The PICU staff was great to let us stay last weekend to see if we could get Ella ready enough to just leave directly from the PICU, but she wasn’t ready.
By Sunday morning, she was still having diarrhea and her potassium was not stabilized. During rounds, they looked at us and expressed that it was time to move. We really needed a GI expert at this stage since Ella was dealing with chronic feeding issues.

So, we spent Sunday getting ready to move – that sounds silly – but when you live in a room for 3+ weeks, you have to get ready to move! We had one of our favorite nurses for our last day in the PICU and then Ella’s uncle and a couple of cousins came by to bring lunch and give their well wishes.

Knowing that the transfer to the floor was pretty certain, we’d been expressing our concerns to the PICU staff and the nursing staff especially about going to the floor for infectious reasons. We try so hard to keep Ella from getting sick that we did not want to move to the floor, one step closer to leaving CHOC, and have her catch something. Most of the rooms on the floor are shared. Between the other patient plus any visitors they might have come to the room, it is a much less controlled environment to ensure Ella’s health stays intact. Along with health concerns, the chances of sleep are so much less with 2+ patients being attended to in a room. The rooms come with a chair to sleep in. It reminds me of when we were placed on the floor in Gainesville at Shands, only a couple of days after Ella left the NICU. Basically, a nightmare! Plus, there is no internet so it makes it hard to do blog updates.

Fortunately, our nurse asked for a private room for us earlier in the day and we were assigned a shared room. Before we were getting ready to leave the PICU, she called down again to ask if there was any way to get a private room. It worked – we got a small, private room. That was a major blessing.

We knew that going from the PICU to the floor was going to be an adjustment. We’ve done this several times. But we also have more than one hospital to compare. The first shift upon transfer, I felt like I was teaching the nurse how to do things. That is always an awkward feeling as a parent and not something that instills confidence. The hospital offers a chair to sleep in or a cot. I tried to get a cot – they were all taken. So the chair was my bed the first night. There was a bout of diarrhea along with an unsuccessful attempt for a blood draw, both which required assistance from the nurse. Plus, the construction of the new hospital is right outside the window starting at about 6:30am. Needless to say, I did not really sleep at all.

My lovely mother-in-law brought me a blow-up mattress yesterday so I could get some rest last night and it worked like a charm. Wow, sleep is a beautiful thing to get when you are running so low.

Yesterday, I wished I had more sleep to prepare me for the day. Nurses come by once every 4 hours to check. They really only came in the room because they needed to bring food and meds to Ella. I expressed concern at 6am to the night nurse about Ella’s PICC line not drawing for her labs. I brought it up each time to the nurse on the day shift – I felt like she was blowing me off. So when the charge nurse stopped by to check and see how everything was going, I vented my displeasure at the nursing staff and the docs on this floor.

She took it upon herself to help me solve some of my concerns, but to give you an example, it was 8pm before they resolved Ella’s PICC line challenge. It wasn’t drawing blood, so you order TPA, let it sit for 30 minutes to an hour, then it will break up the clots so you can get your labs. They had 2 other nurses come and try to draw the blood before they would order the TPA. It took from 6am – 8pm to get that accomplished with lots of nagging. I think the charge nurse recognized that she was the fourth person I had told and it was not right that I have to babysit that much for something that is relatively straight-forward. So, she also sent in the manager of the floor as well as the director of the floor to talk with me.

Along with the nursing staff, I did not care for the docs on rounds. I expressed concerns to them and did not see them the remainder of the day. Communication was not great in the PICU because the staff changed daily. It is not great down here because no one comes to talk to you. I expected someone, even a resident to re-visit once during the day to follow-up with the discussion from rounds and let me know the plan for the day.

Another example, a lady just walked in with a machine yesterday and said she needed a follow-up echo. The echo is no big deal, but couldn’t my nurse have told me that there was one ordered? Again, we have not had a great experience down here on the floor.

One welcomed doctor that came by yesterday: the GI doc. He was very nice and took in all the info on Ella. Then, he wanted to make some changes: change her food to Peptamin Jr. (it is partially broken down and has medium-chain triglycerides which have always helped Ella in the past). The current food she is on does not have the medium-chain triglycerides, so it just may not be optimal for her. Plus, he mentioned that anytime you have surgery and mess around with anything involving the guts, you almost have to start over. The things that may have worked before may not work any longer.

Along with changing food, he added back some vitamins with iron (similar to Polyvisol with Iron). We discontinued taking that when she turned 2 years old, but apparently it may help with food absorption. Also, he added Lactinex (Lactinex is a brand name for a probitoic supplement used to replace microorganisms in the intestines and colon, regularly found in unpasteurized milk products. It can be used to treat diarrhea resulting from infection or when an antibiotic regimen destroys the harmful bacteria).

It is Tuesday morning and since we have implemented the changes from the GI doctor, we have had no diarrhea. As a matter of fact, we have not had any poop. I take that as a positive sign that there is not something more major going on with her gut, like mal-absorption. Ella also slept great overnight. All of these are positive signs.
So what is going on today? I think all my advocating yesterday has turned into a better morning. I’m getting much better communication.

We’re going to try and remove the g-tube that was placed by surgery and put her g-button back in (surgery replaced her button with a long tube prior to surgery to vent the bile out moer effectively). With Ella becoming so much more active, a long tube hanging from her gut is getting in the way. The med port came open once and we fed the bed the other day. We just need it gone!

I’ve asked about accelerating the food since Ella seems to have tolerated her bolus of 160ccs so well. Switching to the Peptamin Jr seems to not made a bit of difference to her during feeds. And so far, it is even better because we do not have diarrhea. We’ll see what the GI doc orders for feeds the remainder of the day.

When they drew Ella’s labs last night, her potassium got stable at 4.1, which is right in the middle whereas just the other day in the PICU it was down to 2.6. Maybe without the diarrhea, it is leveling out. I discussed no more daily lab draws unless necessary. Down on the floor when they draw a lab, they take out 5ccs of blood as discard and then draw the labs they need. They do not put the discard blood back into Ella. In the PICU, they would put the 5ccs back into Ella to minimize her blood loss. After fighting that battle yesterday, the director on the floor was straight with me: the nurses on this floor are not trained to follow that protocol. So with Ella’s hematocrit (red blood cells that carry oxygen) being low, I’ve fought to limit the blood draws. The doctor this morning agreed with me and just stated that they would want one more before we leave the building. That works for me!

Ella seems to be stable on ½ liter of oxygen, her baseline at sea level. However, she has passed out 2-3 times since Sunday. That is way too frequent for me. In looking at her labs, her BUN is 4. On rounds, I asked for them to give me her ins/outs for the past few days to see if she is positive. Usually passing out too often can be Ella’s red flag for too much fluid retention. We’ll see how that turns out today too.

By the way we haven’t mentioned it recently, but Lola was feeling much better and has been able to return to “school” with her friends to play. Josh even found a local dog park to take her to over the weekend to run around with some other local dogs. Plus overall, she has been a great pooch, behaving and being obedient to commands. She’s been a great sport with this extended RV trip at only 10 months old. This has been a good, long extended intro to going on motorhome trips. I’m sure it will be old hat next time!


If Ella cooperates with the increases in food and we continue to have no diarrhea and her labs look good, I think we might be out of here by the end of the week.

UPDATE by Tina @ 12:15pm:
So they came in with a dose of IV Lasix. When I asked, she had been positive for the past three days by 1.2 liters. Within 30 minutes of giving the Lasix, she had a 200+ diaper. This explains the passing out moments the past few days. It also might mean that we are not out of the woods with having to give a loop diuretic to maintain her pulmonary status.

It’s been 24 hours since her last bout of diarrhea. We’re hoping to see some solid poop later or we will have to give a suppository!

Psalm 111:2 (NLT)
How amazing are the deeds of the Lord!
All who delight in him should ponder them.