http://www.westoaksfuneralhome.com/tribute/details/422/Molly_Paige_Blanchard/obituary.html#tribute-start
Plans for Molly have been made. Visitation Wednesday night, 6-8 at West Oaks Funeral Home in Sulphur Springs. Graveside service at Elm Cemetery in Rains County at 9:00 am Thursday morning. Sulphur Springs Floral will be doing flowers.
For anyone reading this that doesn't get my Facebook posts, my sweet baby girl passed away in my arms today around 4:00. She no longer fights and is resting peacefully with her aunt Paige.
Tim and I spent the night in the hospital. The attending called us at about 10:30 last night. Molly's blood pressures were very low and she said she wasn't sure Molly would make it through the night. She did though. But she is very weak. The day doc said it could go either way at this point. They are having a very hard time finding pulses. This makes it almost impossible for the pulse ox to pick up her sats and for the cuff to get a bp reading. The doc wants to keep her comfortable. Tim's parents, my mom, and Nicole are all on their way to the hospital. Please pray for Molly and all of us.
So, I know I promised a blog update before today. I'm sure you guys will understand. Lots has happened in the world of Molly. Sometimes that's why I wait to blog because things can change in the blink of an eye....as I've always said. We finally got word from Boston last week that they did not think Molly needed new intestines and they said they wouldn't give her new lungs. I'm not sure if it's because they didn't think she needed them or because they didn't think she was a candidate for some other reason. But, they did say they would evaluate her for a new liver. However, Dallas Children's offers liver transplants. So, we had to exhaust that option first. So, GI doctors and the transplant surgeon evaluated Molly and decided she wasn't a candidate for a new liver. We never talked directly to the team because quite frankly we didn't care to know. We know they said no and that's all we needed to hear. I didn't want to hear how bad her lungs are or that she might not survive surgery. We are already aware of these 2 things. It's hard to hear day in and day out how sick your daughter is. So, we just choose not to talk to many of the doctors any more. And when it is necessary for us to, Tim does the talking and listening. I can't take it any more.
Back to Molly. After Dallas said no to transplant, we put it back in Boston's court. They were going to present it to Medicaid to see if we could get the transfer. We had an accepting physician in Boston and it was up to Medicaid. We were told we would know something within 48 hours, which would have been this past Tuesday. Now, the twist. Boston called the attending physician in Dallas Friday evening. They said that Boston is not listed as a provider for Texas medicaid and we had to exhaust all options in Texas first. Why they didn't tell us this 7 weeks ago when we started this whole Boston thing is unknown. They gave us a run around for 7 weeks, in the meantime Molly's kidneys failed and onto dialysis she went. To say I'm pissed off is an understatement. All we can do is press on, like our baby girl does. Exhausting all options in Texas first means now we have to try Texas Children's in Houston as they do liver transplants as well. They now have all of the records they need. But the doctor that has to review her files is on vacation this week. Of course! We hope to find something out the beginning of next week. And we will go from there.
Meanwhile, Molly remains on dialysis. Tomorrow puts her at 2 weeks on it. They have been able to pull off a whole lot of fluid. She looks so different! Not puffy at all and her tummy looks so much better. Her lungs haven't had to work so hard now and her vent settings have been able to be weaned. Finally. Of course she remains on TPN and omegaven. Her color is normal! At last check her direct bili was 13.4. But don't get too excited. The dialysis pulls off some of that bilirubin too. It's good to see that low number though. It's still far from normal (< 1.0), but it's so much better.
According to the nephrologist (kidney doc), she has to pee on her own to come off dialysis. She hasn't peed in quite some time. He does say that she will start peeing and her kidneys will start working again. It just takes time and patience. Meanwhile she doesn't like to be touched really. I think that new catheter in her neck hurts and is uncomfortable. This makes it hard for me and Tim because we can't really touch her much less hold her, which is really hard for us. We go from holding her and putting her in her bouncy seat to not being able to touch her. But Molly trucks on and so do we.
We need prayers for Molly to pee pee. And for Houston to say yes to evaluating Molly. Texas Children's hospital is ranked #4 in the country for pediatric hospitals. If we can get her there, I know only good can come out of it.
Thank you for continued thoughts and prayers.
Just a real quick update. Promise to go more in depth tomorrow. We are currently waiting on medicaid to decide whether or not Molly can go up to Boston for a liver transplant evaluation. We hope to know something by Tuesday. They did accept her as a patient, it's all up to medicaid at this point. If they don't accept it, not sure what we will do. Dallas will not list Molly for a liver transplant.
More tomorrow....but Molly is good!
So, Molly has a GI bleed. Nurse Heather said she had about 50cc of blood in her diaper this morning. They consulted GI to see if they want to do a study on her gut (what an idea...I've pushed for this for months now). Until then they started her on a med to slow blood flow to her gut.
She has been requiring more oxygen. At times it has been as high as 100%. Still pulling fluid off with dialysis. Dopamine is off. Norepi is close to being off, so her blood pressure is staying good.
Prayers now for the GI bleed to get better and for her oxygen needs to go down. She had a better blood gas this morning, her CO2 was 78. Prayers answered in that department! Please keep them coming.
Amy
