*Lucile Packard Children's Hospital
The cardiologists were not thrilled with Owen's weight loss over the last six months. They were not happy with his energy levels, nor with his constant dips in oxygen saturations. Our appointment lasted five hours, including his echo and ekg. I knew when Dr Rosenthal (cardiology) came in the room and said "we have a bed available", that things weren't good. This was after we already met with another cardiologist and the nutritionist.
I did some convincing so that I could keep him out of the hospital for the short term. We are to stay in the area! Owen has cardiology clinic on Monday again, including labwork. They got him booked in the cath lab for a cardiac catherization on Wednesday with a one way ticket to ICU afterwards.
In the meantime, he MUST gain weight to stay out of the hospital. I put him on 30cal/ounce pediasure on a 24 hour drip (to avoid puking). He will be on a continuous drip of formula into his Gtube and PRAY that he gains weight.
In the cath on Wednesday they will check his pressures and diastolic function of his heart. If things look bad, we will move forward with listing him for transplant. If he fails to gain weight, he will be admitted, and we will move forward with listing him for transplant.
I am PRAYING that he gains a little weight and that his cath shows that he is stable enough to go home, at least for a few more months.
I had a meltdown or two today! I hate the idea of putting my baby girl on a plane with my hubby because I will miss them dearly. I hate the idea of being alone in a town where I don't know a soul. I hate the idea of sitting in the waiting area next Wednesday, alone, while our little guy is in the cath lab.
We knew this time would come. I just wasn't ready for it to happen on this trip.
On the bright side...
Carson's baby sister, Janesa, moved to San Fransisco last month to take a big position with MAC cosmetics. She drove down to hang out with us tonight, hotel style.
It was so great to see Janesa!! We had planned on a night in the city, having a good time. Instead, we are busy trying to book airlines, hotel rooms (it's Stanford's homecoming weekend and everything is booked up!), and trying to organize the next couple weeks of our lives.
So we will settle for Olive Garden takeout!
I planned to move into the Ronald McDonald House this week, but there is a waiting list of 15 families ahead of us. Yikes. I'm awaiting a call from the housing office.
Carson and Kamryn will fly home Saturday morning. I will chill with Owen and hopefully settle into one hotel room for the week. I don't know how I am going to do it.
PRAY that Owen gains weight, that his cath goes smoothly and that we can fly home in time for Halloween! This is wishful thinking... but it can happen.
I know it's out of our hands at this point.
45 comments:
I am sorry that you have to stay longer. I hope that Owen gains weight this weekend so you can go home. I will pray for you and Owen. I wish so much that I could be there to comfort you. I just want you to know that I am always thinking about you and your family.
Wow, Andrea, I'm so sorry for the news you got today. On the other hand, I believe God has you in the right spot and the right time for Owen and his heart. I really do. And I will pray that God works out all these details you are juggling right now. And that HE will be your comfort when Carson and Kamryn can't be there with you.
On a completely different note, is Carson's sister Eva Mendez??!
Oh Andrea my prayers will continue to be with your family. I know this is not what you expected and pray God will wrap his around around you.
Denise
I'm so sorry that you guys got bad news today. I hope that he gains weight and that his heart cath brings good news. I'll be praying for you guys!
Andrea, I'm the one that emailed you about making baby food! Have been waiting for an update all week so I was glad to see you made it. I'm sorry that it wasn't the best news but I agree that God has you right where you need to be! I pray that you will be home in time for Halloween - if not, though, CARson needs to overnight that Tin Man costume so Owen can flirt with the nurses in it! I wish I was closer so I could sit with you in that waiting room; I will pray that you feel some of God's comfort during the coming days!
In Him,
Jennifer
Oh Sweet Andrea. Lump. In. My. Throat. I must say it sounds like you are exactly where you need to be right now. God is good that way. BIG HUGS. You are never, ever alone. We are all here for you and so is He.
Much love and prayers,
Mindi
Andrea, I honestly don't know how you do it. I was feeling alone and isolated this and my trials are nothing in comparison. My thoughts and prayers will be with you all.
---Allison
I am so sorry for the news. I will offer prayers for Owen everyday, and I hope he'll gain weight. Thanks for sharing and take care!.
Sorry, that sucks! I will keep you in my prayers. Hope all goes well and you can go home soon.
I found your blog through Kelly's Korner and have been praying for your son for quite some time. I hope that things work out and you get some more time before a transplant. I admire your strength through all of this. I will continue to pray for Owen.
Andrea-
I am soooo sorry. I don't know how you feel but I do. When they told us Ethan needed a transplant I had the most lonely feeling. Of course I wanted to be by his side every second, but to leave my husband and children for upwards of a year was KILLING me (especially since he had been so critical for so long already). I had some offers when people heard we may go to Stanford. I will make calls Friday morning.
Much love-
Heidi
Andrea, I am so very sad your news was not better...but it does seem that the timing to be at Lucile Packard was right. We are praying Owen gains weight so you can go home for atleast a while.
We are flying out of Phx on Sunday to bring Becca up to LPCH for 3 days of testing. We will be at the clinic at 8:30 on Monday and spend most of the day. I will email your hotmail account with our cell phone numbers.
*Holding you close*
with Hope,
~ Chris A ~
Oh my goodness Andrea!!! This news stinks! I am praying and praying that Mr. Owen gains some weight. He need to put on his little tin man costume and knock doors on Halloween. It would be perfect if Owen could stay at home through the holidays. I wish I could come sit with you during the cath! Will be thinking about you this week!! Let me know if I can do anything from here.
If he does have to stick around, it will be disappointing, but childrens hospitals do a little extra something on holidays. We were in the hospital last year for Halloween and the nurses do fun stuff for the kids- the ones on the floor at least. I dressed up as a nurse, and fit right in. In fact I got climbed in the crib with Mia and got a lot of double takes by people walking by.
One more side note: Your sister in law, in that picture with Kamryn looks exactly like Eva Mendez.
I am glad you got to spend some time your fam- it is so difficult to say goodbye. We used webcames a lot so I could see and talk to the kids- sometimes it was helpful- but sometimes it turned into a big cry fest. I imagine it would be good for Kamryn. If you don't have any let me know and I'll send you some that some other transplant mom's sent me. If you ever need someone to visit with- I am here!
I am sooooooo sorry! Oh how I understand and my heart aches for you. We will pray for better news this next week. Remember Heavenly Father loves you.
andrea,
don't forget we are here now! let me know if you want some company or need a ride anywhere. im here for you...and praying.
love,
victoria
Oh dear, I'm sorry this trip has taken such a turn. I'll be praying for all the traveling and housing issues. Most of all for Owen.
And yeah, your SIL looks like Eva Mendes.
i am so sorry about the long rough day of disappointing news. Please know that I will be praying very hard for Mr. Owens weight gain and good results on Monday. I will add his name at Church tomorrow so others will join in prayer for your sweet baby boy.
I hope you and Victoria can get together for some mommy talks and understanding reticrhugs.
Please keep us posted.
I am so sorry to read this post and that you are feeling so alone and scared. If I were anywhere near you I'd come to sit with you and I'm sure all the others on this blog feel the same. So know that we are filling the chairs of that waiting room in spirit. Thinking of you, Owen, and the whole family at this tough time and sending lots of positive thoughts out to the Universe! I hope you will post an address where you can receive mail, I'd love to send you a little something.
My prayers are with you...all of you. I can't imagine its going to be easy for anyone involved, but I pray God's peace over every one of you. I don't even "know" you, but I so wish I could be there to help you. Praying...
You don't know me but I have been reading and praying over Owen for a while now.
I am so sorry that the news wasn't better.
I would love to do something to help a little. Maybe pay for a night at the hotel for you? I know it's not much but maybe it would help, just a little...
Wow, so sorry for the bad news. Hope everything goes well and if there's any way your readers can help you let us know! Wish I lived in Palo Alto to help out! And b/c its 40 degrees and raining here...but thats another story. :)
I'm so sorry to hear the rotten news. We'll say an extra prayer for you guys. I know that Owen will make tons of new friends in CA and you guys will be surrounded by new people. He'll have everyone wrapped around his finger. I can't imagine how hard it is to resist him in person. Please keep us updated. There are lots of people thinking about you.
Praying for precious little Owen to gain weight!! Praying for Owen and your family as you go through this trial. God is in control and his timing is perfect - Trust in the Lord! You, your family, the doctors and, most of all, little Owen will be in my constant thoughts and prayers! You can do this - you are a strong, brave Mommy and Owen is so fortunate for that!!
:(
Hopefully the constant drip will help him to gain some weight. I wish I could give you both a HUGE hug!!! My goodness! We are thinking og you all and sending good healing, awesome cath thoughts your way!
Lots of love and heart hugs and prayers headed your way. I am sorry things didn't turn out the way you needed. I bet he will gain weight, maybe just adjustment to the g-tube, formula cal increase (thats so hard on their little tummys) Know I am here if you need anything. Well emotionally LOL I would fly out if we had the $ I hope you find a hotel and things start going up up up!
I have been lurking on your blog for a few months at least now. I am sorry you are stuck there with Owen for a while. We have friends that will be heading out to LPCH some time in the next year because their 6 year old will need a heart valve replaced. I pray that your time there will be quick and easy. If you do end up staying for the transplant, I pray that one is available quickly so he can "get on with life."
Andrea,
I found your blog a while ago and have been following. I am so sorry for your turn of events. You are in my prayers and thoughts. I know he will be there for you. You are so strong and caring. Owen is such an amazing little dude with so much love.-Lisa
Oh, I can't even imagine. You are all in our prayers. We hope Mr. Owen gains some weight and quickly. We hope Standford area treats you well. We hope the blood test results are good. We hope you continue your amazing attitude through it all!
Andrea,
You may be without your family, but you will not be alone. You have so many people thinking about and praying for your family. I hope that those prayers cover you, like a warm blanket, reassuring you that the Lord has a plan and that He is always there with you.
You have been such an inspirational heart Mom. Always positive and upbeat. I bet you have no idea how MANY people are praying for you...and because of those prayers I am sure that Owen is going to make it out of this and live a long, happy, healthy life. You can do this.
You will be in our continued thoughts and prayers.
Jen Wright
p.s. I too thought your sister in law was Eva Mendez before I read what you wrote. What a beautiful young lady!
Oh Andrea,
I'm so so sorry to hear this. My prayers are with you, your family, and especially little Owen. I hope and pray he can gain the weight he needs and you can get to a point that even if he has to be listed you can wait outside of the hospital.
Deanna---Gracie's mamma
Andrea...I'm so sorry to hear this news. I know you were just hoping that this was a check-up and that you guys would be sent on your way, but I do believe that everything happens for a reason. Owen is one strong little boy and so is his Mommy! I pray that Owen gains the needed weight and that the heart cath goes well...thinking and praying for Owen and your family!
Oh, I was so hoping for better news! I'm so sorry you have do this alone. Little Owen is in my prayers and thoughts!!
Oh mo goodness. What a shock of bad news. I will pray with all my heart that Owen can put on some weight and you guys can be home a little longer!
Lots and lots of prayers for all of you! And don't worry, you are allowed to breakdown whenever you need to! I am so sorry that you have to be separated from Kamryn and Carson...I know all too well what that is like. We've debated over and over again about moving back to Utah so that we could be closer to family, but we know that this is where we need to be and this is what is best for Beck. Just like you know that this is the best place for Owen.
Please e-mail if you need anything! I've been down this road and it is not easy!
-Kim
I have the prayers going for you all the way over here.
I am so sorry you did not get the news you wanted. I hope things go well with the weight gain... GO OWEN!
Andrea
Sorry that the news was not what you had hoped for. God has a plan for Owen, just let him guide you. Many thoughts and prayers coming your way. I am glad that Owen is at such a wonderful hospital, getting the best care.
Take Care!!
Terri Keck
We are praying for you. Hang in there and keep up the faith. We will be waiting with you also during the cath. Although, we will not be physically there. We will be praying with you and you will not be alone that day.
I am sorry that is was less than wonderful news. I think you have every right to have a melt down or two. . .been there done that.
Just wanted you to know that I am thinking of you all and keeping you in my prayers. I am hopeful that he can gain some weight.
(HUGS)
I am so sorry to hear the not so good news! I was hoping Owen would kick butt at this appointment. I know that I am not there personally beside you right now but in the blog world I am here beside you. Just wanted you to know that you aren't alone and that you have sooooo many people praying for Owen. Praying hard for him to gain weight. Keep us posted
I am so sorry for the bad news! I will be praying every chance I get. My heart aches for your family!
I am so sorry for the news you received. It has to be an awful feeling knowing you will be there alone w/o your family beside you. Will be praying for weight gain and a great cath on Wed. Praying for your sanity, as well.
Katie Columbia
cp:IsaiahColumbia (HLHS,DORV,Post Glenn twice after failed Fontan-July'08)
www.GodsSpecialHearts.org
My thoughts and prayers are with Owen and the entire family...
Kristin
NE ohio
I am sending you a big hug through the computer. I'm so sorry to hear you will have to stay longer. Glad you were able to keep Owen out of the hospital right now but sure wish the diagnosis had been different. I'll will be praying for Owen to gain weight and the heart cath goes well. I saw someone else already mentioned this...I was also thinking that Carson's sister looked just like Eva Mendez. At first when I saw the pic I thought...oh neat they ran into Eva Mendez and then saw it was Carson's sister. Big hugs!
Definitely praying for Carson to gain weight, and for you to find a place to stay until the Ronald McDonald house becomes available. So sorry to hear that your husband and daughter have to fly home. I can't imagine how strong you must be to handle this on your own with Owen. Will be praying for God to continue to bless with you the strength that you need.
Has anyone told you all that Carson's sister looks like Eva Medez (but more beautiful, of course)?!
Post a Comment