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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.

Friday, November 30, 2007

Gearing up

Jeff and I are gearing up for the holidays and also for Alex's appointment. He goes to a limited echo and cardiology visit on Monday. We hope for more conclusive answers and hope hope hope we know what is going on. I think it would be a little crazy for us to go and STILL not know when things are happening. I did go up to PCMC and fill Alex's meds this week. We bumped into one of the Dr.s and he said they have talked a bunch about Alex. I also got a phone call from his cardiologist who apologized that we have been riding the roller coaster so long and hopes he can see what to do next. He didn't feel as though the angioplasty did much and he also feels like waiting and waiting isn't one of our best options either. We certainly can tell a difference in our little man. Before, we could take off his O2 to change his cheek Tendergrips or to get him the tub without worrying about him turning blue or struggling.... Now he turns blue so fast and he starts tugging or tracting. He is sleepy and cranky a lot more in the day but sleeps about the same. He just gets tired of playing and will chill out on my lap. I have tried some new measures in clearing up his bum and it looks better (thanks Glenda). The hardest time is night time and by the time I wake up and change him there are new bleeding sores. I am working on it. All in all we are doing pretty good and just hanging out.

Saturday, November 24, 2007

week in review

Pre-parade ....
Middle
The Box

The End...Get me off!!!!

This week has been so eventful and busy, I haven't had much time to post. So here are a few things that happened. Sunday, Ry and I went to Malad to welcome home my cousin Ches who just got home from a mission. Alex got his Synigis shot Wed. I am not sure what is going on with his surgery yet and I thought he at least needed the protection from RSV. That night we went to Orem to be with my family while Jeff did a little work. I ordered the Vinyl lettering for the play room. Thursday was turkey day... I have so much to be thankful for this year. Black Friday, Jeff and I got up at 3:45 and waited two hours in 30 degree temps, then we worked and cleaned and set up Christmas, then I ended up taking Alex to PCMC for a stool sample, we hope hope hope, it's not C-Diff yet again, his little bottom still isn't better and I tried it all. (thanks for the suggestions everyone) I must have spent thirty dollars on products for his bum... Today we have cleaned and Jeff has been working like crazy yet again and had accomplished sooooo much down there, I am so excited. We think Ry and Alex will love it.... I will call tomorrow and find out if the cultures grew and if we have something yucky to deal with. I will post more when I know.... I was hoping we would be able to have a nice quiet Holiday season.... Who was I kidding????

Jeff is the best person to take to the parade, he always gets the t-shirts and the treats and all the big stuff.... this time he scored a whole box of chips from the Lays people..... he's so awesome....

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Monday, November 19, 2007

Do you ever wonder "what the heck did I ever do without my sweet-heart" well I can tell you for me it was NOT MUCH..... Just wanted everyone to know that my "boyfriend" rocks...... I also wanted to add that I messed up the gradient pressure percentages.... It went from 30% to 8%, a much bigger change.... We got Alex all scheduled for his Synigis, I just have to get the okay from Cardiology to do it..... I would hate to have him get sick while we keep getting put off on the surgery.

Ry's dance class gets to ride a float in the parade on Friday.... If it's televised, watch for KC Dance Company and little girls in white hoodies... That's Ry's group... I will of course be posting pictures.... She can hardly wait...

Saturday, November 17, 2007

Well we had a busy yet fulfilling Saturday... I felt like we ran ran ran. We got up and Jeff put the Christmas lights on the house. We drove to Orem and hung out while Jeff worked at a neighbor of my folks.... we went to his parents house to help out but found out we need to do it Monday, we went to Ikea to finish getting a few things for the playroom and now we are finally home. Whew! Alex is running a low grade fever and had a really sore bum, I think he is cutting teeth. I did call into the cardiologist just to get an opinion, but they seem to think the same. So I guess that is all for today.

Some people have asked multiple times if there was anything that we needed or if they could bring us a meal. We thank everyone for offering and couldn't think of anything that we NEED! We have however started food cards, these are like gift card to the hospital cafeteria. If you still would like to help us out in the meal department you can add some $ to our card and we can eat on you at the hospital. To do this you call, (801)662-1000: ask for Cathy in food services, ask to add $ to the gift cards for Jeff and Brynn Homer ( card # 01641 and 01642) and the amount.. Don't feel obligated, I just thought I would let those of you know who asked...

For those of you who have linked to us from another family whose child is in the PICU or still at the hospital, you can do this for your family member and get it started for them... It helps out sooooooooo much....


All our love the HOmers.

Thursday, November 15, 2007

We are hanging out.

Sorry that I haven't posted yet. Alex did great in the Cath Lab. The Dr.(Dr. Holly) was so nice to give him a little happy gas before actually trying to stick him again. The ballooning itself (done by Dr. Gray)(also very nice)tried multiple times to stretch open that narrow area. So for those who understand. I guess it changed his gradiant pressure from 15%to 8% still not perfect but getting better. We are in the same day recovery over night, which is good because he keeps acting a little funny with his Sats and dropping them as low as the 50's. He has on two probes to monitor it all and they also did a chest x-ray but all looked great... so he must be throwing us off somehow. No, we still don't have a time frame for the Glenn. It's okay we'll just keep hanging out. On one had, I wish I could be here for our other PICU buddies, on the other, I am so happy to be able to be home doing our somewhat normal things....Brynn

Pictures

We got the proofs from our family pictures... I think they look soooooooo Awesome... Thanks girls... You can check them out and Amanda and Lyndee's work by going to http://bishopimages.instaproofs.com Thanks again girls.....Brynn

Down in the cath lab

Here's a little update:
I just dropped Alex off in the Cath-Lab, received my pager, called Jeff and I am hanging out. I think everything will go well. Last night Alex pulled off his little hat and pulled out the IV. I should have held him all night so he wouldn't do that. The things you wish you'd done,right? Jeff is working for a little longer while I got Alex all checked in and started and then he'll be here. I guess this is going to be around a three hour procedure and then we will see if he even needs to be admitted, there is talk on the street that we might just go home today.
Brynn

Wednesday, November 14, 2007

No Really, are you sitting?

We got up bright and early this morning... We got everything ready, we arrived at the hospital by 7am were we checked in and proceeded with all the right things... We dressed Alex, took pictures, went to the OR waiting area with him. The nurse brought over some meds and was explaining them to me when the surgeon came over and told her to hold off and wanted to talk to us. Apparently Alex's case was brought up again in his conference. The Dr's and surgeon's agreed that Alex's heart is just not going to handle all of those fixes very well. There are too many things that could and potentially would go wrong. They were able to aggressively come up with a new plan. (so glad they have those) They decided that they wanted to try and do another angioplasty. This time using a larger balloon and hopefully making the coarctation better without the need for cuts and "surgery". This in turn would help take work load off the right side and make function better. So we could do the Glenn with a better result. So we hung out for about an hour... (The computers were down) And found out that the cath lab was all booked up for today.... I begged to let them keep his IV in because it took another 4 sticks to get it today. (The IV team wants to turn and run when they see us. But they are soooo patient and willing to try what ever I suggest.) They did leave it for me and I will be in charge of flushing it and babying it until tomorrow. WHEN, we go back for the Cath and the Angioplasty. Yes, we feel a little crazy by the whole "roller coaster" of events, but we want everyone to know that this is an answer to prayers too. We have been praying that the Dr's and Surgeons would have all the knowledge and understanding to help Alex and us make the right decisions in his behalf... So although we wait yet again..... We wait WITH Alex and know that this smaller procedure will aid in his BIG procedure... They haven't given us any time frames because it would be so hard to judge at this point. We will be in the hospital over night, I think we get to go home Friday, after that we will just take things day by day...

We wanted to also let Noah's family know that we are so sad for their loss.

Also, Good luck Kaidence in figuring all this crazy stuff out.....

All our love the Homers

Tuesday, November 13, 2007

Are you sitting down for this.......

Alex had Pro-Op today and what a crazy day we had. We had a sedated echo, 4 try's and one successful IV, weight checks (16 lbs 4 OZs), blood drawn, waiting and then......We found out how serious Alex's surgery will be tomorrow. We are not talking about your run-of-the-mill Glenn. We are talking new info about how things are looking.... Alex will need the following repairs tomorrow... Tricuspid valve repair, Aortic arch repair, two holes repaired, the sano conduit removed, and on top of all that the Bidirectional Glenn....We plan on having him in surgery for six hours. We don't even have a guess time how long it will take to recover. The good thing is that he is bigger at this point and seems to be checking out in other areas. They are still concerned that his heart is not functioning all that stellar, we hope having these surgeries takes some of the work load off the right side.... So we are worried sick and just hanging in there right now.

Sunday, November 11, 2007

In the works...

Thanks to Amanda Bishop and Lyndee George we got our family pictures done yesterday.... I was so glad to have them done. What a relief....The lady's were so awesome and I know the pics will turn out awesome. So be looking for them soon. I now have compiled my list of things to get done before Tuesday... I am a list making fool. It makes me remember everything I need to do, and reminds me of all the things I'd like to do. The kids seem like they know something is going to happen; we've talked it all over with Ryleigh and she understands some. She mostly gets the fact that she gets to go stay at grandparents houses. In other news, I am taking all the vitamins I can, washing my hands even when they aren't dirty and staying away from sickies, to stay well. I always get some kind of a cold when the season's change and I am determined to have it pass me by. One of the items on my list for Monday is to get the flu shot that I haven't made time for. I don't mind shots all that much and I give blood every eight weeks, so I should just do it right? Jeff went to church today and I think everyone will know after sacrament that I got released from my calling in Young Women's and I am going to teach RS every second Sunday... I am so sad to leave my girls, they will be missed and I have been so grateful for all the things they have done for our little family. Those girls have kept us in their prayers, fasted for us, brought us meals, they even have brought little gifts for our kids.... They are so amazing. I understand that someone else needs the blessing they offer. I am also excited by my new calling. I am not a very good teacher, hopefully I will just be an instrument for Heavenly Father... I heard this is a really good calling because as the teacher you learn so much from the studying you do to prepare... Well we will post more when we can...Brynn

Friday, November 9, 2007

We got our call!!!!

So Alex's surgery is scheduled for Wednesday. He goes to pre-op on Tuesday. My little sister Preslee is going up to PCMC for some testing for her seizures on Tuesday and my family will take Ryleigh back to Orem to stay with them while Alex is in the hospital. We hope he will recover quickly. We have only planned her staying there for this far along since we can never expect when he will come home. I am trying my guts out to get a family picture done before, so I can have projects like Christmas cards to work on while he recovers. Thanks for all the continued prayers.....

Kaidences news spot

ksl.com - New Device Helping Babies with Heart Problems

It's really easy to see Kaidence's new spot, just click on the sentence above.... Yeah!!! for her....

Wednesday, November 7, 2007

On a personal note....

I added Jeff and my email addresses to our toolbar if you would like to send a personal message to either of us. I understand that sometimes you would rather just send a message to Jeff...... Yesterday we all attended the funeral of Ian Pearson. It was a special and sweet day. We could feel his spirit so strong. Justin and Jenn where amazing. I wanna be like them when I grow up. Today is a good day, and we hope the good vibes are going our little friend Kaidence's direction. We are praying her surgery to receive the Berlin Heart goes well.... Smooches and all our loves...The Homers

Monday, November 5, 2007

Yeah!!!!

I am yet again humbled by the power of fasting and prayer.... Alex's appointment went so well... Dr. Su was so glad to see that his heart had had great improvement. Now his case will be presented on Wed. to all the teams and they will hopefully be calling for his surgery date to be next week or the following. I am scared and glad all at the same time.... Thank you everyone...

Sunday, November 4, 2007

Family of Four!!!

We have been blessed with such great family and friends. I am so grateful for everything we have been given. I may not have sent you a personal thank you note, please forgive this slightly-not-so-good-at-that-crazy-busy-mommy!!!!! We have totally loved everything. We got these darling hats from my aunt Mary who rocks at crochet and made us each one. My other aunt Karen sent a package for both our kids and wrapped each gift so that Ry could open them. It was like a mini Christmas. We have gotten so many wonderful, fun, and generous things... Ry comes home from both grandparents house spoiled... Neighbors and friends took Ry and even took her boating while we had and emergency day.... "GO FASTER". We have received so many meals and even the words of concern and prayer is so amazing. I just wanted to say THANK YOU!!!!!!! From the four HOMERS......
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Thursday, November 1, 2007

Our Sweet little friend

After the hardest fight ever, Ian went back to live with Heavenly Father today. His daddy and mommy and big sister Emily are doing okay. We are so sad for their loss and we hope that they know of our love for them....Ian was only ten days younger than Alex, so we've been friends since right after the boys were born.

Prayers for Baby Ian

I wanted to get as many prayers for him as possible and I know many are checking on him.... He really needs them today....... Also a special prayer for Justin, Jenn and Emily to be strong... We have really become close to our friends and wish them the very best.

Also, there is account set up at Wells Fargo that you can make donations to. It is very easy and you can just say it is for the Ian Pearson fund. I know that many are in our same situation and making even the smallest donation is something they are most grateful for.... All our Love... Brynn