Posted (Tina) in All Posts on May-11-2010

Wow, it has been a crazy couple of days.

Ella’s labs looked satisfactory on Sunday morning, with her potassium at 3.9 (ideally between 4.0 and 4.5). Armed with that knowledge, we fought to get discharged. The prior couple of days had been so frustrating with the nursing staff. Things like waiting an hour for a dose of Tylenol, feeding Ella 1.5 hours late, etc. We would try to give input based on knowing Ella and we had to fight for everything – they were not giving us any credit for knowing her. At that point, we knew we could manage her better outside the hospital and did not need to stay any longer. We even promised to come back for labs to be drawn outpatient to check her electrolytes. The bottom line: we were just done with the hospital.

It was Mother’s Day, so what a nice gift. We left the hospital around 11:50am and then I had to hurry and get ready back in the RV because my aunt treated me to a girls afternoon complete with a massage. Then later, a dinner that included prime rib. Yum! But normally this could not happen with our current situation in the RV (one person can’t take care of Ella and the dog, a sick dog nonetheless). So, my uncle offered to babysit Lola. What a great Mother’s Day gift. It gave me about 4-5 hours of disconnecting with the realities of life.

Fortunately while I was at the Mother’s Day festivities, Ella seemed to be stable while Josh was overseeing her and getting used to her new schedule. She has so many new medicines, new food, etc. She seemed still a little buzzed from the meds, but definitely acting more like herself and exploring her space in the RV.

But by the time I came home and as the evening progressed, Ella did not seem to be doing well. When we put her to sleep and put the pulse oximeter on, she was only saturating in the mid 80s. Not good. We turned up the oxygen to 1 liter. Still not much better. We turned up the oxygen to 2 liters. This put her in the mid-90s. What the heck? We checked all the lines, the tank, her cannulas, changed the pulse oximeter, etc. It all pointed to the fact that Ella probably was fluid overloaded. Even though it was late, we gave her a dose of Bumex and planned to follow it with a dose of potassium in the early morning.

Throughout the night, she was restless. With her withdrawal symptoms, she is not sleeping well. Josh and I were both up several times to console her and changed diapers twice. This was good – the Bumex was working. I could tell she was better after the first diaper and we turned down the oxygen to 1 liter. We left her there the remainder of the night. The good news at this point: Lola seemed to be a bit better because she was not asking to go to the bathroom all night.

From the first feed at 8am on Monday morning, Ella became fussy. She was retching a lot throughout the entire day, especially the morning into the early afternoon. It’s not even related to feeding her. You can vent and try and draw back. Sometimes you get air, but very little food. And it doesn’t stop the retching. This is what we have seen though in the hospital these past couple of weeks: she just has nausea and it is likely due to withdrawal. Today the Ativan was weaned slightly, likely part of the cause. Also, she did not poop yesterday when we brought her home from the hospital. Today, we decided to wait before giving Miralax. We did not want any diarrhea!

In the early afternoon, Ella seemed like she wanted to go to the bathroom. Then, she broke down and cried. It smelled like there was poop. Sure enough, Ella experienced her first constipation. Wow, one extreme to the other. There was a brick of poop in her diaper. Larger than a golf ball, smaller than a racquetball. I still can’t believe that came out of her! This was the cue to give a dose of Miralax. We’re going to try 1/2 capful each day of Miralax going forward and see if that helps her out. It’s always a trial and error, but we’ll figure out just the right amount in the coming days.

In the meantime, Josh and I were both fervently working to get Ella everything she needs. I was having to make calls to ensure that food was being delivered to us. We only have enough until Tuesday morning. That took several calls. We needed new prescriptions. We called a few places, but most needed too much time to turn around. With hesitation since we were not happy with CHOC, we contacted the outpatient pharmacy at CHOC, assuming that they have everything we need. Without going into all the details, Josh went back and forth to the pharmacy four times. We were even charged for things in the end that we should not have been charged for. Then, our pharmaceutical insurance was giving grief over Ella’s sildenafil prescription. They wanted us to pay $2,491 for a 30-day supply! We still have to iron that out tomorrow morning plus the pharmacy still owes us more of some of the meds. All in all, that was a nightmare that required elevating the situation to the Director of the Pharmacy. Yikes!

I did call and speak to Ella’s pulmonologist in Denver to give him and update and asked for some input on giving Ella more diuretics, enough potassium and checking labs later in the week. He was very helpful. After talking, we decided to give an increase in Ella’s aldactazide diuretic (6ml, twice per day) and one Bumex each day, followed with one dose of potassium supplement. If we think she still needs to be dried out, we can give another Bumex and potassium supplement. Whatever we feel like works, follow the plan for at least 2 days and then go and get labs checked. It’s so nice to have someone helpful yet someone that also trusts us to manage and care for Ella. He knows that we are Ellaologists!

Then, I had to call the hospital back and page the resident that worked with discharging us. I had to ask for a standing order for labs, so we can check as we need. There was some challenge because they want us to follow-up with a pediatrician. I explained that we are following up with one, but just not here in CA. We want to work with her primary caregivers from CO but get labs here locally. Finally I was able to convince them to fax the labs to our pediatrician and write the standing order. Yikes…once again, not real impressed with the standard of care from the regular floor at CHOC.

Tonight, things got a bit better. Ella’s numbers looked so much better than last night. She is on her baseline of 1/2 liter of oxygen and saturating 98 right now. Way different. Also after two doses of Kaopectate and rice with boiled chicken, Lola had her first solid poop in three days. So tonight, both girls are doing better.

Work, what’s that? Please pray that Josh and I can continue to fight the battles we need to get Ella her medicine and food in the next 24 hours. And somehow, that we will find the time to bill some hours for work. Also, that Ella will remain stable, be dried out enough, handle the weaning of the withdrawal meds and have good stools! Finally, that we have figured out the right Ella cocktail for now which will mean good labs in a couple of days and that we can enjoy our last week or so with family and friends outside the hospital.

Thanks again for all the support and prayers. It’s only been about 36 hours since we left the hospital and I’m still processing that we just spent 1+ months at CHOC on our CA trip in our motorhome…and right now, we are spending the last few nights sleeping in the motorhome in a church parking lot. It’s been a crazy journey and we’re so thankful for all the support from all of you out there.

1 Corinthians 16:13-14 (NLT)
Be on guard. Stand firm in the faith. Be courageous. Be strong. 14 And do everything with love.