Just Another Adventure

We are not only on an adventure, but my legs are sore from all of the ups and downs, lol.  Sometimes if doesn't feel like we are climbing hills, but instead mountains.  So my last post explained our continued concern with Macy's weight.  We were able to get into GI quickly, and saw them last week.  Our appointment was interesting, with all of us knowing that Macy is tiny, has tiny people on both sides of the family, and is just meant to be small.  However, she is super tiny.  Tinier than I was at her age, tinier than my mom was at the age, and any other small family members.  We also all know that Macy has numerous health conditions and has battled illnesses and surgeries for almost 11 years.  It's so hard to say that there is just one thing causing it.

So the plan when we left there last week was to continue nutritional drinks.  The dietician offered some other suggestions of similar drinks that would add more calories.  We still have to order them online, and they are still costly.  We are continuing with her eating plan of 3 snacks a day, and 3 meals a day.  She also started Macy on a medication that is supposed to increase her appetite.  We also headed to the lab for more blood tests.  We did all of those, and decided to focus on the next few days of Christmas, and put the medical stuff on the shelf for a few days.   

We had a wonderful Christmas!!!!  We did all of our very special traditions with the girls, and had the most magical night on Christmas Eve and magical morning Christmas morning.  We are truly blessed!  We spent a lot of time with family, and the kids absorbed every moment of all of the love and attention from everyone.  The day after Christmas we spent the afternoon visiting with some great friends, and just catching up.  It was a very enjoyable weekend!

So after all of the excitement of the holiday, it finally dawned on me to sit down and check on her lab results.  Riley has an online portal to check test results, upcoming appointments, etc.  That is when I knew it.  I knew what was aiding in making Macy so tiny.  I knew what it was that caused her be so slim, after eating very similar foods and similar amounts as McKenna does.  How is McKenna growing and Macy not?  Well, after seeing those results, doing some research of my own, and then touching base with the doctor's office first thing the next morning, we had some answers. 

Macy has Celiac Disease.  "Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. It affects 1 in 100 people."  Gluten is a mix of proteins found in wheat, as well as rye, barley, and oats.  It is serious, however treatable with diet.  It will definitely change our lives.  It is not something she will out grow.  She will live with this for her whole life.  The good news again is that it is treatable, and more and more gluten free products keep hitting the markets. 

The doctor called me herself to tell me the news.  The crazy part was that we were at McKenna's 7 year well-check, and I was able to tell our pediatrician the news right then as well.  He, as well as our GI doctor, said this explains a lot.  Some of the symptoms of Celiac Disease are diarrhea, fatigue, weight loss, bloating and anemia, and can lead to serious complications.  In children it can cause problems with growth and development as well.

When I spoke with our GI doctor, we set up a meeting the next day, so she could sit down with us to discuss it, as well as give us the opportunity to sit down with a dietician to discuss Macy's diet.  We were able to do that today. We talked about the effects on the body, the symptoms, and how very important it is for her to stick on the diet.  One "cheat" can cause the symptoms to return as well as the entire stomach lining to become inflamed.  We have decided as a family to transition into a gluten free home.  It will take a little time to transition since we kept some of the "gluten" products to finish them off for the rest of us.  Macy is strictly gluten free from now on.  As we were leaving the hospital, my phone rang.  It was our doctor.  She was able to access some old tests from the old system (Riley transitioned their medical documents this past year).  Macy was tested in 2012 and 2015 for Celiac and was negative.  So she developed it.  Crazy!

We headed to the store following our appointment.  Longest shopping experience ever!!!!!  It is definitely a really big life changer.  The food at home we can manage.....costly....but we can manage it.  The big challenge is going to be dinners out, as well as friend and family get togethers, and family holiday meals. Just like always, with each new diagnosis, Jeremy and I looked at each other and said "we can do this"!  We'll be just fine!

If anyone of you have experience with Celiac Disease, I would love your tips and ideas in order to make this doable for our family.  I hope in no time we'll be experts on this just like her other medical conditions. 

We truly hope this next year brings a little relaxation medically for our family, as well as some positive health changes for Macy.  Happy New Year everyone! 

Yay for Winter Break!

We are doing pretty good in VanVleet Land. I'll start with all of our blessings. It's almost Christmas, and we have been enjoying family time. We just had Christmas at the lake with my family, and it was SO MUCH FUN! My mom outdid herself this year, and planned a Murder Mystery as the family game. The whole family dressed their part! It was hilarious! We had elves, Mr. and Mrs. Claus, a Gingerbread Man, a nutcracker, a snowman, a little drummer boy, and reindeer. I had that moment where I looked around at our family, all of us dressed in costume, talking and acting like Christmas characters, and thought "we are one weird family". I love my family!

Macy has been taking horseback riding lessons since we got the okay from Dr. Superina's office, and she's loving it! She handles the horse pretty well, and is learning so much! I feel so proud watching her! I had no idea that we would all have to know so much about horses. It's our job to get her horse, Raisen, out each lesson. We brush her, get the saddle and pad, put on the saddle and pad, take her out to the arena, and get her bridle. None of us have been brave enough to attempt putting the bridle on her, so Macy's teacher does that for us. We have to go through a big process to put her away as well. We quickly realized that we all needed boots and old clothes when we go out there for lessons. We are a mess when we leave! It's so much fun!

McKenna is knee-deep in basketball season, and Jeremy is coaching. He is doing an amazing job with the kids, and they are all having a blast! This is the first basketball season for McKenna to be on an all girls team, and we switched leagues. We finally transferred her over to our school corporation league, since we previously played for a church league and they don't have a league this year. It's a much longer season running from November to March. We have a break for Christmas, so we are going to enjoy no practices and no games. Christmas break has officially started! The girls and I are off until January 3rd. Jeremy will officially be on vacation at 3:30 p.m. om Thursday the 22nd, and doesn't go back until January 3rd! Woohoo! We are looking forward to family time!!!! I've been asked a few times what we are planning on doing during this time off, and I have responded each time with "NOTHING"! Jammies days are in our future! We need this break!

Another question I often get is "How is Macy?" Lately, that is a question that I have to answer, "she's okay". I have been concerned since August about her weight gain. She is not gaining any weight. I've brought it to the attention of a few of her specialists, and the typical response is that the weight will come, that her body is focused on catching up in height right now, and the weight will come. It is true that she is growing in height. She is up to 4 feet, and is growing at the rate of 2" per year right now. That is a faster rate than most kids her age. Since we are seeing height growth, she appears to be stretching out, therefore looks much, much thinner. Thankfully she has not lost any weight, but she just isn't gaining any. The stares are awful! It's typically strangers, who stare, and I know they are thinking about how thin she looks. They are judging her, judging me, and have absolutely no idea what this little girl has been through, and how hard we focus on total health for her. They have no idea that I don't sleep at night worrying about her. They have no idea..... And it brings all my concerns to the surface when other people comment about her thinness. Just because I don't talk about our struggles, doesn't mean I am ignoring them. The struggles overwhelm me, and I have a clear focus just like always to help Macy be the healthiest she can be.

  Which leads me into our endocrinologist appointment last week. We tested her thyroid again. The strangest thing about this is that she has been living in a high range with her thyroid, which means it is slightly underactive. Looking at her, that makes no sense. We are not treating it since it is only slightly elevated. I felt a little crushed, I just want some answers. So our endo asked me about my concerns. Of course her weight was at the top of my list. After a long conversation about which specialist leads the management of weight, I explained that no one really does. All of them touch at the subject, but I truly feel I have no support in this area. She said GI should be handling this, and that she wants us to go back, and demand a plan. In GIs defense, they came into the game late. We didn't start back with them regularly until we decided it was time to fix her liver. We talked briefly about a time frame in which Macy actually seemed to be gaining. It was back a few years ago when we had her drinking an elemental drink as her nutritional drink. This elemental drink is Peptamen Junior. From the pharmacy, this is the drink that costs over $200 per case, that insurance refuses to cover. They refuse to cover it because she takes it orally. If she was receiving it in a G tube, they would cover it. Anyway, after drinking it for months, we stopped because it was costing us an arm and a leg, and our nutritionist thought we could give something else a shot. I think everyone also though the liver surgery would help her start to gain. So, we are giving the Peptamen a shot again. I have ordered two cases, and we are back on it twice a day. I want to give it a go again for 1 month at least and see if we get any results. We will also be seeing GI tomorrow!

 Please pray for some ideas! We head back to Chicago in January, and we are praying for good scans. We are praying for adequate blood flow through her "portal vein" and that Dr. Superina tells us that she can stop the Coumadin. Pray for all of these things!

Merry Christmas from our family to yours!!!!

  

A Mix of Emotions

We sure have had a whirlwind of the last few days. We headed on Thursday morning to Chicago. We checked in at the Ronald McDonald House, and then decided to go have a little bit of fun. We headed for the afternoon to The Field Museum, and finished our evening up with dinner at The Rainforest Cafe. The weather in Chicago was perfect, and we were happy about that since we typically walk everywhere.

We got up early on Friday morning to head to the hospital. We went first for labs. They checked her INR, ammonia, and did a CBC. After labs, we went straight to ultrasound, and then on to our appointment with Dr. Superina. We waited for over an hour to see him, and were there for a total of 2 hours.  So....we have good news and not so good news.  I will not call it bad news, because it is what it is. I just can't let myself see things as a negative, I choose to see them as a stepping stone toward something good.

So good news first....Macy has blood flow to her liver. This we knew already after surgery, but it is clearly visible on an ultrasound now, and it is decent flow. He reminded us though that her portal vein was thread-like, and still may not be normal. It takes time for the vein to grow in size to accommodate the amount of "normal" flow.  Due to that, he does not want to take her off of the Coumdain, and wants her to remain on it for at least 3 more months. Our poor, sweet girl had tears welling in her eyes. She quickly calmed herself. I asked her after we left the room about how she feels about the news. She said "well, I almost started crying. Then I told myself that my health is more important than activities." Her response almost made me cry.

We will return for another visit in 3 months. At that time we will repeat labs, have a CT scan, and see him again. We will see what things look like at that point. So until then we will remain on the Coumadin, with limited activities, and frequent lab draws.

Now the more not so good news. Macy might, again MIGHT, need another surgery. I am praying this does not happen. It was not in the plans, and I like to stick to the plans! So in short, sometimes the portal vein never grows to the adequate size, yet the portal veins inside the liver do, therefore an intervention needs to happen.  This intervention is called the Rex Shunt. He would take a vein, most likely her jugular vein and place it to shunt the blood to her liver since its size is comparable to the normal portal vein. Why didn't he just do that in the first place? Well, the portal veins inside her liver were tiny too because the liver never had blood flow before. It would be a big surgery again, but she would only be asleep for the surgery, in ICU for 1-2 days, and on the peds floor for 5-6 days. Again, we are praying this never has to take place.

They are currently watching her ammonia levels closely. They were very high (up to 140) prior to surgery, and was 39 when we left the hospital. Last two results were 54 and 60, but those were both taken when she was sick and on antibiotics. That could be the cause, but regardless we are checking them again with her INR labs in 2 weeks. We are waiting to hear back about what to do about the 2 teeth extractions she needs in order to make room in her mouth for her braces, and how they feel about us going to Universal Studios next month.

So all in all, nothing awful, but I feel as if we are still status quo....just floating along. I really felt like we'd walk in there and he would say, "things look awesome, let's take her off the Coumadin, see you back in 6 months". Not the case....but shoot for the gold right folks!?!?!?   Mixed emotions, that's for sure. Please pray for 2 main things for us right now. We need prayers for no events for Macy while we remain on the Coumadin. We also need prayers for some weight gain. She is growing in height, but her weight is not changing. Many of our specialists feels that height is the body's focus, and that weight will come. I want some weight now though to help when we get those cruddy winter illnesses.

We didn't let a little not so good news get us down. After our appointment we headed to Millenium Park. It was so cute! The girls couldn't believe the playground areas. We walked along the river, and headed to The Cheesecake Factory for dinner, topped off the family game night. Today we packed up, and left Chicago for what Jeremy likes to call God's Country....West Lafayette. We took the girls to their first Purdue football game. They loved it! Saturday night was spent in a hotel, swimming and playing Skip Bo. The girls and I have 1 more week of fall break, and we can't wait for a day at home in our pajamas, and celebrating Jeremy's 37th birthday!

I am going to leave you with this very dear public service announcement....please get your flu shot! It helps protect kiddos like Macy, and can make a big difference in her overall health this winter. We thank you in advance!

Heading Back!

We've been doing pretty good here!  Working, sports, and other activities make it about impossible for me to update often.  Sorry for that.  Overall we having been doing pretty good.  I am still very thankful for the surgery, but will be extremely glad to be off of the Coumadin....hopefully soon. 

Macy started with a fever last Monday.  Due to the Coumadin, I am only able to give her Tylenol.  Well, Tylenol just isn't Ibuprofen, and it didn't help at all.  After hanging out in the 103* range for way too long, I broke down and took her to the doctor.  Her throat looked pretty crappy, and she also had some sinus issues going on.  Our doctor decided to start her on an antibiotic.  We were very thankful for it, and she ended up hovering around 99 the next day, and was back to school on Thursday.  It was a rough week considering I had parent teacher conferences, and wasn't home until 7:30-8:00 on Wednesday and Thursday night.  I am so thankful for my amazing husband that can handle so many things at home! 

We had to take Macy in for a lab check for her INR level on Thursday.  I was caught off guard when they called me on Friday to tell me that her INR was way too high.  Her range for therapeutic level should be between 2-3, and she was 4.79.  Scary!  We were told to hold the Coumadin that night, and restart at a lower dose after that.  We were also reminded about what to look for if she were to start having complications due to the high INR level.  Definitely not what we wanted to be dealing with.  Her INR probably became elevated due to multiple causes such as her high fever, antibiotics, and her diet being off due to being sick. 

We had a rough weekend that resulted in calling our pediatrician with concerns, as well as the Hematologist on call at Luries on Saturday night and Sunday morning.  We headed back to Riley first thing this morning for lab work.  Her INR is down to 1.5 which is too low.  I am just thankful that it's not too high.  That is too scary and stressful!  We are now on a close watch due to these issues and have to head back on Wednesday for another blood draw, and then head to Chicago on Friday.

At our Friday appointment, we will have labs, more imaging, and a check up with Dr. Superina.  We are praying specifically for a few things.  1.  We are praying for the imaging to show continued adequate blood flow through Macy's designated "portal vein" and into her liver.  2.  We are praying for Dr. Superina to allow us to stop taking the Coumadin.  I am hoping that maybe we can switch to a daily aspirin.  I honestly don't even know if that is an option, but I am praying for it!

The girls are doing great!  We are having great school years so far, and I am so proud of both girls.  They both have such positive behavior reports at school, and are very hard working students.  McKenna just finished up her soccer season, and was chosen to play in an All-Star Soccer Tournament in a couple of weeks.  She starts basketball next month, and will do that through March.  Macy is back in the swing of Girl Scouts, and we have been attending many outings.  It is such a perfect activity for her.  She is experiencing so many things.  She looks forward to starting back up gymnastics as soon as she gets to stop Coumadin.  We have also discussed starting something different for her such as horseback riding.  Golf will start back up in spring. 

Prayers are appreciated for our upcoming appointment in Chicago!  I will try to update as soon as I can about the outcome.  Thanks for checking up on us!

How Is She?

How is she?  That's the big question that everyone is asking!  I am so sorry that I have failed to update on a regular basis, but life gets crazy when school starts.  I am probably my busiest the first month and the last month of school.  We have been back in school since July 27th.  Macy is in 5th grade, and McKenna is in 1st grade.  They both have fabulous teachers this year, and we are excited about the school year!  Getting back into the swing of things has proven to be a little bit more of a challenge this year following surgery.  We are dealing with Macy's school restrictions, and home restrictions due to being on Coumadin.  We are busy with lab draws at Riley, and soccer for McKenna.  Insurance is driving us crazy by sending us bills that were incorrectly coded, therefore they are trying to charge us thousands of dollars.  I like to refer to our family as "The Crazies" instead of "The VanVleets".

So Macy's limitations at school have to do with PE class and recess.  She feels a little left out during both of those times, but we can't take our chances.  It's not like she is on a small dose of Coumadin, she is dosed at a therapeutic level, and her INR goal is to be between 2-3.  Most recently she was running 2.9. If her next INR is in range, they will allow us to go for 1 month until our next check.  We go back in October to see Dr. Superina.  We will have some labs and testing done at that appointment.  Originally they wanted her to stay on the Coumadin until November, but we are praying all tests are good and he allows us to stop in October.

Also when starting back to school, we noticed that Macy lost some weight.  It was about 2 lbs.  2lbs may not seem like much to most people, but when your 10 year old weighs 47 lbs, 2 lbs is a big deal.  This worried me, and has worried me for weeks now.  I can't seem to get her to gain any weight.  I honestly thought that this surgery would help, and I am praying that the body is still trying to figure out the changes.  I pray the weight will come! Please pray for that as well. Right when I saw the weight loss, and I decided to start packing her lunch.  This helps with eat time, as well as food choices that Macy enjoys. 

Two weeks ago we went to a visit with my "go to guy", Dr. Hainline (our metabolism doctor).  Her weight was a big concern for me.  Under the recommendation of our nutritionist, we have also made some changes concerning her diet.  She now gets 3 snacks, and 3 meals a day.  We often follow this plan in the summer, but when school rolls around, it is difficult to follow this plan.  Well, we don't have a choice now.  Macy gets a morning snack during class now, and we have been so blessed that her teacher is completely understanding and helpful with Macy's needs.  After school once she arrives back in my classroom, she stops by the staff fridge and grabs a fruit/veggie smoothie for her afternoon snack.  It has been an adjustment, but we are happy that we are making it work.

When seeing Dr. Hainline, he decided he wanted to run more labs on Macy.  He was not only checking some of his typical things, but he is also exploring the idea that Macy has a malabsorption issue going on.  We explored this idea a few years ago, but insurance wouldn't cover the drinks she needed.  From the pharmacy, her drinks were $230 per case (24 cans).  She was drinking 3 cans a day, so a case only lasts 8 days.  We were buying them at a discounted rate, but it was still costing us hundreds of dollars per month.  I felt like she was gaining weight on them, but we stopped when endocrinology suggested an alternative.  I am just waiting for him to want to start us on those again.  However, she had her labs done last Wednesday, and we haven't heard anything back about them yet.

I honestly don't know sometimes what to do with Macy, and I constantly worry that I am making the wrong choices for her.  I also sometimes feel that we have too many hands in the pot, and no one really knows her well enough to see her as a whole.  I can see her as a whole, but I have no medical training to brainstorm ideas about what she truly needs.  It's worrisome and frustrating all in one.

Anyway, we are doing pretty good.  We have one more weekend at the lake house, and then it truly starts to feel like fall.  I can't wait for fall!  We have a lot of fun stuff coming up in fall.  Our trip to Chicago will try to include some fun in the city, as well as a detour on the way home to Purdue University for a college football game.  My cousin is getting married in November in California.  Both girls are in the wedding, and beyond excited!  We will be spending an entire week there.  We can't wait to go to Harry Potter 'sWorld at Universal Studios, and Hollywood! Thanks for all your continued prayers!  We have a fellow Abernethy friend in Chicago now, recovering from her surgery, and one heading in October.  So please pray for these families as well. 

Macy's Miracle Surgery

I have always loved making videos and picture albums.  Most of the time it is to preserve memories.  Sometimes it's to deal with emotions that I am having about certain events and obstacles in our lives.  I made a video of Macy's surgery.  It started out as a video to document her journey, but now I can see that it has become something that means so much more than that to Macy.  She LOVES to watch it!  I am not sure if it's a reminder of how far she has come, if it helps to reassure her of her bravery, or if it means even more than that for her.  No matter what, I am so happy I made it for her! 

Many of you have been on this journey with us since day 1, and during those days in Chicago I chose not to share any images of Macy.  Instead, I decided to journal and share the story.  Macy has decided she wants her story to be shared through the video.  I know her story and her life will continue to inspire many people. 

We are so proud of you Macy! Just a warning, some of these images show Macy with lots of tubes and machines.  If that is hard for you to see, you may not want to watch it.  I would also be very cautious to show any children. 

Click Here for Macy's Video

Well, it's been over a month.....

Well, it's been over a month since we had surgery, and we are still beyond ecstatic to be home and for Macy's recovery!

It's been quite a while since we have updated, so let me try to catch you all up.

We are still being followed very closely by Dr. Superina's office. At first we were traveling to Riley every 2-3 days for labs, and poor Macy had to endure a stick each time. I can't believe how great she does at them though, just hops up in the chair and holds her arm up. Her Coumadin doses have changed a few times to accommodate her results, but she has mainly remained at 5 mg tablets. We moved from every 2-3 days to 5 days, and then to once a week. Her labs have been consistently in the therapeutic range 200-300 about 3 times now. We had more labs today. She is again in the correct range. We will repeat labs next week, and if she is still consistently in range then we get to move to having labs once every 2 weeks! Yay!

We have been to 2 doctor's appointments at Riley in the last few weeks as well. First we saw Endocrinology. It was a great appointment. Macy has grown, and our doctor is super excited about her growth, and expects to see even better growth now that her liver is repaired. Due to this growth, she also increased Macy's dosage of her growth hormone. She wants to keep her on it, despite her liver repair, and see how she does for a while. We go back in 6 months.

Today, we saw GI. This is the doctor that gave us the referral to see Dr. Superina, so this was a follow-up post surgery. She was very excited with Macy's recovery from surgery. In her words, reading the surgical notes were "intriguing". Macy has had two stitches sticking out, so I was concerned about that. When she examined the wound, one of the stitches had already worked itself out, and the other one was still there, but she didn't want to mess with it, and wants us to let it works it way out. She thought the incision looked great, and is healing very well. She was beyond excited about Macy's ammonia levels dropping all the way from 122 to 35 post surgery, and said that at one point they had reached all the way up to 142. She lifted a few restrictions on Macy, but said she still needs to "take it easy" for another month. She ran some more labs in conjunction with our Coumadin check today, so I should be hearing about those soon. In Chicago, Macy was started on a med called Ranitidine for her stomach pain following surgery, and we are now going to try to reduce it to once a day instead of two. If she does well with that change, we can stop the med soon. Due to being on the Coumadin, Macy will not be able to participate in PE until she is finished with the meds in November. Macy is pretty bummed about that, but understands it is necessary.

We've been trying to stay busy, yet take it slowly. Macy is having a hard time limiting herself when she gets around other kids. As much as I want her to see and play with others, it makes for a hard evening later when she complains about pains. We try to go to the neighborhood pool when no one else is around to avoid crowding, and the change of her getting hit or kicked in the pool. We kind of feel like hermits a little bit. We've been playing lots of games, running lots of errands, and finding as many "low key" activities as we can to keep us busy. McKenna is doing pretty good with all of this. The poor girl gets dragged to Riley a lot, and has been limited some due to Macy's limitations. She's really been a trooper through it all as well, and I try to remind her as often as I can how proud I am of her being such a great sister! They are having a sleepover tonight in the spare bedroom, and were so cute when I checked on them. So I'll leave you with this cute picture of my cuties!

Happy to be Home

We are just beyond happy to be home! I keep thinking that in reality we still had over a week still in Chicago, and have now been home for almost 1 week already. Overall we have had a good week. Labs went well on Monday. Her INR was 2, so we kept her on the 5 mg tablets of Coumadin, and will retest on Friday morning. It sounds like we are getting closer to weekly tests. Yay for that!

Being home, taking it easy has been really hard for our family. We are so active, and so busy typically. We' ve been doing a lot of crafts, playing games , and trying to change our scenery between indoors and outdoors as much as we can.  Macy is doing a good job at limiting herself, however she had made comments about not being able to do anything.

We had a very rough day yesterday. Poor Macy woke up with awful stomach pains that she stated were at a 10. She wouldn't eat breakfast, and rested on the couch in a ball. She kept feeling like she had to go to the bathroom, but nothing would come out. I was honestly very concerned since we haven't had those pains since Chicago. I thought we would possibly need to take her to be seen by someone. I first put a call into Dr. Superina's office, and then headed to CVS to get seem Miralax. I was thinking it might be constipation. When the office returned my call, they gave me the okay for the Miralax. It can interfere with Coumadin if used regularly, but one dose shouldn't hurt. Our NP said that we don't want to discount pains like this, especially with Macy for a few main reasons. Macy had 2 major abdomen surgeries , and we aren't that far out, and Macy has a very high pain tolerance, so it must really hurt for her to complain. She said if she develops a fever, worsening pains that do not go away, blood in her stools, or vomitting, that she needs to be seen. She stated again how amazed the entire office is with Macy. I have always known how amazing she is, but it is so great to hear it from others as well.

Through all for this, Macy keeps trying to be the tough kid. She wouldn't be who she is, or where she is if she didn't have that mentality.  However, we have had to have serious discussions about the fact that it is okay to have pain, and tell us she has pain. Even through pain, she will often tell us that she is fine. Yesterday morning, the pain was so severe the couldn't hide it though.  As the day went on, she tried to tell me a few times that she was fine, and I could clearly see that she wasn't. I explained to her that she doesn't always have to be tough, she doesn't have to always smile through the pain....it's okay to admit that something hurts! I need to know when something hurts! Bless her brave, sweet heart!

So happily, the Miralax seemed to work. We were even able to take the girls out to dinner. When we came home Jeremy had to put the sprinklers out to water the lawn, and the girls asked if they could play in them. I said they could "walk" through them, but no running. They out their swimsuits on, and McKenna had a few good runs through the sprinkler, but Macy decided against it, and just sat fin the bench wrapped in her towel. It broke my heart a little, but I am glad she didn't try to push herself into doing it.
In other happy news, Macy is back up to her pre-surgery weight. She is still super tiny, so I am giving her nutritional shakes 3 times a day still. We also started her back on her growth hormone injections. We are praying for some height and weight gain over the summer! Also please continue to pray for our friends who still have their little guy in the ICU. Fortunately he was extubated yesterday, and it doing great! Prayers for continued progress!

A Relaxing Weekend

We all the most amazing sleep on Friday night! Macy only woke up once, and that was to use the restroom. I finally had to wake the whole family around 9:30 a.m. Anyone who knows us well, knows we are early risers, so 9:30 is very unusual. We spent the weekend relaxing by playing games, doing crafts, and watching movies. We ventured out today for a car wash, and a wagon ride at the park. It was nice to get some fresh air.

Macy is doing well, but tires easily. I didn't make her take a rest during the day this weekend, but I probably should have. She was completely worn out by 7:30 to tonight. She started crying and complaining of belly pain. She took a shower and asked to go to bed. She seems to be sleeping soundly now, so I pray we have a good night.

I had to remove her steri strips from her wound. Her wound is big, so it took a while, and was kind of painful for her. Her scar looks pretty good though, and it will just keep getting better! She was bothered by her shirt rubbing against it the rest of the day, so I had her put a tight tank on under her t-shirt, and that seemed to help.

We head to Riley tomorrow for lab work to check her Coumadin. The results will determine her dosage for the next few days, and when we go back for more labs. It breaks my heart that she has to have labs so frequently, but we are truly blessed with a tough little girl who does it with no fear.

Jeremy will go back to work again tomorrow, and the girls and I will continue to take it easy as Macy continues to heal. Please continue to pray for our Abernethy friends as their little guy Elijah is still in the ICU.

I am working on a video of pictures from our journey in Chicago. I will warn you, some of the pics are hard to look at, so I will put a warning out when I post it.

Have a great week everyone!

Day 17: Life at RMH

We had our triple appointment today. Macy wasn't allowed to eat prior to her ultrasound, so that was torture for her. It is also the last thing we want for someone who has lost so much weight. Lab work went well, as well as the ultrasound. Then came the meeting with the main man!

Her labs were all good. One surprising lab for us to see was her ammonia level.  Her ammonia levels prior to surgery were in the 120s. Last week they had already dropped to 65, and today it was only 37! This is amazing!  Her ultrasound looked good as well. He said she had good blood flow in her liver.  He explained that there are three types of kiddos following this surgery. 1. These kids end of having a completely normal venous system, in which all blood flows properly through the portal vein.  2. These kids have the blood flow, but the route is still somewhat abnormal.  However, their bodies adjust. 3. These kids develop portal hypertension, and need some revision work.   He said he can't predict which one Macy will be, and that only time will tell. Let's pray for kid 1 or  kid 2.

He also went on to say that her INR (Coumadin level) dropped, and they believe it was when they had us hold the Coumadin on Tuesday night. So we are back to giving her the 5mg tablets over the weekend.  Despite all of this, he thinks we can go home! YES FOLKS YOU HEARD ME RIGHT! We can go home. They can't get over how well she is doing, and how far she has come so quickly. Welcome to Macy's World...nothing will stop her!

They want to do more labs on Monday, so we will do that at Riley.  We will probably do 1-2 more days of labs next week as well, and will continue that until we start getting her Coumadin levels continually at a therapeutic level.  We will follow-up with GI at home, Dr. Molleston, in July. Are you ready for another shocker...he won't see us back for 3 months!!!!!!!!

We are beyond shocked that we have been in Chicago for 18 days (17 surgical/recovery) , Macy has faced 2 very complex abdominal surgeries, 10 days in the ICU, 4 days on the floor, and 3 days at the RMH, and we get to leave. It was supposed to be 30 days, most kids take 30 days. Macy took 17 days! Go Macy!

She is by no means back to normal. She is still sore, weak, and tires easily. We are asking for no visitors as we adjust to our first few days at home. She doesn't know how to limit herself, so we want to minimize the temptation for a few more days. We are looking forward to more healing at home! I will continue to post about how she is doing, but I can't promise it will be every day.

Thank you again for your continued prayers for Macy and our family. The outpouring of love and support means the world to us! We are continually blessed by amazing family and friends!

Day 16: Life at RMH

Today was a good day!  The best part was not being at the hospital! We needed that break. Macy had stomach pain about 3 times today, and it was never over a 5 on our pain scale. We also had a great night last night sleeping. She slept through most of the night, and only woke up once for a very short time. I pray that the medicine was what she needed.

We ventured out twice today with our newfound friend, the wheelchair. We are so thankful that the RMH has one of these, otherwise we wouldn't be able to get out at all.  Our first outing was to a few stores, and we let the girls pick out a few new outfits.  Our second outing was to The Navy Pier. We just relaxed by the water while the girls ate ice cream, and mom and I had a drink. It was so relaxing!

At dinner tonight, we got a little glimpse of our usual happy Macy. She was happy and joking, and I think it was the best she has felt in over 2 weeks. She got even happier though when she got to take a shower. It was her first shower since May 17th. She stood under that water forever, when I came back in to check on her, she was singing away! It made me so happy to see her so happy!

We head back to the hospital in the morning for lab work, an ultrasound, and an appointment with Dr. Superina. I am anxious to hear what he has to say about everything. Also, my mom leaves tomorrow, and Jeremy comes back. My mom has been so amazing through all of this. She jumps in with both feet to help in any way she can. Jeremy and I could have NEVER made it through this without her. We are so unbelievably blessed to have her. Thank you Mom.....I love you more than you'll ever know!

Thanks for all of you continued prayers! Please also pray for our Abernethy buddies who are here with us. Their little guy had his 2nd surgery yesterday, and will be waking up soon. The waking up part and getting extubated was so hard for us. Please pray for them!

Day 15: Life at RMH

It feels really good to be out of the hospital! We had a very rough night however. We just can't help Macy's ongoing stomach pains. She woke up around 1:00 am in pure pain, and was up until 5 a.m. It was awful. I talked with our nurse today, and she prescribed Macy an antacid, so we will see how it works tonight. She said it can be common for kids to need medicine like this following surgery. She also said that it could be a combination of that at surgery pain from having such major abdominal surgery. At this point, this is the biggest thing bothering Macy.

We headed back to the hospital for a lab draw today to check her Coumadin level. Coumadin is the medicine she is now taking as an anticoagulation medication. It thins her blood so that she doesn't develop clots. She will be on it for 6 months. In the beginning, we will do lab draws every few days, then weekly, and the every other week. This medication can be affected by diet, so we have a big list of foods we have to limit. Macy is also restricted for any contact sports/activities due to the ability to bleed easily. Therefore, no gymnastics for 6 months, and she may miss out on certain days in PE class. She is bummed!

I was a little worried about how she would handle the lab draw since she was so over the hospital and being poked and prodded. There was no need to worry...she walked right in, sat down, and stuck her arm out. She took it like a champ!

After lunch and a nap, we headed out for a little fresh air. Fortunately, the RMH had a wheelchair we could borrow for Macy. She is walking, and getting stronger, but she can only go very short distances.   We walked down Michigan Ave., and over the bridge. It was so nice to get out!  It was very interesting though, pushing my child in a wheel chair. I got to see a different perspective today. There were 4 types of people. 1. Makes eye contact, looks at you and your child, and smiles. 2. Looks at your child, and stares. Doesn't even realize you are watching them stare. 3. Notices you and you child, but looks away.  4. Doesn't even notice you or your child. Cuts you off crossing the street, backs up into your child, etc. It was very interesting. As a matter of fact, we went into the chocolate shop. A worker approached us and said, "would you like a sample?" She handed one to me, one to my mom, and one to McKenna, but completely overlooked Macy. It was awful!

So tomorrow is going to be a great day for one main reason....it will be the first day since May 16th that we won't be at the hospital! We are hoping to take the wheelchair out for another small adventure.

Please pray that we can get this stomach pain under control for Macy. I am hoping for a restful night for her, she needs it!

Day 14: Discharge Day

Well, we have been in Chicago for 2 weeks now, and are entering our 3rd week.....and we got discharged today! I can't believe we are actually out of the hospital. Macy is purely amazing!

We had one of the worst nights last night, and I am actually shocked that they let us go today. Macy had the worst pains last night, and could not sleep at all. She was in pain until about 2 a.m. when she finally started sleeping. Then at the hospital, your morning starts at 6 a.m. whether you like it or not.

During the morning, the decision was made to take Macy off of the Heparin, so that was the last tube tying us to an IV pole. We also took a field trip to CT scan, and had one of those done. Macy does so good at following the directions, and staying still.

Most of our afternoon was spent waiting. It started to become ridiculous. There comes a time when you are at the hospital and you don't need to be there anymore.  That was us today! Unfortunately our surgeon was in surgery at a different hospital. I had to turn into a barracuda, and start stalking the nurses and peds surgery staff in order to get discharged today. Macy, emotionally and mentally needed to leave so bad!

We go back tomorrow for more labs, and return Friday for a triple appointment (more labs, ultrasound, and physician visit).  They continue to be shocked with Macy. Today our doctor's nurse practiconer came to see Macy for the first time. She said that Macy was doing better than 90% of the people that have surgery like this. We are so proud!

We still have a lot of healing to do outside the walls of the hospital. Macy is still struggling with her balance, and I notice a lot of stiffness in her body when she moves, particularly her feet. She also lost weight, and it is very easy to see in her face, wrists, and, legs. Macy has always been skinny, but she is SKINNY now.  I don't want to push her belly, so we are taking it slow, and I have faith the weight will come back on and then some!

Please continue to pray for Macy's full recovery!

Day 13: Post Op #2

I finally started to see "Macy" today. She smiled, she laughed, and she talked my ear off. It was so great! I think that a lot of the medications are finally starting to get out of her system.

First thing this morning her nurse unhooked her from her monitors. It gave us a lot of freedom. Our team of docs came in, and said they wanted to give the Coumadin levels 1 more night before turning off the Heparin, so we are stuck with the Heparin for another day, so that meant rolling around that stinking IV pole. Hey...I will not complain about that, I am just happy to have single IV pole versus the double we had earlier this week. Also, we made it through the night with no oxygen, so we are good to go there.

Tomorrow we will go for a CT scan to check liver blood flow. We don't know what time yet. We should also get to discontinue the Heparin, and we were fortunate not to start up the TPN again. With all that said, if all goes well tomorrow, we should be able to get out of this joint!

Macy is continuing to gain back strength. She walked from our room, to the elevators, down to the 12 floor, and then to the Family Life Center.  She held onto and pushed her IV pole, but it was a long way. She is now able to walk unassisted for short distances, but I stay close because her balance is not there yet.

Her pain is coming and going. Most of her pain seems to be related to her stomach and bowels versus her incision. I think things are still trying to wake up and normalize. She is eating better today, and I know it will continue to get better when we finally get out of here.

My in-laws left today, and my mom arrived. She sent Jeremy and I out to get a long overdue dinner together, so we did. We went to the Cheesecake Factory. When our food arrived, we ordered to-go food for mom and the girls. After some conversation, I explained that the food was for our family at the children's hospital. When he brought the to-go food to our table, he had put in  untensils, as well as a piece of cheesecake on the house. It was so sweet! Being the emotional people we have been lately, our eyes filled with tears. There is still so much goodness and compassion in this world, and tonight was a great example of that!

I will update "when" we get discharged tomorrow... not "if"! Prayers for a great day are appreciated!

Day 12: Post Op #2

I am sitting here next to Macy's bed, and McKenna is napping at my feet. I have both of my girls together with me, and it feels so good! I am having an emotional weekend. There are times I want to cry due to pure happiness and joy for all of the things Macy is fighting so hard to accomplish, and there are times when things seem so hard to handle, and I want to lose it as well. I just want to get out of here.....mainly for Macy's sake.  She is so done with being poked and prodded, and staring at hospital walls.

Each day is better, and others looking in, like doctors, nurses, respiratory therapist, and physical therapists keep commenting about the amazing progress she has made just in a days time. It helps to remind me how far this little girl keeps going in such a short time.  It's just hard when you watch and see the pain and struggle Macy is going throughout to accomplish all the goals she keeps setting for herself.  She is the most determined young lady ever, and is out to prove to everyone how much she truly has inside that tiny little body.

On Thursday she sat up for the first time, she could not hold herself up. She was so dizzy. On Friday she sat in a chair. She did not sit long, and was in so much pain. On Saturday, she sat in a chair, and put her feet on the ground for the first time taking assisted steps. Today she walked to the end of the hallway pushing her own IV pole. It was slow, and she needed the pole support the whole time, but she did it!

We also took her down to the 12th floor family center to see the therapy dogs. She wanted to go down again this afternoon, so we did. She loved getting out of the room. We even propped her up in the window in our room so that she could see the Chicago view.  She loved it!

We had to back off on her respiratory therapy a little today. She was getting a percussive type therapy through a medineb, and it was causing too much coughing and mucus. It actually made her vomit her lunch, which is the last thing we want to do. She is eating food with more substance, and it sounds like tomorrow might be her last day with TPN. It also might be her last day with the IV blood thinner, since they are changing us slowly to oral meds. If that is the case she will not need any more IVs. She also did so good today breathing wise, that they removed the oxygen to see how she would handle it, and we have been off since noon.  We are praying she continues to tolerate it.

It looks like our CT scan will most likely be tomorrow. We are praying with all we have that we are IV free tomorrow, that we have our CT scan imaging done, and that Macy continues to eat more and more. I see a discharge to the Ronald McDonald house in our near future! Please pray for that!

I also need to give a huge thanks to Mamaw and Papaw VanVleet for coming this weekend and lifting all of our spirits! We all needed it! It has been a healing weekend in so many ways, and they have helped out so much with McKenna, allowing Macy time to take breaks and rest. Thanks again!

Day 11: Post Op #2

We had a very eventful day today. It was eventful in many good ways. We were very sad to see Grandma Kelli go home, because she has been with either McKenna or me and Macy for the last 12 days. She has been so amazingly helpful! We are so blessed to have her!

McKenna and I started our day with a walk in the city to the mall. This was the longest and farthest I had been away from the hospital since we got here, and only the 5th time to leave the doors.  We enjoyed shopping at Claire's before heading back to the hospital.

Then our day got even more exciting when Mamaw and Papaw came for the weekend! The girls were beyond excited, and it was so nice to take our minds off of hospital things to enjoy family.

Macy is continuing to make process, but I had no idea when we started this journey just how difficult her recovery would be. Due to being paralyzed for 5 days, 2 surgeries, lots of pain and sedation drugs, and laying in bed following surgery, she had a very overwhelming weakness in her body.  Macy is now able to roll from side to side in bed. She was able to sit for a short period of time unassisted in bed, and today she put her feet on the ground and walked for the first time...completely assisted though. It hurt her so bad, and broke my heart. To think that 12 days ago this little girl was running, walking, and jumping, and now can't even walk on her own is so devastating.

She is determined though! After going for our second "walk" today, she told me she did not want me to help her, and tried to let go. I held on with one hand, and she was working very hard to support herself. I got her in her bed, and then walked out of the room and lost it.  I just can't imagine going through what she is going through...as a 10 year old. She amazes me with the fight and determination she has. She could very well say "I can't do this" or "this is too hard", but not once has a word like that come it of her mouth. She runs along the lines of , "watch me!"

She is down to 1 liter of oxygen, and we might be able to get rid of some of her meds tomorrow, mainly her heparin (blood thinner). They switched her over to an oral med called Coumadin. They wait to remove the heparin until you level of Coumadin is correct. They usually check after 3 days, and want the level to be 1.8. Well after 2 days I'd Coumadin, she was at 1.5, so here's hoping to get to 1.8 tomorrow! We also get a break from our TPN (IV nutrition) for 4 hours tomorrow. So we may be able to venture off the floor for a while and take a wheel chair ride downstairs to the family life center. On Sundays they have therapy dogs!

When our family left tonight to go back to the RMH, Macy started crying. She said she wanted to home. I think all of this emotion led her to tighten up, therefore causing incision pain that lasted for about 20 minutes. It was awful. We had to push her pain button twice for meds. I am praying that is all it was and not her stomach. I think we are in a good place food wise after spending most of the day eating broths and jello.
She is sleeping soundly now, let's pray for a quiet restful night!

Day 10: Post Op #2

Today was full of ups and downs. We are having a very difficult time with pain. We still have a lot of pain at her incision, but today has been a lot of pain associated with trying to eat. This morning we tried liquids, and had some minor pain. For lunch and dinner we were allowed to let her try what sounded good. She had major pain following bites of food. She rated it at a 10 on the pain scale , and was brought to tears.  Tears from pain are not common from Macy, so we know it's bad.

First of all, I think we got too aggressive with her desire to eat food.  Also, I feel very strongly that it's  gas pains.  I think her stomach and bowels are just waking up, and are full of gas. It's awful to see her in so much pain though. I worry about weight, but she is still on TPN, however I feel she is skinnier already.

Now on the the ups for today......they weaned her overnight from 12 liters on high flow oxygen, to 3 liters of regular oxygen. Her chest X-ray looked pretty good, and her left lung appears to be open again finally. They moved us to the floor at about 5 pm tonight!  The ICU doctors and nurses were so sad to see Macy go.  They loved her! In other good news, our family of 4 was finally back together after 11 days! Seeing McKenna totally boosted Macy's spirits.

So please pray for her stomach to start accepting food, and stop hurting poor Macy. Also please pray for her physical strength.  She sat in a chair for about 1 hour today, and attempted to stand during physical therapy, but she can hardly stand, and cannot walk. Please pray for this! We are moving in the right direction, but it's a long recovery road!

Day 9: Post Op #2

9 days already?  Haha, who am I kidding, it feels like it's been 109. So I have left the hospital only 3 times since we got here. Each time I went outside and walked around the block. The first time was Sunday,  and then my other walks were yesterday and today. It's a big deal for me to leave, so I am very proud of myself.  I am also taking showers, and I am sure the nurses and doctors greatly appreciate that, and it makes me feel a little normal. Macy got some good sleep last night, and she is already asleep for tonight.

We had a good day today. One doctor looked at me yesterday when I started crying during rounds and said, "she'll be a different kid tomorrow".  She is! During rounds this morning, they made the decision to give her a try back on the high flow nasal cannula. If she did well, great. If she struggled then we would just look at it as a break, and then slowly give and increase breaks.  So at 11:30 a.m. today we took her off the bipap, and switched to the high flow nasal cannula. She has done great on it all day. We are praying this continues! She is still struggling with pain some, but she is learning to press her pain button that administers medication as needed. They have reduced the meds a lot, haven added in some Tylenol to help as well.

She has had a lot of anxiety today, that I think stems from her fear of the pain. Movment has been a big cause of the pain and anxiety. Our physical therapist came by today, did exercises with her, and even helped her sit up on the side of the bed. Macy needed support since her body is so weak from the 5 days of paralytic, and then 4 more of almost no movement in bed.

They have now removed her arterial line, and her ng tube (from nose to stomach). However she was ahead of the game around midnight last night, and pulled it out herself, lol. They of course placed it back in only to have Dr. Superina tell them to take it out tonight.  She also had 1 IV go bad yesterday, so it was removed as well. So we are down to 2 IVs, a central line, and oxygen.

So my big question tonight was, what do we need to do inn order to get out of the ICU? She need to get her central line out, which can't go until we stop our TPN. She can't stop TPN until she is eating, and she can't eat until her bowels wake up and she poops. Which they said is one of the hardest things to accomplish after big surgeries like Macy's. Well folks, she pooped! Bring on the food!

We also have to wean the high flow oxygen to an regular nasal cannula. You can get on a regular one when you are down to 3 liters. Macy is on 10 liters right now. So I have no way to tell when our move will happen, but I pray it's soon.

Also, starting tomorrow we will transition Macy from her IV anticoagulation medication Heparin, to an oral one. This is a med that can be very tricky to get the right dose,many might change often. Unfortunately it requires a lot of lab work. At first it will be daily, and then once we think we have the right dose, we still have to check it weekly.....for 6 months. It totally sucks for Macy!!!!

I know I say this often, but she is amazing! All of the doctors and nurses know it as well, and are so impressed with her. Dr. Superina came in tonight, looked at her and said "you're pretty amazing aren't you?!?!" Yes she is!

Oh and just to make the day even more special, Grandma Kelli went out shopping today, and bought Macy a whole bag of cute hair bows. I did her hair up in a cute bun, and out one of the bows in it. Those little things are helping her feel a little normal.

Also, we are so excited to have a family here with us for our Abernethy support group. I am not happy, that we are all here in the ICU, but our kids are getting a cure we didn't know was possible,and we are here to support each other. There cute little guy had his 1st surgery yesterday, so I know how difficult the road ahead is, please pray for them.  A doctor got tickled when she saw us together since Abernethy Malformation is so rare, and here two families stood together chatting, with our kiddos only rooms apart.  Then Doctor peeked her head in and said, "look, it's an Abernethy convention!" It was too funny!

Anyway, please pray for a great night for Macy, full of rest and healing! Tomorrow she will finally be reunited with her sister, and our family will be together again after 10 long, hard days apart!

Day 8: Post Op #2

It's so hard to say how things are truly going when you are in the ICU, and you live by the moment. You live by the numbers on the lab test, the numbers on the screen, and the current state your child is in. One moment your child seems "okay" and the next moment there is a medical team standing around your child's bed trying to make quick decisions, and your adrenaline is flowing so bad you are literally shaking. That was our yesterday, multiple times, and that is why I did not update until the middle of the night.

Sticking Macy on bipap has been hard for her, but I think it was a great choice. We are in a much better place today thanks to the bipap , medication changes, and her respiratory therapy she is getting. I honestly can't say if they will want to change her off of bipap or not tomorrow. I hope they do, but I know they want to be sure in order to avoid a setback.

Poor Macy keeps asking for water and apple juice. She had been very depressed about today, and I don't blame her. She always gets like this during hospital stays, it's just awful! We called in Child Life to help. She came by to check on her, and tried to just spend some time getting to know her, which was quite the task. First of all, Macy has a gigantic mask covering most of her face, and we can't just take it off because it is helping her breathing. Also, Macy seems to be somewhat confused. She is answering questions weird, as well as saying some weird things. They think it is all of the pain meds she has been on and is still on. We are trying to wean her though, and transition her into non-narcotic pain meds.

Also, today was McKennna's last day of kindergarten, so we now have a 1st grader and a 5th grader in our house! She has enjoyed the last two evenings with her daddy. They went on a date last night, and he took her for a celebration ice cream treat tonight.  They will come up on Friday night to spend the weekend with Macy and I. I can't wait to see my baby again!

Please pray for a good night, respiratory improvement, and a great day tomorrow!

Day 7: Post Op #2

Let me start with the positives, I am thinking positively right now! Macy is extubated, and her labs look good. Another positive is that Dr. Superina came to see me today, and was so excited to show me the images from her venogram in the OR yesterday after surgery. Macy's blood flow to her liver is remarkable! He showed me befores and afters, I felt like crying. It is truly a miracle!

With all that said, we had an extremely rough day. Macy fought the breathing tube all morning, trying to physically pull it out multiple times. She was gagging, and even vomited around the tube. It was awful. After extubation she wasn't holding her oxygen levels well, and we noticed she had a ton of thick mucus that she couldn't cough up. Due to her wound on her abdomen, she is in too much pain to cough, even when we try to coach her through it. So they tried a machine that provided percussion breaths, a cough assist machine, and even cpap. We were just trying to see what might make her breath an little easier. Everything agitated her so bad, so they finally settled on a high flow nasal cannula, with a lot of oxygen.

We were on that all afternoon and evening with numbers all over the place, multiple desats, and she appeared to be struggling worse to breath around midnight after the nurse and I changed her bedding, she desaturated pretty low. We had to call the doctors in, and it was decided to place her on bipap. It is a huge mask that straps around your head and provides constant in and out flow for her. For once today, she is finally comfortable from a number standpoint, however I know she hates it.

I truly believe that with being intubated for 6 days, paralyzed for 5, and with a history of respiratory struggles, that she just needed a transition from the vent, and this bipap will do that for her.

Prayers are appreciated for positive respiratory changes in the next few days.

In Awe...

I am in total awe of this little girl. Never in my life could I have imagined to know someone with so much fight in her, yet to have it be my own daughter.

So this current state Macy is in is a tricky one. She has no more paralytic, but still gets Versed and Fentanyl for pain. They are using it to help keep her comfortable as well because she still has the vent in.  The vent goes in her mouth, and down her throat to help her breath. It has an umbilical clip around it at her mouth area and is taped to her face.

I can't even begin to imagine how uncomfortable she is. She is currently coming and going out of wake and sleep.  Around the tube she is creating a lot of mucus and spit that she is pointing at for us to suck out.  She cannot talk around the tube however she keeps trying.  To sit and tolerate a tube down her throat like this is amazing, especially for a child, and a child with a very bad gag reflex!

She is answering our questions about her needs with yes and no head nods.  Her belly is hurting her the most right now, so any movement makes her cringe.  I can only imagine how it feels since has that huge Mercedes incision.  Amongst the ventilator and the incision, she still has 3 IVs, her central line, and her art line. The catheter is still gone since she is producing enough urine in her own, which we cannot get her out of bed to do, so that is a whole other story. Her  mezenteric line (belly line into portal vein) is gone as well.  But good grief, to wake up with all this stuff in you and handle it so well is unbelievable!

Today we are praying to wean her vent setting and get her extubated. We are also praying to get her blood thinning back to the therapeutic level it was at before surgery. We need lots of pray for pain control for Macy as well! Also please pray for Jeremy as he is leaving today to go home. He needs to work, but more importantly we want him to be with McKenna on her last few days of school.  Pray for his emotions as he walks out the door, and for safe travels! We are hitting that road to recovery with pure determination and drive!

Day 6: Surgery #2

As many of you know, our second surgery is finished. Macy was a rockstar! We experienced a first today. Out of all of the surgeries we have had, we have never been inpatient and had them take her to the OR from her ICU room. Today they did. It was odd for me and Jeremy to watch them wheel her away for a major surgery and the stay in the room. It was a long wait in an empty room where her bed once stood.

So they removed the staples that were holding her skin on her incision, and did some imaging. They were beyond amazed when they noticed that the shunt (wrong pathway) had almost closed on its own. So they completely occluded it with a band, and her pressures barely changed. This is exactly what they wanted. She had blood flowing through her actual portal vein, and had great blood flow in the liver. They were beyond excited.  So they completely cut and removed the shunt. It is gone! Her blood is now flowing where it should be.

Again, this is a big adjustment for her body. In order to keep her cozy and watch her closely we are back in the ICU, and she still is breathing with a ventilator and on multiple pain meds. They will most likely start weaning her vent down tomorrow, and we can get that stinking tube out of her throat.

They still have to monitor many different things with her such as specific blood numbers, as well as her belly fluid. We are so proud of our girl, and I have never in my life seen someone with so much courage, strength, and determination!  Keep the prayers coming, we still have a very long road to recovery.

Day 5: Post Op

I can't  even begin to describe how amazing our daughter is! We have had quite the day.

When the doctors did rounds this morning, they discussed turning off her paralytic medication. Since she is having surgery tomorrow, turning it off can now, can help her recovery after surgery tomorrow. They also discussed removing her catheter, and letting her go without to reduce the chance of infection.

So, after getting the okay from Dr. Superina and his team, they gave the okay for both of these changes. First the catheter came out. Then, they turned off her paralytic, explaining that it would most likely take hours for the drug to wear off. Well, in true Macy fashion, it only took minutes. First she started twitching in her hands and feet, and then she started moving her arms.  Then she started to become a little agitated, and started to fight the breathing tube. So our nurse calmly talked to her like she has been doing for days (even though she hasn't been awake) and said "Macy, why don't you take a nap?" Shocking us a all, Macy shook her head NO. We all looked at each other in shock, and then asked her another question and she answered again with a head shake.

So for the last few hours, Macy has been communicating with us through head shakes, and arms movements. Finding out her needs has taken me and Jeremy a lot of questions and a lot of guessing. She is truly amazing! She has tried to talk around the breathing tube, tried to smile, and has even cried. It's hard to help her, but we are trying our best.

The attending doctor with us today came by to tell us goodbye, and Macy tried to wave goodbye to him. This sweet girl can barely open her eyes, is on pain medication/sedation, is breathing by a ventilator, has very weak arms and legs, yet is fighting through it all.  Nurses and doctors have been coming by to see her because they are all amazed by her as well.

I explained that she has her second surgery tomorrow, and that when it is over she can tell us all the things she wants to tell us.  She is so strong!

So we are keeping her on all of her pain meds, they are helping her to stay comfortable. Her hemoglobin is a little low so they are going to give her some blood. Surgery is tomorrow at 10:30 a.m. Please continue for no pain and lots of comfort through the night, as well as a successful surgery tomorrow, and fast healing!

Day 4: Post Op

Sorry this post is so late, we had a very busy day today....well as busy as you can be in the ICU. Our morning started with the nurse noticing some bloody drainage from her wound.  It was draining pretty heavily so they notified surgery.

Surgery came in, changed the dressing, and told us he believes it is because her blood got a little too thin coupled with the fact that it could just be draining as well.  He ordered an ultrasound as well as a venogram to take a look at what was happening inside.

Ultrasound came bedside, and it took about 1 hour.  Then around noon they had to transport Macy to Interventional Radiology for the venogram. Transporting a patient who has over 10 meds hanging, as well as monitors and a vent is quite a task. They have to turn the vent off and bag her the whole trip. Yikes...makes me nervous. She did great though, and was back to the room within about 45 minutes.

The surgeon came soon after to visit, and entered with, "we have good news"! Her tests showed that she has very little blood flowing through the shunt (wrong way), and that blood flow and pressures look great. We are on the books for surgery #2 on Monday. The anesthesiologist already came by to introduce himself. We don't know what time yet though.

The have informed us that Macy might still be on the vent when she returns from surgery, but the goal will be to ween her and start waking her up. Only her body knows how long that will take, so I can't make any predictions. They also said waking up and getting her comfortable will be difficult. So Jeremy and I need to rest up so we can focus on Macy.

Our day was made extra special by all the Flat Macy posts that everyone did! We have over 50 pictures, and Jeremy is working on compiling them so we can share them all in one place, and have it ready to show Macy when she wakes up! The love for our sweet girl and our family touched my heart so deeply today, and brought me to tears multiple times.

In other news...our sweet McKenna lost another front tooth, and looks absolutely adorable! My mom has been doing an amazing job taking care of her, and I am so happy she is there to give her all the love like I wish I could right now! Thank you Mom!

Great news, good day........come on Monday!

Day 3: Post Op

Macy did pretty good overnight with no desats (dips in her oxygen). I was up a lot through the night due to people coming and going. She has had a low grade fever, so they ran some cultures. The culture from her vent tube came back positive for bacteria. She is already on antibiotics so they will just tweak those to fight this specific type of bacteria.

The surgeons came in this morning and said we are getting her coags (blood clotting factor) close to what we want.  They want her blood to be a specific thinness. Her labs earlier this morning were 55, and then dropped to 35.  They want her in between 60-80.  We increased her sedation a little bit due to higher heart rate and high blood pressure. They also ordered an echo, and her heart looks good.  Her catheter leaked a little today, but we think the issue is fixed. Overall she looks pretty good right now.

One of our surgeons changed her dressing since it was completely saturated. She is not stitched closed, but her top skin is stapled temporarily. It looked good, and it is great to see a nice clean dressing. He said it still looks like we will go back in Monday, but we have no idea when since they will just take her from our room. We can't be more proud of our tough little Macy.  She continues to amaze us!

The main man, Dr. Superina came in tonight. He said she looks great, and will most likely do a veno gram tomorrow. They wil be checking for blood flow as well as clotting. After surgery Monday, we will start waking her up. I feel like crying just thinking about her waking up and seeing those sweet eyes again!

Jeremy and I are here alone now, my dad went home.We appreciated him being here to help during pre-op and surgery day. He is such a supportive man. It had been so long since a big surgery we just didn't now how we would do.  We are doing great though. Jeremy has been awesome. He has been getting us food, bringing me changes of clothes, and even brought the nurses donuts this morning. They loved it! He did some laundry last night when he got back to the RMH. I finally got to take a shower last night. It was amazing!!!!

McKenna has been having a great time with Grandma Kelli! My mom has volunteers at the school each day this week, and has been doing great things with McKenna. We have been using Face Time to see her and talk to her daily. She broke my heart last night when she asked to see Macy.  I showed her the view from our window, and a quick view of the room.  She could not see Macy, just her feet. They will be so happy to see each other again!

Day 2: Post Op

I forgot what it was like to sleep in the ICU. It's awful! I think I might of slept a total of 3 hours. I just can't stop jumping up each time someone enters the room. I tried to sleep today, but it didn't happen.

The doctors and nurses have been working all day to get some of her levels adjusted appropriately. They have changed her vent settings as well as increased her pain and paralytic meds.

At 3 a.m she had an episode where she dipped her oxygen levels. They had to detach the vent and bag her until she came back up. She did it again this afternoon, but dipped down much lower. It is scary to see those numbers dip and watch your child being bagged. They had to call for backup.

After that they ordered a chest X-ray. The film shows an area in her upper left lobe of her lungs that is either filled with fluid or a collapse. They made some changes to her vent, and respiratory therapy came down to give Macy a treatment from a machine called IPV. It gives percussion to her lungs through the vent. She responded well to it! They are also starting her on TPN tonight which is nutrition through one of her lines.

I miss McKenna so much! We've been face timing, but I miss her hugs and kisses like you can't even imagine. Actually, I miss both of my girls. Macy is physically here with Jeremy and me, but not really.  I know this is only temporary, but it is so hard. I see life going on outside the windows of the hospital, I hear staff talking about their kids, I see pictures of friends simply living life, and it makes me sad. I want that so bad right now. The worst part is that we have many more days of this.  It will all be okay, and we will be back to our awesome family outings and family movie nights before we know it! Trying to keep positive!

Overall kind of a rough day, but looking up.  Please pray for a resolve in her left lung, as well as continued positive changes!

Day 1: Surgery

Surgery day is always a hard one. Thankfully Macy was in great spirits! We got to pthe surgery waiting area, checked in, and were in a room by 6:30 a.m. We were visited by the nurse, 2 people on the anesthesiologist team, and then our surgeon.  Macy finally looked at us and said, "let's get this over with!"

Sporting her giant hospital gown, paper shorts, and gigantic footies, they rolled her away playing Fruit Ninja on the anesthesiologist's phone. They have rolled her away 21 times before, but it never gets easier.

They told us surgery would take 4-6 hours, so we had to wait in a surgery waiting room. I am not a patient waiter. I pace back and forth, try to do something to occupy my mind but only make it about 2 minutes, and I check the monitors 1,000 times even though I know it will tell me that she is still in surgery.

After 2 hours with no update, I finally asked for one. I had given the surgery team my cell phone number and was surprised when they called my cell to update me. They told me she was stable. All of her lines were in and they did a few angiograms. They were working on the partial fix. About 2 hours later they called to say that she was done. She did great, and the surgeon would be out to talk with us.

About 30 minutes later, Dr. Superina rounded the corner. He said she did great, and showed us some imaging. Non-occluded (closed) her portal pressures were 14. When he occluded fully, they jumped to 50! Whoa! So he played around with what he wanted to do, and left it partially occluded with her pressures at 30. He purposefully gave her portal hypertension (too much pressure) so that he could force blood through her tiny, weak portal vein and all the other smaller veins to and in the liver.   Originally we talked about 2 days in ICU before going back in to fix her completely, but he informed us he was thinking it looked more like 5. Not exactly what we wanted to hear since she has to be completely sedated the whole time to avoid any movement.

It took well over an hour before we could see her. Jeremy and I both started crying the minute we saw her. It's just so hard to look at her in that condition. She has a ventilator hooked up that is breathing for her. She has an IV in one arm, an arterial line in the other arm, a central line in her neck, a catheter for urinating, and a line checking her portal pressures running through her stomach.  She is receiving over 10 medications through her various lines. Her incision is not closed, but covered. It is in the typical transplant shape (peace sign). She's going to hate it, but I am sure she will wear this scar proudly just like the others.

She tried to wake up 6 times this first evening, despite all the medications and the paralytic. Such a Macy move! They had to up her doses. They worked to get her vent set up perfectly so that her blood gases looked good, and needed to find the right dose of heparin ( blood thinner). So now it's just a wait and see what she does phase. Keep the prayers coming!

Macy's Miracle Story: Part 5 Life Goes On

So I will not pretend that I handled seeing Macy with a trach in her neck very well.  I didn't handle it well at all.  As a matter of fact, the first day I went to go see her I just sat next to her crib and cried the entire time.  The nurses just left me alone with her.  We were told that we could not hold her for 5 days until her ENT could do her first trach change.  Macy did not have a vent, but she had a humidity machine with a mask over her trach, and had to continually be suctioned. 

One week after her trach surgery, they took her back in to repair her hernia.  She did great!  Jeremy and I kept pushing for Macy to go home.  They said there were a lot of things that needed to be accomplished before we could do that.  The two main things were that Jeremy and I had to receive training on her trach care, and we had to spend the night with her to prove that we could care for her.  So we once again pushed to have it all done within a weeks time.  The trach care training was completely overwhelming.  I left that day and didn't honestly know if I could handle it.  The NICU nurse was setting up plans for us to be home such as home trach equipment, appointments with our pediatrician, follow-ups with our Riley specialists, First Steps therapies, and nursing care.  Nursing care?  We don't need that, at least that is what Jeremy and I thought.  So, against their wishes, Jeremy and I refused nursing care.  We stayed the night, took care of Macy in shifts, and after 39 days in the NICU we walked out the doors with our baby girl! 

 

To this day I have no idea how we did it!  All I do know what that is was the hardest time of our lives.  Macy had to be suctioned very frequently, even through the night.  Her humidity machine didn't last all night, and had to be refilled halfway through the night.  She was hooked up to a machine to monitor her breathing rate and oxygen levels that we carried around with us like a purse.  On top of it, we were both working full-time from the time she was 5 months old and on.  We cleaned around the trach each morning and evening doing gauze changes, we cleaned out her suction machine daily, and we did a complete trach change every Sunday evening.  Her trach straps had to be changed out often because she often vomited on them, and they would become saturated. 

Her feedings were like little marathons for her little body, she was not growing much, and she coughed, gagged, and vomited often.  Poor sweet girl......my heart broke for her!

In the first 2 years of life Macy faced 15 surgeries.  She had many bronchoscopies, hearth caths, 2 heart surgeries, and a trachea repair.  She continued to amaze the doctors after each surgery.  She recovered quickly, and went home sooner than anticipated.  She continued to drink orally, despite having a trach.  Most trach patients end up with a G-tube. 

 

 

Even though she ate orally, she didn't eat well.  She had a very small appetite.  Along with a physical therapist, occupational therapist, and speech therapist from First Steps, Macy was also seeing a nutritionist.  The nutritionist had great ideas to help get Macy to eat, but she did not grow well.  At 1 year old, she weighed 11 pounds, at 2 years old she was only 17 pounds, and at 10 years old she is still only 44 pounds.  It's crazy to think about!

Despite all of these challenges, this little fighter met all of her milestones close to when she should've.  She was walking by 15 months.  She was only about 12 pounds, and walking all over the place.  She got her trachea repaired at 1 year, 3 months, and had the trach removed permanently at 18 months.  She started talking right away!  It was AMAZING to hear that scratchy little voice that we only dreamed of hearing! 

 

 

Over the years we have battled sicknesses, breathing issues, growth challenges, and many more.  To date, she has faced a total of 21 surgeries.  Next week we face numbers 22 and 23.  It never gets easier for any of us.  All I know is that she is amazing!  She is a true fighter unlike anyone I have ever known!  One thing we have all learned is to not sweat the small stuff.  You can't....there are so many big challenges in life to conquer!  We are very proud of our little miracle. 

 

 

"AND THOUGH SHE BE BUT LITTLE, SHE IS FIERCE!"