so no real intro today just plugging away... we are entering the "hard days" so brace yourselves...
Thursday May 18, 2000
Well, Lane didn't behave last night his blood pressure was too low for about 10 minutes. it got so low the nurse had to do about 10-15 chest compressions. He obviously doesn't want his chest closed today. After it all happened it popped right back to normal only now his blood pressure is too high. I'm beginning to wonder if he'll ever get a closed chest. Dr Fox was suppose to be here soon hopefully he'll come by and talk to us! He just walked past us so he'll probably come by in 2 minutes since lane Mis-behaved last night. Sheri and I came right at 8am Ben didn't get to bed until really l ate so he'll meet us up here when he wakes up. Dr Fox came by, he didn't have allot of time to talk to us But he took Lane off the pacemaker completely and that made his blood pressure go down quite a bit. his Oxygen levels are a little high but not w/ in worrying levels. Dr didn't have allot of time to talk he had to get into a surgery but he said he'd get to talk to us in more detail later this afternoon. Anyway he looks really good, Yesterday we were thinking his head looked a little grey but this morning he's real pink and his eyes aren't swollen at all. He just looks like he's asleep. I haven't decided who he looks like, he's got a long face and Ben says he's got my nose. He's beautiful no matter who he looks like. I'm just falling in love with his face. I just have been staring at him lately brushing his hair with my finger parting his hair, wondering what he'll be like and what will we be like, will we be too over protective of him, will we be able to let him be a "normal little boy?" I hope we can. Anyway the nurse just told me that they probably will open his chest again today to clean him out and he's also going to put in a central line and replace some of the lines that have been in too long more later...
Well, we are waiting for Dr Fox to be done w/ Lane we think they are only going to clean and replace lines but the anesthesiologist said if everything looked good they were going to close his chest so we'll have to see how it goes...
So, OK they are done, they didn't close the chest because of last nights probs Dr Fox said he couldn't really say when they could close. He said maybe over the weekend maybe Monday he said we needed some stability and we want the best time that we'll have the best chance of not having to re-open. Which is what we want too.. Anyway again I'm starting to wonder if we are ever going to have a closed chest. They started the pacemaker again but Dr Fox said he was pleased with what he saw in the chest. He said it looked real clean and took out some lines and replaced some others etc.Anyway Like Ben's been saying he only seems to have probs at night the BOOGER! Anyway more later...
Well, he had a pretty goo day I left the hosp around 4pm and I called at 6:15pm and everything was still good, lets just hope he sticks that way all night.. more tomorrow...
Friday May 19,2000
We had a good night last night YEA! the Nurse last night was quite pleased with his night and the nurse today is equally as pleased at his day. Dr Aleander was just here and told him to behave! and we all agree!
Anyway I'm finding myself being excited about good nights I just hope I'm not setting myself up for another bad fall. Hopefully he'll do just fine tonight they are kind of taking a hands off approach, today letting him just chill out and wait and see what he does tonight and if he has another good night they'll close tomorrow. Something to really ponder and pray about tonight we haven't been very good about saying our prayers as a family ie: Ben, me & Sheri and I'll have to do better at being the instigator on that front.. more later...
well, it was a good day today, Lane behaved himself the nurse said she thinks it was his best day yet. We are just hoping he'll have a good night tonight, I really think he'll do good But I hope I'm not setting myself up for a BIG FALL!
Saturday May 20, 2000
Well, I did it again, I got excited about his 2 good days and about the possibility of him closing Lane's chest. I'm a little irritated that Dr Fox hasn't come to talk w/ us I really need some answers to what this means for the long term its been a full week since the surgery, whats his thoughts for recovery? I know we can't predict the future but has he seen any kids do this and still survive? no one is really telling us a whole heck of a lot which is frustrating me today. Hopefully Dr Fox will come and talk w/ us soon, I guess its just as well we didn't close today because if he didn't tolerate being opened up well he' surley wouldn't have tolerated being closed well. There's also apart of me that thinks lets just close and see what happens but I guess I know that's not the way to go. I'm having horrible thoughts today, like Will I ever see my baby's eyes open again? it brings tears to my eyes just acknowledging those thoughts but I'm thinking them all the same. Seeing kids w/ other heart surgeries come and go is really getting to me, we've seen close to 5-6 other heart patients come and go to their rooms etc. but we are still here in ICU I'm getting too use to seeing wires and tubes, I'm finding myself longing to change a diaper, to hear him just whaling to be fed or that he's mad or wants changed I'm finding myself wondering if I'll ever got to hear those things.. I'm feeling that maybe he needs another Blessing, I know Blessings don't "ware off" but maybe he needs a re-charge, I'll have to think about that a little more.
Ben had a really rough night he was getting cold chills and was really clammy and woke up w/ a temp of 102.7 so he's staying home to sleep hopefully that will help and he'll be back to normal in no time. Sheri is here w/ me now we'll probably stay most of the day, I really would like to see Dr Fox sometime today! but we'll have to see if that happens.. anyway more later...
Sunday May 21, 2000
Well, we had a couple more set-backs yesterday, about late afternoon Lane's blood pressure started to go down again so they increased his Oxygen to 47% which is more than he's ever been on and put him back on the eppy drug which he was previously weened completely off of. So another minor set back we also found out yesterday that they closed Baby Oscars chest day before yesterday that as a little frustrating because we had always thought that at least we were better off than hi.. though he's still pretty sick he's tolerating his chest closed allot better than Lane. Anyway I really do need to learn that he will do this on his own time in his own way etc.
Anyway I called this morning and he had a good night his SATS are up again and they've weaned him down to 22% oxygen which is pretty much what he's been at so we just need to get through today and see where we are Monday. Yesterday was a bad day as far as my emotions were concerned it seems as though I was crying all day our poor nurse yesterday probably was going nuts having to deal w/ me but she was very sweet and gracious and tried to ease my concerns as best she could; Carol also called, I guess Mom and Dad called her because I kind of broke down on the phone to them and they were concerned about me and Lane etc. but Carol suggested maybe she talking to the Dr would be helpful so she could understand a little better what is going on etc. So I left a note this morning for Dr Fox to page her and she's call him right back. So maybe we'll hear something today hopefully. anyway more later...
Well, we are here at the Hosp, he's having a pretty good day, we just found out that Lane got some blood last night and thoroughly enjoyed his blood. Anyway I guess I'm over my emotional break down yesterday, he seems to be stable again the Dr's are going to try to close again tomorrow I have mixed feelings about that because of his day yesterday but Dr Fox hasn't been by yet today so we'll see what he says more later...
Well, Dr Fox was here and I missed him but Dr Heineke one of the cardiologist is here and he and Dr Fox discussed Lane's condt. they feel that he needs a heart catherization where they go up through his groin artery and take a look at his heart and then inject dye to look at his arteries, its a very dangerous procedure but they need to find out why he isn't tolerating having his chest closed, Dr Heineke said that he took a look at an echo cardio gram and it looked as though one part of Lane's heart wasn't working, like a wall, it also seems as though his blood pressure in his lungs is too high and this new test will give us an exact pressure in his lungs and heart. the Dr also explained that they are listening to Lane to know what to do and he's obviously telling us that he doesn't want his chest closed and now we need to know why. Also, Dr Fox wanted to defer Carol to Dr Heinle since he's actually Lane's Surgeon But said he'd do it in the morning. Anyway this is all a little scary and a little troubling but I'm taking it pretty well, I'm amazed.. I think maybe I'll talk to Ben and see if we can have Bro. Van come give him another Blessing before the procedure tomorrow we'll see what he says.. if all is good I'll call him tonight.
Monday, May 22 2000
Well, Today we find out whats going on there going to do a heart Catherization and hopefully find that either everything seems to be fine OR that the problems that are occurring can be fixed by the surgeons or by adjusting his medicine its pretty scary because this procedure has high risk because lane is so small and also because he's so sick so, we've got double risk. Bro Van is going to come to the hosp at 10 to give Lane another blessing we are so blessed that he is so willing to serve. I didn't sleep very well last night early this morning I kept having unusual dreams, I had a dram that Lane was standing in a cloud of white and asking why I was so upset he was much older and kind of standing above me over my head I don't know what to think of that dream I'll think a little more about it..
Mom told me last night that they printed out the picture of Me and Ben holding Lane and gave one to Hunter, Mom said he's clutching it and won't let it go and just keeps saying Mommy, Daddy, Baby Lane. It kind of brings tears to my eyes thinking of how much Hunter loves Lane. He wants to be a big brother so bad.. I want that too! Dad is talking that maybe they will drive down here for a visit next weekend I'm getting excited to see the boys, almost gitty! I miss them so much!!! but if they do come we are going to do Hunter's B'day so we went and got Hunter B'day presents more later...
Well we are back at the hosp, Bro Van and his Son came in and anointed and blessed Lane today.. the blessing was much different than any one before he talked about Lane having his OWN free agency and how the Veil hasn't been lifted completely yet and how he must CHOOSE to do fight and blessed him that he would choose to do so. ...... (omitted content) Bro Van also blessed him that his parents would feel comfort and gain the strength needed to endure this time. more later...
Anyway, he's in the cath lab now and they are having a hard time getting a line to get the cathader into which they've had problems before..
Both Dr Fox and Heinle both came and spoke w/ us today just to touch base they said they didn't have a prob calling Carol but they wanted to wait until they get the results from today
In the blessing today Bro Van blessed that the Dr's hands would be guided and that the procedure would be successful and that the Dr's would even comment how well it went.. Dr's here will write more later...
Tuesday May 23, 2000
Well another NOT great night!
Wednesday May 24, 2000
well, things were so crazy yesterday that I didn't have a chance to write much, so I'll fill in all that's happened the catherization showed that there is a portion of his heart that was damaged at some point ie: prior to surgery, during surgery or after surgery. What ever the case its effecting the squeezing of his heart and right now his heart is squeezing at less than 50% of what it should be. So theres nothing surgical that can be done, all the Dr's agree that they are not ready to give up but that thinks don't look good! They originally tried a medicine Melranone But Lane didn' tolerate it well at all so they took him off of that and are giving him Nitro Glycerine instead and he seems to be tolerating it OK. It makes blood pressure low so thas the prob we've run into that and the blood oxy levels have not been great. So we had kind of a hectic night we called every couple of hours to check on him, this morning he's still not great, not even good but his heart numbers were a little down (which is good) from yesterday, but the prob today is that he's not peeing well and his pulses aren't as good as they've been, so he's swollen and they can't have him like that in order to close his chest, he's real ashey looking and not pink at all, so they are trying some different medicines so they can try to wean some other medicines but he's on an awful lot of stuff so he's still is a VERY VERY sick boy. the Dr's tell us though they aren't ready to give up yet the odds aren't in his favor. I called Mom and Dad this morning to tell them whats going on, they understood pretty well, Dad asked about a Heart Transplant I told him I didn't think that was a reasonable option because he's so sick.. I was pretty straight w/ them that things DON'T LOOK GOOD so we are just going to get through each thing as it comes.
Last night Ben and I talked a bit about weather or not I'm ready if "the worst" happens, I told him would have no way of knowing if I'm ready until it happens but that I've thought about it allot I've thought about what we'll tell Brad and Hunter and I've thought about having to make the arrangements for a funeral but I haven't closed my self off of thinking about if he survives. But I feel like my arms are being pulled in different directions one arm is pulled towards visions of him going to Kindergarten and showing his scar for show and tell and the other is thinking of how I'm going t olive with out Lane. So right now that's the best I can do. Ben and I kind of got after each other last night and we even talked about that; that we are going to need each other more than ever no matter what happens and we need to pout forth the extra effort not to do that especially over sill petty stuff so I'll try to do better...
Well allot has happened today, Dr Heinle called us into a room today and discussed Lane he was very frank and said he didn't like what Lane looks like today, he was having little to no urine output and he was very swollen and looked grey and ashey, he discussed the possibility of he and Dr Fox going back in and taking a look to see if there was anything they missed ie: kinked artery something they could fix BUT he (dr heinle) wasn't optimistic AT ALL on finding anything he was sure the surgery would probably kill him he would have had to be hooked back up to the heart and lung machine which the possibility that his heart wouldn't start again was very high. So we've decided NOT to do the surgery, NOW WHAT? he still wasn't going good at all his SATS were in the 50's and his BP was falling again, so now we are discussing what to do now we are seriously thinking of withdrawing medical attention though Dr Heinle wants to see what he's going in the morning because his SATS & BP were up and he started peeing a little more so now we are still in a holding pattern.. Budd and Sam and My Parents and Grandma Merry are all flying in tonight to be here when we make the decision.. Anyway there we are its been a real hard day, my eyes feel like two boiled onions and my head hurts ALLOT!. anyway more later...
6:15pm called hosp and BP and SATS are lower than when we were there; but everything else is same will call again in a couple of hours
8"35pm called and the low Sats and BP didn't turn into anything his BP&SATS are both in the 70's his urine output on last check was 12 so that's not bad will call again in a few hours..
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