This week has not ended like I anticapated it would. Danielle had an ok week. Nothing out of the ordinary except for some blood work that I asked to have. I have been having a feeling lately that something had changed. Wasn’t sure what but I felt the need to know. Hospice came out to do their weekly visit and I asked if they could do the draw. I was kinda thinking that her liver enzymes or kidney function was off more than we had known about in the past. It turns out that both of those are relatively ok considering, it’s her potassium and co2 again. Potassium is critically low 1.7 (normal 3.5-5) and her co2 is 48 (normal 20-32). She had this issue months back and at that time we decided to give apricot nectar a try. It did help to bring her potassium level up which was good. But since it has gone down again and much further than last time that prompted a lot of questions for me. Our ped (who is the best ped ever!!!!) couldn’t really answer any of my questions so he called down to Children’s and spoke w/a cardiologist who said he was very surprised that Danielle was still living. He never had a patient w/that low potassium that was still living. Most doctors don’t and will never see a patient w/that low of number because they treat it before it gets that low. In his mind, he doesn’t see Danielle living much beyond a week and I was told to begin getting things in order. In speaking with hospice it was agreed that in general they go off of how the patient is presenting not the numbers. That’s important to point out because we don’t know how long she has been sitting w/this low number. We haven’t done a blood draw in months so it’s likely that she’s been down at this number for some time which really negates the cardiologists opinion. Nonetheless, we all agree that no one can sustain life for very long at the numbers she got. She will probably start to exhibit an irregular heartbeat and go into cardic arrest. We do have a DNR in place and our nurses are aware of it.
Tony and I did take a trip to the funeral home today to start getting things in place. I realized how unprepared I was when we started talking about things. You’d think after 3 1/2 years of dealing w/this I’d know exactly what we wanted, etc. The one thing we knew for sure we wanted to do was to have her brain donated to science. All of the paperwork has been in for months now but we need to figure out the last minute details on that. From what I was told there aren’t many late infantile mld brains at the “brain bank”. I know that sounds funny but that’s the actual name. It’s important to us to do this in the slightest chance that her brain might be a “light bulb” moment for a researcher. We’d love to donate any other organs but they aren’t much good to anyone else.
In order to help keep her comfortable her meds were increased again this week. She sleeps all the time now. The only time she is awake is if she is in discomfort/posturing. She did take all of her feeding today though, so that was nice to see. Hopefully she’ll have a restful and good night. We are still moving ahead with plans that we have made for the weekend. Maybe she’ll open her eyes when she hears the chaos in the house tomorrow for Halloween. Lots of pics will be taken. That’s for sure.
Our little buddy Lucas is still in need of prayers. He’s doing slightly better but still has a long way to go.
Thanks for checking in on Danielle today. I’ll post more as needed.
With love,
Megan
-
Hi Megan,
Thanks so much for updating this page. I pray for all of you, especially your sweet little Danielle. This is all so sad. Hang in there.. we’re all with you. -
Megan you are being so strong and Danielle is a fighter! Who really knows how long she has. I love that you are seizing every moment with her to make memories.
I thought the Brain and Tissue bank does all the final arrangements. They just like to be kept informed if things are turning.
I’m praying you all have a memorable weekend (in a good way) and that Danielle keeps going and proves the doctors wrong!
Butterfly hugs,
Teryn -
Megan, I can’t imagine the courage you and Tony bring to each day, but we are praying every day for God’s grace and mercy to continue to bring you the strength He has given you through now to be such a blessing to your precious Danielle, and she to you. God bless you all. With love, Susie
-
Megan, I am sorry to hear this sad news. First of all i want you to know how much I admire you and Tony for stepping up and handling such a difficult situation that you found yourselves in at such a young age. Never, never think you could have done any more. You did a wonderful job and I know Danielle knows how much she is loved. Be brave and strong and thank God for the gift he gave us in a wonderful healthy Anthony.
You are all in my prayers and if i can help in anyway just holler.
I love you guys.Aunt Gloria
-
Hi Megan,
I am so sorry about this turn of events. I’m glad I was able to be a part of Danielle’s happy baby days and will always remember her! I’ll pray for peace and comfort for all of you.
–Gena Mayo -
Megan,
Robyn has kept me updated and I just got on your blog a few days ago.
Just wanted to say that my prayers are with all of you. Nothing can compare to what you are going through and I won’t ever say ‘I understand’ so I just send my love and lots of prayers that God will continue to support each of you in whatever it is that you need at the time.
He is with you all and will be there for Danielle.
Love, Judy -
I think about you all the time and pray that Danielle is feeling some comfort through all of this. I truly wish there was something I could say or do to make it better for you all. Ive been keeping up with the blogs on some of the other families as well and my heart hurts for all of you. You are all so amazingly strong and I just hope and pray that you all find some peace with all of this.
Love, Robyn -
Dear Megan, Tony, Danielle and Anthony,
I am sure that Danielle is aware of how much each of you love her. Both Aunt Emily and myself are in awe of the parenting skills, the perserverance and love that you have for each other, your children and yourselves. I doubt if I could do what you have done.
We love each of you very very much.
Love Uncle Bill and Aunt Emily and Cousin Bill
-
Megan and Tony,
My heart is heavy as I read this last posting, the two of you have been so strong and there are no words to express how much I admire both of you for what you have gone through. The love you have given to Danielle is all that can be asked of any parent. Hold on to each other as you take the next step through this journey. We are all here for you, if you need anything we are a phone call and a car ride away, whatever you need just call. You will be in my prayers and I love you.
Auntie Chriss -
Megan, Tony, Danielle and Anthony,
I have been keeping track of Danielle through your website and Grandma Marna. I pray that God gives you the strength to get through this next challenge. Tony and Megan – you have done an amazing job with Danielle. Please remember Jeremiah 29:11 “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.”
It is difficult at times to remember that this is all part of God’s plan. I will keep all of you in my prayers.
Cindy Page (Arizona) -
Megan,
This is Danielle from the Pediatric Place. Christie just e-mailed me the link to this web blog. I have thought about you, Danielle, and your family often since I worked at TPP. I am so sorry that things aren’t going well for Danielle. I will keep all of you in my prayers.
-
Megan,
I am saying extra prayers for you and your family! What sad news, not one of us knows when our choldren will leave us, but we have made there lives the best we can. You have done a wonderful job with Danielle!
Lots of Love,
Libby
Comments are now closed.
View comments here - scroll to page bottom to leave a comment
12 Comments so far