"What would have become of me had I not believed that I would see the Lord's goodness in the land of the LIVING. Wait, hope for and EXPECT the Lord. Be strong and of good courage and may your heart (Ned) be sturdy and enduring.....Yes, Wait For and Hope For and Expect the Lord."

Psalm 27:13-14 (Amp)

Wednesday, March 12, 2008

One Crazy Day

Yesterday was quite hectic in Ned's little room. We had some issues with the air tube from the vapotherm again. Everytime I looked down, that tube was in two pieces and poor little Ned wasn't getting any support. I tried to hold him and the airway tube, but he had already gotten so worked up working so hard to breathe that he was moving way too much causing the nasal cannula to pop out of his nose which didn't help matters at all. I finally put him back in his bed and called the respiratory therapist to replace all the tubing. It turns out that the nasal cannula he was using didn't match the vapotherm tubing and that's why it kept popping off.....good to know! They had also been trying to wean him off the vapotherm yesterday, but with all of that going on and the weaning reductions going a bit fast in my opinion, he ended the day back up at 5 liters (he'll need to get down to 1 liter to transition to the regular oxygen/nasal cannula).

After we worked through all those respiratory issues yesterday, Ned had some vomiting problems last night. Around 8:00 he began acting really unsettled and uncomfortable. He was just jerking around in the bed, his heart rate and respiratory rate were on the rise and then he started retching and throwing up. It definitely wasn't spit up like I used used to with Jack. You know, that kind of comes out of nowhere. One minute you have this smiling happy baby and the next second, spit up is everywhere, but the baby seems to be totally unware that the event has occurred. This was more like an adult would wrecth down deep before being sick with a stomach virus. His little body would heave and heave and then just a little bit of milk or medicine or whatever would come out. They finally stopped his feeds for a couple hours to give him a rest. They were going to restart them at a reduced rate until this morning when they plan to lower his feeding tube past his stomach into the upper most part of his intestine. When I spoke with his nurse last night around 1:00, she said he had started acting very agitated and uncomfortable again, so she gave him an extra dose of ativan and he was resting fine after that. I am really praying that the lowering of the tube will help him today because it is terrible to watch a child his size hurt and struggle.

Ned's personality doesn't help me feel any better either. I am learning that Ned is a very serious child. He gives me this furrowed brow look all day whenever anything isn't going well. He doesn't really cry much at all, he looks more perplexed and concerned over his current condition. Even when he's feeling good and I try to play little games with him, he gives me that same look of complete disinterest? I even noticed yesterday that when he smiled in his sleep, he immediately caught himself and replaced the smile with a disconcerted frown. I, of course, found that extremely funny.....but he, of course, didn't.

On a kind of positive note, at the moment the PICU is full. If any emergencies come in, Ned will be transferred to the NICU. That is promising because that means he is the least sick child in the pediactric ICU at the moment. I'm just in such a routine and comfort zone there, I hate to have to leave. The vacancies may change at any minute and that plan may go out the door (sadly to say), so we're just taking it as it comes at the moment. They didn't call me last night, so I assume he'll still be in his same room when I get there this morning?

Hopefully, a speech therapist will be by today to start working with Ned on learning to suck and swallow- that would be a huge progressive step for him. The surgeons are wanting to postpone his final surgery until he is absorbing more of the food he is taking in. They made adjustments to the breast milk yesterday and believe this will help him. I don't think he output as much yesterday either so hopefully that problem may soon be corrected!

Our same issues still remain, breathing and eating. Please continue to pray that God will begin to allow Ned's body to function in the way in which it was designed. I have no fears that God can't or won't heal Ned's body, I know it will all be in His ordained timing. I believe that timing is for purpose and I'm just praying that I'll be able to seek and find His purpose in His plan. I don't want to leave this place in my life and feel like I missed any of what God had in store for me, but sometimes I get caught up in the medical here and I forget to look for God at work around me. Today I am praying for clarity, so I can discern God's call from life's distractions. I have to remember that I can't fix Ned, only God can, but He will use me for other good if I allow Him.

Much love and many blessings to you all!

Betsy, Travis, Jack & Ned

5 comments:

Anonymous said...

Betsy, Hope today will be a bit easier for you and Ned...I guess his disinterest and frowny faces were because maybe he wasn't feeling as well (maybe because of the breathing tube struggles?). I bet it won't be long until there are lots of smiles and giggles.

I will pray for God to give you the clarity you seek...I know I could use more of that too. Satan does use all kinds of tactics to keep us distracted from God's purpose. Just know we are praying for you, Travis, Jack and little Ned! Love, Sherry

Kim said...

Dear Betsy, I am so sorry that Baby Ned is having trouble breathing and eating, I am so glad that you are able to hold him and cuddle him in your arms, that is a blessing. His sad little faces were probably because he is tired of all of these tubes and wants to move around a little more. And it is like you said he doesn't like change, so once you get home and he is around everybody and gets on his little routine, I bet there will be more smiles than you can imagine, and not just from Ned either. I work at the Y on Friday, and the kids will ask me about Ned so we will pray for him and ask God for his healing. We love you, The Alexander's Donald, Kim, Emily and Brock

Jennifer Smith said...

Sweet little Ned... I will have to say from studying Anatomy that frowning works more muscles in the face than smiling so that's a good exercise for him! You all are still in my thoughts and prayers!

Jennifer Smith

Anonymous said...

Dear BEtsy and Travis, I get worried when you don't have a daily update, so I just wanted to make sure that all is well and improving every day. Just wanted you to know that we are thinking and praying for all of you each day. Sincerely, The Alexander's Kim Donald, Emily and Brock

Jason, Danielle, Landrie & Ava Wofford said...

Betsy & Travis ~
I just wanted you both to know that we are praying for you all every day. Please know that we are here for you guys and our hearts are full of God's grace for little baby Ned.
May God bless you all!
Love,
Danielle & Jason Wofford