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.
Monday, March 5, 2012
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.
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