Washington, D.C. Day 6- Discharge Day

Well, last night was horrible. Ana had excruciating pain from midnight until 10:30am this morning. The pain was so bad and out of control that she couldn’t go on with it any longer and they stopped the test. The catheter had already slipped from the original placement, so how much data was collected is unknown at this time. What we do know is that surgery seems to be unavoidable... we will hear from the team next week with exactly what surgery needs to be done and when they will do it. On her return trip she will also see the mitochondrial disease specialist and the pain management team. I know that all of this seems very vague, but Ana is 16 now and we want to protect her privacy as much as possible while also keeping everyone updated. 
Prayer Requests:
~for peace and comfort in the coming days and weeks
~for Dr. Levitt as he makes decisions pertaining to Ana’s care
~for us and Ana’s siblings as we help support her through all of this

Washington, D.C. Day 5

Tonight’s update will be short because I’m absolutely exhausted. As a nurse, I can honestly say that I feel like I have worked a 120 hour long shift and it’s not ending. With all of these tests, I am constantly having to provide care, document everything, talk to team members, and emotionally support Ana. Today’s procedure was longer than expected do to some complications with getting the manometry catheters in place. Ana is very uncomfortable with the manometry equipment. On top of the major stuff, she has had 6 IVs in the last 72 hours... with the newest one being placed 30 minutes ago... not fun. 

I am so thankful for your prayers and concern for our girl. To the many of you who have reached out to us, thank you... it really means a lot... I haven’t been able to respond to everyone, but know that I have read your messages and your encouragement means more than you know.

Prayer Requests: 
~for Ana to feel better
~for our meeting with the physicians tomorrow
~for the catheter to stay in place for the remainder of the test 
~for answers 

***Ana was very happy to see her old friend, Josh, who works on the flight team at Children’s National! They have been friends since she was 3 years old.***

Washington, D.C. Day 4

Today has been a very long day... it started at 3:30am when the stomach pain began... while I hate to see her in pain, I am glad that it happened for 9 hours of the test. Unfortunately, it did have an impact on her ability to take full meals during the test, but hopefully they will still be able to gather all of the information that they need. The catheter was removed from her nose around 2pm and her throat is now starting to feel better. 
Shortly after the tube was removed, the prep for tomorrow was started... and it has been a very, very, very long and slow process.
We were able to meet with Dr. Levitt today and he is thinking that surgery is most likely necessary. He tossed around some ideas and will trial them during tomorrow's test, but if they do not work, he will have to remove part of the large intestine. He is eager to see what the results will show and plans to follow-up with her on Friday before she is discharged. 

Prayer Requests:
~that the prep for tomorrows procedure will be done soon
~that the doctors get the results they need to make an informed decision about Ana's care
~that Ana will be able to get some rest tonight
~that tomorrows procedure would go well and without complications
~that the pain management consult would be productive
~Pray for peace for Ana... tomorrow will be a very hard day...

***Ana had some very special visitors today! Abby, the therapy dog, some time cuddling with her, and the Healthy Humor Red Nose Docs paid her a visit!***

Washington, D.C. Day 3

After a long PACU (recovery room) stay, Ana is finally resting comfortably in her room watching movies. She has timed meals & snacks, timed motility medications (to see how her body responds to them), and timed x-rays (making sure that the catheter stays in place). We have been very impressed with the collaborative care that she has received and we are astounded by the knowledge that everyone here has about mitochondrial disease. 
Many prayers were answered today in regards to the procedure and anesthesia. Ana tolerated it well. They originally planned to do it without intubating (putting in a breathing tube) her, but that did not work out, so her biggest complaint has been a very sore throat. She will have the tube in her nose that goes into her stomach and small intestine for 24 hours. Once the 24 hours is over, this tube will be removed and they will begin the preparation for Thursday's testing. 

“For I am the Lord your God, 

who upholds your right hand,

Who says to you, ‘Do not fear, I will help you.’

Isaiah 41:13

Prayer Requests:
~Pray that the sore throat would go away.
~Pray for tomorrow as she is prepped for Thursday.
~Pray for the pain management consult... that God would give the physicians wisdom and knowledge in how to help Ana deal with the pain when it comes. 
~Pray for the colorectal surgery consult and that God would help guide Dr. Levitt in his care for Ana. He truly has been a life saver for her since 2008. Pray God's blessing on him and his willingness to help Ana.
~Pray a special blessing on the nurse anesthetist that took care of Ana in the OR today. She took Ana under her wing when we had to leave her and I am so thankful for her and the entire team! 
~Pray for answers... 

***For my fellow nurses and friends who are in the medical field... Never forget that the smallest things can bring our patients and their parents the most comfort... this simple gesture of tape cut in the shape of a heart brought a smile to Ana's face and warmed our hearts... I know how easy it is to get "burned out," but know that you DO make a difference!***

Washington, D.C. Day 2

We made it to D.C. safely! Ana had to endure 5 hours of appointments today with the gastroenterology team, hospitalist, anesthesia and the lab. Tomorrow morning she will go under general anesthesia to have catheters placed and biopsies taken from her stomach and small intestine. With the manometry catheters in place, she will undergo 24 hours of testing with timed meals, meds, and fasting. The upper GI catheters will be removed on Wednesday and then she will begin prep for Thursday. On Thursday she will again have general anesthesia to place catheters for the other studies that the colorectal surgeon needs, with plans to discharge on Friday. While inpatient she will have consults with colorectal surgery and the pain management team. They also want to make plans for her to see the mitochondrial disease specialist when we return for follow-up, or surgery (if needed).

Prayer requests:

-Peace during the storm... these tests are complex and long

-for protection while Ana is under general anesthesia... she has been known to have some major blood pressure and cardiac issues with these drugs due to their affect on the mitochondria 

-answers... (we really, really need answers as to where this pain is coming from and how to stop it)

-that somehow surgery can be avoided 

Washington, D.C. Day 1

Hey, It's Ana! We are finally headed for D.C.! Once we get there, we will be staying in a hotel for a couple of nights. I will have several appointments on Monday. On Tuesday, I will be admitted to the hospital for testing, this time under anesthesia. If everything goes as planned, I will be discharged on Friday. I'm asking for prayer that the doctors find some answers for this pain that I've been having, and that we stay safe in our travels. My mom or I will try to keep everyone updated each day, while we are in Washington, D.C. 

Now I know that the Lord saves His anointed;
He will answer him from His holy heaven
With the saving strength of His right hand.
Some boast in chariots and some in horses,
But we will boast in the name of the Lord, our God.
Psalm 20:6-7

Below are pictures of me with my baby, Jessie Rey, before heading to D.C.! I have officially been riding with Hero's on Horseback for 13 years and it has changed my life. There is something special about bonding with a horse that I can't fully explain, but I am so thankful to have him in my life.  

Heading to D.C.

I wanted to update everyone and let you know that we are headed to Washington, D.C. on February 9th. Ana will see doctors in clinic on the 10th, and then be admitted on the 11th. If testing goes well, she will be discharged on February 14th. At that point, if surgery is deemed necessary, we will return home until it is scheduled and insurance stuff has been submitted. We are not sure how everything will work out at this point with travel and Shey being without PTO, but we know that God has a plan and that He is faithful. Ana wants both of us to go and that is our prayer. 

Anyone interested in donating to Ana’s Special Needs Trust can do so through the donate tab.
Thank you all for your prayers. 
 #sharingiscaring #whymito

Here We Go Again...

The Collaborative Team at Children’s National met this week and it has been decided that Ana needs additional testing, under anesthesia, at their facility. They are also consulting with gastroenterology. Once the testing is complete they will have a better idea of what they can do to help alleviate the pain that she is having. I will not go into further details on what they are thinking at this point to refrain from causing unnecessary worry on Ana’s part. We are leaving it at that for now, since nothing is for sure until after the actual tests are complete. 

We have lots of concerns that revolve around the logistics of all of this. I will file FMLA, but Shey has no available PTO or resources to be able to accompany us. Unfortunately, with government contract employees, you are at the mercy of whomever the government gives the contract to and this particular business has decided on no PTO until September of 2020. As for me, I should be ok for the testing and then it could get sticky once they know what needs to be done next. If surgery is the only option, then that will mean out-of-state surgery and recovery. With Ana, recovery time is unpredictable. To further complicate things, we have the holidays and the potential of having to make two trips pretty close together. Thankfully, I have a little PTO and my work will add two weeks of full pay before the short term disability pay kicks in... which is not great pay... but nonetheless, it is something. Add school and selling a house into the equation and it gets pretty overwhelming. And then there is Christmas... We do care about that being special for her. 

We are waiting to hear back from the team on dates for the testing and consults. They will then refer us to their concierge who will work with us on housing once we arrive in Washington, D.C. The Ronald McDonald House will obviously be the cheapest option if they have rooms available. 

For now we wait and pray. Pray for answers. Pray for the financial situation as a whole. Pray for the timing of everything. Pray for everything surrounding this situation. Pray for a cure for mitochondrial disease. 

Sorry for the absence in updates on this page, but we are using Facebook more often than Blogger these days. This is the latest. 

Her Facebook Link: Help Cure Ana Maria

#helpcureanamaria #sharingiscaring #mitochondrialdiseaseneedsacure

Times Flies!

Where does the time go? This week has flown by and for that I am thankful! Ana is doing great! Prayers were answered and things look great. I know everyone won't understand what that means, but Ana is at an age where I have to carefully choose how things are shared with everyone... for her sake and her privacy. Just know that God answered yours and our prayers because He knows all and that is all that really matters! Oh, and yes, that means NO SURGERY!!! Yay!!! We are super happy about that!!! Again, thank you so much for your support and prayers!!! We look forward to driving home tomorrow. Please pray for safe travels!

Some great friends took us out for dinner!

We got to visit family a couple of hours north of Columbus!

Hanging out with Ronald at his house!

Sage trying out the RMH slide!

Ana trying out the swing at RMH!

Ana had her hair cut in the RMH spa!