Wed 7 Mar 2007
Base Camp Two
Posted by Jane under Updates
[19] Comments
I’ve gotten a lot of questions from folks about why Ramona is not going up to the Cardiac Floor before her discharge. I’m going to try and explain as best I can, the way the nurses have explained it to me, although sometimes I don’t even get it.
Ramona’s heart defect is extremely rare and severe. Although Tetralogy of Fallot is fairly common in the world of congenital heart defects, the pulmonary atresia and miniscule pulmonary arteries that Ramona has make her case very problematic. The surgeons and doctors feel that Ramona has no more treatment options, besides what they have already done and are continuing to do, unless she is able to grow her arteries.
But this does not mean her condition is very stable. They feel that if they sent her up to the cardiac floor, the nurses would kick her back down to the PICU the first time they gave her a bath or changed her clothes. Her desats tend to be very dramatic. Which raises the question, “Why on earth would they send her home with us if they don’t feel she can even hack it on the floor?”
It goes back to her uncertain prognosis. Because they can’t really do much more for her, just oxygen, meds and feeding tube, it’s really important that she come home with us and thrive and grow. It’s her only chance at a long-term future. The nurse told me this morning that if she continues to be readmitted and can’t stay stable at home with us, that we would bring her back and “let her run her course”, which I think is code for hospice.
So we’re scared about bringing her home and failing. I’m scared that she won’t sleep well and therefore she’ll get into another downward spiral and we’ll have to bring her back again. I’m scared that as her body grows, her arteries won’t be able to keep up. Again, the nurse told me this morning that if her oxygen numbers start to drift downward at home, there’s not much they can do to get them back up, so we’ll have to talk at that point about comfort measures and hospice.
I’m so grateful that she has managed to get this far and really hoping that we’ll enjoy our time at home with her this time. But I’m also just terrified that this will be the thing Ramona just can’t conquer.
Pray for peace, bravery and sleep for us all,
Jane.
That sounds so hard. We will pray for you all.
Jane,
How frightening! I think those of us on the other side of blogger land find it easy to start feeling hopeful when we see those beautiful pictures of a pink and chubby Ramona. Thanks for letting us in on the reality of the situtation. I AM still hopeful! I’m praying that Ramona’s little arteries will catch up with the rest of her growing body. And I’m praying for a peaceful transition this time…that whatever happens, you will have calm, beautiful, meaningful moments with her. I remember just a few weeks ago I was praying that you would get to see Ramona open her eyes again. I’m thankful that he’s given you lots of moments with an awake and aware Ramona, and that he will give you lots more.
Love,
Karen
I’m praying for Ramona!! I think if anyone can get better, its her, she’s been so brave and fought so hard already.
I hope you can all get some much needed rest!
Dear Jane,
Thank you so much for your honesty(as usual…you all continue to amaze me). Your honesty helps me know just how I can pray for you. I will pray for bravery, peace and rest. You are a brave family.
Love, Val
I am praying for as soft a landing as possible for all the Deitrichs.
oh I am praying for you all Jane,
We are praying for you too. Maybe we should give you that womb-sounds CD… it worked wonders for Maddy.
oh, ‘ramona the brave’, but also ‘jane, andy and simon the brave’
praying for all of you
That sounds very dire. I understand why you feel so apprehensive about how you and Ramona cope in the days at home if everything seems to be on the line.
Have you run your understanding of the situation by the doctors just to check you have the full story? I found different nurses put a very different spin on the doctors’ discussion.
Hello Jane,
Here’s an idea, maybe a silly one, but here goes: there’s evidence that music can create a very stimulating environment for neurological development and can also help increase oxygen saturations and help with weight gain in babies born prematurely or with other difficulties
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14579198
(in case it didn’t work, a link to a study by Chou, Wang, Chen et al. 2003, but there’s lots of other articles too)
Last spring a pair of twins that were born early and very small were referred by their pediatrician to parent-child music classes at my school in order to help with their development, and boy are they chubby now!
So. I know that you and Andy are both way musical and probably are already singing to your kids a lot, also that it’s a long shot for you guys to find any time in your lives for anything “extra,” but if you do, I would be so very happy to come to your house and lead private parent-child music “lessons” for you and ramona (and simon if he can keep his hands off those fancy tubes!)
Thinking of you always,
love,
ronnie
I am a music therapist, and what Ronnie said is absolutely true. There is an immense amount of research on how music can increase oxygen saturation, decrease stress levels and promote weight gain in premature and sick infants. Live music is best, so singing to her while you hold her is the greatest thing you can do. Singing to her while you bathe her or change her clothes could help her stay calmer – I’ve done it with healthy kids who don’t like having their noses wiped or diaper changed – I start singing, and often they calm down almost immediately.
There is also research into playing music while an infant is eating, where the music stops if the infant stops sucking. They found that the babies kept sucking to keep the music playing, so they ended up gaining weight faster.
CDs are okay, just be sure not to leave one playing all day long – eventually she’ll just tune it out. Lullabies are best, since they have a constant volume and the rhythm doesn’t change much. Sudden changes in the music will statle her. I’ve also found that a lot of hymns or the slower praise songs have a lot of similarities to lullabies.
If you have any other questions, you can contact me at tennbelle @ gmail.com (just take out the spaces), and you can get more information from http://www.musictherapy.org.
I am praying for your whole family, and I pray that Ramona will be able to make the transition to home peacefully, and that the transition will be smooth for you, Andy, and Simon too.
Dear Jane and Andy,
You can do it; you are well-equipped. One of the wonderful memories from many years ago, is my grandfather whistling, “What A Friend We Have In Jesus” while he worked in his men’s clothing store. That wonderful friend of my grandpa will give you all the wisdom to know what to do, the strength and courage to do it, and the peace of knowing that He is in control. Just ask him for it and know that it is yours.
Dear Lord, I pray that Your peace which transcends all our understanding blanket the home of Andy and Jane. Be with Ramona in this time of transition; keep her safe, carry on your healing process in her, and grow her into a robust child full of life and love for You. Thank you for Ramona and Simon, two precious gifts for us to love and care for. Thank you for the doctors, nurses, care- givers, friends and family who are all part of your healing ministry here on Earth. Thank you for saving Ramona, for bringing her through the surgery and to this time. Lord, You are King and we ask that you heal this precious little girl in a way that brings all honor and glory to Your Holy Name. In the name of Jesus, I pray. AMEN
Jane,
We are praying for you all, specifically and earnestly.
“specifically and earnestly”…well said, Jill! Count me in for both of those.
I have to ask if you have had other opinions about her options? The doctors, cardiologist can help you get second opinions and should be happy to help they are all working to help and offer her the best. I do agree with Shannon also about asking the doctors if you are understanding right, it doesn’t seem right for them to discharge her to grow at home if she is destating so bad there at times. are you going to have a nurse at home with you? Can you ask them to write orders for a nurse at home atleast at night so you have more help?
praying for a smooth transition and stay at home. . . much peace, sarah p and the price/labno crew
Our hearts continues to ache and we will keep on praying. Let me know if you need any help this weekend, running errands or doing some laundry. I am really good at laundry and dishes as I never complain
J.
Thanks for the update on the details Jane – sounds like a tough road ahead. Hang in there, while you support Ramona to do her thing. Does “let go and let God” fit here? I’m not sure – I’m praying for you guys and so wish I could order up some fresh, hot sleep to be delivered to your door.
Love,
m
That does sound scary, Jane. Ramona does have a wonderful home to go to filled with love and peace – I can’t imagine a better place for her to thrive and grow.