Friday, July 6, 2012

Room #23

Theodore is not well.

Today has been terrible. We were home for a record amount of time (on the short side) of less than 12 hours. We brought Rambo home last night around 6pm. His numbers were beautiful. He looked great and at 9:30 his sats and heart rate were exceptional. Unfortunately by 4am Ben came upstairs and told me that he had started with an ever so slight fever and high heart rate. We thought we would make it to the morning and then get him out of the house.

Thankfully, God gave me the urging to get up and go check on him and his nurse. He was not doing well. By 4:40 we were completely packed up and on the way to my parents house. Our thought was that it had to be something environmental, something he is allergic to. So we got him out of the house and got his Claritin on board hoping that would take effect. It didn't. The escalation of his decline happened fast. So fast. And I don't know why.

He was rolling through some serious oxygen so my dad went to get the rest of our bottles from home. By the time he got back I had already called the ambulance. Rambo looked awful. He was blue and breathing extremely fast and hard. His sats were in the 60-77 range. Nothing was working. And, unfortunately, that was only the beginning.

We got to the ER and saw the same doctor we have the past three times we've been there. Thank God for that. They instantly got him on the vent and called for the helicopter. And for a while waiting for transport he looked pretty good. They got some valium in him to keep him calm so as not to fight the vent. But about 5 minutes before they arrived he started desating again. 

Ben met me at the hospital and we drove to Hopkins. All the while waiting for the transport team to call and say that they had arrived and he was in his room. They never did. We ended up walking into the PICU (we knew that's where they were taking him) and seeing his room filled with people. And that's they way it has stayed - since 10am this morning. 

Whatever is going on had only continued to get worse. I wish I could describe to you how utterly sick he looked, but it's impossible. The best I can say is that he was literally heaving like he had run a marathon. I couldn't even stand to look at him. On the vent, full support, and not helping. He is a sick little boy. I truly have not seen him look this bad since he was a newborn. 

The doctors best guess is a very sever asthma like reaction on top of his malacia plus some pnemonia in his lungs. (They did an xray.) What caused it? Who knows. Some docs are thinking that it had to be triggered by something- environmental maybe. Others don't even have a clue. All we know is that they are keeping him moderately sedated on "iso" to help relax his airways. 

The nitty gritty:

He has been on 100% oxygen since 9am and they were only able to get him down to 95% at about 9pm. If they go any lower he instantly desats. 

He now has 1 IV in his head, 1 "midline" IV, an arterial line, and a central line in his chest.

He is on lots and lots of meds- steroids, antibiotics, everything.

They are taking blood gases every 20 minutes- an hour. So far, they have looked bad. He is  retaining way too much CO2. 

His heart rate has finally come down from 170-180 to 150s. 

He is still "heaving" but slightly less than before.

His color is terrible, although he has "pinked up" a little. 

We were only able to be in his room with him for a total of around 30 minutes because there were too many people in it. He has kept everyone on high alert for over 12 hours now.

No one is saying much about how he is doing - not that they have to, you can tell just by looking at him- but the pulmonary team said with a shake of the head "Yeah, he's really sick."

They are getting an echo of his heart some time tonight. They want to check the pressures to make sure it is not being negatively affected and to see if they can get another medicine on board. 

I am still kind of in shock and can't believe how quickly this all happened. Within a matter of just a few hours he went from perfect to near death. 

We're not sure what's going to happen. They are hoping that he will turn around within 24 hours. Or at least make some progress- show some signs of getting better. 

He is not well. 

And my other children didn't even get to see me for more than 3 hours.....

Cheerfully and gratefully I lay my life and all I am or own at the feet of Him who redeemed me. And I do it while my heart lies broken and bleeding before Him. - Elizabeth Prentiss

I have reconciled Theodore to God. He is His. There is no taking him back. Whatever the Lord asks, I pray to faithfully give. And as horrible as it might sound, in the moment watching Rambo, I wish God would just take him because he is miserable. I don't understand the suffering- this middle ground. But God demands my all and rightfully so. The acceptance with joy that Theodore shows on a daily basis is a quality I aspire to. 

I love Theodore. And Israel. And Ruth. And Emma. And Ben. 

I'm hopeful that tomorrow will be better.   



  1. I don't really know what to write, but I do know that your faith in and surrender to the God who is in control and who is good is right and glorifies him. Praying for Theodore and you all tonight as I go to bed.

  2. No words, only tears. Prays for another many as he needs.

  3. I'm so sorry, Mandy. We love you, and Theodore, and the rest of the Taylor clan. Thinking of you all today. Please let us know if there is anything at all we can do.

  4. My heart is so sad. We love you Amanda Ruth Taylor and Rambo. Praying God yo do miraculous things in uour lives.

  5. I learned about "Rambo" through Ashley and I have been praying for him and your entire family since the first post I read. I know you have put things into God's hands and it sounds like that brings much peace to your and your family but I am in awe of your strength to keep on going even when things look bleak. One of my favorite hymns. Is His Eye Is On The Sparrow. I am sure you now it.

    Love and Blessing, God Bless you all and I will keep praying.

    Maryellen LaGarde

  6. Amanda and family~ My heart aches for you this morning as I read your post.....partly because I have been where you are......crying out for a miracle healing....missing my other child....trusting in God that he knows whats best.....begging for strength to make it through another day.......I am storming Heaven for you and your family today! May our God, who watched his own son suffer and die for us, grant you strength, peace, wisdom and power for whatever lays ahead!! God bless you!! (And if you need anything, please tell your parents to ask.....I would be glad to do anything to help!!)

  7. Call upon me in the day of trouble; I will deliver you. Psalm 50:15
    Finally, be strong in the Lord and in the strength of his might. Ephesians 6:10

    We know you are strong and stronger is HE! In our prayers and in our thoughts!!!
    The Bodzers

  8. lots and lots of prayers, tears, and the gift of being moved by the reminder (whether we accept it or not) that our children are His, just gifted. It is a GOOD reality. Grateful to be His with you...

    love and prayers,

  9. Our love & prayers are with you, dear Theodore, Ben & Amanda, Ed & Mac. Our hearts cannot begin to comphrehend what you are going through at this very minute, but Jesus does and HE IS WITH YOU! We are praying that he breathe His Breath of Life into His little son, Theodore. And give all His peace. We love you! Bob & Karen We have called upon our children and many faithful prayer warriors in our church to pray with us - and they will!!!

  10. So sorry to hear Theo is so sick. We are praying for all of you. Love The Arnold's

  11. I'm finally getting around to saying a huge THANK YOU to you all for your prayers and support. We are so thankful to finally be home with this big trouble maker!!