A Better Day!

Dustin during his PT assessment.





















Dustin playing with Champ.

This morning, daddy and mommy enjoyed the first Dustin smile that we have had since May 7!!!

I was talking to Dustin very close to his face and he smiled big enough for me to see his teeth. Tim came over and joined in our morning fun!

The smile that we received this morning was incredibly encouraging! We have missed our little man and we believe that God gave us this gift to demonstrate that our normal little guy will soon be better and back home, where he belongs!

What’s new since my last post:

• Dustin has been on a withdrawal protocol since Sunday morning. Dustin continued to display discomfort and agitation between the injections of narcotics. The physicians thus ordered morphine as a PRN (low doses administered on an as needed basis) to treat Dustin’s withdrawal symptoms.

• Dustin continues to have fevers. It is unclear if the continued fevers are related to Dustin’s withdrawal or if the fever is evidence that Dustin continues to fight an infection.

• Dustin continues to experience discomfort. This could be related to withdrawal symptoms or the ongoing fever.

• Dustin met his goal of taking one and one-half ounces of breast milk through his feeding tube each hour. Since I’ve not been able to get him to take fluids orally, the feeds were turned off and we will see if little man gets hungry and will then take the fluids orally. As of Tuesday afternoon, Dustin is now drinking his milk through the bottle!! Perhaps we’ll try some cereal this evening.

• On Monday afternoon, Tim and I attempted to feed Dustin some pedialyte. Dustin was not at all interested. Our favorite ICU nurse asked us if we’d ever tried the Pedialyte. He said it is very distasteful. Well, we’d never partaken in a drink of Pedialyte. The nurse proceeded to pour a portion into very small “shot” glasses. Mom, Tim, the nurse and I all had a round. We toasted to Dustin and threw back the Pedialyte. SO NASTY!!!!

• Yesterday, little man rolled to his belly for the first time since May 10. One side effect of morphine is itchiness. Little man experiences this side effect terribly and attempts to scratch his nose and find comfort by rolling around.

• The MRI came back normal. I asked whether the physicians were able to see evidence of the higher intelligence possessed by Dustin. Apparently, they were and, as it turns out (according to the physicians), the intelligence is attributed to mother (me)! (HA!!)

• There has been much discussion about moving Dustin to the general pediatric floor. Since Tim and I have been very expressive about the care that Dustin received on the floor and the concern that we continue to have regarding his febrile state, they have agreed to “wean” us from the PCCU. Essentially, the PCCU nurses are now providing evaluations at the same frequency as would be provided on the floor. Since the PCCU has physician coverage 24/7, we will continue to have access to a physician if there are any questions or concerns relating to Dustin’s care. This provides us with comfort, since there remains some question as to the source of the continued fevers (withdrawal symptom or infection). We are beginning to discuss where Dustin will be moved (which hospital floor) and how his care will be managed. Tim and I would like for Dustin’s medical care to be handled by the medicine doctors, rather than the surgeons. We would still expect the surgeons to round on him daily to exam the surgical site, his respiratory responses and to respond to any questions from nurses/medicine physicians and us.

• Dustin had his first PT/OT session today. Dustin seems to be favoring his right side and we will work with him.
  

And, so, overall we continue to see much progress. The progress is slow. However, we’ll take progress over regression any day. We are hopeful that the PCCU team will soon make a determination regarding the source of Dustin’s fever and that the correct combination of medications will be administered to treat Dustin’s withdrawal symptoms.

We are so very thankful for all of the thoughts and prayers that have been lifted up on behalf of Dustin. We are seeing the evidence of your prayers!! I am saving all of the emails and comments that we are receiving so that when we tell Dustin this story we can show him how much he is loved and the awesome power of prayer!

Dustin resting in his bed in the PCCU.