LushMan was right, it was a very long day, but I am confused about this wit and flair he’s talking about.

Like he said, her weight was up considerably. That freaked me out, but Peggy didn’t seem too bothered by it although she did say she liked that we had our appointment with our pediatrician today.

The appointment went well. TheYoungest’s blood pressure was a little higher than what we’ve been getting at home, but Dr. C. didn’t notice any pitting edema. Her weight was up as well on the scale there- 28.5 lbs.

I spoke with Peggy a couple of times after the appointment. The first thing she told me was that “Dr. C. is a doll” and I wanted to say she’s preaching to the choir (and I’m not just saying that because she reads this.) Peggy said that things are status quo. Continue to do what we’ve been doing, have blood work Thursday and check blood pressure twice a day now. The weight could be because of her appetite on the steroids and not that she’s retaining fluid- especially with the output she’s been having.

I was later than usual getting TheOldest at NSMS. Because we only have 45 minutes between NSMS and OLW, I try to be as close to first as possible to give her that whole time to eat lunch and change into her uniform. It is a waste of time to go home between the two so she usually eats and changes in the car. But today I was running a bit late.

After dropping TheOldest off at OLW, I stopped at the store to pick up some cream for TheYoungest’s neck. She’s a little broken out where the central line and tape was and Dr. C. recommended putting a little something on it. Then it was time to head to the allergists.

That appointment was interesting. I didn’t know that the steroid she’s on could conflict with a skin test. To see if it did, first we had a test with just a control and a histamine. She did react to the histamine so they went ahead with the other testing. We tested cinnamon, grapes, eggs and blueberries. They came back negative! So, Dr. K. said she was ok with us doing a food trial at home aside from cinnamon. She’d like to wait and retest cinnamon a year from now just because of the reaction that TheYoungest had from it.

The bad news is that TheYoungest’s dairy allergy results (RAST) increased from 7.28 to 62.70. The number doesn’t really mean anything as far as a severity of reaction, but could indicate how long it could take for her to grow out of it (if she will.) With a number like that, it could be a long time. We go back in a year to recheck everything.

1/25: total output: 466
1/26: total output: 417
1/27: total output: 491 (+ one 327 diaper which was wet and dirty, the nurses always estimated those at the hospital, but I don’t feel comfortable doing that.)
1/28: total output: 496

Weight
1/25; 27.6
1/26; 28.4 (this could be because of our scale, I’m not concerned yet because of her output.)
1/27: 28.0
1/28: 29.0

First of all this is LushMan posting so sorry in advance for the lack of wit and flair that you all have come to expect from NotTrying’s writing.

Today is going to be a day of running around for NotTrying and TheYoungest and so NotTrying asked that I post a quick update as to what’s going on.

This morning TheYoungest’s weight was up to 29.0 lbs on our unscientific scale and NotTrying called Peggy to give the news. Now NotTrying is off to see “the other” Dr. C (our pediatrician) where TheYoungest will have her BP checked and a thorough once over to see if there is anything else that draws attention.

From there we will see if more labs are needed today, if a visit to the day hospital is needed, or if not, then its off to the allergist this afternoon and labs will be drawn tomorrow as planned.

TheYoungest did have some decent output this morning (180 something) so at least there is still positive activity on that front.

Thanks again for all your support, thoughts and prayers. It is so very comforting to know that we have all of you behind us and helping us along during this challenging time.

When Dr. C released us last Friday, he put TheYoungest on a very large cocktail of drugs. We also were having Option Care come for a home visit to change her PICC line dressing on this coming Friday. Then, on Monday, they will come back to draw labs in the morning to have results for her appointment with Dr. Ali in the afternoon.

Peggy, who you might remember from way back in December, is the nurse practitioner in Dr. Ali’s office. I’m back to talking with her daily about TheYoungest’s status. Dr. Ali obviously does things differently than Dr. C does. The first thing Peggy told me is that Dr. Ali wants labs drawn on Wednesday. That’s completely fine with me because I *need* to know what her little kidneys are doing and I *need* those numbers. The only issue is that we have an earlier appointment with our pediatrician and then a later one with TheYoungest’s allergist tomorrow. There wasn’t a good window to schedule the visit. So they are coming Thursday to take labs and do the dressing change.

The next thing that Dr. Ali changed was to take TheYoungest off of one of her three blood pressure medicines (Norvasc) and took her off a folic acid supplement.

I told Peggy about TheYoungest’s outbursts and she agreed that it sounded like she’s in pain and it could be reflux. They have ordered Prevacid for her. I hope it works, but I do have to say that she was better today than yesterday. We don’t have it right now because it is also a compound, but it should be ready tomorrow.

To answer J’s question, she is on Orapred 15mg oral 1 time a day.

I’ll update tomorrow after all of her appointments.

Since coming home, TheYoungest has been permanently attached to me during the day. She wants to be carried and doesn’t like it when I sit down too much. I can understand that, she’s been through a lot, more than any child should, but it sure makes things hard to get done around here.

There are times though that she doesn’t want me. She arches her back, screams at the top of her lungs, and is inconsolable. TheMiddleChild yesterday afternoon said “Make her stop!” with her hands over her ears and through tears I said I can’t. TheYoungest’s stomach is extremely hard at these times and she is gassy so we’re assuming they are gas pains. These incidences seem to be shortly after she has her medicine except from her morning meds. In the afternoon, evening and before we go to bed, she gets the same medicine that she has during the morning. LushMan and I wonder if some of them have soy in them because although soy is not one of her medically confirmed (RAST and skin test) allergies, we know there is some sort of discomfort going on with her when she has soy. That wouldn’t explain why she does not act like that after her morning medicine though. And if it is the medicine, why didn’t this happen at the hospital? These meds came from the outpatient pharmacy but I assume they would be the same as the inpatient pharmacy, right?

Then I wonder if it just the steroids making her more cranky. Maybe she’s hungry, over-tired or something. At night, anywhere between midnight and 4am, we have dealt with the same scenario. In this case though, she wants LushMan and also does not want him to sit down. It makes for a very long night.

I do plan on asking her pediatrician about it tomorrow.

1/22; total output: 422
1/23; total output: 309
1/24: total output at HOME: 314
1/25: total output: 466
1/26: total output: 417
1/27: running output: 183 (+ one 327 diaper which was wet and dirty, the nurses always estimated those at the hospital, but I don’t feel comfortable doing that.)

Weight
1/22; 5am: 12.78
1/23; 5am: 12.70
1/24; Home in lbs 28.0
1/25; 27.6
1/26; 28.4 (this could be because of our scale, I’m not concerned yet because of her output.)
1/27: 28.0

This weekend was so nice. TheYoungest was obviously so thrilled to be home as she couldn’t stop smiling and laughing- big belly laughs. She also started eating again and I think she ate more on Sunday than the entire last week and a half we were in the hospital.

It will be good to take TheOldest and TheMiddleChild to NSMS and then TheOldest to Wayside today. My mom will be here so TheYoungest won’t have to be interrupted if she’s sleeping. I think TheOldest and TheMiddleChild are excited to have me back doing the Mom-things for them.

1/22; total output: 422
1/23; total output: 309
1/24: total output at HOME: 314
1/25: total output: 466
1/26: running output: 238 at 7am!

Weight
1/22; 5am: 12.78
1/23; 5am: 12.70
1/24; Home in lbs 28.0
1/25; 27.6
1/26; 28.4 (this could be because of our scale, I’m not concerned yet because of her output.)

We left the hospital as soon as possible yesterday. I was so focused on getting out quickly that I forgot all about the beta2 number. After settling in at home, I realized I didn’t get it, so I called the nurse. It was 10.8. Last week it was 15.8 so the fact it went down is good and remember Dr. C guessed it to be around 10 at that point.

On the agenda for this week is a couple home visits from Walgreen’s Option Care. Wednesday TheYoungest has an appointment with her pediatrician, my favorite-non-nephrologist Dr. C. We also have an allergist appointment scheduled for Wednesday afternoon. That was scheduled way before any of these kidney issues started.

I was taught how to take TheYoungest’s blood pressure and given the necessary items. I have take it once a day.

On the 2nd, we start seeing Dr. Ali in her office. I haven’t seen her since the evening she told me about TheYoungest’s 2nd biopsy results and how things did not look good at all. It will be interesting to hear her thoughts on  TheYoungest’s potential.

LushMan and I decided to continue to weigh TheYoungest’s diapers here at home even though no one mentioned it. It will just make me feel better knowing what she is actually producing. We are weighing her each morning as well like the last time we were home.

Sleeping in our own beds last night without interruptions was wonderful. Having a great dinner together as a family last night (thanks Margo!) was even more wonderful.

1/22; total output: 422
1/23; total output: 309
1/24: running output at HOME: 182

Weight
1/22; 5am: 12.78
1/23; 5am: 12.70
1/24; Home in lbs 28.0

Dr C. (have I mentioned that he’s my favorite?) came in before rounds and said “The answer is yes.” I said “what?” and he said, “yes, we’re still pulling the CVC and yes, you’re going home today.” During rounds he explained that as long as the creatinine didn’t go up, he was happy. He doesn’t even care what the beta2 number is anymore. This could very well be how good her kidney function is (25% of normal) forever or it could take months, if not years, to improve.

After rounds they came in and took out the CVC. She did well. Cried a lot, but is obviously much happier with it out. Then she and I went downstairs to the outpatient pharmacy to fill her cocktail of drugs. She was not happy coming back into our room.

Now we wait for those drugs to be made (some are compounds) and for discharge papers. I’m not as emotional leaving this time around (I think) like I was on Christmas Eve, but who knows, I may cry all the way home again once I get in the car.

I’ll still be updating here when there is news, but we won’t have daily labs anymore. I’ll have to get used to that, but as long as we’re home, I think I can handle it.

The creatinine is still the same again.
I don’t know what that means again.
We’re waiting for the beta2 again.

I feel like I’m in the Groundhog Day movie. Though if the lab loses the beta2 again, you might be hearing about me on the news: “Crazy lady breaks down secure lab door at Children’s to give lab tech a piece of her mind.” It should be back by noon.

1/15; total output: 264cc
1/16; dialysis; 12:30pm; 3 hours; 800ml
1/16; total output: 140cc (low from dialysis)
1/17; total output: 256
1/18; total output: 162
1/19; total output: 350
1/20; total output: 278
1/21; total output: 322
1/22; total output: 422
1/23; running output: 160

Weight:
1/15; 4am; 13.175
1/16; 4:30; 13.020
1/16; 3:30pm post dialysis weight: 12.6
1/17; 7am: 12.72
1/18; 3am: 12.435
1/19; 4am: 12.495
1/20; 4am: 12.510
1/21; 6am: 12.64
1/22; 5am: 12.78
1/23; 5am: 12.70

Potassium, plasma: (3.5-5.3 normal range)
Date, Time; value
1/15; 04:30; 3.1
1/16; 05:35; 2.4
1/16; dialysis; 12:30pm; 3 hours; 800ml
1/17; 06:45; 3.3
1/18; 02:45; 3.0
1/19; 04:00; 2.7
1/20; 05:41; 2.7
1/21: 06:10; 3.3
1/22: 05:00; 4.2
1/23: 05:45; 4.4

Albumin, plasma: (2.9-4.5)
1/15; 04:30; 1.6
1/16; 05:35; 1.6
1/16; dialysis; 12:30pm; 3 hours; 800ml
1/17; 06:45; 1.7
1/18; 02:45; 1.7
1/19; 04:00; 1.8
1/20; 05:41; 1.7
1/21: 06:10; 1.8
1/22: 05:00; 1.8
1/23: 05:45; 1.6

BUN-blood urea nitrogen (5-15)
1/15; 04:30; 50
1/16; 05:35; 56
1/16; dialysis; 12:30pm; 3 hours; 800ml
1/17; 06:45; 30 (!!!!!!!!!!!!!!!!!!!)
1/18; 02:45; 36
1/19; 04:00; 37
1/20; 05:41; 37
1/21: 06:10; 33
1/22: 05:00; 33
1/23: 05:45; 30

Creatinine, plasma (0.3-0.6)
1/15; 04:30; 2.3
1/16; 05:35; 2.4
1/16; dialysis; 12:30pm; 3 hours; 800ml
1/17; 06:45; 1.7 (more !!!!!!!!!!!!!!!!!!!!!!!!)
1/18; 02:45; 1.8
1/19; 04:00; 1.7
1/20; 05:41; 1.5
1/21: 06:10; 1.3
1/22: 05:00; 1.3
1/23: 05:45; 1.3

Hemoglobin (10.5-13.5)
1/15; 04:30; 8.7
1/16; 05:35; 9.0
transfusion 1 unit
1/17; 06:45; 13.8
1/18; 02:45; 12.9
1/19; 04:00; 13.6
1/20; 05:41; 14.5
1/21: 06:10; 14.2
1/22: 05:00; 14.0
1/23: 05:45; 13.1

Calcium-total; (8.8-10.8)
1/15; 04:30; 8.6
1/16; 05:35; 8.4
1/16; dialysis; 12:30pm; 3 hours; 800ml
1/17; 06:45; 8.6
1/18; 02:45; 8.6
1/19; 04:00; 9.1
1/20; 05:41; 8.6
1/21: 06:10; 8.4
1/22: 05:00; 8.5
1/23: 05:45; 8.4

Ionized calcium; (1.08-1.34)
1/15; 04:30; 1.19
1/16; 05:35; 1.15
1/16; dialysis; 12:30pm; 3 hours; 800ml
1/17; 06:45; not listed
1/18; 02:45; 1.20
1/19; 04:00; 1.25
1/20; 05:41; 1.20
1/21: 06:10; 1.24
1/22: 05:00; 1.21
1/23: 05:45; 1.24

The lab can’t find the beta2 order (even though I’m 100% sure the night nurse drew it) so now it is going to be run with tomorrow’s labs instead. That “works out” because Dr. C wants to get another creatinine level before pulling out the CVC. They have also changed their mind about how the CVC is coming out- no sedation because it only takes a few minutes. The worst part for kids is keeping still for the 10 minutes after and they will have enough help to make sure that happens.

He did think it was a little odd that her numbers didn’t change from yesterday. He said it was possible that this is the best she will get kidney function wise. We’ll know more tomorrow with the labs.