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
Just wanted to give a quick update. I'll try to at least give short updates as much as I can. Molly is still on dialysis. They are able to finally pull fluid off of her. Her blood pressure is tolerating it. Dopamine has been weaned to 4 mc/hr. She is still on norepinephrine. I think they want to wean dopamine completely off before the norepi.
Her blood gases have been terrible yesterday and today. Her CO2 is 90. We want that to be less than 60. They are not making any vent changes because her settings are already pretty high. Any higher and her lungs could pop basically. So, we just wait and see if she corrects it on her own. I'm hoping pulling more fluid off will help with this also. They will be checking her heart and eyes for fungal functions. They are doing blood, urine, and trach cultures and started her on vancomycin today, but keeping a close eye on her levels. She is still on an anti-fungal.
She is making urine on her own and pooped twice, which is amazing.
We need prayers for Molly. Please pray that her blood gases get better. That's probably the most worrisome thing right now. I'll try to update if anything else pops up.
As always, thank you for reading and praying. Thank you to all who supported us on Saturday and to everyone who donated their time and made donations. Thank you to Nicole for helping organize everything. I love you sistah souljah.
Molly's liver is not supplying adequate blood flow to her kidneys. That is the reason for her kidney failure. As I type, they are doing an ultrasound on her jugular veins to see where we can put an intrajugular vein for the dialysis. The one we used last time cannot be used again. She had a broviac in her right one which they are checking now to see if it is occluded or not. There are two other possible sites in her femoral veins. The problem with those spots is that her belly is so distended it may affect the ability of the blood flow to and from the heart. Her nurse Heather today said Molly's little body is just getting tired. That breaks my heart.
Basically it boils down to dialysis working or not. It may not work and if it doesn't work, we may have no other options left. Please say some prayers for the three of us.
Tim called this morning to check on Molly around 8:30. The nurse said she was doing okay....but....she hadn't peed since 2am. That is not good. You may recall this happened about 5 weeks ago and Molly had to go on dialysis. As of right now, she has a foley in and some urine did come out. They are doing cultures. Her CRP is up about a point. Her BUN went up from 50 this morning to 62 this afternoon. This is a measure of how well your kidneys are functioning, or how "happy" they are. We would like it to be less than 25. So, 62 is not good. They are going to do an ultrasound of her kidneys, give her some albumin chased with lasix in hopes that pulls some of the fluid off. That extra fluid that is not being peed off is collecting in her tissues, but mainly goes to her belly. It is way more distended, so taut that it is shiny. This makes for an uncomfortable Molly. She has been more lethargic the last couple of days too. Sleeping most of the day, even more so than usual. So, that is where we are at right now. They consulted nephrolology (kidney docs), so we will see what the plan is.
On a better note, her bili was checked on Monday and is down about 3 points. It sits at 15.2. Yay omegaven! Her skin tone is so much better. A little pinker, still a little yellow though.
We need prayers for Molly's kidneys....that they get happier and produce pee pee. Thank you!
No word from Boston yet.
I know I haven't been keeping everyone up to date on Boston. I'll get to that soon. First off I'll talk about Molly! She has had 3 really good weeks. She is now 9 months old actual, 6 months adjusted due to her being born 3 months early. We have been sitting her up and her head control is actually pretty good. She can turn her head when she sits up. Physical and occupational therapy are supposed to start coming by 4 times a week....I think. She needs it. We have been keeping her from just lying in her bed all day. We put her in her bouncy seat and in her boppy pillow and hold her. And next up is a bumbo seat! Both grandmothers have been able to hold her and today Aunt Nicole will get to hold her! This is very exciting...both Molly and auntie are very excited.
Boston.....we had her entire medical record sent to the Boston docs. It took about 24 hours for her medical records to be downloaded and put on CD due to the fact that her record was 5,000 pages long. So, Boston got the records and a couple of days later decided they wanted paper copies of only specific things. Those were resent yesterday. Now, we wait. We have not been given a timeframe as to when we might know something one way or another. It sucks having to wait, but we are used to that. Now we pray for no infections until then. Although we did have a positive respiratory culture taken 2 days ago. Thank the good Lord no blood infection though. She is currently on 2 antibiotics until the respiratory culture is identified.
She is still getting omegaven. At last check (Monday) her direct bili was 18.9. It's not going down like I hoped it would. But we also had about a 3-week setback with that last round of sepsis and dialysis. Her liver labs are only done every Monday now. Her color is so much better though. She no longer looks orange and is now just a slight shade of yellow. Yesterday marks 8 weeks on omegaven so far. Please pray that she stays infection free and that the Omegaven helps her liver!
Thank you to everyone who has signed up for Molly's walk. We have only gotten about 6 forms so far. Please send in your forms so you are guaranteed a shirt in your size. We have now added 2XL to sizes due to repeated requests.
Thank you to everyone! Thanks especially to Nicole for working so hard to make this run a success. Thanks to mom and Pat for helping to get the word out and getting sponsors.
