Our family will be fasting this Sunday. We are also asking for all the prayers we can. We are specifically asking for prayers to:
1. To know if it is in Parker’s best interest to have him undergo another right heart cath.
2. To know if the last heart cath results were indeed somehow wrong and should be thrown out.
3. To know the best way to address Parker’s aspiration issues. It’s so hard when you are so close to a situation to know the proper decisions to make. I’ve spent the last almost 6 years praying that I wouldn’t miss something or make a decision that would cause harm or pain for this Bravest Hero of ours. He simply deserves so much more.
I need to be able to do more than just think I’m making the right decision. Or hoping that I made the right decision. I need to KNOW through the Spirit the answers to each of the questions above. I’ll possibly be going against what Cardio or ENT or Pulmo thinks I should be doing. I’ll need to be able to KNOW that I have made the right choice.
I’ve been blessed with these types of experiences before. When I just KNEW. When the peace was so strong and I just knew. I need to be blessed with this power again. It has a single source. It comes via the Spirit directly from my Father in Heaven.
4. To ask for Parker to be blessed with increased health. For lower pressures to be found within his lungs.
5. That the next cath, whenever it may be, bring us a bit of peace rather than the fear and uncertainty the last one has brought.
The power of prayer is an amazing thing. We’ve felt your prayers in the past. And we humbly ask for them again.
i am and have been praying. ~hugs
I’ll fast with you this Sunday and keep you in my prayers every day. Did you get that priesthood blessing for yourself yet?
After we break our fast tomorrow Reed and my 21 returned missionary son will be doing the blessings. How perfect is that?
Thank you for fasting with us. *muwah*
Twitter: mamikaze
Sep 17, 10
Oh my, what a conundrum. Opposing specialists I’m used to, but one doc contradicting himself constantly would make me batty.
We’re praying for peace and strength for all of you.
So, what do you do when you have opposing specialists? I thought the second opinion Pulmo would be the tie breaker for us.
But the cath thing. I’ve kinda lost some faith in our Cardiologist. Okay. More than some. Who continues a heart cath when you kid has been over anesthetized and has no airway provided?
Twitter: livingingrace
Sep 17, 10
Although I cannot fast for you guys, I will be praying specifically as y’all have asked and believing for miracles!
Love you.
Kelli,
Girl, I hope you know that we keep you in our prayers and include always in our fasts.
My thoughts and prayers are with you in this process.
Twitter: therextras
Sep 17, 10
Praying for Parker and Tammy.
I have a 17 yr old daughter with TOF, PA, PAH & asthma. Her pressures are 78- 88. If you looked at her you would never know anything was wrong with her & with 43 pills a day (including Revatio & Tracleer for her PH), 02 at night, pacemaker/ICD her quality of life is, at this time, good. I am wondering if you have sent Parkers records out of state to a ped cardio who is a PAH specialist to get a second opinion. We live in Az but see a PC PAH specialist at Lucile Packard Children’s in Palo Alto…they have not only saved her life but given her a good quality of life. Maybe they could help you make this challenging decision with peace.
*Praying for you*
with Hope,
~ Chris A ~
Tammy, you know I love pulmo, and have serious issues with cardio, but take those away, and I still agree with pulmo. Why take him to the cath lab if his heart is smaller and his lungs look better? You can always do an echo and get some baseline numbers, if he’s that stressed about it. But its obvious that he’s doing good, so like I say, why rock the boat!
Give him some time. He still has major growing to do, he’ll eat by mouth someday!
Also, about the aspirating. I know its horrible that he can’t eat by mouth, but he’s still so young, not even 6, and definitely not the size of an almost 6 year old
We have an echo appointment November 23. Then we have a HUGE pow-wow with Cardio. If echo hasn’t changed dramatically for the worse, we are going to beg off the cath. Okay. Maybe not exactly beg….. ahem.
I need some time to see if we could take Parker to Denver for his next cath. Or maybe even Cali. Will my insurance cover it? Will Medicaid?
The thing is I need to find another copy of this cath that shows the blood gases taken. When Pfeffer pulled up the cath on Wednesday the blood gas results had been removed.
Tammy
I have many times taken my daughter out of state for second opinions on things. We do not have Medicaid only Private insurance. Medicaid does not cross state lines, so Medicaid would not cover you out of Utah. Medicare does cross state lines, so if you have Medicare you may be OK. Most private insurances especially PPO’s cross state lines with no issue at all. When we are traveling to other states, I look on the Web site for our insurance company and then check the in network information for the state we are going to so I can see if our appointment will be covered at the high rate or the lower rate. So far we have been lucky that we have been covered everywhere I have really felt strongly about going. We have a PPO so I do not need prior auths or anything else. With an HMO it is somewhat more complicated, because you have to have approvals. I also when I call to make the appointments double check that they will take my insurance. I have found most places are very willing to work with me when they find we will be traveling hundreds (sometimes thousands) of miles to see their doctor. I have many times been able to talk with the doctor or midlevel before we go so we are able to get the most out of our visits.
As far as the blood gas results being removed from the cath report, there is a back door so to speak. The blood gas results had to have been run in the lab. If you can get a copy of all of the ABG’s and blood gasses from the lab, they will all be time stamped. You can then correlate the results from the lab with the times on the cath and get the information you need that way.
Wanted to pop over and actually leave you a real live note so you would KNOW our family is, and will be praying for your family, Tammy.
Decisions like these — wow, they’re so hard. SOOO hard. I know we’ll have more in our future too one day, and I loathe them even now.
We pray for you often, but we will be lifting you up especially this week.
Hang in there, Girlie.
Hugs,
~Michelle
Prayers going up.
Praying for Parker and all of you as you make more decisions for him!!!
Tammy-I have been reading your blog for awhile, and I am in constant prayers for you guys. Parker inspires me everyday. While my medical issues do not rival Parker’s, I too struggle with knowing what next step I should take. When one doctor gives you one solution that doesn’t work, and the other tells you that it is not treatable, and another wants to help but just does not know how-you are left so frustrated and hurt. You can only see so many specialists until you just start to loose your mind-and your savings account. I’m 20 and up to my ears in medical bills with still no answers. I continue to pray for you and have high hopes that the Lord will guide you in this journey. I just with I could have some answers for you as to what for you two to do next. <3
Sending good thoughts your way.
My husband and I were moved from your prayer.
We are praying that god will help you in your situation.
When we find our self in times like this we use holylandprayer.com
It helps us feel closer to god when we need it most, I truly recommend you to try it.
God bless you.
Sandra.