Sunday we checked into RMH. Caroline's family was there this week as well. RMH has different memberships to places in the area so both of our families were able to go to Betty Brinn together and check out their new CHW area. The kids all had fun. We had dinner at the house and then did art therapy with another one of Jilli's favorite people. On Saturday my parents were over helping with house projects and in the mail came a super hero cape and mission for Jilli. My parents signed her up for tiny superheros which is a program that you can buy a cape for a kid with medical needs and then buy a monthly subscription and then they get missions and these missions teach them about different skills they can use in the hospital. Jilli's first mission was about finding joy so she had to make three bracelets that each spelled joy. One was for her to keep and the other two came with boxes and a thing for her to fill out about why the person she was giving it to brought her joy. She brought her first mission with her to RMH and did it during art therapy Sunday night. She chose to give her bracelets to Caroline and Nate. Sunday night was really rough getting Lydia to bed. They dropped her ranitidine two weeks ago because she is on such a high dose of her other acid med but it is causing her sleep to be even worse. She falls asleep and then arches her back and screams in pain.
Monday morning we got up and Stacy planned a birthday surprise for me. She said she had planned to make me a cake for my birthday but then she thought about how that is not inclusive for the girls so she came up with an art project we could all do together. I am so touched that she made a point to include my girls and looked past the traditional things and looked at what I enjoy and spending time with people I care about and all being included is important to me and she made sure when they did something for my birthday it went with that. It also follows their family and how they celebrate birthdays. It was so sweet. So we spent the morning painting rocks. The girls and I headed over to the hospital a little early since there was not lunch to go and picked up some Subway (thank you to the person who gave me the subway gift card!) in the skywalk and then headed to pulmonology. The appointment went better then the last one however still had a few points that frustrated me. The dr walked in and Jilli kind of snarkily commented that she was not attached to the pulse ox and I explained that special needs said that was ok and the dr said that she was fine with it since the pulse ox probably was not telling us much since I am always with her and probably was not needed to have been on her 24/7... this is one of those times I am glad I have a rather passive personality because in my head I was thinking "what the crap! I lugged that thing through Disney and everywhere for months with it erroring and Jilli crying about it and now you think it was not needed" but I didn't say that I just sat there because picking a fight about it would not have helped anything. Jilli is transferring to the muscular dystrophy clinic in September where they look at the lungs for a muscular standpoint which I feel is the best thing for her (currently they are looking at her for an asthma standpoint but that is not the problem) so until then we are not doing anything which is good. For Lydia I brought up that she is starting to show signs of needing oxygen like her sister. We went to the museum and when we were done her lips where discolored from her energy usage. I brought up that we have seen a few pulse ox dips in her in PT as well and the dr said that she is not worried about her dipping into the 70-80s as long as she is not fatigued... This is where my face probably showed what I was thinking... ummm excuse me. A: this is totally different then what they said when Jilli was having this same problem. Jilli was getting worn out from simple things but they refused to do anything until we proved her pulse ox was dipping. B: I'm not ok with those pulse ox numbers! So now we document the crap out of things so when it gets to the point I feel like I need to push on this I have data to back me up. Right now she is still crawling and we are still ok right now but I will be watching this very closing. I do not want her to get to the point Jilli did before she went on oxygen. The dr also wants to up the asthma meds which I am not sure about because the girls needs are not asthma based and there are many studies that show for muscle/connective tissue issues that those meds don't really help. I need to read more before I do anything.
We then headed back to RMH and after work Brent joined us. We had dinner and then headed to music therapy to see another one of Jilli's favorite people. While the house was rather full this week music therapy was just us and Caroline's family and they headed to bed shortly after it started so Jilli got some good time with Melissa which made her really happy.
Tuesday morning we got up and headed to the art room for a while and then to the play room. In the afternoon the girls both had tube change in IR. Radiology at CHW has been redone and looks really nice. They had both IR rooms open so Brent went in with Lydia and I went in with Jilli. Jilli had a med student which is fine, its a teaching hospital in July, med students are everywhere! He had never put in an AMT button before and I guess putting it in is a little bit different. The dr was telling him it is a little harder then the mic key to put in but that some parents prefer them and push for the AMT so when that happens they put the AMT in... yup I am that parent that pushes for the AMT and I am not sorry at all. Jilli was not excited during tube change but was fine. The med student put too much contrast into her g when checking placement and Jilli almost puked on him but I sat her put fast enough that it shot out the g extension onto the chucks. Jilli was excited when she saw the liquid was yellow and green and commented how she was happy that her liver decided to work on making bile while she got her tube changed. Poor med student, I think he was confused and lost by the time she walked out of the procedure. Brent and Jilli then headed back to RMH and Lydia and I headed up to visit my 8th grade science teacher who has a kiddo in the hospital right now. She is a fellow medical mom which means we connect on a different level. We then headed back to RMH and had dinner. After dinner Brent loaded the car while Jilli did some art and then we headed home.
This morning the girls and I headed to the day care to pick up the coins from the coin war and then to PT for Jilli where I found out that the state sent more questions about Jilli's wheelchair and some of the wording is making us all very nervous (it outright asked if she could rent one from a loan closet until she becomes medically stable!? 1. She is "stable" at the moment, this is what is 2. we have one from a loan closet at the moment and it is not filling her needs, we are thankful for it as a bandaid but it is not a long term solution) so I helped answer some things so her therapists could write the letter to answer the state's questions. I am thankful for her medical teams help in all of this. Her PT emailed me after 8:30 tonight to let me know she just finished the letter. During PT Lydia was crawling around which she normally does and then she came over to me with a worried look on her face and started looking like she was going to puke and make a choking sound. I checked her mouth and she didn't have anything in there. This is the sound she has been making when she has been trying to fall asleep for the past weekish. After PT we headed to Target to get more stomach drain diapers and as we went to leave she did the same thing. Since coming home she has done is many many times. She sounds like she is choking and then a little bit of spit will come out. This is the same thing that happened in October and May. This is Lydia's body's version of a crash. She is happy. She doesn't have a fever, this is just her body not handling things. I called GI yesterday morning at 9:30 to ask if we could go back to once a day ranitidinte because she started having issues when we totally dropped that med. Today I sent a mychart message asking the same thing... I still have not heard back. Hopefully they get back to me tomorrow because this is not ok and I am really worried that she is going to have a GI bleed again. Tonight we are on edge here and are doing little things to prepare incase we need to head to the hospital if a GI bleed starts. This is really rather a bad time because we have Shriners tomorrow to pick up her braces so I am hoping we are able to do that but right now we are taking things minute by minute and I am typing while she cuddles with me.
On Monday my mom also brought the paperwork for medicaid up to our caseworker and she faxed it to the right person. Hopefully now it is in the right place and they can process her Katie Beckett paperwork. That has added more stress this week!
Also congress has not been helping. I wrote a public facebook post about it yesterday so if you want to know my thoughts you can see that. I wrote Ron Johnson again yesterday... honestly at this point I feel like it is for my mental health because I doubt anyone is reading what I send (people like me keep being called payed protestors... I really would like to know who is handing out money to send letters to elected officials... I could use that money to pay for medical things lol but really no one like me or the thousands of other medical parents are getting paid anything we are just worried parents trying to do the best for our kids) I worry if there is less money in the pool for medicaid that wheelchairs and other needed things will become even harder to get because people that play the system will always know how to work it better then I can they will always get something, it will be the rest of us who are hurt. Without a way to lower costs of things cutting money just undefunds something that that means things are going to need to be cut... you don't need a wheelchair to keep breathing and insurance doesn't see the need for you to ever leave your house so things like that are just going to get harder.
Well blogging has helped. Getting it out of my head has helped. Also thank you to the people who commented with support on my facebook post of the people who where texting with me during it. I really appreciate it! I know we will keep fighting but sometimes I have moments where the weight feels crashing and I am thankful for the people who come around me in those moments.
here are pictures, they uploaded in a funny order:
 |
| Lydia tonigt |
 |
| Jilli with her tiny super hero cape |
 |
| Jilli took my phone and took this picture when we were getting heady to head in for tube change... she thought it was so funny! |
 |
| The girls might not eat but they still love to have pretend tea parties |
 |
| Dancing Lydia |
No comments:
Post a Comment