Well, Wednesday brought her procedure and brought news that we weren't expecting. I had anticipated that the procedure would show she either had one problem and needed a particular surgery or another and therefore a different surgery. Unfortunately, this was not the case. The doctors (2 of them did the procedures) came out with the conclusion that she may need both.
So they want her to start by having a Fundoplication. They believe that even though she is on high doses of medications her reflux is still so chronic and bad that she is aspirating and that is causing her lung infections and the fat (lipids) growing in her lungs. She also has a Laryngeal Cleft. Thankfully hers isn't too bad. It is between the type 1 and type 2 (sitting right at the level of the vocal chords). So there is the potential that she may have to have it fixed if she doesn't stop aspirating after the other surgery.
There was a lot of other stuff that was evaluated and found, but that is the big stuff. We are still waiting on some test results, but those will be sent to our doctors at home. We are going to head home and try to find a good surgeon there because it will be much easier if our whole family can be together.
Thanks for your prayers! We appreciate it so much more than I can express!
Friday, August 23, 2013
Tuesday, August 20, 2013
Days 6 & 7
Just a quick update on the last couple of days. Day 6 held some personal miracles! We didn't have too much going on medically (other than adding nasal washes which she is NOT a fan of), but God answered one of the deepest cries of my heart in an amazing way! I'm so very blessed!
Today she had several appointments. Her favorite was art therapy! :) Her least favorite was having to to a laryngoscopy, but she did AMAZING!!! I was so proud of her! What they did was hook her up to several machines and have her run on a treadmill for 10 minutes. As soon as that was over they stuck a camera down her nose and into the back of her throat. While the camera was there they had her do several things. This procedure helped to rule out any vocal chord dysfunction! What it did show is that her entire larynx area is completely swollen and inflamed. There are 2 main causes for this ~ post nasal drip (not too big of an issue) and/or severe reflux and aspiration. So, this is one more confirmation that this really is a big issue for her.
Tomorrow will be interesting because they are going to do some tests to try to rule out a couple of things that could be causing the aspiration. The procedures being done should help to give us good direction on what the next step needs to be. We are aware that it will most likely be yet another surgery, the results will just determine which one. We are just praying that we will have very clear answers and direction!
Today she had several appointments. Her favorite was art therapy! :) Her least favorite was having to to a laryngoscopy, but she did AMAZING!!! I was so proud of her! What they did was hook her up to several machines and have her run on a treadmill for 10 minutes. As soon as that was over they stuck a camera down her nose and into the back of her throat. While the camera was there they had her do several things. This procedure helped to rule out any vocal chord dysfunction! What it did show is that her entire larynx area is completely swollen and inflamed. There are 2 main causes for this ~ post nasal drip (not too big of an issue) and/or severe reflux and aspiration. So, this is one more confirmation that this really is a big issue for her.
Tomorrow will be interesting because they are going to do some tests to try to rule out a couple of things that could be causing the aspiration. The procedures being done should help to give us good direction on what the next step needs to be. We are aware that it will most likely be yet another surgery, the results will just determine which one. We are just praying that we will have very clear answers and direction!
Saturday, August 17, 2013
Day 5 ~ And looking ahead.
The last couple of days have been nice! Friday we had to be to the hospital pretty early so that our sweet girl could have another CT scan and some other tests. She did so well that we were done by 10:30! They let us go for the day at that point so yesterday and today we were able to do some fun things together!
Yesterday we were able to go to the Denver Museum of Nature and Science. Because we are staying at the Ronald McDonald house we were able to get in for free! She had fun checking things out! She especially enjoyed the Discovery Health and Kids' sections!
Today we were able to get into the Denver Aquarium for free as well! She had fun looking at and petting the stingrays! She loved looking into the aquariums from underneath!
Tomorrow we are going to go and see a friend that lives about an hour away. We are looking forward to a relaxing day (my little monkey really is looking forward to swimming). Monday and Tuesday we have some tests scheduled. Wednesday she is being put under so that 2 different doctors can do some tests (rigid bronchoscopy, endoscopy, and biopsies). That will give us the direction we need to go next.
We really appreciate everyone's prayers! Here's a picture of our little one enjoying the stingrays!
Yesterday we were able to go to the Denver Museum of Nature and Science. Because we are staying at the Ronald McDonald house we were able to get in for free! She had fun checking things out! She especially enjoyed the Discovery Health and Kids' sections!
Today we were able to get into the Denver Aquarium for free as well! She had fun looking at and petting the stingrays! She loved looking into the aquariums from underneath!
Tomorrow we are going to go and see a friend that lives about an hour away. We are looking forward to a relaxing day (my little monkey really is looking forward to swimming). Monday and Tuesday we have some tests scheduled. Wednesday she is being put under so that 2 different doctors can do some tests (rigid bronchoscopy, endoscopy, and biopsies). That will give us the direction we need to go next.
We really appreciate everyone's prayers! Here's a picture of our little one enjoying the stingrays!
Thursday, August 15, 2013
Days 3 & 4
Days 3 & 4 have been quite busy ones! I think we have seen 7 different doctors (possibly more). The amazing thing is that they are all talking and trying to figure out how to best help our little princess! We have done lots of testing, and have even more to go. It has been interesting to get different perspectives!
Good things ~ They have some new ideas of things to explore. The testing hasn't been too bad so far! My sweet girl is holding up pretty well! I was able to sneak away today and take her to the Denver zoo for free! She loved all the monkeys! :)
There have been some frustrations along the way as well (dealing with insurance companies is ridiculously frustrating sometimes). But I'm confident that God is in control and He has us right where He wants us! Looking forward to getting answers and a better plan to help our princess!
Me with my sweet girl at the zoo today! She was convinced that the lemurs were really monkeys!
Me with my sweet girl at the zoo today! She was convinced that the lemurs were really monkeys!
Tuesday, August 13, 2013
Blessed!
Blessed...There just isn't a better word to describe how I feel right now! We have been blessed in so many ways since we made the decision to bring our little one to Denver for medical care. We have had amazing friends and family and our church supporting us in ways that bring tears to our eyes! We had incredible gas mileage on our trip (far better than I expected)! God made a way for us to get a room in the packed out Ronald McDonald house that is only 2 miles from the hospital! Even the lady I talked to this morning said it was a miracle that we got a room! To top it off when we got to the house tonight we found out that there was a business providing dinner for everyone staying here tonight! There are so many other things I could point to as being huge blessings right now, but suffice it to say that I am confident that God is in this trip and He is blessing!
So far at the hospital we have done a few tests, but we have spent many hours in conversations and in consults with multiple doctors. We meet with another one tomorrow. We have been told that her case is a pretty complicated one by more than one doctor, but I'm encouraged that they are coming up with ideas that I've not heard of yet, and things that are fairly easy to test for. I'm really looking forward to seeing how God provides the answers that we need!
Thanks for your prayers and encouragement!
So far at the hospital we have done a few tests, but we have spent many hours in conversations and in consults with multiple doctors. We meet with another one tomorrow. We have been told that her case is a pretty complicated one by more than one doctor, but I'm encouraged that they are coming up with ideas that I've not heard of yet, and things that are fairly easy to test for. I'm really looking forward to seeing how God provides the answers that we need!
Thanks for your prayers and encouragement!
Wednesday, August 7, 2013
BUT GOD!!!
Yesterday we got news from the neurosurgeon that no parent wants to hear. Our sweet girl has done some growing and that has made a difference in where her brain surgery was done. To make a long story short, she is going to need another brain surgery. This was shocking and heartbreaking for us all.
Two simple words have brought hope and have helped me to regain perspective...BUT GOD... The doctors and the tests don't say what we want to hear, and life is crazy, BUT GOD ~ loves my baby girl, can work miracles, is Healer, is in total control, is worthy of my trust, and so many others.
I'm so thankful for a new perspective, and for a God who works miracles!
Two simple words have brought hope and have helped me to regain perspective...BUT GOD... The doctors and the tests don't say what we want to hear, and life is crazy, BUT GOD ~ loves my baby girl, can work miracles, is Healer, is in total control, is worthy of my trust, and so many others.
I'm so thankful for a new perspective, and for a God who works miracles!
Monday, August 5, 2013
Hope
Exactly one week from today we will be starting treatment with National Jewish Hospital in Denver for our sweet little girl! I have so much hope that we will be finding answers and have a better treatment plan to help our precious little girl!
I had a friend last night tell me that I really need to pray and be willing to ask God for BIG things, and KNOW that He is the kind of God that loves us and desires to heal and provide us with our needs and also the desires of our hearts. So, we are praying for a miracle! We are praying for answers to WHY she has been so sick. We are praying that we can significantly cut the number of medicines she has to take on a regular basis! We are believing that God will use this trip in a big way!
We appreciate your prayers as we go on this trip! Prayers for safety as I drive the long distance with her and prayers for the doctors to know exactly how to best help her! Prayers for provision, and that there would be an opening at the Ronald McDonald house so we have a place to stay would also be appreciated! I will try to post updates regularly while we are there!
I had a friend last night tell me that I really need to pray and be willing to ask God for BIG things, and KNOW that He is the kind of God that loves us and desires to heal and provide us with our needs and also the desires of our hearts. So, we are praying for a miracle! We are praying for answers to WHY she has been so sick. We are praying that we can significantly cut the number of medicines she has to take on a regular basis! We are believing that God will use this trip in a big way!
We appreciate your prayers as we go on this trip! Prayers for safety as I drive the long distance with her and prayers for the doctors to know exactly how to best help her! Prayers for provision, and that there would be an opening at the Ronald McDonald house so we have a place to stay would also be appreciated! I will try to post updates regularly while we are there!