I have been quite for a little while

Typically if I go quite on here for a while it is because of one a couple of reasons:
1. Life has just been status quo for a while and there just has not been much to talk about (not often)
2. Life has been busy
3. Life has gotten crazy with Jillian stuff and time is on short supply
4. I don't think I can type what I want nicely

Right now you can combine 3 & 4.

Jilli curled up on Saturday saying "tummy hurt"

 This has been my motto the past few weeks:
'But those who wait on the LORD Shall renew their strength; They shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.' (Isaiah 40:31) (NKJV). Ie: There is a plan for all of what you are about to read... even if it does not seam clear to me right now.

I mentioned last time I wrote about Jillian's pulse ox dipping. When Jillian is walking around and in PT her pulse ox is dropping into the 80s. THIS IS A PROBLEM! I called her peds office the other day to ask for help about this all and when I said pulse ox in the 80's they talked about ER right then, however this is a long term problem not acute so the ER is not going to be able to solve the problem.

This problem was discovered during therapy because Jillian has such a short stamina and we were trying to figure out why... now mind you the therapist and I talked testing her pulse ox during therapy on 3/30. We tested it during therapy on 4/6. I contacted pulmonology that day. A nurse called me that day to say Jillian's dr was out of town but a fellow would be contacting me that day. By Thursday that week I still had not heard anything so I called them. A nurse apologized and said someone would contact me that day. Friday morning I called because the fellow still had not contacted me. Friday morning I got a message on-line to give her albuteral before therapy. This response made me mad. I called Jillian's ped's office and they refereed us to cardiology and told us to contact pulmonology again on Monday.
Monday 4/13 pulmonology contacted me and said to give her albuteral before therapy and if that did not work to contact them and we would do a pulse ox study. Surprise surprise the albuteral did not fix the problem. I contact pulmonology again on 4/13 and then did not hear from them. I called on Thursday that week because I had not heard back and they said they were ordering a 24hr pulse ox study to be done at home and that they were contacting VNA to provide the pulse ox. It had been a few hrs and I had not heard from VNA so I contacted them. They called me back while I was at my allergy appointment and VNA told me that they are not licensed to do the test pulmonology ordered for multiple different reasons that all made sense. I contacted pulmonology and they told me VNA just needed to do the test. This went back and forth all of Thursday and Friday with countless phone calls that VNA told me they could not do it and pulmonology told me that VNA had to. I was stuck in the middle between the two. It was not pleasant and I could feel my blood boiling. It was not a good situation.
This now brought us into the weekend where I knew once again I would not hear anything til Monday. Dan's mom called me and she helped me vent and process through what the best next steps would be. Jilli also took a walk on Sunday outside. By the time she was done her heart rate was 125 and her pulse ox was 81! Saturday night during dinner the skin around her lip looked blue. I was feeling beat up and helpless because I knew my kid needed help but not the kind of help an ER would provide... long term help.
Monday morning (4/20) I called Jillian's ped's office and expressed my frustrations with them.  They told me that since we were seeing cardiology today to wait and see what cardiology had to say and if they would not get us a long pulse ox study then her ped would help us. Monday afternoon while we were at therapy pulmonology called and said they found someone else who is licensed to do the test and that company would be contacting me. Thank you! This whole pulse ox dropping convo has been going on for almost a month... a month in which my anxiety has been high as well as my blood pressure... and oh yeah we find it very likely that our child is not getting enough oxygen.

Today we went up to Children's. We had the cardiology appointment scheduled but we ended up needing to see GI first today. Jillian's tube site has been weepy/bloody since Sunday. It is not granulation tissue but like the skin around the tube has just burst open. Her GI motility has been yucky the past few days and we have had issues with popping med ports and hard flushed because of bile wanting to flow up the j port. I gave it a few days to try to fix itself but when it still looked yucky this morning I called our awesome nurse and she told us to come up early and the nurse that was in charge of feeding tubes for the day would help us out. We went in and they used silver nitrate to "burn" the area to stop the bleed and this special stringy stuff to put over it to help it heal. This is odd because normally her site looks amazing. It is not infecting and she has only complained a few times that it hurt but it should not be bleeding. She did great with the silver nitrate treatment. She said "ow" once, otherwise she held up her belt for them and was such a big girl. I was amazed.
We then headed over to cardiology. They did vitals and then we went into a room. A nurse came in and went over history with us. Then the dr came in and we talked a little bit more of Jillian's history and what is going on. She said it could be that there is a hole in the top of Jillian's heart, or it could be a few other structure issues, however she thinks it is most likely that the blood is not coming from her lungs well oxygenated. She said that if it is one of the things that she listed that most of them are not things we can do anything about (that hit my heart like a bag of bricks). They tried to get us in for an echo today however the lab was booked so we are going in Thursday afternoon to do the echo. The doctor agreed that Jillian's stuff does look like mito. Everywhere we turn mito looks more and more like the reason for Jillian's stuff.
While we were with the dr the company that is doing the pulse ox test called and left me a voice mail. I called them back and they are bringing the pulse ox over tomorrow at 3:30 and they will come pick it up on Thursday. I am glad to finally have that scheduled after all of the fighting, although I will believe the test is actually happening once it started...
 We did get some great news this weekend! We got a letter in the mail from the insurance company that looks like they have pre-apporived her genetic testing. This is HUGE! Now we are just waiting for a call from genetics so we can give them the final ok to run the test.
We have also been messaging back and forth with the GI motility dr. She is great! We are working together to figure out the best plan for Jillian GI wise. I like that she is trying to look at as many options as possible and talking to other doctors so we can make the most informed choices. I really appreciate how hard she is working for Jillian.

Relaxing against a chair

Here is what we could use prayer for right now:
1. For the pulse ox test to show what we are seeing at home. Jillian has had so many tests that come out leaving everyone scratching their heads. We have seen her pulse ox drop every week at therapy for the past 3 weeks. We have also seen it at home. I am just praying that the pulse ox tomorrow picks it up because we can only help her with this issue if we they see it during the test. I don't wish for my kid's pulse ox to be dropping but it is so we need to get it accurately documented to best help her.
2. Pray that once the dr gets the test results that we come up with a good plan quickly.
3. Pray that the echo shows us what we need to see. Pray that Jillian lays still for the entire 30-40min procedure (she will not be sedated) so that she is able to get all areas looked at.
4. Pray that if there is a heart problem that we are able to work with the dr to best help her.
5. Pray that genetics contacts us soon so the test can start. We will not get results back for at least 3 months from the time the test is started.
6. Pray that when the bill comes the insurance company still decides to pay it. Pre-approval does not mean payment, it just means that they likely will pay, until the bill is submitted we will not know for sure.
7. Pray for results for the genetic testing. They are looking for a needle in a haystack (multiple drs have said that obviously something is wrong... its just seeing if science is smart enough right now to be able to pinpoint it). There is about a 30% chance of them finding out what is going on. If it is mito, it takes many families YEARS to get the correct diagnosis. Please pray that they are able to figure out what it is sooner then that. They are also looking at some other stuff then just the exome sequencing, please pray that helps us in figuring out what is going on with Jilli. We have hit the point where we understand fully that knowing what it is will likely not bring a cure but knowing what we are battling would be nice.
8. Pray for healing of the tissue around her tube site.
9. Pray for a situation with her orthodics, we are working on getting Jillian fitted for othodics but have hit a few bumps in the road. They look like they should hopefully be solved Monday but we will see.
10. Join us in thanking God for all of the amazing things we have in our life. We have an amazing little girl. We have some great people around us who have let us vent, cry, and rant these past few weeks. I know I have been crabby during this pulse ox situation and I have been a pain to be around but I am so thankful for everyone who has loved me despite. God has brought some amazing people in our lives.

Thanks for reading my long blog post. Thanks for praying. I know its a lot. Feel free to ask questions as I am sure this tired brain has left things out.  Thanks!

This look is more and more common at our house(yes she is cuddling with an empty water jug... I don't know why...)

She was Mickey/Minnie head to toes on Saturday and she lloved it!

Her at Uncle Seth's Birthday dinner. she was kinda like a wet noodle. This was after the area under her lips went blueish

Then she went to sleep on daddy

Cuddling with daddy's leg on Saturday morning

looking at books with Grandma

I think some boys in her life have had an influence on her... We stopped at the mall this afternoon so I could walk (good stress relief and it was too cold to be outside) She just wanted to go to the Lego store. She was excited to get out of her stroller and look at Duplos