One step forward: we moved to full feeds as of Monday at 4pm and Ella seems to be tolerating the volume fine. We are giving 250ccs of Peptamen Jr along with 25ccs of water. She had the 4pm, 8pm and midnight feed on that schedule Monday and Wednesday was the first full day that we mimicked a true home routine. We’re excited that she is not having a problem accepting the larger bolus feeds. And so far, it appears that she is gastric emptying without any Reglan. Again, time will tell but we will be elated if we can discontinue that medicine.
Ella has been getting lots and lots of beauty sleep. I think the Methadone and Ativan are keeping her sleepy. Plus with full feeds in her belly, it tends to make her sleepy. I think the extra sleep is helping her heal and making her awake times more fun. She is crazy with exploring the hospital crib. She’s even sporting some new bruises on her legs in the exact spot that a 2 year old should have them!
With Ella’s new food, it was Wednesday, two full days later and still no poop. The GI doc was not real concerned, so we were not concerned. But we did agree: if she had not pooped by her 4pm feed, we would go ahead and give a ½ dose of Miralax to help things along. About 45 minutes after the 4pm feed and the Miralax, Ella pooped and it was not watery. That was nice to see. The docs confirmed that the Miralax had not been given a chance to take effect, so it was likely just Ella pooping on her own.
As of Wednesday, it seemed Ella was not saturating quite as well. When I asked about ins/outs, she was now 2 liters positive for the last few days. So the doctors decided to give her Bumex twice per day. We’re so bummed that we are back using such a strong loop diuretic, but all of her indicators show that she is too wet, including a weight from 14.2 to 14.9 kilos.
On Thursday morning during rounds, the doc was hopeful that we would maybe be discharged tomorrow. Since Ella responded favorably to the Bumex – he just wanted to see her labs to determine if her potassium was stable. Along with regular labs, we were also supposed to get a platelet blood study (recommended by the Hematology Department) to analyze how well her platelets are behaving with her current regiment of Plavix and Aspirin. This is not mandatory but they have a special blood lab at CHOC that can do this type of study, so we figured it would be interesting to take back to Denver.
When the nurse went to get the labs, she got enough to test the potassium and other electrolytes. It came back at 2.5 which is low. This was not a good sign, so they went ahead and doubled her g-tube dose throughout the remainder of the day, plus gave one extra dose right away to help counteract the imbalance. But when the nurse realized she did not draw enough blood for the platelet study, she came back to draw more blood and she could not get Ella’s PICC line to respond. This is the second time it has not responded since Sunday. So tomorrow morning, they are going to TPA the line before drawing another set of labs to check Ella’s potassium levels plus run the platelet study.
The withdrawal symptoms are still there – mostly she just acts like she has had a few beers. We get smiles and lots of normal Ella behaviors too. We’ve also been giving Atarax about once per day to combat the itchy symptoms. Otherwise, we thought the weaning plan was good because it is a tolerable amount of agitation and discomfort whereas early on, the weaning schedule was more aggressive and Ella was not responding well.
Two steps back: As of rounds Thursday morning, Ella was still asleep and seemed to be doing well. Once change for today: the Methadone was weaned from 1.5ml three times per day to 1.4ml three times per day. This is such a slight amount, yet it seemed like it was having an impact. When Ella woke up at 10am: retching and waves of nausea. Then, later she spiked a slight fever. You could tell that she did not feel well. It cumulated with diarrhea this afternoon – 4 rounds of it. When we spoke to the pain management team in the afternoon, they confirmed that her symptoms could be tied to withdrawal.
The more frustrating part: when the pain management team began asking questions, it was discovered that the nursing staff was not being consistent with the way that they administer the meds plus the times that the meds were being administered. Both are really critical with a narcotic weaning program, especially since Ella is so sensitive and not handling withdrawal the best. Because of the inaccuracies, they decided to revert to implementing the weaning plan from 6 days ago. In other words, they wanted us to start our 2 month weaning plan all over. All of this because of the lack of continuity in practice from the nursing staff. Even the time in the computer for administering the medicine had changed from the time that the docs wrote for originally. The staff did not have a good answer for why things were not handled correctly. So, they figured that if they go back 6 days and give Ella more Methadone and Ativan and the symptoms go away tomorrow, it likely confirms that it was withdrawal and it may mean that she is not ready for weaning and we need to go slower.
Tonight, we needed to increase her oxygen to 750ccs (a slight increase) to keep her saturating comfortably, especially while she was awake. We still think that even with using the Bumex, she might have more fluid she’s holding onto.
Things are not looking favorable for going home on Friday, as originally discussed. At this point, they now need to wait and make sure that the diarrhea is not food related, make sure the withdrawal plan is followed closely by nursing staff and that Ella is ready for weaning, that her potassium supplement is enough to keep her electrolytes in balance and that her pulmonary status doesn’t go south with all the extra fluid on board. As always, it’s really up to Ella.
It has been 4 weeks today and we are so ready to leave the hospital. Please continue to pray for Ella, wisdom for the doctors, and endurance for me & Josh.
Psalm 119:144 (NLT)
Your laws are always right;
help me to understand them so I may live.
