Edited to add- Jimmie is being admitted to Children's Mercy South. They will put him on oxygen and monitors and observe his eating. Pray for wisdom and that Jimmie's problem will be clearly revealed.
Well- I don't know how Justin is doing. I assume better, but the focus was on Jimmie when Rach and I talked a little bit ago. Jimmie had a bad day yesterday. He only took 10 ounces, struggled at every feed, had only 4 wet diapers and his pee started smelling more concentrated by evening. When I talked to her last she was waiting to see what Dr. S. wanted to do.
The only thing left to do really- is admit him at Children's Mercy. His Neo appointment with them is Sept. 3rd. I did spend about 45 minutes on the phone with Children's this morning trying to get him in sooner. The problem is Jimmie needs a new patient time slot which is much longer than the regular time slot. We could call every day, but people rarely cancel their first appointment they have (probably) waited forever for.
If Jimmie does better throughout the day and he stays out of danger from dehydration. We can keep limping along. However if he does not do better today dehydration will become a real concern. So pray! We'd really like him to stay out of the hospital- obviously.
The nurse I talked to from the Children's Mercy Neo clinic this morning was great. She spent a good 20 minutes speaking with me. She asked me 1/2 way through our conversation if I was a nurse. (-: I said, "If you think that- wait until you talk to my sister!" Justin seriously has offered to put both me and Rachael through nursing school.
The *real* nurse said it sounds like bad reflux that is not under control. And she suspects "esophagitis". That is an inflammation of the esophagus that can cause pain and swelling that makes it hard to swallow. After talking to her it sounded like they may recommend a higher dose of Prevacid, more oxygen... I'm not sure if they will/would put him on some sort of anti-inflammatory . . . Most of this is conjecture as she could not actually advise us to do anything without seeing him. The ONLY thing she actually advised was to call Dr. S. I laughed when she asked if Rach kept a feeding log and a puke log and a bowel movement log and a urine log etc... I laugh because the answer is- YES! Rachael meticulously logs everything! The other thing she said is that if this struggle goes on for too long she would be concerned that Jimmie could develop an aversion to eating.
Rachael and Justin have made a big decision to move from Odessa to Lee's Summit and live with Justin's parents (Rod and Kathy) for a while. They will move today. Rachael is grateful for a place to stay with family that is closer to help. Help in the form of family and friends and help - as in Dr. S and Children's Mercy. Though she is very grateful she is also devastated. Sad that things have progressed to the point that she and Justin do not feel they can take care of Jimmie in their own home by themselves anymore.
Pray for them today! Pray for wisdom about Jimmie's care. Pray that he'll eat enough to stay out of the hospital. Pray for Rachael's heart. She's weary . . .