Breaking all the Rules

With CDH babies, every one is different. Seriously, no two are alike. I look at the current situations for Par, Jonathan & Ella--they all go against the expected paths for the severity of each of their own cases. Jonathan's hernia is the least severe out of the three--but he is definitely the most critical at this point. Par's hernia was thought to be moderate and we found out it was severe after the surgery and now he seems to be breezing through the weaning process--and Ella, precious Ella--everyone says girls have an easier time with CDH because they are better fighters--Ella is definitely a fighter--and although her hernia was severe--her stay has been much longer than the average CDH baby. When it comes to a rule of thumb for CDH babies--there isn't one--which is why Dr. Kays is so amazing--he has to rewrite treatment for each child without knowing the outcome and do it confidently--there are no rules, except for the ones he makes as he goes along.

As you may have noticed from our last two posts--we were less than confident in the care of Par for the past two nights. Let me first say that we have no doubts in the competence of any of the nurses at Shands--we know they all are well trained with a lot of experience. But it was difficult to leave Par and feel that he wasn't going to receive the attention we think he needs. We knew he'd be awake (since he slept most of the day) and we knew that he would need some interaction, someone to calm him and someone to suction him throughout the night. Of course we can't say whether or not any of this happened--we weren't there. We can only go by our intuition which never had us feeling this way in the 2+ weeks we've been here until now--so that has got to mean something. Anyway, this morning we walked in to find that Par had not been weaned because his blood gas wasn't very good. We were disappointed, especially when we found out he hadn't been suctioned before the blood gas was taken. There aren't any definite rules with suctioning--there are actually two schools of thought--suctioning before a blood gas is taken (like 45 min before) will give a better blood gas; or suctioning before a blood gas is taken can stir stuff up and make the baby agitated resulting in a bad blood gas. Well, when Dr. Kays came in this morning he looked at Par and how good his sats were and stuff and looked at his chart and saw he hadn't been suctioned--he reprimanded the day nurse for the night nurses' mistake about not following the "rules" of suctioning--he was frustrated obviously--he went ahead and weaned Par down.



Rusty and I were glad that Dr. Kays could still tell that Par was doing well enough to be weaned. When Dr. Kays came in later, I was there and he stepped in and said with a bit of a laugh, "I weaned him earlier--I'm not even following my own written orders!" If there is one thing the nurses keep telling us about Dr. Kays--you never know what he is thinking and he changes the rules without telling anyone--apparently he even breaks his own!

Par was awake when Rusty and I visited this morning--he seemed happy. He didn't cry when I changed his diaper--he only fussed one time when he needed some suctioning--otherwise he was just a happy little baby.

Rusty left to do some work and mom brought me lunch. After lunch mom came back to sit with me for the rest of the afternoon. We walked in and immediately Par's nurse came to tell me that mom would need to leave because the rules of the NICU say that only the parents can be in there between 3 & 4pm and so mom would need to leave (it was 3pm). I was dumbfounded--we've almost been here 3 weeks and no one has ever told us anything about "visitation rules" other than the 7pm shift change rule where nobody can be there. I was so frustrated--mom left and I just sat down and started knitting getting more and more frustrated. Shortly thereafter, Tina and Josh walked by and asked what was going on--I immediately started crying--I don't know why it hit such an emotional nerve, but it did. Of course, we don't want to break any rules--it was just frustrating that today is the first day they decided to enforce them.

Saying goodnight to him this evening was easy and felt good--we left with a very good feeling about his nurse. She seems very attentive and Par looked extremely relaxed. We pray he will have a peaceful nights' sleep and have a good blood gas so he can be weaned a tad more. As you can see in the picture, at one point Par started "thinking" really hard about something and reached back to twirl his hair--is it possible that Rusty & I created a mini-Joe IV? (oh no!!!!!!!!!)



We continue to pray for Jonathan and Ella. Jonathan's kidneys started working a little better this morning--we ask that God will give full function back to his kidneys and stop the swelling of his liver so he may be recovered for his hernia repair. Ella was reintubated today--we pray for her comfort as she readjusts to her breathing tube. We also pray for continued strength of Tina & Josh--we ask that the Lord will renew their confidence in Dr. Kays and in God's perfect plan. We thank God for their example.

Thank you for your prayers for Par and his friends.
Much Love,
Rusty, Liz & Par