Monday morning the girls woke up and Lydia's overnight diaper did not have as much in it as normal. The girls get over half of their fluid and calories overnight so they pee a lot during that time. Lydia has had lite overnight diaper before but then she typically pees a lot as soon as she gets up so I didn't think too much of it. We then went to PT where the girls both worked hard. After PT we headed to RMH to play with friends since some of our friends were there to stay for some appointments. During that time I checked Lydia's diaper a couple of times but it was dry. We got home around 6pm and there was tiny bit of pee in the diaper when Brent changed it which worried me since this was her first diaper change since she got up! She did not pee again before we put her night time diaper on her at 10pm.
Tuesday morning she woke up and there was some pee in her diapr but not close to the normal overnight amount and less then she normally pees during a 3hr period during they day. I called our ped office and they said if she does not have a fever then they could not help us and to go to the ER. I said I felt like that was an over reaction as step one because she was otherwise fine. She was tolerating her j feeds so we knew fluid was going in. We decided to see how the next few hours went (this was with the ped office blessing) Around 11:30 she pooped but the diaper was dry otherwise. At 3:30 I took the diaper off and it barely had any pee in it. I wieghed it and it barely weighed more then a dry diaper. Brent and I talked and decided the Children's walk-in was our best bet (the walk-in that is close to our house does not like to see my kids so we have to drive to Milwaukee for walk-in care) They open at 5pm so I loaded the kids up and got there about 5:15. thankfully we got there before most other people and were in a room rather quickly. The dr came in and we talked and decided to cath her. The cath came back that her pee was a little under diluted but otherwise fine. The main things we were looking for was a UTI and labial effusion but both of those were ruled out. The dr said if she spiked a fever or her overall health went downhill to bring her to the ER otherwise she wanted me to contact GI, our dietitian and special needs to check in and see if they had any ideas. Once we got home (around 8pm) I messaged each of those people so they would have the messages as soon as they got to work this morning.
We got up this morning and once again her diaper had a lot less then normal in it. I decided to go to MOPs because she is in a good mood and I knew no one would call me back right away and I was part of the group responsible to help bring breakfast today. Around 11 I got a call from special needs. They asked how she was doing (she had not peed since waking up at 7:30) and they said that they wanted her to be seen in the ER to run tests to check her kidneys. I loaded the girls up and we headed to the ER at Children's. Checking in took a while (the nurse wanted to go over her entire medical history while Lydia screamed) but once we were checked in they took us right to a room. The nurse came in and then a EMT instructor with a student. They wanted the student to get practice asking questions and working with kids which was fine. The PA came in and asked some questions and then the attending came in. First they ordered a bladder scan to see if her bladder was full of urine. For her size it should be able to hold 90, hers only had 29 in it. Then they came in and drew blood and took urine out. When they cathed her they were barely able to get enough out to run the test they needed to. A while later the PA came in and said that her urine was still a bit over diluted however everything came back fine including her kidney tests so they were not sure what the problem is but they didn't think it was an urgent problem and said they would be discharging us and to come back if she did not pee in 12hr or starts a fever. So we still have no idea why she is not making pee. She is getting plenty of fluids in a day. Everyone is stumped. After the ER we stopped at RMH so I could use the bathroom (she might not have had to pee in hours but at that point I did). We also visited with a couple of friends while there and Jilli got to do art therapy which was good for her after spending most of the day in the ER with her sister. While at RMH Lydia was really tired and not really herself. Tonight when we got home the girls got baths and after her bath she looks thinner (like to the point Brent was giving them their bath and I had gone to get something and he pulled her out of the bath and called me up to come look at her). Right now she is in a good mood. Brent is cuddling with her and a little bit ago she was giggling. This is all so weird!
I am hoping the pee starts flowing! While we were in the ER today I got a call from RMH. Someone donated club seats for the Brewers game tomorrow and they were offering them to us for us to go with one of the other families that we have become close friends with at RMH. Jilli is all excited so I am hoping Lydia is well enough to be able to go. Tonight I have been working on getting everything ready for that. Brent just started a new job a week ago so he will not be joining us but I think he is ok with that, he is not a sports fan.
So right now we wait and see. They said if it continues to call special needs and we will come up with a plan. At this moment I have no idea what the next step in the plan might be. I have no idea what would cause a child who is getting a lot of fluid (I talked with her dietitian today and she is well withing the fluid guidelines for her weight) to barely pee in 3 days.
Tonight her stomach drainage also didn't have that weird smell to it, but instead it smelled like fish. Who knows if that whole situation is related or not to what is going on now.
Also this week I had the privilege to contribute the the April edition of Complex Child magazine. The first piece I wrote and was adapted from a blog post. I tried to make the article as center as I could but it feels like right now anytime you promote children like mine having health insurance that you come off to the left (did you see the New York Times article today about the Freedom Caucus's talks about making it so insurance had to cover kids like mine but could charge whatever they wanted thus pricing us out of being able to afford insurance...)
HERE is the link to the article I wrote
Also this in this month is an article about the children of medicaid. I have seen so many hurtful things written about how everyone who uses Medicaid is using the system and scamming money and while data and facts don't prove that opinion it is still too widely held and actions based on that opinion could hurt kids like mine. That is where the idea for the article came, what if people see the faces and heard the real stories. I brought the idea to the editor and she ran with it and I am really excited for what came. Several kids I know are featured in it.
HERE is the link to the kids of Medicaid article
I would be really honored if you would consider sharing one or both of these articles on social media with people you know because we need to start having some real conversations based around facts and compassion in this country. I would assume that if you follow this blog that you have some level of compassion for kids and I urge you to join the conversation about standing up for what is right. I know it is hard. I HATE talking about politics, but sticking my head in the sand about this all could really hurt my kids so I continue to speak but we need more to join the conversation.
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