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!
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