. Feeding tube and everything. yep.
The biggest obstacle was how to make Maddox's formula while camping. Before this new combination of the two formulas we could make it a bottle at a time if we needed/wanted to. We can't do that anymore. We have to make the entire batch at once in a blender. We also needed a way to safely clean his bottles. This is how we solved those problems:
We will get a site with electrical and bring a dorm fridge. We will also need to bring our blender to make Maddox's formula. I purchased a ton of those 10 ounce disposable sippy cups and we will mark the ml and ounces on them. That elimnates the need to wash bottles. I will also have the formula all premeasured and mixed for the number of nights we will be there. And with the electrical site we will be able to charge his feeding pump. I am also going to ask his doctor if we can decrease the amount of formula Maddox needs while camping to make it a little easier on Maddox. I'd like to decrease the time he needs the feeding pump by 3 hours.
The dorm fridge was not my idea. I was talking with a friend during Mason's Spanish class about camping and the challenges and she suggested we bring the fridge. That is what her parents do. We will need to come up with a plan in case it rains. I was so bummed yesterday, because when I was talking with my friend about camping I had realized it wasn't going to work (or so I thought). I couldn't figure out how we were going to wash out the bottles and use the blender and make up his formula in a clean and sanitary way. I was almost depressed for most of the day. But last night I told Craig, we ARE going to tent camp and we WILL make this work (I have no idea where Maddox gets his strong will from).
So, that is the plan for now. Please pray this works. I know I am going to start praying \'] (those odd symbols are courtesy of Jack) now. I just don't want this feeding tube to stop us from doing anything we normally would do (as long as Maddox is safe) . We are also bringing Jack. I am sure that by the end of the camping trip I will be crying or drunk or quite possibly both (that fridge will be full of formula and wine). BUT, we will have gone camping.
The biggest obstacle was how to make Maddox's formula while camping. Before this new combination of the two formulas we could make it a bottle at a time if we needed/wanted to. We can't do that anymore. We have to make the entire batch at once in a blender. We also needed a way to safely clean his bottles. This is how we solved those problems:
We will get a site with electrical and bring a dorm fridge. We will also need to bring our blender to make Maddox's formula. I purchased a ton of those 10 ounce disposable sippy cups and we will mark the ml and ounces on them. That elimnates the need to wash bottles. I will also have the formula all premeasured and mixed for the number of nights we will be there. And with the electrical site we will be able to charge his feeding pump. I am also going to ask his doctor if we can decrease the amount of formula Maddox needs while camping to make it a little easier on Maddox. I'd like to decrease the time he needs the feeding pump by 3 hours.
The dorm fridge was not my idea. I was talking with a friend during Mason's Spanish class about camping and the challenges and she suggested we bring the fridge. That is what her parents do. We will need to come up with a plan in case it rains. I was so bummed yesterday, because when I was talking with my friend about camping I had realized it wasn't going to work (or so I thought). I couldn't figure out how we were going to wash out the bottles and use the blender and make up his formula in a clean and sanitary way. I was almost depressed for most of the day. But last night I told Craig, we ARE going to tent camp and we WILL make this work (I have no idea where Maddox gets his strong will from).
So, that is the plan for now. Please pray this works. I know I am going to start praying \'] (those odd symbols are courtesy of Jack) now. I just don't want this feeding tube to stop us from doing anything we normally would do (as long as Maddox is safe) . We are also bringing Jack. I am sure that by the end of the camping trip I will be crying or drunk or quite possibly both (that fridge will be full of formula and wine). BUT, we will have gone camping.
Monday, May 7, 2012
Happenings
This was written January 9th, 2012. For some reason I did not post it, it was in my "drafts" section. I am posting it, so I don't forget it.
Things have been going pretty well since my last post.
I am so very grateful for so many things in my life. Grateful for a husband who will pick up the slack when I am too exhausted or when I need to lay down as soon as he gets home. I am grateful for overall healthy children. I know Maddox has a feeding tube, but he could have so many other things as well. I am grateful for family who is close by and able to help, friends who listen and pray, and I am grateful for our health insurance.
I am grateful for God and his help during this time. I do have to admit I often struggle wondering why He allows things to happen and why He doesn't stop them. Especially things that happen to children. I know He is all good and loving, this I know to be true in my innermost being. And yet, sometimes that doesn't jive with what I see happening with Maddox or other children. And I do not profess to know why things happen to children (or other people). I have no answers. I could say all the regular things "It's a broken world, all things happen for a reason, God works all things for good, etc.." but those sayings are all trite when you see your child suffering. I do know that sometimes God heals here on earth and sometimes he heals in heaven.
I cannot do this without God though. The days that I do try, it always ends up exhausting and non productive. When I give the day over to God and trust Him with Maddox and the rest of the day, I am so much more peaceful and productive, and the day flows. For example, last night Maddox threw up again (I didn't hear him calling over the monitor and I got to him too late. He was crying "why did it take you so long mommy? Why did it take you so long?") and was up off and on during the night. I was getting anxious about the next day because school was starting up again and I knew I was going to be exhausted, but I gave it over to God and today was great. I was tired, but everything that needed to be done was done and I had a great day with the kids.
Tonight I was driving and just started crying. Crying for Maddox, for Mason, for myself. I am sad that Maddox has to have this feeding tube. I am sad that I cannot fix this with a bandaid and a kiss. I want to fix this for him. I am sad that this is turning into more of a long term deal. Back in August we were told this would be a 3 month thing with just the ng tube. Now we have a g-j tube and he is struggling with throwing up. I fear that there is something physically wrong with him that we don't know about yet and that he will need this for life. That breaks my heart.
I am sad for Mason. Maddox needs a lot of attention right now and I am exhausted during the day because Maddox also needs help throughout the night. I feel bad that I cannot give Mason the attention I used to give him. I know this is a season.
Things have been going pretty well since my last post.
I am so very grateful for so many things in my life. Grateful for a husband who will pick up the slack when I am too exhausted or when I need to lay down as soon as he gets home. I am grateful for overall healthy children. I know Maddox has a feeding tube, but he could have so many other things as well. I am grateful for family who is close by and able to help, friends who listen and pray, and I am grateful for our health insurance.
I am grateful for God and his help during this time. I do have to admit I often struggle wondering why He allows things to happen and why He doesn't stop them. Especially things that happen to children. I know He is all good and loving, this I know to be true in my innermost being. And yet, sometimes that doesn't jive with what I see happening with Maddox or other children. And I do not profess to know why things happen to children (or other people). I have no answers. I could say all the regular things "It's a broken world, all things happen for a reason, God works all things for good, etc.." but those sayings are all trite when you see your child suffering. I do know that sometimes God heals here on earth and sometimes he heals in heaven.
I cannot do this without God though. The days that I do try, it always ends up exhausting and non productive. When I give the day over to God and trust Him with Maddox and the rest of the day, I am so much more peaceful and productive, and the day flows. For example, last night Maddox threw up again (I didn't hear him calling over the monitor and I got to him too late. He was crying "why did it take you so long mommy? Why did it take you so long?") and was up off and on during the night. I was getting anxious about the next day because school was starting up again and I knew I was going to be exhausted, but I gave it over to God and today was great. I was tired, but everything that needed to be done was done and I had a great day with the kids.
Tonight I was driving and just started crying. Crying for Maddox, for Mason, for myself. I am sad that Maddox has to have this feeding tube. I am sad that I cannot fix this with a bandaid and a kiss. I want to fix this for him. I am sad that this is turning into more of a long term deal. Back in August we were told this would be a 3 month thing with just the ng tube. Now we have a g-j tube and he is struggling with throwing up. I fear that there is something physically wrong with him that we don't know about yet and that he will need this for life. That breaks my heart.
I am sad for Mason. Maddox needs a lot of attention right now and I am exhausted during the day because Maddox also needs help throughout the night. I feel bad that I cannot give Mason the attention I used to give him. I know this is a season.
Hellooooo
So, it's been a while again. Which usually means things are going well, and they are. I feel bad only posting about the hard times, because that isn't an accurate picture about what goes on over here.
For a little over 3 weeks, Maddox has been tolerating his full feedings at his full rate. He is getting all his calories and is gaining weight. It's a beautiful thing. The puke buckets are put away, we aren't under constant alert, and we can actually do things again. It feels like a normal life again. At least a normal life with a feeding tube. Maddox has recently gotten more stamina and endurance for walks and play and he is also taking 2-3 hour naps a day in the afternoon. It makes for some late nights some times, but without the nap he falls apart. I am assuming he is growing as well. It's amazing what nutrition does.
Mason is doing well. He's a bit tired of his little brother, because with Maddox's increased nutrition and calories, he can be quite a bit of a stinker. Mason continues to do well with schooling and his sense of humor is maturing, and he is quite funny most days. He is also getting taller and taller and taller. It won't be much longer before he is taller than me. A few days ago he told me he isn't going to college because he is going to be an agent, or detective, or cop. Once he understands the difference between the three he will choose. Love my Mason! Mason also loves watching black and white episodes of Rin Tin Tin, the old episodes of Batman and Lost in Space.
Maddox is still into his superheros and dressing up. He has also developed the fever for Legos! He and Mason can build with them for hours. It's nice because Maddox can now build his own creations so he is feeling pretty good about that. He has been interested in school as well and needs to sit down at the table with Mason. I found some preschool units on Batman and Star Wars, so he has been very happy with that. Those are some of my favorite moments. Sitting at the table with Mason and Maddox, helping both of them with their school work.
Jack the dog is amazing. He has been a bit of a stinker lately though. Just refusing to listen and he had been listening so beautifully. Training doesn't start until July, so hopefully he doesn't get too out of hand before then. He isn't awful, just testing. We absolutely love him though. He fits in perfectly with our family and is a dream with the kids. The boys love him as well and I am sure Jack gets more hugs and kisses than he would like.
So, these last few weeks I have come to terms with the fact that our lives are not exactly "normal". Our son has a feeding tube and that is not "normal". I still fight tears when strangers look at him differently or when people think Maddox has on a harness thing with a leash. We actually get that a lot. People will chuckle and smile and comment on the harness. It's hard not to scream "It's a backpack with a feeding pump!!! He has a feeding tube connected through his stomach!!!". It's not all the time, but it happens enough. I have also accepted the fact that there is no end point for this feeding tube. I do not know how long he will have it. No one knows. I had to give up the dream that it would be short term like they originally said. (Initially we were told he would have the nose feeding tube for just 3 months; that was 8 1/2 months ago).
I have also accepted the fact that when Maddox gets ill, he will not be able to tolerate full feedings and he will probably lose weight and we will need to adjust the rate and strength of his feeds to keep him out of the hospital. And that's OK. (well, it isn't completely ok, but you know what I mean).
I would love nothing more than for Maddox to be completely healed and to be able to eat enough on his own. That is my daily prayer, but I am also grateful that he is doing well, growing and is currently healthy.
For a little over 3 weeks, Maddox has been tolerating his full feedings at his full rate. He is getting all his calories and is gaining weight. It's a beautiful thing. The puke buckets are put away, we aren't under constant alert, and we can actually do things again. It feels like a normal life again. At least a normal life with a feeding tube. Maddox has recently gotten more stamina and endurance for walks and play and he is also taking 2-3 hour naps a day in the afternoon. It makes for some late nights some times, but without the nap he falls apart. I am assuming he is growing as well. It's amazing what nutrition does.
Mason is doing well. He's a bit tired of his little brother, because with Maddox's increased nutrition and calories, he can be quite a bit of a stinker. Mason continues to do well with schooling and his sense of humor is maturing, and he is quite funny most days. He is also getting taller and taller and taller. It won't be much longer before he is taller than me. A few days ago he told me he isn't going to college because he is going to be an agent, or detective, or cop. Once he understands the difference between the three he will choose. Love my Mason! Mason also loves watching black and white episodes of Rin Tin Tin, the old episodes of Batman and Lost in Space.
Maddox is still into his superheros and dressing up. He has also developed the fever for Legos! He and Mason can build with them for hours. It's nice because Maddox can now build his own creations so he is feeling pretty good about that. He has been interested in school as well and needs to sit down at the table with Mason. I found some preschool units on Batman and Star Wars, so he has been very happy with that. Those are some of my favorite moments. Sitting at the table with Mason and Maddox, helping both of them with their school work.
Jack the dog is amazing. He has been a bit of a stinker lately though. Just refusing to listen and he had been listening so beautifully. Training doesn't start until July, so hopefully he doesn't get too out of hand before then. He isn't awful, just testing. We absolutely love him though. He fits in perfectly with our family and is a dream with the kids. The boys love him as well and I am sure Jack gets more hugs and kisses than he would like.
So, these last few weeks I have come to terms with the fact that our lives are not exactly "normal". Our son has a feeding tube and that is not "normal". I still fight tears when strangers look at him differently or when people think Maddox has on a harness thing with a leash. We actually get that a lot. People will chuckle and smile and comment on the harness. It's hard not to scream "It's a backpack with a feeding pump!!! He has a feeding tube connected through his stomach!!!". It's not all the time, but it happens enough. I have also accepted the fact that there is no end point for this feeding tube. I do not know how long he will have it. No one knows. I had to give up the dream that it would be short term like they originally said. (Initially we were told he would have the nose feeding tube for just 3 months; that was 8 1/2 months ago).
I have also accepted the fact that when Maddox gets ill, he will not be able to tolerate full feedings and he will probably lose weight and we will need to adjust the rate and strength of his feeds to keep him out of the hospital. And that's OK. (well, it isn't completely ok, but you know what I mean).
I would love nothing more than for Maddox to be completely healed and to be able to eat enough on his own. That is my daily prayer, but I am also grateful that he is doing well, growing and is currently healthy.
Friday, April 13, 2012
The Little Things
Maddox had a rough night last night. He is a vivid dreamer, so the first few hours were spent helping him find Lego pieces in the bed. He was dreaming a house he built broke in the bed and he would hold out his hand to me with then"house" in it, crying because he couldn't find the pieces. It's weird. He is dreaming, but he can interact with me, so as long as I could convince him I found the pieces and put them in a safe place, he was fine. Then he woke up at some point saying he couldn't find the way and didn't want go down the secret passage, so I had to "show" him the other way to get home. It was an active night.
He didn't start throwing up until about 2 am, but he was whimpering all night. And he didn't throw up as badly as he was when we were admitted to the hospital.. I did need to stop his feeding earlier than usual this morning, and I had to decrease the rate of his feed last night.
This afternoon I hooked him back up at the normal rate for 2 1/2 hours to catch up a bit and he threw up after the first 45 minutes, then threw up about 20 minutes later, but stopped throwing up after that and fell asleep. And he wasn't throwing up the nasty stuff like at the hospital. He didn't get all lethargic either. And the area around his button isn't all irritated, which is good, because it gets painful if it is.
So, today I am thankful for the little things:
Not as much puking.
No lethargy when hooked up.
The skin around his button is good.
He isn't throwing up the nasty stuff.
As soon as I finished typing this, he started throwing up right after getting hooked up for nighttime feeds and it is the nasty stuff. Ugh. We are going to wait out the weekend before calling ( unless things get worse). He still has this junky cough and that is triggering most of the puking. Cough medicines don't seem to help and the home care nurse listened to him yesterday and his lungs sounded ok. Thankfully Mason is spending the night at his friend's house tonight so he doesn't have to see this. Well, off to bed. We'll see what tonight holds for us.
(Jack decided to join in and he threw up his food tonight. He's probably allergic to it)
Thursday, April 12, 2012
Fear
Tonight Maddox started throwing up while hooked up to his feeding tube. He wasn't coughing, just throwing up. We went to the Home Show and he fell asleep in the van. Craig and Mason went in and I waited for Maddox to wake up. He woke up out of a sleep and threw up a couple times. After a bit he was better (but complaining of pain in his upper tummy area) so we went in. Then he had diarrehea and we almost didn't make it to the bathroom. He threw up while on the toilet. As we were walking to my Dad's booth, he needed to throw up again. Thankfully we found a stairwell we could sit on and I had a plastic bag in my purse, and we sat down and he threw up a few times. I turned off his feeding pump and unhooked him and called my Dad. It was heartbreaking sitting on some stairs with people milling about, while my son threw up into a plastic bag as if it was nothing. He is so used to throwing up that it's almost routine for him. He doesn't like it, but he is definitely used to it. He cries before he throws up, but after throwing up he moves on like it was nothing. He was fine the rest of the night while unhooked from the feeding pump.
We hooked him back up once we got home and the same thing started again, so we shut him off for the night. His stomach is also draining bright yellow stuff again. I. Am. Terrified. (which is ironic because I am doing an online Bible study on fear)
So many memories are flooding back. Memories from the hospital. I am terrified that we will have to go back and I will not be able to be strong for him. I know my strength came from Jesus while we were there, but I do not know if I have the strength to do it again. Can Jesus truly give me that much strength? I don't want to have to need that kind of strength for my child. I don't. It may sound childish, but it's true.
Maddox was so scared, terrified, and traumatized while we were there. I had to hold him and sit with him through so many horrible things and all these memories are rushing back at once. The look of sheer terror in his eyes as he had to wait on a table while strapped to the table around his middle, while we waited for the radiologist to change out his feeding tube. He waited on that table for at least 15 minutes before the radiologist appeared. He was screaming at the top of his lungs and his eyes were so big and so full of fear and Mason was on the other side of the door with Craig and I knew Mason could hear everything and that he was scared too and I couldn't do anything to help either one of them. I couldn't make it stop. I did get Maddox off the table so I could hold him until the radiologist came in, but I do not ever want to see that look on his face again. Ever.
Sedating him for the MRI. How he pleaded with the staff and begged them to just let him plug his ears so he wouldn't hear the noise so he wouldn't need sedation ("I will be OK! I can plug my ears! I don't need to go to sleep. It won't be too loud! See, I can plug my ears!!!"). (they told him he needed to be asleep so he wouldn't hear the loud noise). He had his little fingers in his ears and we had to pull them out so they could put the medicine in his I.V.
How he would beg me "Help me Mama, Help me feel better! Help me stop throwing up Mama. Help me Mama!"
The night he woke up screaming in this high pitched, loud, agonizing scream because he was in pain. Again asking me to help him. Mason was in the room with us and Craig was at the hotel and I couldn't find the hotel number and Craig didn't have his cell phone and Mason was on a mat on the floor and pulled the covers up over his head and curled into a ball and I couldn't help either one of them.
The day Mason got the stomach flu in the hospital was the same day they wanted to initially do the MRI. Craig was back at home, my parents were enroute and it was looking like I was going to have to choose between sitting with Mason in the hospital room or going with Maddox as he was sedated for the MRI. And I couldn't choose. I couldn't. I remember looking between Mason and Maddox and telling the nurse, "Both my babies need me, what am I supposed to do?" Thankfully God worked that out as well and my cousin just happened to call to see if she could visit and then they changed to day and time of the MRI because there weren't any spots left for the day.
That night I wheeled Mason out to my parents' vehicle so Mason could go to my Aunt and Uncle's home for the night with my Mom and Dad to get some sleep. He was sobbing, begging to stay at the hospital, begging me not to leave him. It was the best thing for him so he could get some decent sleep, but oh, how I wanted to grab him and never let go. It was the hardest thing I have ever had to do with Mason. If it had been under different circumstances, it might not have been as hard for him, but he was stressed and anxious already and it was just really bad timing for the flu.
There is so much more and the thought of going through that again is horrific. My heart has never been stretched as much as it was those 16 days. I know things have been better, but the doctors really don't know why things are better and don't know why what they did is working. My fear is that there is something really wrong that is progressive that just hasn't progressed enough for them to find.
Now Maddox wakes up in the middle of the night (2-3 in the morning) with questions like "If I keep the button in forever will it pop out when I get bigger? Because that will really hurt if it does", "If I keep getting formula with my tubes will I grow so big my head will break through the roof?" . The questions seem cute, but he is really afraid. When he started throwing up while coughing, I had to reassure him this was not the same kind of throw ups he had at the hospital and that we weren't going to the hospital. He told me his brain keeps telling him he has to go back to the hospital when he throws up.
Mason is dealing with fears and anxiety now as well.
I know I am making this all about me, but I don't think I really dealt with this while at the hospital because there wasn't time to feel any of the feelings and then things were going so well, I just wanted to forget it all, but tonight really brought it all back. And I know there are families out there dealing with much worse things than we are. I honestly know that. I don't think we are worse off than everyone or that our situation is unique or the most horrible. It is the worst thing I have ever gone through with my children though. I just don't want to have to do it again.
Deep down I know Jesus will give me what I need to be strong for Mason and Maddox. Tonight I just had to keep asking him to give me the strength I needed to stay at the Home Show (I just wanted to run away) and to keep calm for the boys and the strength to help Mason through some big fears when we got home. And Jesus did. He always shows up and I know He always will. I just wish Maddox was fully healed and didn't need a feeding tube and could eat enough on his own. I know God is using this situation and developing things in Mason and Maddox; I've seen some of it, I just wish there was an easier way. This is a quote from the book "An Untroubled Heart" by Melissa Taylor, "Faith is not walking around on eggshells in fear of having our stability pulled out from under us. Faith is standing on the firm foundation of Christ". Right now I am walking on eggshells, just waiting for everything to be pulled out from under us. I just want my baby boy to be fully healed. And I pray that all of this leads Mason and Maddox closer to Jesus and that they see how loving Jesus is and how they can trust Him and how they can go to Him in difficult situations and that even though Jesus does not always take away the hard stuff, He will help them through it. I also pray I am modeling how to walk with Jesus in the hard stuff well.
We hooked him back up once we got home and the same thing started again, so we shut him off for the night. His stomach is also draining bright yellow stuff again. I. Am. Terrified. (which is ironic because I am doing an online Bible study on fear)
So many memories are flooding back. Memories from the hospital. I am terrified that we will have to go back and I will not be able to be strong for him. I know my strength came from Jesus while we were there, but I do not know if I have the strength to do it again. Can Jesus truly give me that much strength? I don't want to have to need that kind of strength for my child. I don't. It may sound childish, but it's true.
Maddox was so scared, terrified, and traumatized while we were there. I had to hold him and sit with him through so many horrible things and all these memories are rushing back at once. The look of sheer terror in his eyes as he had to wait on a table while strapped to the table around his middle, while we waited for the radiologist to change out his feeding tube. He waited on that table for at least 15 minutes before the radiologist appeared. He was screaming at the top of his lungs and his eyes were so big and so full of fear and Mason was on the other side of the door with Craig and I knew Mason could hear everything and that he was scared too and I couldn't do anything to help either one of them. I couldn't make it stop. I did get Maddox off the table so I could hold him until the radiologist came in, but I do not ever want to see that look on his face again. Ever.
Sedating him for the MRI. How he pleaded with the staff and begged them to just let him plug his ears so he wouldn't hear the noise so he wouldn't need sedation ("I will be OK! I can plug my ears! I don't need to go to sleep. It won't be too loud! See, I can plug my ears!!!"). (they told him he needed to be asleep so he wouldn't hear the loud noise). He had his little fingers in his ears and we had to pull them out so they could put the medicine in his I.V.
How he would beg me "Help me Mama, Help me feel better! Help me stop throwing up Mama. Help me Mama!"
The night he woke up screaming in this high pitched, loud, agonizing scream because he was in pain. Again asking me to help him. Mason was in the room with us and Craig was at the hotel and I couldn't find the hotel number and Craig didn't have his cell phone and Mason was on a mat on the floor and pulled the covers up over his head and curled into a ball and I couldn't help either one of them.
The day Mason got the stomach flu in the hospital was the same day they wanted to initially do the MRI. Craig was back at home, my parents were enroute and it was looking like I was going to have to choose between sitting with Mason in the hospital room or going with Maddox as he was sedated for the MRI. And I couldn't choose. I couldn't. I remember looking between Mason and Maddox and telling the nurse, "Both my babies need me, what am I supposed to do?" Thankfully God worked that out as well and my cousin just happened to call to see if she could visit and then they changed to day and time of the MRI because there weren't any spots left for the day.
That night I wheeled Mason out to my parents' vehicle so Mason could go to my Aunt and Uncle's home for the night with my Mom and Dad to get some sleep. He was sobbing, begging to stay at the hospital, begging me not to leave him. It was the best thing for him so he could get some decent sleep, but oh, how I wanted to grab him and never let go. It was the hardest thing I have ever had to do with Mason. If it had been under different circumstances, it might not have been as hard for him, but he was stressed and anxious already and it was just really bad timing for the flu.
There is so much more and the thought of going through that again is horrific. My heart has never been stretched as much as it was those 16 days. I know things have been better, but the doctors really don't know why things are better and don't know why what they did is working. My fear is that there is something really wrong that is progressive that just hasn't progressed enough for them to find.
Now Maddox wakes up in the middle of the night (2-3 in the morning) with questions like "If I keep the button in forever will it pop out when I get bigger? Because that will really hurt if it does", "If I keep getting formula with my tubes will I grow so big my head will break through the roof?" . The questions seem cute, but he is really afraid. When he started throwing up while coughing, I had to reassure him this was not the same kind of throw ups he had at the hospital and that we weren't going to the hospital. He told me his brain keeps telling him he has to go back to the hospital when he throws up.
Mason is dealing with fears and anxiety now as well.
I know I am making this all about me, but I don't think I really dealt with this while at the hospital because there wasn't time to feel any of the feelings and then things were going so well, I just wanted to forget it all, but tonight really brought it all back. And I know there are families out there dealing with much worse things than we are. I honestly know that. I don't think we are worse off than everyone or that our situation is unique or the most horrible. It is the worst thing I have ever gone through with my children though. I just don't want to have to do it again.
Deep down I know Jesus will give me what I need to be strong for Mason and Maddox. Tonight I just had to keep asking him to give me the strength I needed to stay at the Home Show (I just wanted to run away) and to keep calm for the boys and the strength to help Mason through some big fears when we got home. And Jesus did. He always shows up and I know He always will. I just wish Maddox was fully healed and didn't need a feeding tube and could eat enough on his own. I know God is using this situation and developing things in Mason and Maddox; I've seen some of it, I just wish there was an easier way. This is a quote from the book "An Untroubled Heart" by Melissa Taylor, "Faith is not walking around on eggshells in fear of having our stability pulled out from under us. Faith is standing on the firm foundation of Christ". Right now I am walking on eggshells, just waiting for everything to be pulled out from under us. I just want my baby boy to be fully healed. And I pray that all of this leads Mason and Maddox closer to Jesus and that they see how loving Jesus is and how they can trust Him and how they can go to Him in difficult situations and that even though Jesus does not always take away the hard stuff, He will help them through it. I also pray I am modeling how to walk with Jesus in the hard stuff well.
Tuesday, April 10, 2012
Meet Jack the Dog
This is Jack. We adopted him. Isn't he cute? Jack is 8 months old and is a honey of a dog. The boys LOVE him and he is incredibly good with them. He's hypoallergenic and Mason has been fine with him. It's like he has always been a part of our family.
Jack let's Maddox lay on him, hug him, kiss him, whatever Maddox wants to do. And Jack doesn't mess with the feeding tube!
Mason is ecstatic we have a dog. It's true love over here!
He has been a great distraction from all of the medical stuff.
My incredible family treated me to a haircut, color and eyebrow wax last week! And appetizers and a glass of wine before (with my sis) as well as dessert after. I am still overwhelmed. That was the best gift ever! I love my hair!!! I love my family!!!!
I have been wanting to write more about our experience at the hospital, but I haven't been able to bring myself to do it.
Mason and Maddox both have a horrible cough (Craig has had it for several weeks). Mason needed his inhaler the last couple nights. We are back to no sleep again. I think I have gotten a total of maybe 5 hours of sleep (and that is being generous) over the last two nights. I brought the boys in to the doctor today and they were given prednisone to take at bedtime for a couple nights.
Maddox is throwing up again with all the coughing. The boys have needed reassurance that isn't the same thing he went to the hospital for. I need the same reassurance as well. We decided to unhook Maddox from his feeding pump tonight because he was getting into the retching cycle again. Hopefully the rest will help him. I cannot even begin to think about him becoming ill again or I almost throw up. I should sleep. Hopefully tonight is a good night!
Monday, March 5, 2012
wow
The last few days have been incredible.
After the whole ER fiasco, Craig and I were better by Friday (although I haven't gone to the bathroom since Thursday, so I may have new problems soon)
I know I am going to be getting all my days and nights mixed up as I record stuff, but I will do the best I can.
Thursday night was not a good night. Maddox was retching and throwing up quite often and we couldn't get his feeds anywhere near the rate they needed to be. Friday they decided to change his feeding tube (originally they decided it would happen on Tuesday March 6), but they wanted to see what would happen.
They don't sedate when changing out the tube because it is not painful, however, they had Maddox laying on the table waiting for the radiologist for almost 20 minutes before the procedure began. Maddox was terrified and screaming and crying and it was awful. I have never seen his eyes so scared or large before. Once the procedure began, he was fine and it took maybe 5 minutes tops and there was no pain. After, Maddox was fine. Wiped out, but fine.
That night he tolerated his feeds pretty well and the rate was almost where it was supposed to be. Saturday he didn't retch during the day, but he was miserable. He didn't leave the bed and barely spoke and was very lethargic. That night he woke up around 10:00pm screaming in pain. I have never heard him scream like that ever. It lasted 15 minutes and went away on it's own . Mason was in the room and I could not find the number of the hotel where Craig was. Poor Mason just put his head under the covers and was visibly upset. There was no one to take him out into the hallway. Once Maddox settled, I found the number and Craig was here within 20 minutes.
We stopped the feedings for an hour, then resumed because he was comfortable. Within another hour, he was screaming again, but it wasn't as intense and only lasted 5 minutes. This incredible, wonderful resident came in and she suggested a small dose of ativan. It worked wonderfully and Maddox slept for almost 6 hours straight. He needed another dose of ativan at 6:30 in the morning, but did fine after that. The problem was that he was soooo looped up. He was seeing two pacifiers on his table, one was floating above the other one and at one point he saw two tvs. We stopped his feeds for a bit and slowed them down again so he wouldnt need so many drugs.
Sat night and Sunday are a bit of a blur. I think there was a lot of retching and throwing up and diarreaha. Sunday night we tried a diffferent formula, but it didn't make a difference, so we went back to his regular stuff. Sunday night Maddox needed ativan every 4 hours (at a much lower dose) and zofran and benadryl every 4-6 hours as well to keep the retching down. He retched every 4 hours instead of every 15 minutes. This morning he started throwing up a dark brown liquid (old blood) and a lot was draining from his tube in his stomach. The docs came in and actually saw him retching. I told them how well he does with the feeds turned off and they discussed and agreed to turn off the feeding tube for 24 hours and reevaluate tomorrow morning. The best part was that one of the doctors was able to see Maddox feeling good and she could not believe how different he was. She was floored. Maddox was supposed to not have anything by mouth to give his gut a rest, but after a couple hours he was sobbing for chicken tenders, so they agreed to let him have some bland food.
He ate little bits of cheerios, corn chips, graham crackers, club crackers, and honey kix off and on all day. and he was great! We made a fort, he played all over the room with my dad, went for a walk around the unit, sang, danced and he was imaginative again and was Maddox. Tonight he was sobbing "I want ham and chicken tenders!!!" over and over and over and over, so the dr on call said he could have some ham. He had 3/4 of a slice. Now, Maddox didn't eat nearly enough to live off of today, but he definitely showed some interest in food and showed signs of hunger. 2 very big things for him. He didn't throw up any of the food and didn't feel nauseated either. They cannot figure him out. He is a total mystery.
Tonight I am hoping for a good nights sleep for him. He hasn't had one in so long. I don't know what they will say in the morning. He may get a pic line to get some nutrition in him while we rest his gut some more, or we may just wait one more day before starting up the feedings again. One theory is that the antibiotic he is on is wreaking havoc with his gut (which it can)--but he tolerates regular food ok so that doesn't make complete sense. Another theory is that the formula and the antibiotic are interacting with each other in a way his gut doesn't like---there is no basis for this theory, it is just a theory. Wed morning he will receive his last dose of the antibiotic, so I know we will be here until then. We'll see how the rest of this plays out.
i am going to go to bed now, it's 9:30 and i am looking forward to some good sleep. I think I have forgotten a few things, so I will probably be adding more as my memory gets better.
After the whole ER fiasco, Craig and I were better by Friday (although I haven't gone to the bathroom since Thursday, so I may have new problems soon)
I know I am going to be getting all my days and nights mixed up as I record stuff, but I will do the best I can.
Thursday night was not a good night. Maddox was retching and throwing up quite often and we couldn't get his feeds anywhere near the rate they needed to be. Friday they decided to change his feeding tube (originally they decided it would happen on Tuesday March 6), but they wanted to see what would happen.
They don't sedate when changing out the tube because it is not painful, however, they had Maddox laying on the table waiting for the radiologist for almost 20 minutes before the procedure began. Maddox was terrified and screaming and crying and it was awful. I have never seen his eyes so scared or large before. Once the procedure began, he was fine and it took maybe 5 minutes tops and there was no pain. After, Maddox was fine. Wiped out, but fine.
That night he tolerated his feeds pretty well and the rate was almost where it was supposed to be. Saturday he didn't retch during the day, but he was miserable. He didn't leave the bed and barely spoke and was very lethargic. That night he woke up around 10:00pm screaming in pain. I have never heard him scream like that ever. It lasted 15 minutes and went away on it's own . Mason was in the room and I could not find the number of the hotel where Craig was. Poor Mason just put his head under the covers and was visibly upset. There was no one to take him out into the hallway. Once Maddox settled, I found the number and Craig was here within 20 minutes.
We stopped the feedings for an hour, then resumed because he was comfortable. Within another hour, he was screaming again, but it wasn't as intense and only lasted 5 minutes. This incredible, wonderful resident came in and she suggested a small dose of ativan. It worked wonderfully and Maddox slept for almost 6 hours straight. He needed another dose of ativan at 6:30 in the morning, but did fine after that. The problem was that he was soooo looped up. He was seeing two pacifiers on his table, one was floating above the other one and at one point he saw two tvs. We stopped his feeds for a bit and slowed them down again so he wouldnt need so many drugs.
Sat night and Sunday are a bit of a blur. I think there was a lot of retching and throwing up and diarreaha. Sunday night we tried a diffferent formula, but it didn't make a difference, so we went back to his regular stuff. Sunday night Maddox needed ativan every 4 hours (at a much lower dose) and zofran and benadryl every 4-6 hours as well to keep the retching down. He retched every 4 hours instead of every 15 minutes. This morning he started throwing up a dark brown liquid (old blood) and a lot was draining from his tube in his stomach. The docs came in and actually saw him retching. I told them how well he does with the feeds turned off and they discussed and agreed to turn off the feeding tube for 24 hours and reevaluate tomorrow morning. The best part was that one of the doctors was able to see Maddox feeling good and she could not believe how different he was. She was floored. Maddox was supposed to not have anything by mouth to give his gut a rest, but after a couple hours he was sobbing for chicken tenders, so they agreed to let him have some bland food.
He ate little bits of cheerios, corn chips, graham crackers, club crackers, and honey kix off and on all day. and he was great! We made a fort, he played all over the room with my dad, went for a walk around the unit, sang, danced and he was imaginative again and was Maddox. Tonight he was sobbing "I want ham and chicken tenders!!!" over and over and over and over, so the dr on call said he could have some ham. He had 3/4 of a slice. Now, Maddox didn't eat nearly enough to live off of today, but he definitely showed some interest in food and showed signs of hunger. 2 very big things for him. He didn't throw up any of the food and didn't feel nauseated either. They cannot figure him out. He is a total mystery.
Tonight I am hoping for a good nights sleep for him. He hasn't had one in so long. I don't know what they will say in the morning. He may get a pic line to get some nutrition in him while we rest his gut some more, or we may just wait one more day before starting up the feedings again. One theory is that the antibiotic he is on is wreaking havoc with his gut (which it can)--but he tolerates regular food ok so that doesn't make complete sense. Another theory is that the formula and the antibiotic are interacting with each other in a way his gut doesn't like---there is no basis for this theory, it is just a theory. Wed morning he will receive his last dose of the antibiotic, so I know we will be here until then. We'll see how the rest of this plays out.
i am going to go to bed now, it's 9:30 and i am looking forward to some good sleep. I think I have forgotten a few things, so I will probably be adding more as my memory gets better.
Friday, March 2, 2012
Awkward
I don't even know where to begin. Last night was incredible.
We had a nurse start 24/7. She sat in a chair at a computer and documented all sorts of things about Maddox. It was awkward, having this stranger intrude on "our space", but was necessary.
Shortly after she began sitting with us, Craig left to meet my dad in Hinkley to get Mason. Shortly after that I started feeling ill. I kept leaving the room to use the family restroom down the hall, but eventually had to use the bathroom in the room. That was awkward, because I was very ill and had the runs. And they weren't quiet. (I am a person who cannot poop in public, so having a nurse sit outside the bathroom door during all of this was mortifying)
I start wondering if I have the c.diff that Maddox has when I start to throw up. It was horrible. I had to use a bucket while in the bathroom, again with the nurse sitting outside the bathroom door. I think at this point she was reading Maddox a story.
I was so lightheaded and woozy I started describing my puke to the nurse and found I couldn't stop myself.(my breakfast came up and this was around 7:00pm, so I was concerned about it).
As I was getting ready to leave Maddox said "I hope you have to get a poke too, so I am not the only one!"
I finally decided that I needed to go to the ER to get checked for c. diff. However it is a looooong walk to the adult ER, and I was pretty woozy, and any walking made me ill, so they ordered a wheel chair for me and a very nice security guard wheeled me down to the ER. With my barf bucket in my lap. I felt like a little kid and utterly rediculous. I asked for a bag to wear over my head, but they didn't have any. Thankfully the hospital was quiet so no one saw me being wheeled down except staff.
When they checked me into the ER theymade me put a gown on. I happened to be wearing my neon green wildcat undies I accidently bought, so I was really hoping I was NOT going to have to be walking anywhere, because the gown did not close well in the back.
Then they took my blood pressure lying down and standing and I guess there was a significant difference so they hooked me up to an IV (Maddox was going to be thrilled) They also gave me a pill that dissolved on my tongue to stop the nausea (that stuff is amazing).
There I was, laying on a hospital bed, in a gown, covered with blankets, and hooked up to an IV while our youngest son was sitting in a hospital room with a nurse he had just met. It didn't seem real.
I ended up being in the ER for a few hours. I had the chills, but stopped barfing and the runs had stopped as well, so they did not think it was c.diff and did not test me for it (I hope they are right).
I tried to get a hold of Craig, but because our cell is a 218 area code it wouldn't work and then I couldn't dial our hospital room number for some reason. It took over 45 minutes for Craig and I to connect. He had no idea I had gone down to the ER and didn't find out until he got back with Mason.
When we did connect, he said that as soon as he got here, he yakked in Maddox's bathroom, and did 3 more times after. That poor nurse. Craig said when she left she wasn't feeling too well either (I wonder why. It's like she was placed in a room full of the Black Plague)
After I was feeling better I started walking back to the room, but first I had to stop at the pharmacy to pick up an ant-inausea medication. They had another security guard/patient services person help me find the pharmacy. It took a while for them to fill the med, so the guard/services person sat with me while I waited. He was very nice and seemed very compassionate, but at the same time, he knew a few too many details about me.
I guess he had manned the info desk on our unit one day and he remembered me and other stuff. He also shared some of his medical history. Oh man, he was nice, I wasn't creeped out, but here I was, getting dizzy and light headed again, Maddox was up in a hospital room, Craig was puking, and Mason was probably a bit freaked out, and I was sitting on a bench with a stranger in the hallway of a hospital. Eventually he had to leave because it was taking so long. Like I said, he was very nice, but it all seemed very surreal.
After finally receiving my meds, I slowly wandered back to our room. When I got to our unit I realized I had left my badge to let me into the unit in our room. and there was no one sitting at the info desk. I jsut stood there delirious staring at the locked doors. I was so close and yet so far. Thankfully there was a family room with a phone, so I was able to call our room. A man answered, but it wasn't Craig, so I was confused (it was our new nurse). Craig was then able to let me in.
Eventually Craig and Mason went to the hotel room and it was me, Maddox, and Jack the nurse (I changed his name), just sitting in the hospital room. I left to put my pjs on, came back and crawled into our couch/bed, tucked Maddox in, talked with Jack a bit, bid him goodnight and went to bed. It was definitely awkward having someone just sitting in the room while I tried to fall asleep.
We had a new nurse every 4 hours and I never had my glasses on and I was talking gibberish with most of them and not making sense. When it was time for my anti-nausea med, I grabbed it and put it on my tongue to dissolve.
Only it didn't. And it tasted horrible.
I waited and waited and couldn't figure out why this pill wasn't minty like the ER pill. Then I realized this was a regular pill, one I was supposed to swallow. That was nasty.
At 1:30am, Craig and Mason returned. Craig said he was throwing up and Mason wanted to sleep at the hospital on a mat on the floor rather than at the hotel with Craig. I found out later in the day that Mason was pretty upset at the hotel because Craig was puking. Poor guy. His brother is having all these medical issues, he comes to the hospital only to find out his Mom is in the ER, and then his Dad gets sick. He'll probably need therapy at some point for this one.
All I could do was laugh about the craziness of it all. I asked the nurses if this was a common occurence for the parents of ill children and they said no it wasn't. Of course not.
We had a nurse start 24/7. She sat in a chair at a computer and documented all sorts of things about Maddox. It was awkward, having this stranger intrude on "our space", but was necessary.
Shortly after she began sitting with us, Craig left to meet my dad in Hinkley to get Mason. Shortly after that I started feeling ill. I kept leaving the room to use the family restroom down the hall, but eventually had to use the bathroom in the room. That was awkward, because I was very ill and had the runs. And they weren't quiet. (I am a person who cannot poop in public, so having a nurse sit outside the bathroom door during all of this was mortifying)
I start wondering if I have the c.diff that Maddox has when I start to throw up. It was horrible. I had to use a bucket while in the bathroom, again with the nurse sitting outside the bathroom door. I think at this point she was reading Maddox a story.
I was so lightheaded and woozy I started describing my puke to the nurse and found I couldn't stop myself.(my breakfast came up and this was around 7:00pm, so I was concerned about it).
As I was getting ready to leave Maddox said "I hope you have to get a poke too, so I am not the only one!"
I finally decided that I needed to go to the ER to get checked for c. diff. However it is a looooong walk to the adult ER, and I was pretty woozy, and any walking made me ill, so they ordered a wheel chair for me and a very nice security guard wheeled me down to the ER. With my barf bucket in my lap. I felt like a little kid and utterly rediculous. I asked for a bag to wear over my head, but they didn't have any. Thankfully the hospital was quiet so no one saw me being wheeled down except staff.
When they checked me into the ER theymade me put a gown on. I happened to be wearing my neon green wildcat undies I accidently bought, so I was really hoping I was NOT going to have to be walking anywhere, because the gown did not close well in the back.
Then they took my blood pressure lying down and standing and I guess there was a significant difference so they hooked me up to an IV (Maddox was going to be thrilled) They also gave me a pill that dissolved on my tongue to stop the nausea (that stuff is amazing).
There I was, laying on a hospital bed, in a gown, covered with blankets, and hooked up to an IV while our youngest son was sitting in a hospital room with a nurse he had just met. It didn't seem real.
I ended up being in the ER for a few hours. I had the chills, but stopped barfing and the runs had stopped as well, so they did not think it was c.diff and did not test me for it (I hope they are right).
I tried to get a hold of Craig, but because our cell is a 218 area code it wouldn't work and then I couldn't dial our hospital room number for some reason. It took over 45 minutes for Craig and I to connect. He had no idea I had gone down to the ER and didn't find out until he got back with Mason.
When we did connect, he said that as soon as he got here, he yakked in Maddox's bathroom, and did 3 more times after. That poor nurse. Craig said when she left she wasn't feeling too well either (I wonder why. It's like she was placed in a room full of the Black Plague)
After I was feeling better I started walking back to the room, but first I had to stop at the pharmacy to pick up an ant-inausea medication. They had another security guard/patient services person help me find the pharmacy. It took a while for them to fill the med, so the guard/services person sat with me while I waited. He was very nice and seemed very compassionate, but at the same time, he knew a few too many details about me.
I guess he had manned the info desk on our unit one day and he remembered me and other stuff. He also shared some of his medical history. Oh man, he was nice, I wasn't creeped out, but here I was, getting dizzy and light headed again, Maddox was up in a hospital room, Craig was puking, and Mason was probably a bit freaked out, and I was sitting on a bench with a stranger in the hallway of a hospital. Eventually he had to leave because it was taking so long. Like I said, he was very nice, but it all seemed very surreal.
After finally receiving my meds, I slowly wandered back to our room. When I got to our unit I realized I had left my badge to let me into the unit in our room. and there was no one sitting at the info desk. I jsut stood there delirious staring at the locked doors. I was so close and yet so far. Thankfully there was a family room with a phone, so I was able to call our room. A man answered, but it wasn't Craig, so I was confused (it was our new nurse). Craig was then able to let me in.
Eventually Craig and Mason went to the hotel room and it was me, Maddox, and Jack the nurse (I changed his name), just sitting in the hospital room. I left to put my pjs on, came back and crawled into our couch/bed, tucked Maddox in, talked with Jack a bit, bid him goodnight and went to bed. It was definitely awkward having someone just sitting in the room while I tried to fall asleep.
We had a new nurse every 4 hours and I never had my glasses on and I was talking gibberish with most of them and not making sense. When it was time for my anti-nausea med, I grabbed it and put it on my tongue to dissolve.
Only it didn't. And it tasted horrible.
I waited and waited and couldn't figure out why this pill wasn't minty like the ER pill. Then I realized this was a regular pill, one I was supposed to swallow. That was nasty.
At 1:30am, Craig and Mason returned. Craig said he was throwing up and Mason wanted to sleep at the hospital on a mat on the floor rather than at the hotel with Craig. I found out later in the day that Mason was pretty upset at the hotel because Craig was puking. Poor guy. His brother is having all these medical issues, he comes to the hospital only to find out his Mom is in the ER, and then his Dad gets sick. He'll probably need therapy at some point for this one.
All I could do was laugh about the craziness of it all. I asked the nurses if this was a common occurence for the parents of ill children and they said no it wasn't. Of course not.
Wednesday, February 29, 2012
These pictures are from our stay at Children's last week:
He wanted to be called Batman then.
Mason came up with a Plan of the Day.
Bath time!
Keeping the IV dry.
Our reader. He devours books.
He was so excited to finish this puzzle. It's a lenticular puzzle and almost gave me a headache.
Snack time before bed.
Getting comfy in his bed.
Mason loved the room service. This is his lunch.
The traditional hospital picture. Maddox opted out of it this time.
He wanted to be called Batman then.
Mason came up with a Plan of the Day.
Bath time!
Keeping the IV dry.
Our reader. He devours books.
He was so excited to finish this puzzle. It's a lenticular puzzle and almost gave me a headache.
Snack time before bed.
Getting comfy in his bed.
Mason loved the room service. This is his lunch.
The traditional hospital picture. Maddox opted out of it this time.
One week
We are going to be here for a week. They are not letting us go home until everything is figured out. Hallelujah!
They are also going to change his tube.
Last night was horrible. The dr said he wanted Maddox to receive his tube feeding and have any nausea treated so he could get some calories and nutrition. I don't think he realized just how bad things had gotten with the vomiting.
They started the feeding at 7:00 and by 7:30 he started retching and having horrible diarrhea. At one point he was in the bathroom doing both at the same time. We used pull ups, but it just leaked everywhere. He was miserable. He was given meds, they tried auctioning, nothing worked. This continued until 3:00am, when the resident finally agreed to stop the feeding. Maddox didn't need any more meds and he slept. He did have diarrhea, but it was very mild, and didn't leak.
It was a horrible night, but everyone saw just how bad it gets. And it all happened just as I had been describing it to them. The nurses couldn't believe it. And the nurses were/are amazing! Oh my gosh. We have been blessed with exceptional nurses and aids. The doctor is also willing to think outside the box.
Today they tried his feedings at a very slow rate, but he started getting sick again, so they stopped the feeding and went to straight pedialyte. He has been tolerating it well and napping peacefully.
My prayer is that all these difficulties lead the doctors to the source of his troubles.
His nurse that admitted us yesterday just stopped in to see how he was doing. She has to work on a different floor tonight, but wanted to check on him.
I am relieved and a little anxious as well.
I am disappointed that we missed the big storm though!! I was so excited for that storm and had plans with the kids. There is only a couple inches here and it looks like a lot of it is melting already. Talk about boring. However, a little "boring" in our life is probably just what we need.
They are also going to change his tube.
Last night was horrible. The dr said he wanted Maddox to receive his tube feeding and have any nausea treated so he could get some calories and nutrition. I don't think he realized just how bad things had gotten with the vomiting.
They started the feeding at 7:00 and by 7:30 he started retching and having horrible diarrhea. At one point he was in the bathroom doing both at the same time. We used pull ups, but it just leaked everywhere. He was miserable. He was given meds, they tried auctioning, nothing worked. This continued until 3:00am, when the resident finally agreed to stop the feeding. Maddox didn't need any more meds and he slept. He did have diarrhea, but it was very mild, and didn't leak.
It was a horrible night, but everyone saw just how bad it gets. And it all happened just as I had been describing it to them. The nurses couldn't believe it. And the nurses were/are amazing! Oh my gosh. We have been blessed with exceptional nurses and aids. The doctor is also willing to think outside the box.
Today they tried his feedings at a very slow rate, but he started getting sick again, so they stopped the feeding and went to straight pedialyte. He has been tolerating it well and napping peacefully.
My prayer is that all these difficulties lead the doctors to the source of his troubles.
His nurse that admitted us yesterday just stopped in to see how he was doing. She has to work on a different floor tonight, but wanted to check on him.
I am relieved and a little anxious as well.
I am disappointed that we missed the big storm though!! I was so excited for that storm and had plans with the kids. There is only a couple inches here and it looks like a lot of it is melting already. Talk about boring. However, a little "boring" in our life is probably just what we need.
Tuesday, February 28, 2012
Sad
I am sad tonight. We are back at the Children's Hospital. Last week we were in our hospital from feb 16 until Feb 20 when we transferred to Children's. We were at Children's from Feb 20 until Feb 23. On Feb 26 we went to the ER at 6:00 am and went back again at 10:00 pm. Today, Feb 28 we were admitted to Children's again.
Feb 16 we were admitted to our hospital because Maddox had a stomach flu and an upper respiratory thing and was dehydrated. We couldn't get him to tolerate his feedings (kept throwing up). That is why we transferred to Children's on Feb 20.
They figured Maddox's stomach doesn't empty like it should, so they kept the tube that connects to his tummy open to drain, while feeding the formula into his tube that leads to his intestine. They also started a medication to help his stomach empty faster. He did great! We fed him with a faster rate, so he was only hooked up for 16 hours rather than 20-24. He stopped throwing up and we went home. He did great at home on Friday and Sat (Feb 24 and 25).
Sat night he kept waking up with stomach pains and they got worse, so we brought him to the ER and they diagnosed him with Clostridium Difficile. This is a colitis (inflammation of the colon) typically brought on by antibiotics (he had a pretty strong one while at the hospital in our home town).
It. Is. Nasty.
On Sunday afternoon Maddox started throwing up, the anti nausea med worked for about an hour. By around 9:30 Maddox started throwing up brown, coffe ground colored stuff and it was draining from his stomach tube (it was blood).
Yesterday and today we couldn't get him to tolerate his feedings, and he has lost weight, so we were admitted again.
They started him on his feeds on a little slower rate, and within 30 minutes he started throwing up. (just like at home). They used an anti nausea med and Benadryl and he still kept throwing up. So now he is hooked up to a suction thing that suctions the stuff out of his stomach. And he is finally sleeping and hasn't thrown up for 40 minutes.
That is where we are at. I know God is in control and He is taking care of Maddox, and at the same time, tonight I am more scared than I have been. I think it's the suction thing. My hope is that all these troubles help to lead the doctors to the cause of everything. I also got my period today, so that doesn't help.
I'll update tomorrow and have some pics on here as well. I just wanted to get everything down before I forgot.
Feb 16 we were admitted to our hospital because Maddox had a stomach flu and an upper respiratory thing and was dehydrated. We couldn't get him to tolerate his feedings (kept throwing up). That is why we transferred to Children's on Feb 20.
They figured Maddox's stomach doesn't empty like it should, so they kept the tube that connects to his tummy open to drain, while feeding the formula into his tube that leads to his intestine. They also started a medication to help his stomach empty faster. He did great! We fed him with a faster rate, so he was only hooked up for 16 hours rather than 20-24. He stopped throwing up and we went home. He did great at home on Friday and Sat (Feb 24 and 25).
Sat night he kept waking up with stomach pains and they got worse, so we brought him to the ER and they diagnosed him with Clostridium Difficile. This is a colitis (inflammation of the colon) typically brought on by antibiotics (he had a pretty strong one while at the hospital in our home town).
It. Is. Nasty.
On Sunday afternoon Maddox started throwing up, the anti nausea med worked for about an hour. By around 9:30 Maddox started throwing up brown, coffe ground colored stuff and it was draining from his stomach tube (it was blood).
Yesterday and today we couldn't get him to tolerate his feedings, and he has lost weight, so we were admitted again.
They started him on his feeds on a little slower rate, and within 30 minutes he started throwing up. (just like at home). They used an anti nausea med and Benadryl and he still kept throwing up. So now he is hooked up to a suction thing that suctions the stuff out of his stomach. And he is finally sleeping and hasn't thrown up for 40 minutes.
That is where we are at. I know God is in control and He is taking care of Maddox, and at the same time, tonight I am more scared than I have been. I think it's the suction thing. My hope is that all these troubles help to lead the doctors to the cause of everything. I also got my period today, so that doesn't help.
I'll update tomorrow and have some pics on here as well. I just wanted to get everything down before I forgot.
Tuesday, February 21, 2012
New Hospital
Talk about a hospital visit from h---. Tonight was c-r-a-z-y.
We were discharged at 3:00 pm, ran home, packed and hit the road at 4:15. Craig stayed home to work, and the boys and I headed out of town.
Talk about sheer exhaustion. We arrived at Children's around 7:00 pm, unloaded the van, carried our bags in, picked up my badge and headed to the 6th floor (per our instructions), checked in only to hear "I don't see you in the system, let me call someone. Maddox then needed to poop, Mason needed to pee. We returned to the desk and I spelled our last name 8 times, Maddox had an accident, got him cleaned up, returned to the desk again with no answers. Then we settled in the family room, Mason with the iPad and Maddox with the large screen tv (have I ever mentioned how thankful I am to live in a digital age?).
After over an hour wait, they discovered we were supposed to be on the 5th floor. Once we were in our room, my cell phone rang. A woman said "is this Jolee? I am so and so, the nurse at Children's, where are you?". I replied, "oh, we have a room now, room 5132, we were on the wrong floor". There was a pause. "which Children's hospital are you at?"
It turns out our nurse accidentally set things up with a different hospital, but the doctor set things up with the hospital we were at (which was the right one).
While sitting around waiting for answers, I looked through our paperwork and it turns out the radiologist at the first hospital we were at diagnosed Maddox with early pneumonia. That was news to us. He was being treated with a strong antibiotic, but no one came out and said he had pneumonia. (an x ray here determined it is not pneumonia).
Maddox needed a new IV put in and a neb treatment, which is so traumatic for him and for me to watch. During the IV procedure, the fabulous nurse we had last time we were here walked around with Mason. She even took him into the "teen room", even though she had be explicitly told not to.
Then to top it off, our nurse gave me some bottom cleaning foam and super soft wipes for poor Maddox's bottom (he has the runs something fierce). I went to clean him up, he didn't want to, but he stuck his little bum in the air for me to take care of. The nurse exclaimed, in a horrified voice, "OH!! That is for when he goes to the bathroom! You don't clean him now".
The boys have been absolutely incredible though. They are amazing. Mason is pretty congested and I feel horrible about that. Hopefully he feels better quick. Maddox is doing well. A bit traumatized, but he still has his spunk and wit.
I am off to bed now.
We were discharged at 3:00 pm, ran home, packed and hit the road at 4:15. Craig stayed home to work, and the boys and I headed out of town.
Talk about sheer exhaustion. We arrived at Children's around 7:00 pm, unloaded the van, carried our bags in, picked up my badge and headed to the 6th floor (per our instructions), checked in only to hear "I don't see you in the system, let me call someone. Maddox then needed to poop, Mason needed to pee. We returned to the desk and I spelled our last name 8 times, Maddox had an accident, got him cleaned up, returned to the desk again with no answers. Then we settled in the family room, Mason with the iPad and Maddox with the large screen tv (have I ever mentioned how thankful I am to live in a digital age?).
After over an hour wait, they discovered we were supposed to be on the 5th floor. Once we were in our room, my cell phone rang. A woman said "is this Jolee? I am so and so, the nurse at Children's, where are you?". I replied, "oh, we have a room now, room 5132, we were on the wrong floor". There was a pause. "which Children's hospital are you at?"
It turns out our nurse accidentally set things up with a different hospital, but the doctor set things up with the hospital we were at (which was the right one).
While sitting around waiting for answers, I looked through our paperwork and it turns out the radiologist at the first hospital we were at diagnosed Maddox with early pneumonia. That was news to us. He was being treated with a strong antibiotic, but no one came out and said he had pneumonia. (an x ray here determined it is not pneumonia).
Maddox needed a new IV put in and a neb treatment, which is so traumatic for him and for me to watch. During the IV procedure, the fabulous nurse we had last time we were here walked around with Mason. She even took him into the "teen room", even though she had be explicitly told not to.
Then to top it off, our nurse gave me some bottom cleaning foam and super soft wipes for poor Maddox's bottom (he has the runs something fierce). I went to clean him up, he didn't want to, but he stuck his little bum in the air for me to take care of. The nurse exclaimed, in a horrified voice, "OH!! That is for when he goes to the bathroom! You don't clean him now".
The boys have been absolutely incredible though. They are amazing. Mason is pretty congested and I feel horrible about that. Hopefully he feels better quick. Maddox is doing well. A bit traumatized, but he still has his spunk and wit.
I am off to bed now.
Monday, February 20, 2012
Holy Hospital Batman!
4 nights. Tonight is our fourth night at the hospital. whew. As far a's hospital stays go, this one has been almost relaxing. At first I thought I was in denial, but then I realized just how worried I was about Maddox and how this has been a relief to have professionals around and to have other people see what we have been dealing with.
Our standard hospital picture (mason was even able to get in on it)---disregard how exhausted I look.
Mason is now getting a cold. I pray, pray, pray he does not get what Maddox had, especially with his mild asthma. (of course Mason is disgusted with his brother for getting him sick)
This is what Maddox looked like for almost a week. Definitely NOT The Maddox.
I think Mason was somewhat relieved he could be at the hospital with us during the day.
Strolling with Nana. They set off the alarms with his bracelet thingy. Sirens were sounding and lights were flashing and they couldn't turn it off right away. It reminded Maddox of Batman's alarm. He was a little disappointed when he realized he couldn't bust out of here.
Sweet, sweet Mason. I miss him. He's been with Nana and Auntie most of the time.
24 hours after IV fluids and antibiotics were started.
48 hours after IV fluids and antibiotics were started.
PlayStation2. Lego Star Wars.
Maddox drew a picture of Nurse Joanie. He drew another one and gave it to her. It's the first real person that he's drawn. I love it.
Half of the loot he has accumulated a's gifts for being in the hospital. I'm waiting for Mason to start telling us how ill he is.
His little IV hand. They just had to pull it out and give him a new one. Talk about a stink! His hand reeked from the plastic board under it.
All tuckered out after the new IV was put in. I detest seeing him in pain and having to go through all the pokes. He has been poked so much this week. But he holds his arms so still and follows the directions. He's a trooper.
Maddox took a picture of himself.
We may be discharged to the U of Mn Children's tomorrow to see if they can figure out what is going on with Maddox.
There is so much more to write, but I am tired.
I will say that until last night, we were the only family here. The only one! We had the royal treatment and had everything to ourselves, and it was oh-so quiet. Tonight there are 4 other families, so it is a hoppin' place. The nurses have all been fantastic and made these 4 nights as enjoyable as possible.
Our standard hospital picture (mason was even able to get in on it)---disregard how exhausted I look.
Mason is now getting a cold. I pray, pray, pray he does not get what Maddox had, especially with his mild asthma. (of course Mason is disgusted with his brother for getting him sick)
This is what Maddox looked like for almost a week. Definitely NOT The Maddox.
I think Mason was somewhat relieved he could be at the hospital with us during the day.
Strolling with Nana. They set off the alarms with his bracelet thingy. Sirens were sounding and lights were flashing and they couldn't turn it off right away. It reminded Maddox of Batman's alarm. He was a little disappointed when he realized he couldn't bust out of here.
Sweet, sweet Mason. I miss him. He's been with Nana and Auntie most of the time.
24 hours after IV fluids and antibiotics were started.
48 hours after IV fluids and antibiotics were started.
PlayStation2. Lego Star Wars.
Maddox drew a picture of Nurse Joanie. He drew another one and gave it to her. It's the first real person that he's drawn. I love it.
Half of the loot he has accumulated a's gifts for being in the hospital. I'm waiting for Mason to start telling us how ill he is.
His little IV hand. They just had to pull it out and give him a new one. Talk about a stink! His hand reeked from the plastic board under it.
All tuckered out after the new IV was put in. I detest seeing him in pain and having to go through all the pokes. He has been poked so much this week. But he holds his arms so still and follows the directions. He's a trooper.
Maddox took a picture of himself.
We may be discharged to the U of Mn Children's tomorrow to see if they can figure out what is going on with Maddox.
There is so much more to write, but I am tired.
I will say that until last night, we were the only family here. The only one! We had the royal treatment and had everything to ourselves, and it was oh-so quiet. Tonight there are 4 other families, so it is a hoppin' place. The nurses have all been fantastic and made these 4 nights as enjoyable as possible.
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