Mon-Wed May 15-17, 2000

So my mood was much better yesterday so maybe the first day was due to re-reading the hole journal etc. who knows!!! so here is another day.. my plan is to write it in its complete form BUT I have to give a disclaimer here, we are getting into some very personal stuff from here on out.. there are things in my Journal that are just too special and in some cases SACRED to share in this public forum and for that I'm not apologizing, not too sure how I'll handle those moments but just know I'm trying hard to share my experiences, thoughts, feelings of that time but know for those who love me that I'm NOT exploiting this one bit... OK on to

Monday May 15, 2000
Well today is closing day, I didn't get a chance to finish yesterday the Dr was really pleased with how Lane was doing he disconnected the Pacemaker "YEA!" and Lane was "doing it all on his own!" so this morning around 7-730 they are going to close his chest they will close and then see how he "likes" that and then they'll start weaning the paralyzing drugs after that so he'll probably not wake up until tomorrow afternoon etc.
Oh I didn't say anything yesterday, the xxxxxxx's (home teacher's name withheld) came by the Hosp yesterday, it had to be a real short visit because Dr Heinle was on his way to talk to us. I don't know what they were thinking they didn't call or anything and they just walked into the ICU unit etc. I'm  not sure I handled it the best way BUT really who does that? doesn't call to see IF we can have visitors or what time etc.. thank goodness the Bishop said he was going to work on changing our Home Teacher assignment!
we are all back to the Hosp they've started to close his chest so hopefully all will go well...
Well, its not going as well as I would have hoped they had to re-open his chest evidently his heart rhythm was doing what it was doing before they hooked him back up to the pacer but his stats were still to high so we are back to an open chest.  I am very frustrated today Ben and I weren't getting along but we were both taking too much offence to what each other were saying it just came to a head when I called to check up on Lane I was already teary because it was tense between him and I and when Mandy the nurse was telling me what was going on and that the surgeons were on standby I just broke down and had a real hard time keeping it together enough to get through the phone call. I rushed to the Hosp where Sheri was already there,  Sheri called while I was on the road Ben told her I was in very bad shape and asked if she would help me not to over-react.. I got off the elevator and I saw the signs on the NICU saying the unit was closed and I knew they were cracking his chest again.. it feels like we are taking 2 steps forward and then we take 3 steps back.. I keep thinking in terms of how much this is going to set us back as far as us being able to take him home.. That's probably not the right attitude but that's how I've been judging everything.. I guess I need to re-think that.. there is a new boy next to us, he's 17 he had a blockage in his heart, this is the 2nd blockage he's had evidently he was scheduled for Friday but they re-scheduled him for today so they could do Lane's surgery.. he's already awake I was surprised, I guess they closed HIS chest right away etc. Baby Oscar still isn't doing to good, they are talking to a pastor or something she (the pastor) keeps saying "have enough faith and he won't need surgery", I don't think that is right to tell someone that; this is a prob that isn't going to fix itself and its great to have faith and pray but they are having faith and praying for the wrong thing, they need to be praying for his kidneys and liver to heal so they CAN DO the surgery.. Anyway I get to go back in a few minutes to see Lane I guess I'm not going to stay the night because the only reason I was going to was because the surgeons were on stand by to open his chest again and I wanted to be here when they did it but its done now so I'll see how he is and probably go home to sleep.  Anyway I told Ben I didn't think I could handle all this up and down but I guess I'm handling it what else can I do?..

Tuesday May 16,2000
Well, I think I'm doing allot better today, I got a pretty good nights rest and its amazing how much better things look after sleep, I also took a long hot bath this morning it gave me some time to think about allot of things and remember all of the things to be thankful for. I came to realize that Lane is a very special boy and I think maybe Ben and I have to go through this to prepare us for whats to come ie: if we can get through this we can get through anything.  I also had another thought that we are going to have quite a talk to give at his mission farewell, that just made me giggle, I could almost picture it; him grown, tall and Ben and I reflecting on this moment and me looking back on this journal and realizing how lucky we are to have him! I'm sure we'll have many more experiences before his mission to realize how lucky we are.
Anyway I wanted to write those things down while they were still fresh in my mind
Lane's Condition: he's doing allot better vs. yesterday they opened his chest and everything seemed to go back to normal levels he's off the pace maker and was off it since just after they opened him back up last night Dr. Alexander just came by and said they are going to see what he looks like in 24 hours and go from there. he put him back on the pacemaker just to give him a rest, he didn't really need it but it might help him get a rest and they also lowered the oxygen levels and all seems OK so far.  i just talked with my Dad he said Mom got on the Internet and found some sites pertinent to Lane's condition Dad was going to have mom e-mail me the sites.  It looks like his SATS are a little high they are keeping an eye on that now. Velia from Church was going to come by today, she's so nice, she's probably the only one who REALLY knows remotely what I'm going through her little girl had a couple of holes in her heart and some arteries that weren't big enough etc. so way different problem but same situation (heart issues)
Baby Oscar is having surgery tomorrow which is good, they (baby Oscar's family)  got into a hotel which is good they (which amount to 20-30 people) they are getting assistance from Social Services which is good. Anyway Dr Heinle is going out of town tomorrow so Dr Fox is going to take over from here he'll look at how Lane is doing and see if he can try to close his chest tomorrow. I just called its about 9:30pm and nothing has changed he's doing good right now. so asleep with the phone I go (its the 3rd person in our bed don't ya know!)

Wednesday May 17th 2000
So this entry starts with 2 pages of rambling about a conversation Ben and I had late the evening before.. Ben had some VERY STRONG impressions that night that woke him up he wrote them down (as he was impressed to do) I actually STILL have that list in this journal.. this is where things are getting to special to share.. this is what I will share, his impressions were regarding Lane, and our family and we as a couple and that even in our most vulnerable we had to stick together no matter what.. that he saw some things confirming what we had felt that the veil was very thin and that this would not be an easy road but we had to wrap out minds around ALL possibilities for Lane's future, he asked that EVERY time we pray we ask for guidance and COMFORT to know what to do..

we are here at the hosp now, they opened him up and cleaned him out, his heart rate is a little high right now but they don't seem to be too worried about it, his oxygen levels just fell a little bit but came right back up so again not a whole lot to worry about.  Baby Oscar go this surgery today, Dr Fox came and told his parents they feel the surgery was a success but his still very sick little boy he said to expect allot of Bumps along the way it must be frustrating for them and I thought Lane was frustrating ! There's a new baby next door to us, she had a small repair, probably a hole in her heart, she had surgery yesterday and she's already awake and they are starting to feed her today. WOW what will that be like to feed him Ben asked Dr Alexander today if Lane being asleep for this long could affect his brain and he assured us that no he should be fine.  I am tired and I didn't sleep well/long last night I was reeling from what Ben said last night..........
Anyway, Lane has a new nurse today, I haven't even see her before, I don't think I like her but its probably not her fault, she just doesn't have as good personality as the other girls.  also she (the nurse) is in charge of Lane AND the baby next door so it concerns me that she has to split her attention when always before he had his OWN nurse.  But he's doing just fine I guess I'm just being overly protective.  Anyway they are suppose to have 10 cardiac patients in the PICU by the end of the day today, that is amazing to me, I've had an overwhelming feeling today that Lane was going to be OK after last night in talking w/ Ben I was afraid I would get the opposite feelings but I haven't but I will do as Ben asked and pray for comfort to accept what could happen. But I can't bring myself to dwell on it I've had thoughts on what I would do etc. but no more than that..
its about 9:15pm I just called everything is the same which is good, there talking about closing tomorrow or Friday Dr Alender was talking tomorrow and Dr Fox was talking Friday so we'll just have to see how it goes.  Anyway I'd better go to bed I'm really tired.