Hello Everyone!
I want to update all of you on what is going on with Nathan. Yesterday morning we went for our routine appointment with his feeding team at Children's. It is an amazing pediatrician (dr.choi...i know some of you know her kids) and 4 different therapist who have been following Nathan for 4 months now. After watching him eat yesterday they determined that he is still having significant aspiration of the milk. They feel it is unsafe and too difficult on Nathan and us to continue on the feeding path we are currently doing. On a good day, Nathan is still only getting about 1/2 of what he needs. They decided to admit us yesterday and they put an NJ feeding tube in his nose to supplement his feedings. We will be here awhile until they do an MRI of the brain, scopes for GI issues, and work out the feedings. Unfortunately the tests require general anesthesia because of Nathan's risk of aspiration, so it is very difficult to coordinate everything and have him fast for 8 hours with each test.
The large team of specialists we are working with all feel there could be a strong chance something is going on in the brain that is causing his feeding troubles and possibly the lack of movement on the left side of his body.
The tube feeding is going to take awhile to get worked out. We feed him as much as we can and what he doesn't take we give through a tube. It is an extremely frustrating process and Nathan is struggling to accept the bottle. We now work hour by hour and take each step as patiently as we can.
We have learned to ask a thousand questions and take each challenge as it comes. You never want your child to struggle like he has had to and I know we are in good hands here.
Please pray that Nathan starts to accept the bottle and that we get a clear MRI. Those are our biggest challenges right now.
Thank you all for your thoughts and prayers. Nathan needs them right now.
Love,
Beth
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| Nathan Loved Strooler Rides on the 7th floor. |
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| Although he was going through so much, he still wanted to play with his toys. |
Beth, I'm so sorry to here of this news, but know the prayers are on the
ReplyDeleteway. If you and Mike need anything, please don't hesitate to ask. Keep the
faith!
Love,
Ernie
Hi, Beth,
ReplyDeleteThank you for the update and I am so, so sorry that all of you are going through this. I pray that his brain is fine and that they come up with a better way to help him. I pray for you and Mike, too; this has to be so hard for both of you. Please let us know if there is absolutely anything that we can do.
Love,
Krista
Beth....
ReplyDeleteOne day at a time...and on many days just one step forward, but you will get there. The Nasal Gastric tube is not too invasive and will allow you to supplement with bottle feeds as well. John had this type of feeding tube for about 7 weeks....3 at Children's and 4 at Transitional Infant Care, a private neonatal hospital which used to be in Shadyside. It allowed him to gain some weight without using all of his energy for feeding. You know that I will continue to pray for you and for Nathan, having walked a very similar path. While none of us know the plan for Nathan...we do know that there is one, and we also know that Nathan was given to you for a reason...there is definite purpose here! He is blessed to have you, Mike and your entire family in his corner. It takes a village; this is your gift to Nathan. My heart is heavy for you knowing the magnitude of your worries and fear surrounding all of this....allow your faith to see you through; Nathan is in God's hands.
Love,
Anne
Beth- Thank you for the update. I'm not sure what to say, except that we continue to pray for Nathan and for you and Mike. I used to work for Children's Hospital and know that Nathan will be well cared for during his stay. Please let us know if there is anything we can do for you beyond our prayers and caring thoughts. I'm not working this week and can be available if you need anything brought to the hospital or if you need someone to run errands.
ReplyDeleteFondly,
Karen
Hi Beth,
ReplyDeleteThanks for the update. I wanted to call but didn't want to wake you in case you were getting some rest. I know that spending the night without Nathan was really hard on you and I can't believe you're thinking of us! The kids will keep practicing and will be ready whenever you hold the recital.
You're right, Nathan is a toughie and so are both of you. Maybe they should have tried this a long time ago. The poor little guy is waiting to be able to eat your's and your Mom's good cooking and hasn't been able to yet! Our thoughts and prayers are with all of you because I know this is just as hard on you as it is on him. Keep us in the loop, we'll be thinking of you.
Love, Pat, Randy and Katherine
Hi Beth -- Thank you for the update! Nathan is in good hands at Childrens. We are praying for him and will definitely continue. Please do not be concerned about the recital. It is not important right now. You need to be with Nathan and not worry about other things. I am sure everyone feels the same.
ReplyDeleteLove from all of us,
Lori
Beth-
ReplyDeleteOur thoughts and prayers are with you, Mike and Nathan as you tackle Nathan's feeding issues. You said to me before family (and one's health) definitely come first. Please do not feel bad if you need to cancel or reschedule the recital - we all understand your situation. I remember early on in my career working with infant tube feedings and I understand what you are going through. We will be rooting for your little guy and hoping the doctors can find out what is causing all of this.
Take care-
Sonya
Hello Beth,
ReplyDeleteWe truely understand what you are going though with Nathan. Our
prayers are always with him and your family. As we live so close to
you, please let us know if we can be of any help, We would like to do
our best and help you out.
We will keep you all in our daily prayers and hope for a fast recovery
from the stress you are going through. I am sure God has a plan to
bring you all out of this soon....
Keep up the good faith and you would see miracles happening....
Dont worry too much about the recital, we are ok either ways.
take care,
love and regds
Hi Beth,
ReplyDeleteI hope things are going well and Nathan will be coming home very soon. We're thinking of and praying for all of you.
Since you have tentative plans to go on with the recital on Sun. I made some cookies today. If it doesn't work out I'll donate them to the staff that took care of Mom at Wexford House. No matter what, I'll save you some shortbread ones.
Please let us know how things are going when you get a chance.
Pat
Dearest Bethy, Mike and Nathan
ReplyDeleteOur thoughts and prayers are with you.
Much love.
-Teresa, Frank, Jack, and Coleman
Hi Beth! Thank you for the update. I've been praying for the 3 of you everyday and wondering how things are going.
ReplyDeleteI'm sorry things have been so challenging for you guys. You've been such an incredibly good and strong Mommy for Nathan. Keep it up! I know it must be tiring but hopefully they will soon find a cause which will enable you guys to continue working toward a solution.
I wish there was something we could do to support you or help. We will keep you all in our prayers each day and look forward to hearing how Nathan is doing.
Hang in there!
Love,
Tina
thanks for updatimg me.. Ihave been in conatant prayersllHE HAS BEEN SO SPECIAL AND ADORable..WE NEED A PERFECT SPECIALIST TO FIND HIS PROBLEM..LOVE YOU ALL SO VERY MUCH..G GRAM NORMA
ReplyDeleteHi Beth
ReplyDeletePlease let me know if there's anything I can do to help you. I'm sorry to hear about all of this. I'm praying for Nathan
Love,
Carla and Aaron
Hi Beth,
ReplyDeleteI got the update after the MRI. Hope Springs Eternal - we are giving Nathan, Michael and you all of our hope, love, faith and prayers. Let us know if there is anything else we can do for all of you.
With much love,
Diana