April

I was just about to post this when I got a message from a friend. My heart hurts. I posted a prayer request on my church website when Haley went in for her cath. I got a response from a lady whos 4 month old daughter was going in for surgery last tuesday to patch her vsd and an asd. Well I got news tonight that they patched the vsd but couldnt do the other because she too has pulmonary hypertension. This sucks. I do thank God though that I have been where she is and that hopefully we can be support for her and her family. I am just beside myself. Please pray for her and her family.

side note: Just so everyone knows if at the end of reading a post it says read more, you can click on the Read More and read the rest of the post. there has been some confusion with that. ;-)

Also Tuedsay morning we have Ashleys Echo. Ill let you know how that goes.

Well I feel like I should update, although there is no real new news. Nick and I have been talking all this through with each other and with our parents. We have no suggestions from the doctors yet. The options that we know of are 1 to do surgery anyway, fixing the PDA closing both VSDs. 2 to wait longer, continue meds and O2, or 3 to stop all meds and let her be.




Ok I know we are going to catch a ton of flack no matter what our decision is, whether that be to our face or behind our backs. I truly love you all but unless you have been here you cant possibly even begin to understand how this feels.We need to hear things that are uplifting and helpful please. I am going to try and write it all out the best I can, partially for you, mostly for me to work through it all.
These options may not be our only ones. We have an appt april 17 or 19 to sit down and go over all of the expert advise Haleys doctor is collecting now. He is working with docs at Boston Childrens, Standford, Texas Childrens and Michigan and possibly national childrens in washington. something like that. While we were in the hospital the last time, Haleys doc talked with the other doctors we have worked with. They had the conversation of what if this was your daughter, what would you do. He told us most of them said they would do the surgery now. I didnt like that answer. My thoughts were no way lets wait, the resistance may go down more, they may find a cure, better treatments.....It would be a high risk surgery, she would be under for a prolonged period of time which is risky for PH. The surgery to fix the pda will be complicated and long. This will have to be done regardless of if we choose to close the holes. We could fix the holes and F her up for the rest of her life. Possible that her heart and lungs wouldnt work together that way, possible oxygen and/or more aggressive meds for ever, possible death. We would most likely need to close the holes but add a ASD which is a hole in the middle of the top two chambers as a relief valve.
 Haley has an amazing strong heart that functions incredibly well considering the defects. Some how the holes and PH are working together. No one can explain why except that she has someone watching over her. She is a miracle.
The pros of surgery now are that her heart is still strong. Your pulmonary vascular system is still developing until your are about 7. So our thoughts are if we fix it now she will have a better chance of her pulmonary system catching on and then developing correctly from then out. Now this is all our thinking with only what we have learned through out this journey everything may change after our meeting.
Next is waiting longer, Well thats just alot more waiting for the unknown. Her system is still developing so we will miss that chance if we wait. Her pressures may never go down any more. But the part i stuck with at first were there could be advances in treatments and things. They have a fund waiting for $200,000 more before they can send out money to get research on pediatric PH. In the 90's if you had PH that was just too bad, there was no info, no treatments, nothing. In 1996 the first med was approved, in 2001 the 2nd and 3rd meds approved. Today they have had 9 meds approved and information is out there, support and help. One problem, its for adults. The kids have 0 approved meds. The ones we give them are for adults and we cut the doses based on weight. Haleys meds come with paper work saying this medication is unknown to be safe or effective in children. Awesome. anyway my point is they have come along way in that time, I can only imagine when we can get kid specific research what they may find. So waiting would give time for that. But would also give time for her heart to become tired, worn out and her arteries to become even more scarred and damaged. Her PH will not go away unless it is Gods plan to heal that. But the goal would be to lessen it, relieve it a bit so it does not close down her arteries as quickly.
The 3rd option on here will probably not make any sense to most of you. Yes I am saying it is an option to stop all meds and treatment and let her be. We would obviously still monitor the condition and the future of treatment would be really unknown. Ok this is how we see this. Her heart and lungs, the PH and holes, are working together. Her heart is strong and she is normal if you didnt know about the issues. So if we do not do surgery , the medications are really just prolonging her life for a few years. A few meaning we are really not sure how many but the doc said its not much. I am really hoping this comes out the right way. I would much rather have the next 20 or so with her not attached to an oxygen machine or taking pretty rough meds 3 times a day, then have her for 25 years on oxygen and meds. This option is kind of a last resort.
This is obviously not all the information. I cant wrap my head around all of it. Its been 8 months and it is still unreal.

Ok Garage Sale Update
 We just do not have the energy or brain cells to do a full weekend sale. So we decided we are going to pick a saturday probably in May and sell as much as we can that one day. Anything left will be donated to help other families. I will have everything picked up that saturday night. There is still a ton of great stuff, I will let you know a date as soon as I do. Plan to come by and see what we have, again all the money will be going towards Haleys medical.

Saturday April 21, Kid 2 Kid on Higley and Baseline has generously offered to do a one day fundraiser for Haley. Where they will be donating 100% of the proceeds to Haleys life fund. It will be a party. they are making fliers now, as soon as I get one I will post.

Also Gold Canyon candles has a program called Prayer Child. It is a grant that they give to a child who has physical and/or emotional challenges. Well 2011 Haley was a prayer child and she received a check for $1000 from Gold canyon candles. So if you ever have a chance to order from them, please do. I believe they give out these grants every month.