Yesterday morning we all slept in a little. The beds at rmh are very comfortable... and I am a person who is not a huge fan of hotel beds cause I never can get comfy enough but these beds are great. We got up and went to the kitchen and had breakfast (they have cereal and oatmeal available all of the time) and then we went down and did some art in the art room. We headed over to the hospital around 11 and grabbed lunch at the Subway in the skywalk. Jilli decided she needed her blanket and slippers with her to go over to the hospital.
We went up and checked in for Lydia's GI appointment. The dietitian said her weight gain looks amazing and has come back up really well now that she is getting food in the best way for her. Our advancement plan is to increase by 1ml and hour every other week with a target of 49ml/hr. Little miss has developed rolls :)
The doctor came in and first asked about how Jilli is doing since her ER trip. She asked what we were going to do about the daytime draining and we all agreed that it was best to continue as she needs it.
Focus then turned to Lydia (this was technically a Lydia only appointment). The doctor looked at the tube. She said it was a bit of a fight to get the tube... that my least favorite IR guy said no but she talked so someone else and reasoned with them why this was the best thing for Lydia and the other guy agreed to do it. I get policy but I also get doing the best thing for a child and my kids are really good at not fitting into policy. We talked about the clip that is on the tube and how it was too close to Lydia's skin and decided we needed to do something about that at the end of the appointment. I asked her about the med dose and she said she would look to see if Lydia is on the right dose. We also talked about ways to drain Lydia's g port and decided that for now a diaper was probably the best choice (her g port is the size of a med port so many of the other extensions and draining solutions wont work) She talked about how the goal is to get Lydia a button when she is around a year old. With the new clip on it, it is much easier to manage then Jillian's GJ PEG. During the appointment Jilli almost accidentally pulled out her GJ tube but thankfully I caught it before it came out although she said that her tube spot now hurts.
The doctor left and a little while later two nurses came in to look at the clip to see if they could loosen it but decided they needed to page someone else to come do it. They asked us if we wanted to wait or come back a different day and I said that since we were already there that it is best to just do it. The third nurse came and showed up how to adjust it (apparently it comes with a special tool but a finger nail works just as well) so we were able to get it loosened so it was not digging as much.
We then headed back to rmh to start packing. I got a message from a friend who's kiddo was in the hospital that things were not going how anyone wanted with his health so Brent took the girls to art therapy and I headed over to the hospital with chocolate. Medical mommas have to stick together and sometimes what is best for the soul is a hug, time to vent and a little chocolate. I headed back to rmh and we got things packed up and worked on cleaning the room up. By this point it was time for dinner and we decided it was smarter to eat there and then leave.
Friends that we met at rmh were there for dinner too so we hung out and talked and checked out. Jilli was having a little bit of a hard time breathing but started to do better. We then headed home.
We got to Mooreland Road and there were cop cars all over and since I had been living in the hospital bubble I had not idea that Trump was in town and they were closing off the interstate for him to head back to the airport. Brent was in his own car and was a little behind me so he got a little more stuck in the mess. Jilli started freaking out that someone had hurt her daddy and that was why there was all the lights. She was crying that she didn't want someone named Trump to hurt her daddy. She didn't understand why someone going to the airport needed that many cops. She kept saying that she still needs a dad and she doesn't want him gone. It was heartbreaking! Eventually I ended up calling Brent so she could hear his voice. She offered him an ice pack incase Trump hurt him. Daddy told her not to worry, that Trump would not hurt him. We all got home and cuddled for a little bit and then put the kids to bed and Brent made formula and I worked on picking up the house a bit. I also sent GI a message. I had forgotten to ask them about adding salt to the girls' diet like genetics asked and I realized that we never found out the new dose of her reflux med. Hopefully I will hear back soon!
This morning we had Lydia's nurse. She said that since Lydia is doing so well gaining weight with the j feeds that she is discharging us. I really liked our nurse but am grateful that we are past the point of needing to do weekly weight checks! Oxygen came today too. Jilli also wanted to spend time today playing with Lydia which was sweet! Jilli also decided today was the day to ask where babies come from... oh miss Jilli! She also asked if I was old enough to have lived with dinosaurs...
Yesterday the doctor made a comment that really hit me. We spend a fair amount of time around other kids with special needs and you try not to compare kids of who has more needs and such. The doctor told us yesterday that she is amazed at how well our children do cognitively considering how nasty their medical charts look. Yes the word nasty was used to describe the girl's medical charts... and she is rather right (if this was a new doctor I might have been a little put off by this comment but this comment come from a doctor who cares a lot about the girls, and she really is impressed) We always try to put a positive spin on the girls stuff, partially because it overwhelms people if we don't and we try not to dwell in all of the challenges. It was just a reminder of how medically complex our kids really are. Sometimes I question if other families need things more and if it is selfish of us to use things like Katie Beckett and Ronald McDonald House... I think it is a mix of wanting to make sure that other people are taken care of, not always admitting to ourselves how complex the girls are, and not wanting to overstep our bounds of things... I think this also plays into why we struggle when people ask us what we need because our thought is about others, but we are so thankful for things like Katie Beckett (Jillian's med costs are CRAZY!) and Ronald McDonald House (Jilli was so sad to leave there yesterday)
Thank you for all of the prayers the past few days! We really appreciated them! Thank you for our tribe of people around us!
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