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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, September 29, 2007

Praying for miracles

My friend Jenn Pearson says.."I don't know what our little boy's miracles will be, but I will accept them, even if it means a miracle for someone else" Today my little miracle is playing in his excersaucer (generously loaned to us by my brother and his wife). He is with me today, taking the medicines that I hope save his heart and make him strong. He doesn't like to take them... But I told him it will make him feel better. We started all the meds now and after going down to two meds a day, back to six, I just keep thinking this will be part of our life... The Digoxin isn't too bad. We did have to go back on lasix. He is eating well and sleeping a lot. They said all of that is congruent to his heart failure. He sweats a ton, whimpers and needs me to hold him more, but he smiles still and makes me feel like he still loves our family with his whole-little-broken-heart.... The Dr's said that they will call and set up an appointment for an echo in about three weeks, so we will start our waiting game. Ry is in Florida, having a blast. We miss her and can't wait to see the pictures...

Friday, September 28, 2007

A few new photo's from wed...



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D&C 6:36

"Look unto me in every thought; doubt not, fear not."
The surgery that was planned for Monday is off until further notice. Alex went to a sedated Echo yesterday. We got up as usual and got ready. We had to be at the hospital around 7 am.... After checking in we went down and waited for a little while and talked to the nurse who does sedation. After finding out how nervous she was to use the Verset again ( we ended up in the ER last Monday), we decided that the best option would be to go under general anesthesia in the care of Dr.s and nurses who would be able to do something if Alex did something uncertain. So Dr. Su came in and talked to me a little while about the cardio cath. While the aortic arch was much better, he was very concerned about the function of the right ventricle. The only functioning ventricle. We would have to wait until the echo was over to get conclusive evidence for our next step. They wanted to check and see if over the last week the ballooning had taken some pressure off of the ventricle and was it improving. Jeff was working and I knew most of the day would be sitting, so I called my mom to come and hang out with me while we waited. Finally he was able to go in for the procedure. He had a rough time coming out of the general. We got him to eat something and keep in down and we met with Dr. Su........ Well, the function of the ventricle is very bad. There isn't much bad below it. Dr. Su is amazed Alex is still eating and gaining weight. So we have two options.... The first being to let Alex's body do what ever it will to gain back function.... or to take some drugs that will help improve function. We decided to give him drugs... Alex will be taking Enalipril (which he is currently in a study for and we don't know if he is taking the actual meds or a placebo, but will be taken out of the study and given it for sure) and dejoxcin (sorry I have no idea how to spell it) some believe this to help and some don't, we don't have a choice we just have to try it. Now, if the meds work and he gets strong enough, we will reschedule the Glenn. We don't really have a time frame for how long this will be. If the meds don't work and we continue to see increase blue and saturation drops, we will rethink Alex's situation all together and consider a heart transplant.
Jeff and I are trying to be strong. I feel sick to my stomach. We haven't really processed everything yet... it is frustrating.

Tuesday, September 25, 2007

Really hard task!

Yesterday Jenn Pearson asked that I would write on the update for Ian.. It was so difficult to see straight to tell people the hard news, that his surgery did not go as well as planned.... I wanted to ask that everyone pray for our special little heart friend. This really hits close to home for us. He was born only ten days after Alex and we have been close to the Pearson's as we spent so much time in the hospital together. We wish them the very best... We know Heavenly Father will do what is best for their family. Thanks for the extra prayers... Brynn

Saturday, September 22, 2007

some interesting things

This is the balloon cath they used to open the aoric arch... I think it is cool that they will let us keep these things...

This is a picture of his heart right now. The right ventrical looks huge... isn't it amazing how we have the technology to save a babies life.
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Today...

We got to come home today. He has done very well at home too. He has been sleeping most of the day he's also been a little fussy because he is still a little uncomfortable.. I think it was a good thing to keep him over night at the hospital, because it gave Jeff and I a chance to get some rest and as he was coming out of the anesthesia he thrashed around some and that is hard for me to see. Jeff went to pick Ry up and she had so much fun in Orem. My mom took her on a bike ride in the Burly buggy to Bridal Veil Falls. She loves that so much. Thanks guys.... I am doing well, I guess this is just our new normal... sometimes living at the hospital and sometimes living at our house...Today it is raining a ton at our house, it smells amazing. I love the fall.

Friday, September 21, 2007

rest of today

After Alex came out of the cath lab he went up to the PICU. He will most likely just need to stay until tomorrow. They said everything went as planned with no complications or tearing.... He has been sleeping most of the day, they gave him four doses of the verset and four doses of the morphine, all on top of the other drug that helps to knock him out.(I forgot the name) I am glad he has been able to rest.. He woke briefly to have a bottle and went back to sleep after a good burp and a little fussing..... So we will let him sleep tonight and see how he is in the morning.

You guessed it!!!

Or I guessed it... We are going to be admitted.. There were a few things that they found during his cath. First being that his lungs look great!!! Their function looks good. That's the good, now the list of the not so good..... It also looks like the aortic arch has a narrowing, since he is already sedated and in the cath lab they are going to balloon it open. This procedure takes a balloon and blows open the arch, stretching and to the appropriate size and then is removed... All done in the cath lab... The other thing they saw was a couple of minor opening that will be repaired in surgery on Monday Oct 1st. The last is the function of the right ventricle... ( the part of his heart doing all the work) it has a little less function, this seems to be normal as Dr. Day did not seem too over worked about it. We are waiting now to hear about the ballooning and we will keep the info coming.

Cath!!!!

Yesterday we got the call that Alex would be Dr. Day's first case which means we had to check in this morning at 6:00 am and leave the house by 5, ewww. I took Ryleigh to Orem where she's having a slumber party with my folks until Saturday, I am grateful things wouldn't be too crazy with her. Then we got up this morning and came to the hospital.. Funny how many great parking spaces there are in the very early morning...Alex was checked and ready to go, dressed in his hospital jammies... They gave him Versed (sp?) PO and would be giving him more later via a I.V... He coughed and sputtered the nasty stuff down... Poor kid, we starve him and he thinks we are finally giving him some sustenance and it is meds... He was funny after he calmed down to just look at us, no smiling, just following us with his eyes. He was fun to smooch cause it was the squishy way little kids and babies are right after they wake up, only he was falling asleep..... they gave us a pager until the procedure is over and we will be here four to six hours after for recovery.....I will update more later as we find out what is happening.

Monday, September 17, 2007

Getting closer!!!

The weeks certainly seem to fly by as we approach Alex and Ryleigh's "great adventures". Ry is just as funny as ever and keeps us on our toes. The other day she was in trouble for taking off, and daddy had put her new bike in time-out. Well she figured that she would just ride her trike. So she stared to pull on it, the wheel was stuck under the lowest step on the ladder that was propped up against the wall. After much pulling she successfully pulled the trike free only to have the ladder crash onto my car where it left three brand new dents and scratches....The body shop guys will be happy about this one.... Alex looks more blue everyday and I keep thinking I should take him up to PCMC... I am just going to hold off until Friday. He won't have a sedated Echo, which I think is a little weird... We had one all scheduled and they cancelled... Let's just keep our fingers crossed I don't freak out until Friday...

Tuesday, September 11, 2007

I also started Dance...

Ry just started taking dance... She loves it sooooo much and can't wait until next week when she can go again... Just thought I would show you how cute she looked on her way there....

Weekend overview





Ryleigh turned 3 on Saturday... She had so much fun and her party is this weekend. It has been a little crazy. (what's new) Last Friday Jeff got the fence in and our yard is starting to really come together. On Saturday we had the Hearts of Hope picnic. I was excited to see everyone again and meet new friends in our same situation. The picture is of the group.... Next year everyone I know who has ever had a heart issue and their families are invited. We even had three "angle" baby families who are part of our group. They help us our in immeasurable ways. Sunday we went to Homers for supper and yesterday was Lone Pine BBQ in our new backyard. It was fun having everyone over. I am so glad we have such nice family and friends. We are happy and busy for now and just keep our minds on one day at a time.... We hope everyone is doing well.... ( the last little picture is of Alex and Ethan and their daddies)

Tuesday, September 4, 2007

On the scale

On a scale from one to ten; Ten being totally crazy and one being not-so-much, I think Jeff and I are nine. It seems like the Homers have hit warp speed and it doesn't look like we are going to slow down for a little while. With up coming trips, surgeries, and tons of projects to take up all our time, I wonder when I will have a minute to go potty. We just signed Ryleigh up for a little dance class and she can't wait to start. We borrowed a DVD from the library about dance and she seems to pick things up really well. I need to mention a sad thing... She no longer has a problem pronouncing her "sp" sounds... Sad, because I loved to hear her say fooky and farkles....and mostly funge-BOB-Fuare-Pants..... I guess it is because she is going to be three on Saturday..(or was that 13) Alex is doing good he is starting to show the signs of needing this repair. I just hope he keeps packing on the pounds until we go. I need to take pictures of the backyard soon.. It is looking pretty amazing, Jeff and both our dads have been working back there... One other little thing... While we were in the hospital we made some very dear friends.. The Pearson's and the Curtis's, both families are back..... Ethan for his Glenn and Ian for a very scary heart failure... Will you please keep these families in your prayers as we hope for the best and wish them well....

Saturday, September 1, 2007

Schedules

We thought everything was nailed down for Alex's second repair(Glenn) and everything is still on, however there are a few things that played into this whole thing that have changed slightly. Like: Alex had his four month well baby visit and vaccinations not too long ago and we have to wait six weeks for the surgery because when he goes on the heart and lung bypass machine, if we don't wait then the vaccinations will be eradicated from his system. We would have to do the whole series of shots over again. Not fun considering that he is so unhappy after getting them done. So instead of doing the Glenn on the 26Th as planned he will now be having it on the 1st of October. The cardio-cath will still be done on the 21st. The cardio-cath goes in through the groin and checks his blood pressures and his heart to make sure it all looks open and ready for surgery. It is a same day procedure. On Wednesday (26Th of Sept) Ryleigh leaves with grandma and papa Homer for a visit to Florida to see her cousin Grace and her Auntie Lisha and Uncle Ryan. They are all helping a ton to take her during this time. Also on that day the Dr's and surgeons have a board meeting and present all the upcoming cases. They will do an overview of Alex's case and talk about his past too. Then we check into the hospital on Sunday the 30Th and Alex will have his surgery the next day Monday the 1st. Ryleigh will come home Wednesday the 3rd and Jeff will stay at the hospital with Alex on Thursday, Friday and Saturday morning while I have Ryleigh and then Grandma and Papa Clawson will come Saturday afternoon and take her to Orem for a visit to play with the Auntie's and cousin Arlington, and uncle Marc and Auntie Lisa; until Alex is home which we hope won't be too long. Our family has been such a support and help, thank you. I am totally scared doing this all over again. I know how dramatic the change in his health will be, this is a driving force to get it done. I want him comfortable too so I already got him a little CD player and some tunes... I think that I will buy him a few very soft pillow cases.(he prefers them to blankets, weird kid, i know) I hope we can make him comfortable without holding him. Or I hope I can hold him soon after...... I will just be getting all my loves in now...