Broch, throat scopes and a GJ

Whirlwind of a day!

Yesterday afternoon the girls and I checked into Ronald McDonald House and played and hung out. The girls got to go to the magic room and pick out a toy... Jilli was so excited for Peppa Pig bath toys and Lydia got a baby doll! We did art and played dress up until Brent got done with work. He then joined us and we got everything in the room and organized. We went and had dinner which was provided by volunteers (yummy berry chicken and rice and beans... a nice healthy meal!) and we caught up with friends we have made here. We then headed down for music therapy where Jilli got to make music with a music therapist and some friends. She LOVED it! Lydia was having a bit of a rough day and music therapy calmed her right down too. Brent and Lydia then headed to the room and watched the debate and Jilli and I went to the art room and hung out with other families. There is a reason this place is called a house... because they try to make it as much like home as possible and the other families here are in situations like yours and it is so comforting to be able to spend time with other families like yours. We hooked the girls up and neither of them thought that anyone needed sleep. I walked the halls with Lydia for a while and then we all worked at getting Jillian to sleep.

5am came fast. We got the girls dressed and headed out the door (we had to check into the hospital at 6am). I am so thankful for the skywalk to be able to walk right over to the hospital. We checked in and they sent us to the 3rd floor. Surgery check in was full because all of the first cases of the morning were checking in. They took us back to a pre-op room. Thankfully they let Jilli and Brent stay with Lydia and I. The anesthesiologist came in... he was AMAZING! He read up on Lydia before he walked in the room, he knew all of the precautions to take with mito and EDS and make sure we were comfortable with the plan. He said we would keep her on sugar water the entire time to prevent some issues that can arise from fasting and mito. You could tell by the way he was talking that mito was not new to him. Brent and I were impressed... and between our two kids we have been in the OR 9 times so we are use to the drill and this guy made Brent and I say wow. Our doctors came in and we talked. Lydia's pulse ox was ranging between the low 80's and 100. I asked the nurse if she could make a note about that incase Lydia starts having more breathing issues like Jillian so we have a record of it. They then took Lydia back. Jilli, Brent and I headed to the waiting room. A volunteer brought Jilli some pictures and crayons (Jilli also got a sticker book from rmh to play with during the surgery). Once the surgery was done they brought us into a  room to talk to the doctors.
First the ENT came in. She said for the most part everything looked good on her end except she has a spot above her voice box that is floppy and probably the cause of some of the funny breathing we hear. It is intermittent and nothing they can do about it now. She said it looked like it was waving to her. Then the pulmonologist came in. She said for the most part things looked good. The trachea is suppose to have defined ridges but Lydia's are not defined and are glossy. She said that indicates swelling. She said the entrance into her right upper lobe is higher then is should be but is not a concern. She took biopsies and we will get those back in a weak or two. She said there was a little bit of stuff in her lungs but not a ton (not as bad as Jillian's) and the lungs don't look infected.
They then had us go back to the waiting room. A few minutes later someone came and told us that Lydia was headed to IR to get her tube changed to a GJ. We were talking before surgery with the nurse about the tube change and the anesthesiologist walked in and said that he would personally make sure that it got done. The ENT said she asked the anesthesiologist after surgery if he needed help getting everything lined up for the tube change and he said that he had it. Lydia was taken right from the first recovery room right to IR to get the tube changed while she was still sleepy which was perfect and the best thing for her. They told us that once she was done in IR they would be bringing her up to the 4th floor to finish recovering. They had us then move to the 4th floor waiting area.
A little while later they came in and said that we could go back by Lydia. A nurse that we had before was in with Lydia which calmed my heart. We have had the opportunity to meet many great staff members at Children's and we are grateful when we see a friendly face.
We hung out in the recovery room for a while. The anesthesiologist wanted to make sure she was really good after they were in the lungs which I appreciate him wanting to make sure that Lydia was ok. After a little bit we took a look at Lydia's tube and opened the g to drain and started running water at a slow rate into her j. I ran down to the cafeteria and grabbed us some food since we had not really eaten and it was now 10am and my blood sugar was starting to have issues (I just can't eat before big things... I have rather lived on coffee today). We hung out for a while in post-op and Jilli watch TV and Lydia napped. The anesthesiologist came in to personally check to make sure that Lydia was good enough to leave. We then were discharged.
The original plan was to get a chest x-ray when she went to IR (pulmonology wanted it to have a baseline) but since she was able to go to IR sooner the chest x-ray didn't happen so I figured we would head back to rmh and I would call scheduling and see when we could get in but we ran into a friend on our way out who told us that you can go to x-ray without an appointment and they will slid you in between other kiddos. We headed down to x-ray since we were already at the hospital and they could not find the order so they had to call pulmonology to get it figured out. Once it was all figured out they brought Lydia and I back to x-ray... it rather sucked. She screamed and they had to tape her head in the right angle. Once that was done we headed back to rmh (honestly I was done being at the hospital... everyone had been great all morning and super nice but it was still emotional)
We decided that since Lydia was going to spend the day napping we might as well let Jilli do something fun. Ronald McDonald House has passes to different things in the area that you can check out so we decided to go to Betty Brinn. Tuesdays in September is a great time to go! Jilli had a lot of fun and Lydia rested. We met a family there who had a little boy around Jillian's age who wanted to know about her oxygen so they kindly came up to us and asked us if he could ask Jillian questions about her oxygen and we told them sure. We all had a good conversation as he asked Jillian about her different tubes and why she needed them. Jilli did an AMAZING job explaining her tubes and why she needs them. I am so proud of her. Then the two kids when off and played together. They had fun playing in the ambulance together. It was so sweet and these parents did a great job teaching their kiddo that while Jillian has differences it is ok to talk about it, its not scary, and that kiddos with differences are still fun to play with. My heart was so touched. The museum was also so sweet... they comped our parking for us... not something we were expecting but we were so grateful!
We then headed back to rmh and rested for a little bit (not that the kids took naps lol). Jilli played for a bit and Lydia puked ALL OVER Brent. It did not surprise me that she puked after the surgery but poor Brent took a ton of puke. Then we headed to dinner where the yacht club made ribs for dinner... they were AMAZING! I wish I didn't have hospital stomach so I could have enjoyed more of it!
We then headed down for art therapy and Jilli and I colored for a while. Now we are back up in the room and Jilli is playing iPad, Lydia is debating sleeping (she is cuddled up next to me as a type) and Brent is working on getting formula and meds ready for the kids.
Tomorrow we had GI and we will see where the day goes from there.
THANK YOU so much to everyone who prayed for us today! We are so grateful. Also a HUGE thank you to everyone we interacted with at Children's today, you were amazing. Thank you to everyone who donates to Ronald McDonald House... this place is amazing for the kids and it is so wonderful for us. To have dinner prepared so we don't have to think about it (and the food costs add up fast while we are in the hospital so this majorly helps with that), a place for the kids to play between appointments and other families to hang out with, it really helps. Thank you to everyone who loves on us!  

Doing art at Ronald McDonald House

she did this by herself- pink sky, Ronald McDonald House, flower and a tree

She LOVES the dress up costumes!

Lydia LOVES this toy snail... I think we might need to find one for home, it makes her smile so much!

Jilli at music therapy

The girls matching this morning (somehow Jillian peed through two pair of pants today...)

Lydia in pre-op

Jillian coloring while Lydia was in surgery

Lydia in post-op

Jilli at Betty Brinn- she loves the market part

Brent is such a great dad! We are so blessed!

Jilli in the pretend ambulance

Lydia after puking (we are working on figuring out draining and feeding with the PEG GJ tube that Lydia has)

Jilli in her pajamas (last night she wore her George pajamas from Caroline)... she was SO excited that we finally found slippers that are her size (she has tiny feet)

Brent and Lydia at art therapy

Jillian coloring with colored pencils