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.
Thursday, April 12, 2012
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.
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