Speed Bumps

I meant to post "Home Sweet Home" last night, and thought I had, but it didn't go through. Oh, well, it's there now.

Since that post was written, I received a phone call from Olivia's GI doctor, Dr. Min. He thought Olivia had been discharged on Wednesday, and he apologized that he didn't come to see Olivia. I told him not to worry because several other people from the GI team had come in, and they were very good to explain what we should expect from their perspective. I told him that Luz (mentioned in an earlier post regarding the NG Tube) had come to train us on our own pump, and we were confident enough to go carry out the plan at home.

Dr. Min did mention that he was concerned that her Potassium was low, and her Chloride levels were high, so he put in an order for a complete metabolic workup. I took Olivia in today to have that blood drawn at the base clinic here. Thankfully he can see the results in the computer system. I'm glad we don't have to drive up to Bethesda for that test. If he sees anything of concern after today's bloodwork, he'll call us to let us know, and may repeat the bloodwork after the weekend.

Speaking of driving up to Bethesda, Olivia has a follow-up with surgery on October 18th at 2 p.m. She will also have a follow-up with surgery at the 6 week post-op point. We still need to schedule appointments with Nutrition, GI, Orthopedics and Neurology. Hopefully some of them will fall on the same day so we don't have to drive up there so often. We need to see Ortho to discuss the scoliosis surgery and possible effect of the scoliosis on other internal organs. Neurology is for her seizure management (currently no change or concern on that front) and Botox injections, which are "routine", but it's been six months since we were last there. And finally, there will be another appointment with GI and Nutrition in December. All tolled I think that's eight appointment I know of. Orthopedics might send us for x-rays while we're there, and there may be additional appointments related to that visit. Eight appointments! Before Christmas. I'm tired just thinking about that. ;)

Also last night we noticed that Olivia's dressing needed to be changed. I followed the directions that I was given, verbally, but couldn't remove the gauze that they had placed in surgery. I really REALLY couldn't do it, and I thought I was going to hurt her, so I called Teresa. She is our close friend, respite provider, and nursing student -currently doing her clinicals. She and her husband, Bill, came right over-- at 11 p.m. Teresa came in, assessed the situation, began working, and she coudn't get it out either, even with saturation and gentle pulling. At the 10 minute point of saturating the gauze, we called the Pediatrics Ward at Bethesda. The nurse that answered the phone suggested that we saturate the gauze and pull gently and it will come off. Uh, that's what we'd been doing. Everything she told us to do, we were already doing it. (Well, Teresa was!) So I asked her to page the Resident, who happened to be one of the people "Momma Bear" had a run-in with so I knew she was going to remember me. Well by the time she called back, it did, in fact come out. I'm thankful Teresa was here to help. I think I was going to freak out if it didn't work, but Teresa was persistent, and caring.

During the saturation, and tugging (gently) the button had rotated 180 degrees. Dave and I were seriously panicked because the GI doctor, from Dr. Min's team, told us that it was NOT to be turned. So at 11:45 p.m. I called Dr. Safford on his cell phone. He was groggy when he answered the phone, so I knew I had woken him up. He said as long as it hadn't come out, it was okay. Crisis averted. I thought Teresa was going to have to do Chest Compressions for our heart attacks!! WHEW! I'm so glad she was here.

Things are going well for Olivia. She was so peaceful sleeping in her bed. Her night feeding went well and she rested well. She is back in bed for a nap. It is almost like a normal day here. Well, as "normal" as it gets in our house.

P.S. I've added this since originally posting, but I remembered that there is another doctor we're trying to get in to see. Dr. Coll is a Developmental Pediatrician at Bethesda. Dev. Peds. is an important resource to have because they keep a broad perspective of a patient's care, vs. the specialty care at each clinic. So bring the above total to 9! Lord, give me strength!!! :)