Our Quiverfull

Aug. 12, 2009

Heartbroken

The past couple of days have been very difficult. I tried to downplay Noah's treatment room visits on his birthday, but in all honesty they represented part of a very vicious cycle. Simply put, we are finding it nearly impossible to keep IV access for Noah. I've tweeted some, but not all, of our treatment room visits. Noah's antibiotics and his "TPN Light" are both very hard on veins, and his IV's are only lasting 8 - 18 hours or so before phlebitis has made them agonizingly painful and impossible to use. He had 2 IV's as of yesterday morning. He lost one in the morning and one in the evening, so he went to the treatment room and got a new one. That one lasted until lunch time today. He got a new one midafternoon today. He needed blood drawn for a blood culture tonight so we were back to the treatment room. Since they needed to access a vein to draw blood, the plan was to put in another IV while they were at it, but they were unable to get one in. They did finally get blood, but no backup IV.

My sparse description is not doing justice to the situation. Noah's veins are very bad. A typcial trip to the treatment room for an IV lasts an hour or more. He has a pretty consistant pattern - the nurses dig and dig and dig to get a vein. Once they get the IV in and tape it down, the vein blows, leaving a very painful bruise on Noah's arm or hand or foot. Every time we go to the treatment room, Noah ends up blowing 2 veins before getting an IV that won't even last 24 hours. He has over a dozen painful bruises all up and down his little hands and feet and arms.

Each time we head to the treatment room Noah starts shaking in terror. The entire hour or more that we are in there he is screaming "Mommy, help me" or "I scared, Mommy," or any of a number of other heartbreaking things. He locks eyes with me and begs me to help him, but I can't. We've done this three times in the last 24 hours. He was so terrified this afternoon that he was given IV ativan to at least make him forget that session. He is starkly terrififed if a nurse even tries to flush his IV or hook up meds to it.

We need to keep IV access until Noah can get a new broviac. He can't get a new broviac until he has been 5 full days with no fever. Tonight would have marked two full days, but he has now spiked a fever of 101.3. (This is why we had to go to the treatment room for a blood culture.) He has reset the clock and is clearly getting sicker. There is no central line to cause a line infection. We have no idea why he has a fever like this.

Noah can't get a PICC line. The veins that are needed are completely shot, and they can't risk any sort of central line while he is still spiking temps. We are almost out of IV locations. Like I said, extremely skilled and capable nurses couldn't get a single IV in an hour of trying. The remaining veins are very deep and they roll. We may have to go to a femoral line as Noah simply can't live without IV access for fluids and nutrition.

I'm usually pretty good at knowing what to say or how to put things in perspective. Tonight I'm speechless. I'm exhausted and I'm homesick and I'm scared and my heart is breaking for my brave little boy. Every bruise on his body is a bruise on my heart. I can't imagine doing this for 5 or more days yet. Last night when we finally left the treatment room, he slept all night like a little koala bear with his arms tight around my neck and his legs tight around my leg. He never relaxed or let go. I'm sitting in bed with him wrapped around me now. I can't cry, but I'm shivering.

I know God is in this somewhere. I know He sees us even if I can't see Him right now. Like Casting Crowns wrote, "I'm not holding on to You, but You're holding on to me." He must be holding me even if I can't feel it. I know He is. Maybe when I'm holding Noah all night, he feels the love of God in my arms. I hope so. I sing Noah a lullaby that says "He'll wipe away your tears by the hand within my hand. The Lord who knows of tears so well must surely understand." I know He understands. I wish I did.

Kate

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Aug. 12, 2009 - prayers

Posted by Anonymous

Romans 8: 26-27
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will.

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