Monthly Archives: June 2008

***Sandi today….

Current mood: aggravated

Okay…Thursday night Ed kicked me out of the hospital to go home to get some sleep and visit with Shana thinking it would get my mind off worrying about Zack but he noticed that I stopped off and got a pass (just in case I changed my mind at some point during the night.) so he called home to make sure that I was there. We visited- I yacked on the phone- and did honestly try to get get some sleep but still doing the ‘combat’ sleep. Ed called from the hospital on Friday morning and said they’re releasing Zack so come up and get them. By the time I’d gotten there Zack was coming out of the bathroom from getting dressed and made to the bed and said he was going to be sick so I put the pan down just in time. Ed went to get the dr. who said to give it a couple of hours and in the mean time take Zack outside for a walk to get some fresh air. We got to the elevator and Zack leaned up against the wall and slid down- so went back to the room and let him rest a bit then tried to cruise around the floor. He was walking quickly anxious to get back to the room to lay back down. The nurse took his blood pressure lying down then again when he stood up and the numbers had jumped up quite a bit when he stood not to mention the color seemed to drain from his face-they said that was normal??? More time passed several more people in and out of the room until we got a resident who basically told us that there was a chance that Zack had picked something up there in the hospital so we could stay there and basically do nothing or go home and do nothing…they put Zack in the chair and he began shaking and crying because it hurt so much yet they tell us there’s nothing left for them to do. Now by this time as a mother going very little sleep- hardly any food that stayed down- I was irritable aggravated and just right pissed off. I turned around and looked at Ed and I told him- “I told you from the very beginning the f@ken diagnoses is a bunch of b.s. My son is sitting here in pain completely miserable and we’re relying on these people to make him better yet all we’re getting is a run around and bogus diagnoses when what they’re telling us completely contradicting to the experiences from other people who are dealing with this still because there’s no informative stuff about this confusion diagnoses. They can’t come up with what’s going on with him so lets slap a name on it call it good- and move on to the next person instead of continuing to find out what the underlying problem is. So if all they’re gonna do is give him drugs I can do that home- if he continues to get worse then we’ll go to another hospital that might actually do something! Because somethings not right- I can feel it in my gut!” I told him I was going down for a smoke because at that point I beyond pissed off. He wasn’t too far behind me after having his own thing to say to this resident when she began patronizing him. Once we came back we told the nurses that if all they’re doing is buying a couple of hours at a time with the intent of sending him home anyway then just give us the papers to send us home. By then a new pediatrician was on duty and came in to find out what was going on and we told her about the residents attitude/behavior and I told her that the resident ain’t got no business being a Dr cuz her bedside manor sucked- Ed’s like it has more to do with her personality and I said well that sucked too. The new pediatrician called the neurologist who said that Zack was to go home even if he was still throwing just give him a shot for the nausea to get home so that’s what they did. They gave us 2 new prescriptions- Ibuprofen (800mg) and Zantac to coat his stomach so the Ibuprofin wouldn’t eat his stomache lining. OK- I go to the pharmacy to get his meds and some pediasure to give him his dose at 9pm. Next morning I went in there and Zack says he’s feeling better I give him his meds just as I was instructed to do…by afternoon he was throwing up again even water wouldn’t stay down and dealing with yet another headache. So Ed took him back to the ER after grounding me home (due to the episode with the resident yesterday) and has returned home again with Zack looking and feeling better. Now the ER is saying that his meds were way too strong for Zack and that’s probably what was making him sick. These are the people I trusted to make my child better- not to make him worse. So it’s probably a good thing I didn’t go with back to the ER because I probably would’ve said even more. Grrr!!  Very frustrating! We’re hoping for a better day tomorrow- I’ll probably do another night of ‘combat’ sleep because I’ll be up and down checking on him all night again just to be sure he’s ok and not still throwing up for my own peace of mind. To top off the day- Nick began pulling more his b.s. as well throwing one his temper tantrums only adding fuel to an already well lit fire by deciding to run off down the road. Kids!! I swear that I’m on the verge of my own mental breakdown so I’m beginning to wonder if I should put the local psych ward on alert to get the straightjacket ready so I can get a vacation…

**Sandi had this on her myspace blog yesterday :]

Current mood: refreshed

 Wednseday once Zack was taken out of the ICU and placed in a regular room a new fear took over. I was thankful to be out of the ICU but began realizing that he was acting strangely…Guess the best way to describe it was that he was acting mentally retarded. His speach was all off and very hard to understand. We asked if it could be a permanent side effect but they didn’t have any answers for us. So we paced and worried some more. Of course I’ve ‘rested’ at the hospital when I could not wanting to be away for too long. Ed had even sent me home to sleep but I was so restless I just showered and went right back up to the hospital. Yesterday Zack was doing better and definately coming back to being hiself-and we’d hoped he’d be able to come home but his back still hurts from the spinal tap and in the afternnon he’d develpoed another headache so the Dr. wanted to keep him again especially when we noticed he was trying to prevent another neck spasm by rotating his head to be in control of it. He’s done a lot of sleeping…poor kids body has been through a lot though. Dr’s diagnosed him with confusional migraine- I did some research on it but because it’s so rare I got very little information on it but instead read some personal stories that really concerned me because it contridicted a lot of what the DR had told us…for example- we were told that it most likely won’t happen again but the stories I’ve read people had gone on to have multiple episodes. We were told it’s a child thing but some of the stories came from 16-24 years olds dealing with it as well. From all the stories I read it takes a few days to recoup from the episode itself but on top of that Zack has to recoup from all of the trama of the hospital doings as well. I’ve got mixed feelings- some of the stuff that I’ve read nobody had had the extremeness of what Zack seemed to have experienced- I didn’t read about anyone else being put on a breathing machine or some of the other things he’d gone through. So I feel as if we’ve got this diagnoses but still don’t really know what had happened- what is happening or what could happen in the future. It is very frustrating especially for Zack who has begun to ask questions and wants to know what is happening to him too- he knows that something happened. He remembered me telling “fight baby, you’ve got to fight” in the ICU and he told me “Mommy I fought for you.” I’m so very thankful for everyone’s prayers and your thoughts being with us that words can’t even begin to appreciate all of you being there for us in your own ways. Thank You so very much!! When Ed came up last night he kicked me out for the night- but he seen that I got a pass to come back in -JUST IN CASE. My Neice came up from Indiana to help with the other kids so Ed called her to make sure that I was home and that I stayed home last night. I slept- in the beginning I was still just resting being aware of what was going on around me but when I did finally begin to really fall asleep I’d jump up confused of where I was looking for Zack’s bed. At one point I almost just got up and went back to the hospital- yelling inside my own head that I should’ve just stayed up there but then having this discussion with myself in my head of how I need to go back to sleep and at least try to sleep. At some point I did finally drift back off for a little while. Some of you have grown concerned about me knowing that when stressed I don’t eat- I’m doing what I HAVE to even if it’s eating a few crackers once I’ve gotten to the point of being light headed. But food isn’t setting real well in my stomach these past few days no matter what I eat- I am trying though. Once I get Zack home I’ll do better…I promise. But right now it’s not about me- it’s about Zack and I’m doing what I need to for him. I wouldn’t intentionally put myself in danger when not just Zack but all of my kids still need me around to pester and be a fun-sucking mom.  I have no intentions of going anywhere anytime soon! Ok- well I’m goin to get a shower and get back up to the hospital to see what’s going on today- Hoping to bring my baby home! I’ll keep you all posted.