Another quiet day...overall a good day with baby step improvements. After continuous IV ventolin infusion and a ton of steroids, Noah's lungs are finally opening up and the ventilator is able to do it's job. He is spending alot of time coasting on the vent (allowing it to initiate his breaths for him), which is a good thing for him right now. Blood gases are improving and the plan is to try to wean down the IV ventolin overnight. His secretions came back growing Adenovirus, so we have an answer to the nasty culprit that sent Noah into this downward spiral.
He recieved another blood transfusion this morning, as his hemoglobin continues to drift down. He is still puffy, but getting rid of lots of excess fluid with the Lasix...all good things for those lungs. We started a teeny bit of pedialyte running through his gut, but his abdomen is hard and distended. It's no use in trying to feed him right now, so we are starting TPN to get some nutrition into him. Potassium is still a big issue, and he is needing crazy amounts in his IV maintenance fluids. His heartrate has been a bit irratic, but that may be due to our potassium jumping around so much.
I've allowed myself a bit of a pity party today over Christmas plans...looks like we are settling in to spend Christmas in the PICU. Yes, it's just another day, but still so hard to be here this time of year...listening to those around us planning their dinners and gatherings. Thankfully, our kids are quite happy where they are, even though it's not the Christmas they had anticipated...and Noah is with us...that is what's most important.
Once again, I am overwhelmed...so much love and prayers from so many...many of you who know us only through a computer screen. Please keep the prayers and comments coming...they are what sustains me in these long days.
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18 comments:
Thank you for the update. I am glad to hear he is doing better. I am praying for you and I am not alone. I have spread the prayer word to several people who are also praying.
I am sorry that your Christmas plans have not turned out the way you want...for all of you...
But I am also thanking Him for Noah's life...He has touched my heart and I know I am one of many, many. :)
I have been thinking of Noah a lot lately. I had not had a chance to read his blog in a while and had heard that he was in surgery the other day. I immediately came here for an update. My thoughts and prayers are with you all. Noah has touched me to the core and I feel like I know him. I will be praying for a Christmas miracle this year.
i've been thinking about you guys all day. i'll be sending lots of prayers your way this Christmas. that you would be able to find joy amidst all of this unknown. :)
We don't personally know each other, but through a friend I found your website. Our children were in the hospital together last November. I just want you to know that we are praying for you during this difficult time. Reading your blog has made me take a step back and remember what Christmas is really about. God Bless.
I haven't checked in on you two in a week or so, due to my final exams...imagine my surprise tonight when I discover you are inpatient again. I have made Noah my special Christmas wish to my Lord...may He sustain you all over the holidays.
"Each day is a day that God has given us, and each moment of that day is in His hands." - Roy Lessin
May you feel His hands on you as you take it moment by moment. Love, hugs and prayers - Kim
Just wanted to add my voice to the others reminding you that many care and are praying for you and your family. May you feel God's care surrounding you.
We have learned some lessons these past 3 1/2 years. We know that when we make plans, God can choose to change those plans. We don't always understand why He does ,the things He does.
This will definitely be a Christmas you will never forget, but God is with you. He promises that His grace is sufficient, and that there is no pit so deep, that God is not deeper still. Hang on to his grace. You are on our hearts constantly. The kids are fine, and they are counting the sleeps until they will see you on Sunday. We love you both so very much, and Noah, you are our little angel. Hang on buddy. We'll see you soon. Love mom(granny)
Nichole, check out erin's blog. mom
I would totally be having a pity party as well. It's o.k to do that! I'll really be praying for you tomorrow Nichole, that God would give you peace. We love you and will miss you very much.
Laura
Hi Nichole, I have not checked your blog since Wednesday. I am so sorry to hear Noah is in the Hospital, but glad to hear he is doing a bit better. Lots of prayers, Erica
praying for you and your little lamb
Hello- I found your story on the wishtrippers thread on disboards. I had the women from my church at our house last night and we had a special prayer for Noah. I will continue to keep all of you in my prayers.
Carol ( aka oklamomof4boys)
Noah will never know how many lives he touches, and neither will you Nichole. How God continues to use him is amazing. He is reaching more people for Jesus, than any of us ever will. Blessings to all of you, and a very blessed Christmas. Your other kids are in my prayers as well. A prayer warrior
Hoping and praying that Noah continues to improve and that he is soon out of PICU.
Please believe me when I say I will be thinking about you on Christmas day. I am so sorry that you wont be where you wanted to be for Christmas, you are allowed your pity party. There is nothing wrong with feeling sorry for the way things turned out.
Continue prayers coming to you and to Noah.
Love
Mandy
Thank you for your blog. My daughter will also be in the PICU over Christmas. I hope your little boy is home soon.
It's hard to be so happy and so sad at the same time. I hope you have a nice Christmas.
I just wanted to let you know that I am still praying for Noah and your family. I'm so glad that he is making some little improvements. You have all been on my mind a lot in the last few days. I can't imagine all of the conflicting emotions you must be feeling right now. My thoughts and prayers are with your whole family.
You are such a strong woman to have endured so much and still be praising God in the midst of your storm. I cannot even begin to imagine what it has been like for you. Thank you for sharing your journey with me and so many others. My love and prayers are with you and your family this Christmas and always.
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