Thursday, March 30, 2006

Adjusting to life without Alex

THURSDAY, MARCH 30, 2006 12:38 PM, CST
What is normal? We are really trying to figure out what 'normal' is for our family now. It seems like the past year is just such a blur, trying to conceive Alex, the pregnancy was so boring and uneventful (haha, little stinker) and the roller coaster ride that has been 2006.

I feel like we are adjusting well. I feel like we have really grabbed ahold of the lessons we've been taught and are starting to implement them into our lives and you know, life is really a whole lot less stressfull when you stop trying to direct it and just LIVE it. Things that use to seem like such issues are now just so trivial although Craig still is in his 'must worry about the little insignificant things so I don't have to consume myself with the big ones' mode of thought, but he'll come around.

Some days are good. Some days not so much. Sometimes we'll have a day that seems good and then something out of the blue will smack you upside the head and send you spinning for an hour or two until you work through it, shed your tears and find that place in your soul where it's ok again. I don't like being knocked out of my 'happy place' I must say. But I know that these moments are needed, they are part of the healing process and if I don't have them now, they will come back to haunt me later.

People have started asking THE question. You know the one, the one you are thinking right now....

Are we going to try again? Then answer to that is that it is not for us to say whether or not God has more children planned for us. I figure if I can leave my precious sons life in Gods hands, I can leave a lot of other things there too. So, who's to say what the lord has in store? We aren't rich people but the old 'Ask and ye shall receive' hasn't failed us yet and I don't think God intends to start. So many people dwell on what they can't provide and tend to forget that children aren't expensive, lifestyles and keeping up with the Jones' is what will get you.

Are we afraid of repeating the process? Terrified. But that's not our call to make. We have faith in God's almighty plan and he alone knows what is best for us in our lives.

I've been told by a couple of different people that I should write a book about the lessons that Alex has taught. Someday I might. I plan to keep updating this site and getting it all out as it comes and then someday I'll see what I'm called to do with it. I know Alex's life has and will continue to impact many people, I just need to find the direction that I am suppose to go with it.

Yesterday Craig, Jack, and I stopped at the cemetary on our way back from grocery shopping. As we were leaving I said 'bye bubba' Craig said 'bye buddy' and so Jack says 'bye bubbie' it was rather cute. Jack seems to have a better handle on it all now. He told us that baby Lex is sleeping in heaven with Jesus. We've been talking a lot about heaven and God and things and I really think he's beginning to understand.
The other kids seem to be doing remarkably well. Shaylin I've noticed has regressed a bit. She's now afraid of the dark and gets frustrated very easily, she's at that age where she is just beginning to realize that she is an independant person from us and Alex's death I think has made her realize her own mortality, that it's not just old people that go to heaven, sometimes children do to. What a hard lesson to learn at her age.

Monday, March 27, 2006

Losing Alexander 3-27-06

MONDAY, MARCH 27, 2006 01:19 PM, CST
Some days are harder than others. I've found that Alex's life has brought me so much closer to God than I was. I remember on that Monday walkingn to the hospital just feeling terrible about things after Alex's rocky weekend when I just stopped in the middle of the sidewalk in front of the hospital, threw my hands in the air, looked up to the heavens and said out loud 'I give up God, I quit trying to be in control! Let's do this your way' 3 days later he called Alex home. Now I could get angry about this, that I gave God control and he took my child from me..... but instead I feel like rather than taking my child from me, he ended Alex's suffering and took him home. My fight for control with God was only harming my son.

We are going to try to get a copy of Alex's hospital record. I'm sure it will raise a lot of questions but I really feel the need to know the answers to some of the questions I was too afraid to ask while things were happening. I also feel like we need to know as much as we can about Alex's condition, for our sake, for the sake of people we might be able to help in the future, and for the sake of any children we may have yet unborn.

I've had a lot of people ask me what was the main issue with Alex, the issue that he could not overcome. Although we declined an autopsy, we are quite certain it was diastolic heart failure caused by his hypertrophied ventricle (small and stiff). Which caused something called Diastolic heart failure.. Here is a bit of info on it

'Diastolic heart failure occurs when the heart is unable to receive blood normally. The cardiac cycle is divided into two parts - systole and diastole. During systole, the ventricles (the heart's major pumping chambers) contract, thus ejecting blood out of the heart and into the arteries.

Sometimes, however, due to various medical conditions, the ventricles become relatively 'stiff.' Stiff ventricles cannot fully relax during diastole, and as a result the ventricles may not fill completely, and blood can 'dam up' in the body's organs (mainly the lungs). An abnormal 'stiffening' of the ventricles, and the resulting abnormal ventricular filling during diastole, is referred to as diastolic dysfunction. When diastolic dysfunction is sufficient to produce pulmonary congestion (that is, a damming up of blood into the lungs), diastolic heart failure is said to be present. '

Also, people have asked what Alex's heart problem was. I may have explained it early on in his life, as I understood it but now that I understand more, I can give you a better explanation.

Tetralogy of Fallot, pulmonary atresia, absent pulmonic valve

Alex had the most rare and most severe form of TOF. The traditional definition of it is the 4 anomolies:

Pulmonary stenosis- a narrowing of the pulmonary artery and/or valve

VSD- Ventricular Septal Defect. A hole between the 2 lower chambers of the heart, the ventricles which allows oxygen rich blood and oxygen poor blood to mix together before being pumped to the body, giving the telltale 'blue baby' symptom.

overriding Aorta- The Aorta, the artery that pumps blood to the body, is positioned centrally over the VSD

Right ventricular hypertrophy- Stiffening of the right ventricle caused by thickening of the muscle wall

Children with TOF have a boot shaped heart.

Alex's diagnosis was a little varied from this. He didn't have his pulmonary artery, so of course he didn't have the valve either. The PDA or Patent Ductus Arteriosis that fetuses use to circulate thier blood until they are born and thier lungs begin to work is the main, sometimes only way to get blood where it needs to go. This PDA closes normally within the first week or two of life, as the lungs do thier job which is why we noticed Alex having trouble 14 hours after birth, his PDA began to close. Some children have 'collaterals' which is extra arteries the heart grows when it detects an error in design. From what I know, Alex didn't have any, or only a few of these that didn't help him much.

There are some chromosomal abnormalities that can be associated with TOF, and are more frequently associated with severe forms of it. Alex did not have those chromosomal abnormalities so chances are, his heart problem was a fluke and won't repeat itself in siblings or future generations. However, since science hasn't yet uncovered a specific gene for heart defects, it is possible there is some genetic tendancy so our risk of having another child with a heart problem are 2-3% as opposed to 1% which is the risk of the general population.

Saturday, March 25, 2006

Losing Alexander 3-25-06

SATURDAY, MARCH 25, 2006 12:33 PM, CST
Yesterday was a bad day. They 'why' demon crept up on me and stuck around most of the day. I know I can't give in to they 'why' because there isn't an answer to that question that I can know until the day I see God and Alex in heaven and then i'm not sure it will matter.

I got a wonderful card today from the social worker we worked with at the hospital, it really warms my heart when people say that they could see our love for Alex and I hope that he felt that too. Apparently Alex was her first PICU kid and she said that her experience with him taught her a lot and will always influence the way she deals with families in her work, and the way she is with her own family. It's amazing how many people such a little guy influenced.

I'm still struggling with my feelings, as is probably to be expected. Most of the time I am just so grateful, I'm sad that he died but I'm grateful that he lived. Some of you know that Alex was the result of a successful vasectomy reversal, he was a miracle from the start. Sometimes that makes the WHY demon come out thinking about it, because he was so loved, planned for, and wanted.

I think one of the big things I've learned is that the people in our lives aren't ours to keep, they are on loan for a while, some of them many years and some only minutes, days, or weeks. Appreciate them and let them know how much you do. And take all of the lessons they are here to teach and learn them. And when they are gone, be grateful that you had the opportunity to know them. After all, it's better to have loved and lost than never to have loved at all.

My Dream

If I could have some fairy dust
To make my dreams come true
I'd take it with me in my sleep
So I could dream of you

I'd dream I were an angel
If only for one day
So I could be in Heaven
Just to spend the day with you

I'd tell you how I loved you so
And miss you oh so much
And how just for a little while
You were mine but not to keep

I'd hold you oh so very close
But then I'd have to go
You see my little Angel
You were my gift but not to kep

I have to say night night now
It's time for me to go
But this feeling in my heart for you
will never go to sleep

Friday, March 24, 2006

Losing Alexander 3-24-06

FRIDAY, MARCH 24, 2006 11:51 AM, CST
It's been 8 days. I can only be thankful for the fog I've been in because it has made time pass quickly. I'm still throwing myself into everything, I've researched every medication he was on, every symptom he had, the thank you cards are finished and either mailed or sitting on my desk waiting to be mailed.

We packed up the baby things yesterday. It wasn't as hard as I imagined. The fact that he never came home to use any of those things has spared me some because I can convince myself that since he didn't use them, they weren't his. The house appears so empty now though, aside from the plethora of flowers and plants in every room to constantly remind us that he isn't here.

We visited the cemetary yesterday. Oh how I can't wait until the grass has grown and his stone is laid. To go out there and see the dirt and the peice of wood laying over where he lays disgusts me, like he was thrown in the ground and covered. We brought his big tigger that was won for him at bingo by a little girl at the Ronald Mcdonald house, Autumn. It melts my heart how she won it and gave it to Alex.

I still wake up every morning and think of my walk to the hospital. I retrace the route in my mind, feel the snow under my feet and the wind from the river on my face. I see the university students rushing to class and the huge buildings of the hospital and it's ajacent medical buildings. I remember the smell of the place, that distinctive hospital smell and hear the sounds of the elevators. I remember walking into the PICU and seeing all the familiar faces, walking into his room and saying my usual 'good morning bubba, I love you' and rubbing his fuzzy head. I still feel the fuzz of his hair.

Then my mind wanders back to today and I realize that all I have left is pictures, pictures in my mind and on the wall. He will never be forgotten but I feel those precious memories slipping away every day and it makes me sad.

At the bible book store I found a card with his name on it, it says:

'helper of mankind'

Have I not commanded you?
Be strong and of good courage:
do not be afraid, nor dismayed, for the Lord
your God is with you wherever you go.

Joshua 1:9

Sunday, March 19, 2006

Losing Alexander 3-19-06

SUNDAY, MARCH 19, 2006 10:13 PM, CST
I can't figure out how I'm 'suppose' to act or feel. As a mother I think a lot of us think about losing a child, about how that would be and how we would feel but so far I'm just in a fog. Sometimes the emotions come strong and I'm left sitting on the floor sobbing and feeling physical pain in my heart, other times I'm laughing and remembering those long weeks in the hospital.

Today I've been calling everyone a 'bad egg' remembering nurse Lori and how she'd point her finger at Alex and say 'your a bad egg mister'. It made me giggle then and still does. People must think i'm crazy, off my rocker.

I miss Alex, I miss the people at the hospital that we had come to know and feel like I've not only lost a son, but an entire family. I've been running at mach 20 for 7 weeks and now that were home without him there's nothing to do, I feel lost.

Just like always, Craig and I are opposites. He cannot stand to read Alex's guestbook, or look through the things from the hospital. I on the other hand have thrown myself into it all, organizing his things, researching heart defects, posting on message boards.

Even though Alex gave us signs for days that the end was near, and I saw those signs and I think without realizing, prepared myself somewhat; his death still came as such a surprise. It was so fast. It's so hard to beleive that 4 days ago he was here, and then in the blink of an eye he is gone.

I think about the night before he died. I was at the hospital and I spent more time than usual at his bedside ( I tended to spend a few minutes touching him, then sit in the rocker and watch him, and repeat this process over and over) . I touched every part of him that I could through that evening. He seemed so at peace. A little tiny speck in my mind thought something wasn't right. His sats were bouncing around and I thought his fingers looked duskier than normal, his fingernails were a deep purple. It didn't occur to me that the next time I would see him would be to see them doing chest compressions on him.

I feel a lot of guilt. I regret that we didn't bring the video camera to the hospital and videotape every moment of his life. I regret that we didn't take more pictures. I feel guilty that he was born 4 weeks early, maybe if he had those last 4 weeks to grow he would have been stronger and better able to fight. So many things I would have tried to do differently had I only known.

I am grateful for the time we spent. God was so patient with us, waiting until we had learned some valuable lessons before he took Alex home. Alex was so patient with us, hanging on until we were as ready as we ever could have been to deal with this pain. I know 2 months ago we were not strong enough to live through this, Alex made us strong enough.

Yesterday we made funeral arrangements, tomorrow we pick out his stone. It is so surreal. The pastor told me we haven't begun to grieve yet, we are still in shock and that scares me. It scares me because the emotions are so strong, the pain is so raw that I don't know what Ii'll do if it gets worse.

I feel at peace in some ways. When I was running to the hospital that day I knew he was passing. When it happened the pain I felt was so extreme I thought my own heart would stop beating then and there. Then as the day went on I felt this overwhelming sense of releif. Releif that he wasn't huring anymore and I still feel that. I feel him all around me but no longer have to see him hurting, see his wounds and the constant oozing of blood from one site or another. He isn't hurting anymore. All he knew in life was pain and that has finally ceased, I'm grateful for that.

This peom will be on his memorial...

God saw you getting tired
and a cure was not to be

So he put his arms around you
and said 'Alexander come with me'

With tearful eyes we watched
And saw you fade away

Although we love you dearly
We could not make you stay

A special heart stopped beating
Your body it did rest

God broke our hearts to prove to us
He only takes the best

Fly high little bubba, fly high.

Thursday, March 16, 2006

Losing Alexander 3-16-06

THURSDAY, MARCH 16, 2006 10:48 PM, CST
Alexander passed away today. Craig called me from the hospital at 11-ish and told me that Alex's chest x-ray had come back better (his right upper lobe was cloudy last night) and that he had one blood pressure dip and they got it back up.

About 10 minutes later I got a phone call from a nurse saying Alex had taken a turn for the worse. After running in my pajamas through the snow to the hospital I walked into his room and there were many doctors and nurses. I asked if he was coding, and they said yes. A couple ofo his doctors took Craig and I to another room and said that they were waiting on the results of an echo and x-ray. We all knew they wouldn't show anything that could be fixed, Dr D was even tearing up. They said to give them 5 minutes and Craig and I went to call some family.

We came back into his room and as expected they told us that the tests hadn't revealed anything. We went to his bedside and told them to stop chest compressions. We kissed him and told him we loved him and it was time to go.

The staff was wonderful. We got to hold him right away and after a few minutes I asked them to please take the breathing tube and chest tubes out, we wanted to see him without all of that junk for the first time since the day he was born. A staff member of the Ronald Mcdonald house brought the kids up.

We all made handprints and wrote a little message to Alex on the posterboard, the kids all held him and said thier goodbye's. They let us stay as long as we wanted.

We got to bathe him and dress him in one of the outfits we had bought for him, they made a plaster mold with his hands holding our fingers and his feet. They made the whole thing extremely special and as easy as possible for us and although this is probably the hardest day of our lives, we will always cherish the love and sincerity of the staff at U of M. I know his caregivers loved him and allowed us many nights of sleep because we trusted them.

Thank you everyone for the outpouring of love and prayers you've sent. Alex definitely fought and is the smallest yet strongest person we have ever met. And we are very proud of be able to call him our son, even if God needed him more than we do.

UPDATE: The services for Alexander will be held on Tuesday March 21. Veiwing will be at 9am and service at 11am.

If anyone would like to donate in honor of Alexander, please do so to the Children's heart foundation at

which will use your money to further research ways to help kids with congenital heart defects.

or to the Ronald Mcdonald Charities at

Tuesday, March 14, 2006

Alexander's life 3-14-06

TUESDAY, MARCH 14, 2006 12:47 PM, CST
Alex has had a rocky weekend. He's been a bit unstable with his blood pressures. We have been told that they are walking a fine line with him, trying to get his heart to do the work it needs but trying to keep the fluid off him at the same time. He's really been struggling and needing extra help.

He seems to not like nighttime, apparently it just gets too quiet for him or something because he will be fairly stable all day and then at night drop his pressures time and time again.

Alex's head ultrasound showed no brain bleeding, they said the bruising is from some broken capillaries in his chest wall and since they had toseparate the layers in there it just seeped into the tissues and that's why he's bruised. It'll go away in time.

They were able to wean down his dopamine on Saturday but he is still needing his epinephrine, in fact last night they had to increase the dose to help his blood pressures. They really want him off the epi because although it makes his heart pump harder and faster, it constricts the blood vessels. He has been unable to tolerate any of the vasodilators they have tried to give him and he can't go back on the one he tolerated because his kidneys aren't working enough to excrete it. They are also trying to wean him off the steroids he needed a few weeks back, they think they are responsible for the broken blood vessels and also they inhibit healing and obviousely he doesn't need that to happen.

The little guy really needs our prayers. We really need him to stop walking that fine line and just take a good step in the right direction. His doctors are very worried about him right now.

Sunday, March 12, 2006

Alexander's life 3-12-06

SUNDAY, MARCH 12, 2006 09:16 AM, CST
Alex needs prayers today. His whole body is bruised. right now they are thinking it's from when his hemoglobin dropped on Friday night and the blood is now finding it's way to his tissues. From a neurological standpoint........we don't know. This mornign and overnight he wasn't responding to things that normally make him mad, now when she turned him he did move some and his pupils look normal. His soft spot on his head is a little firm, but not bulging. I'm sure they will be ordering a head ultrasound today.

His blood work looks good, his blood pressure is stable as are his sats, heartrate etc. He's a little acidotic but better than he was yesterday, they haven't gone up on his vent settings again as of now. The fluid they are getting out of his pd is pinkish tinged now instead of clear/yellow as it was and should be.

Docs are in rounds so I'll know more later

Saturday, March 11, 2006

Alexander's life 3-11-06

SATURDAY, MARCH 11, 2006 09:18 PM, CST
Alex had a bit of trouble with his blood pressure last night. We think it was because he was losing a bunch out of his chest tubes (he apparently thinks this is the way to get extra fluid out of your body, he needs to realize that's why God gave us kidneys) and because the site around his chest tube they replaced was bleeding. He got some blood and he's been doing good all day, even being quite generous with his pressures which led them to wean his dopamine to a 'keeping the line open' level and tonight they are going to start weaning his epinephrine.

They also decided to give him some more iv nutrition which is obviousely something he needs to heal, as well as it will help to replace some of the fluids he's putting out.

His pressure sore on his head is looking a tiny bit better, hopefully it will heal quickly.

Currently Alex's kidneys aren't working. That is probably partly due to the fact that he's losing so much fluid through his chest tubes and that they are pulling the rest off with the PD so his kidneys have nothing to filter, but we would like to see him peeing at least some and currently he's not which is worrisome.

He stopped oozing from his incision today which is a very good thing, it needs to be dry to heal and with all the oozing it's been doing it has been holding up the healing process so maybe now he will start to heal better so we can hold him. His surgeon saw him today and said it looks ok, he's confident it will heal fine.

They did have to go up on his vent rate twice today because his blood gasses were coming back acidotic, why this is no one is really sure but it may be related to the trouble he was having overnight, he is just needing a little more help from the vent to get over the bump.

Alex has learned a new trick to make mommy panic. When they flush his RA line or suction him he drops his heartrate, I've seen it go as low as 17. He really needs to realize that these tricks aren't funny.

Friday, March 10, 2006

Alexander's life 3-10-06

FRIDAY, MARCH 10, 2006 08:32 PM, CST
Another decent day. We had the skin doc come and look at his head and she says that she thinks it's starting to heal, it's clean, and to just keep putting antibiotics on it and keep him off it.

Dr Foker came and said his incision looks good, but everyone else agreed he's on crack (nurses words, not mine) because it's a mess, but if Dr Foker is happy, were happy. He will definitely have a lot of scarring, from where the stitches have pulled and ripped his skin, but that's ok.

After spending much of the day working on clearing one of his chest tubes that wasn't draining (it was coming out every hole in his chest instead) they decided to place a larger tube in and so far it seems to have done the trick. If it doesn't work out they may have to take all the tubes out and replace them in the sides of his chest through his ribs instead.

They also decided today to start to wean one of his cardiac meds, dopamine. His pressures since have been fairly low, in the mid 60's (they want him above 65 to wean the dopa and above 55 all the time systolic) but they think that part of that may be that with the PD they have really dried him out so they are going to work on fluid replacement.

The nurses also discussed turning his O2 down on his vent cause his sats are in the high 90's and since he's a mixer (his red blood mixes with his blue blood in his heart through the ventricular septal defect) they don't really need to keep his sats that high. We'll see about that

To get out of the ICU we have to be off the vent and off all cardiac meds via IV (he may go home on oral) so that's the plan right now, to wean him off all that and get his kidneys working again. They aren't right now and whether that's because he's so dry from the pd or the fact that his heart is stressed is unclear at the moment.

Hoping to hold him soon!

Thursday, March 9, 2006

Alexander's life 3-9-06

THURSDAY, MARCH 09, 2006 10:40 PM, CST
Alex continues to be stable. He has passed the 48 hour mark and is doing well, although obviousely still critically ill.

They went down on his vent settings today because he was fighting the vent a bit, basically breathing over it and his blood was showing he was getting too much oxygen so they turned it down a bit.

I am a bit, ok a lot concerned about a bedsore he has on the back of his head though and am going to request that the skin docs come and take another look at it as it seems to be getting worse instead of better with current treatment which involves a medicated dressing and turning him side to side to avoid pressure on the sore. We'll see what they decide to do.

His incision is beginning to heal although it still looks rather yucky. It's definitely not a 'clean close' but it's closed and they said they will do some plastic surgery on it with his next OHS and make the scar better, but honestly a scar is the least of my worries........that's what t-shirts are for right

Wednesday, March 8, 2006

Alexander's life 3-8-06

WEDNESDAY, MARCH 08, 2006 09:02 AM, CST
He's closed!!! Dr D worked for 4 hours to get the skin sewn together and it's very very tight, he said it was the toughest close they've ever had but he refused to give up. It was so tight they had to put in smaller chest tubes and take out the pacemaker wires (which are no larger than stereo wires) because there was just no room for anything not directly needed. (He's never USED his pacer, it's just been there just in case).

Last night they started chest irrigation since on the 28th of Feb they grew some bacteria from his chest culture. Unfortunately that's not working very well since the new chest tubes are so tiny, the fluid isn't able to flow back out of them and it's instead leaking out his chest (this child sure loves to leak!) Good news, the dialysis is now working properly.

He's doing good considering. He's been pretty stable. They had to knock him out though because he was really fighting the vent this morning and it was making his heart work harder which they don't want right now. This first 24-48 hours are pretty rocky and they just want to ride it out as easily as they possibly can.

Tuesday, March 7, 2006

Alexander's life 3-7-06

TUESDAY, MARCH 07, 2006 09:31 AM, CST
Today has to be the day. There's another washout scheduled for 10:30 (yeah right lol) and all the fluid is off him so he HAS to be closed today. So keep those prayers coming!

They figured out the issue with the dialysis fluid. Apparently when in his second surgery his spleen bled they first tunneled down around his diaphragm to get to it, and now the fluid they are putting into his belly is leaking through it and coming out of his chest. As of yesterday the cardio docs didn't seem too concerned about this, but the renal docs didn't seem too thrilled. Apparently the cardio docs won.

ooh rounds are done, time to go see my bubba! More later!

UPDATE: They decided to go in and fix the hole in his belly, he went into surgery at 11 and they said 4-5 hours....... which means 8 hours. More later!

UPDATE: Just got a call from the nurse. They fixed the hole with no problems, were able to close his sternum with no problems. Now they are meticulousely working on getting the skin closed. It's rather chewed up from so many times of having to sew the "heart bandaid" on. But Dr D is determined!

Sunday, March 5, 2006

Alexander's life 3-5-06

SUNDAY, MARCH 05, 2006 06:27 PM, CST
Another good day! Alex is showing his defiant side and refuses to stop oozing fluid and making his ioban (a sterile sticky film much like saran wrap that goes over his chest) fall off. Today he earned the nickname "ioban man" from one of his docs because they had to replace it yet again and they had to practically wrap the kid in it like a mummy..and it's STILL coming up lol

He's also doing something they can't quite figure out, somehow instead of putting the fluid out of the dialysis cath, he's actually putting it out his chest tubes. He loves doing things HIS way and not thier way. Whatever the case may be, he was -166 cc's of fluid by 3pm, so it's workin.

Saturday, March 4, 2006

Alexander's life 3-4-06

SATURDAY, MARCH 04, 2006 09:22 PM, CST
Alex had a very good day depsite yet another OR procedure to put his catheter in. He didn't bleed! He's "oozing" from the site but no hemmorages so that's great!

The PD catheter is pretty interesting. Every 30 minutes they put in salt and glucose water and then at the end of 30 minutes they let it drain out, the idea is more out than in. They started it at about 6:30pm and so far he's tolerating it quite well and getting a few extra cc's more out than in at each "pass". His blood pressure comes down a bit when they drain it but not so much that people get scared, they just fuss with him a bit and it pops back up. They said it's from the fluid shifting.

Dr. D talked to us after the cath was put in and they are planning another wash out/closure attempt on Tuesday, hopefully he will have enough fluid off by then that he will tolerate it and finally be closed!

Everybody send Alex some "keep up the good work!" vibes!

And a big congrats to Alex's old roomate Luke, who is officially off the vent!

Friday, March 3, 2006

Alexander's life 3-3-06

FRIDAY, MARCH 03, 2006 09:06 PM, CST
Alex wasn't able to be closed today again:(

It's still too tight in there and he dropped his bp when they tried, although not as much as before. So tomorrow he gets his new peice of equipment, a dialysis catheter. It was described to me as they put salt in his belly and then suck it out, bringing the fluid with it. So hopefully they'll get all that fluid off him in a few days and they can get him closed.

Otherwise he had a decent day. He was stable all morning and started peeing a bit more. After the washout he was a wee bit unstable for about an hour but he looked good this evening.

Thursday, March 2, 2006

Alexander's life 3-2-06

THURSDAY, MARCH 02, 2006 08:18 PM, CST
We got a phone call very early this morning to let us know that Alex was unstable. We got the kids to school and went to the hospital and they said they didn't know exactly what was going on but his blood gasses looked bad and there was evidence that his kidneys and liver were starting to take a turn for the worse. They were suspecting either a bleed or an infection. They ordered a full body ultrasound to look for bleeding.

Through the day he continued to stabalize himself, his blood gasses were looking better, his liver and kidney tests were looking better, his blood pressure was good.

The results of the ultrasound showed bleeding between his brain and skull. To what extent I don't know. He's having a CT scan done tonight to make sure there isn't any active bleeding (they are pretty sure there isn't at this point) and whatever else it is they look for so we will know more about it in the morning.

He did have a chest washout/possible closure scheduled for tomorrow but i'm unsure if they will still do it tomorrow given todays events.


Update: The CT scan revealed it's not blood! It's just fluid and doesn't appear to be compressing his brain! Very good news!

Wednesday, March 1, 2006

living without Alex 3-1-07

This post was moved from Alex's original blog

THURSDAY, MARCH 01, 2007 02:55 PM, CST
Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
The tiniest hearts are repaired.
A child's growing fast...
His mom thinks...can this last?
It's almost forget...
That anything is wrong...
Her child seems so strong.

Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
A family says goodbye...

Somewhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Make time to tell someone you know...
"I've been changed by a heart defect".

Alexander's life 3-1-06

WEDNESDAY, MARCH 01, 2006 11:41 AM, CST
Alex is continuing to stabalize from Friday's episode. They did the wash out yesterday and were able to get him partially closed but he just wasn't ready to close completely, which I entirely expected.

Today they restarted his nutrition which is good cause it's hard to heal when you aren't getting any nutrients.

Alex still needs those pee vibes, he's not doing so great in that department again and he's puffing up again which just sets his closing back further. Were frustrated.