Monday, August 18, 2014

G-Tube Surgery & Hospital Stay - In Pictures

August 3, 2014
Last photo of Olivia's tummy before g-tube placement

August 4, 2014
5:00 am - doing a vest & neb treatment on the way to the hospital for surgery and loving the new "Princess Kitty" gifted to her from Braelyn and Aunt Darci.

8/4/2014 - 6:00 am - Surgical Waiting Area - Olivia & Princess Kitty waiting to go back to pre-op

Olivia in the PACU (Post-Anesthesia Care Unit) following surgery

In the PACU and in lots of pain following surgery

Finally, after 4 hours, Olivia's hospital room was ready. 

Olivia's Hospital Adopt-A-Room, which was an amazing room with so many gizmos and gadgets and tons of space. Compared to the NICU we were in for over 10 days following Olivia's birth, this room was like a 5 star hotel. 

The awesome lights in the Adopt-A-Room, there were about 10 different colors and settings for these which Olivia really got a kick out of, I must say they were super cool. 

Day 1 of Hospital Stay - Still in pain and not feeling so great

Olivia's 1st vest & neb treatment post surgery. This was about 12 hours after surgery. She was in pain but with lower settings and pain medication she made it through the entire 30 minute treatment. It's amazing to me how strong kids are, to be able to endure this treatment so soon after surgery - unbelievable. 

Day 1 - gifts from family. They definitely helped to brighten up her spirits.

Day 2 - more gifts arrived from the gift shop from family. Smiles all around. 

Up & Walking around. Our pulmonary team wanted Olivia up and walking as soon as possible after surgery in order to get systems moving again and to make sure her lungs weren't being compromised from laying around. She was up and walking later in the evening after surgery on Day 1, a few times around her room and back and forth to the potty. On Day 2 we did as much walking around in the hallways as Olivia would tolerate.

Day 2 Hospital Stay. Sitting on and getting up from the potty made for some very strong pain for Olivia. On one trip she accidentally ripped out her iv as she was yanking on her hands so hard from the pain. She had to have another iv put in and prior to doing so, one of the Child Life Specialists came in with a Tubie Friend Build-A-Bear. Not only does this little bear have a g-tube just like Olivia's (which Olivia is practicing flushing out the button on here) but the Child Life Specialist along with Olivia put an iv in the bear's arm just like Olivia would be getting done next. This sweet bear, which Olivia named "Elsa" is such a neat friend and so special that the bear's tummy looks just like Olivia's.  

Day 2 - Working on Legos to pass the time. 

Day 2 Hospital stay - a visit from Grandma Pam with Frozen gifts galore made for a happy, happy girl.

Day 3 - Coloring her Frozen Elsa & Anna purse with her iv/stinted up hand and doing a fine job at that.

Day 3 - This face is the result of spotting the man cleaning the windows, dangling from a rope outside of our 6th Floor Room. Olivia was in awe.

That in fact is the man cleaning the windows, it was quite the sight to see and Olivia got the biggest kick out of watching him swing back and forth cleaning the windows. 

The best part of Day 3 - a visit from best friend Landen. I will never forget the smile that lit up Olivia's face when she woke up from her drug induced sleep and spotted Landen. It was the sweetest and biggest smile I had seen on her face, definitely priceless.

Best Friends. Olivia was thrilled to see Landen but this was all new to Landen and I don't think he knew what to fully expect so he was a bit frightened but so happy to see and cuddle with mom and dad and see his little sister Olivia all the same.

White Kitty & Hospital Lights artwork from cousin Braelyn. 

Day 4 - Feeling better and excited to find out we are going home!

Happy to be leaving, last photo of our stay in Room C6133.

Busting out of the Hospital with Elsa & Hello Kitty Balloon.
Goodbye 6th floor, I hope we aren't back for a very, very long time. 

Thursday, August 14, 2014

G-tube Nightly Feedings - Our Process & Routine

Unless you are really interested in the how the g-tube works for us, this may get to be a long and winded read. 

However, since a few have asked how we do Olivia's nightly feeds and putting this all down here was a good way to further instill the process in my brain - here goes, Olivia's nightly g-tube feeding routine:

1. Wash Hands Always.

2. Gather supplies (enzymes, pestle & mortar, cans of formula, new feeding bag, 60 mL syringes for flushing and venting).


3. Wipe off the top of the formula cans with a clean, damp paper towel to remove any residue, dust etc. Shake the formula can.

4. Half an hour before Olivia begins her tube feed - crush enzymes. Olivia's dosage is 4 enzymes per can of formula so at goal she will get 12 enzymes per feeding every night. We use a pestle & mortar set that we purchased from the hospital pharmacy for $7.00. (Our dietitian also recommended a coffee grinder for crushing the enzymes so a matter of choice here). Since Olivia's tube feed enzymes come in a tablet form, the pestle & mortar set works good for me. I make sure to crush them as thoroughly as I can to help avoid clogging up the tube during the nightly feed, especially since the tubing is so small. Since the formula is so dense and thick already, I crush and crush and crush some more until I can't see any big chunks, just fine powder.

5. Fill up a 60 mL syringe with clean water. Since our well water is filtered 3 times, we use our own water but it does come out cold so I fill it up early to allow it to warm up to room temp a bit before I flush out her tube. One could also warm some water up in the microwave or use bottled water at room temperature, a few different options here just as long as it's clean water. 

6. Add the well shaken cans of formula to a new feeding bag. Currently I'm using 500 mL feeding bags. Once Olivia is up to goal I'll move up to the 1200 mL bags. However, since this is our "starter set" we got a few different options to test out so I have to use what I have for this months supply. Since Olivia's feedings consist of more than 500 mL/night, I have to add more formula and enzymes to the bag late in the evening. Once insurance allows us to order more, I'll solely be using 1200 mL bags to eliminate the added step of having to add more in the middle of the night. 

7. Add the crushed enzymes to the bag of formula. Since the bag opening is small, I choose to dump my enzyme powder onto a clean bi-fold paper towel, fold it in half at the crease and pour the powder into the bag. When I tried the first night to dump the powder from the mortar bowl directly into the feeding bag, some spilled over the sides, (as you can see in the photo below), so the paper towel method works much better for me.

8.  Squeeze out any air in the bag, secure the lid and shake, mix and massage the bag to mix the enzymes and formula together. The crushed enzymes like to clump together so it takes a lot of shaking and massaging to get them to mix up properly with the formula. Our CF team advised us to allow the bag of formula/enzymes to sit for half of an hour before administering the nightly feed. This allows the enzymes to start breaking up the fats in the formula. So for this step, I hang the bag on her IV pole and give it a few more shakes a few more times before the 1/2 hour is up.

9. Next, place the tubing into the feeding pump and shut the door. Turn on the feeding pump, set the rate of the nightly feed, I also choose to set the total volume. (The last setting stores so once you are at your goal rate, you won't need to adjust this but since we are still increasing to get to goal, I have to change it every night). Then, press and hold the Prime button down until the tubing is fully primed and filled up with formula. I remove the lid from the tubing end connector and prime until a stream drips into the lid to make sure as much air is out of the tubing as possible. 

10. Hook up Olivia's extension tubing to her Mic-key button. Currently we have been taping the tube down in a "s" like pattern onto her belly (trying to tape in different spots each night to reduce irritation) with the hopes of eliminating, as much as possible, tugging and pulling on the button and kinking of the tube. If the tubing kinks and no flow can pass through - the feeding pump alarms, which is a pretty loud beep. (*Note you can change this setting but I choose to leave the alarm beep loud so I'll hear it when it goes off). This beeping alarm is good but it's nice to not have the beeping in the middle of the night as much as possible so as to not wake up the sleeping child. 

We've also been using a g-tube pad on Olivia's button sight. I've heard it helps with granulation tissue and will also absorb leakage if it occurs. During feedings, it also helps to hold the button into place and keep it from rotating as much during the nightly feed, another measure to help eliminate with tube kinking. I will note that it is extremely important to rotate the button each day so that it doesn't get stuck into place. Our instructions are to rotate it 1/4 turn twice/day, which I do in the morning and night. 

11. At this point, I have at times chosen to vent or 'burp' her tube. To do this I hook up a 60 mL syringe without the plunger in it and a larger diameter extension tube, move it around a bit to see if any air escapes. Once this is done, I clamp off the extension tube, remove the 60 mL empty syringe, remove the extension tube and attach the smaller diameter extension tube for the nightly feed.

12. Attach the 60 mL syringe of warm water and flush the tube with 20 to 30 mL of water prior to the nightly feed to make sure it isn't clogged. Clamp off the tube, remove the syringe and hook up the primed tubing with the formula in it. 

13. Tape the connectors. Olivia currently has "y" type extension tubing for her g-tube. The larger opening is for the formula nightly feed. The smaller opening is for administering medication via the g-tube when needed. Since we aren't administering medication through her tube currently and even if we were, I still choose to tape the medication tube port at night to eliminate the valve from opening up and having formula empty out all over the place. These smaller valves don't seem to fit all that securely into place so I choose to tape it for added security and peace of mind. 

14. Press the "Run/Pause" button on the feeding pump and the nightly feeding begins. 

Our 'goal' set by our cf team, is to run the feeding over a 10 hour period but lets be real, Olivia maybe should be sleeping 10 hours/night but she doesn't. So we've been starting her feed around 8:00 or 9:00 pm, depending on when I can finally get the monkey's into bed, and then I will get up and shut it off around 5:00 or 6:00 am, letting it run for 9 hours. Usually it is about finished by the time I get to it anyway. If I'd let it run out completely, which I did the first night, the feeding pump will alarm/beep that the feeding is complete. I try to beat the alarm each morning so that I can disconnect everything while Olivia is still sleeping.

15. To disconnect/end the feed I first, press the "Run/Pause" button to pause the feeding. You need to do this so that the pump doesn't continue to pump out formula while you are disconnecting things, making a mess all over the place. 

16.  Turn off the feeding pump. I do this right away because our pump will start beeping and alarming you to press "run" if it's been paused for longer than 15 seconds or so. Again, trying to not wake up the sleeping girl.

17. Clamp off the extension tubing and attach a 60 mL syringe of water.

18. Un-clamp the extension tubing and flush the tubing completely to rinse out all formula in the tubing. Depending on the length of your extension tubing, usually 20 to 30 mL of water will suffice, but flush until you can no longer see formula in the tube. 

19. Clamp off the extension tubing again and remove the 60 mL syringe. At this point, I also use an alcohol pad to remove the tape that is holding the tubing to Olivia's belly. The alcohol pad makes the tape come off easily and Olivia usually remains sleeping through this part. 

20. Once the tubing is no longer attached to the belly via tape, I remove the extension tubing from the g-tube button and close the g-tube button valve. 

21. If you plan to reuse your extension tubing, even though it has been flushed, I take the tubing to the kitchen sink and rinse it out with some soap and water because once the formula dries in the tubing, it's impossible to get out. Our insurance only allows us a certain number of extension tubes/month so we end up using one extension tube for about a week. So I rinse it early in the morning after the feeding is complete and then wash it out completely with soap and water later in the morning and leave it to air dry on a clean paper towel until the next nightly feeding. 

Repeat entire procedure again the next night/feeding.  

A few other helpful tips and tricks:

*Keep a puke bucket handy, especially when starting out or adjusting the rate/dose. It's not fun having to run for a garbage can or something else in the we hours of the morning to catch that what comes up quickly. 

*Have a flash light, or cell phone or something with a low light but enough of a light so that you can what you are doing in the middle of the night.

*Elevate the bed. Yes, it's not as pretty to have blocks under the bed, especially Olivia's which has drawer storage under it making it impossible to cover up with a bed skirt, but the aesthetics is something I'd easily give up for less vomit and more sleep for all. Plus, the IV pole and feeding pump make her room look more like a hospital room than the elevated bed. Perhaps my next project will be to build her an elevated bed (the frame will be triangulated) that will be elevated but sit flat on the floor as to not have the gap that we do now between the bottom of her bed and the floor. 

Monday, August 11, 2014

G-Tube - thoughts and reactions

One week ago, Olivia had her g-tube placed. It seems like a lot longer than just one week. Things have definitely changed, my nightly routine mimics that of caring for a newborn at times rather than a near 5 year old, especially the lack of sleep and how often I am getting up to comfort, stop the beeping, clean up vomit . . . I know things will get better, I know we will all adjust and I'll basically be able to tend to the g-tube and feeding pump in my sleep but we have a ways to go to get that point.

It will be awhile, I am sure, before we can fully gauge if we made the right decision on going forth with the g-tube. So many times prior to finally deciding to have the g-tube placed, we heard over and over that "this will be good, it will alleviate so much stress from you as parents and for Olivia", and "with the g-tube she will get so many calories during the night that what she eats during the day will just be a bonus" and "you will no longer have to stress and force Olivia at meal times, you'll actually be able to discuss your day and hers" . . . really the list goes on and on of all the 'positives' we heard regarding the g-tube. Don't get me wrong, it has only been a week and it is definitely way too soon to tell, but I just wish that as our cf team was pushing the g-tube so hard, reiterating the positives over and over, that they would have told us about some of the realities, the challenges and the problems of going forth with the g-tube placement.

It's been a week, Olivia is pretty much back to being herself. She's been completely off of pain medication now for 3 days. She does her vest and nebulizer therapy twice a day for 30 minutes each with no complaining of pain at her button or her incision site, only requesting to have the soft pillow mask covering the button during the vest. She is running, playing, bike riding, doing so many things that she did pre-surgery and both Jeff and I couldn't be more pleased with that. She definitely tests her limits and at times we wish she'd slow down as to not overdo it but that is Olivia, go-go-go. As summer dwindles, and our days of fun and sun will all-to soon be gone, I wish she could enjoy pool time but that will be at least 2 weeks if not more and we were told that she can't be in the lake for the rest of this season. This is one summer in a list of hopefully so very many more to come, so we are okay with this, Olivia on the other hands, asks to go in the pool everyday . . .

What she isn't doing well yet is eating, nothing new I know, we've struggled with this for over 4 years. She is still recovering from surgery, but still, we stress. It has been a week, she is definitely doing everything to expend her energy and next to nothing to replenish it. She still literally will only take mouse bites for each meal and/or snack. Therefore, the "stress" of mealtimes and snack times is certainly not gone, if anything it's worse than before. For over 3 days, Olivia literally ate or drank nothing in the hospital. Once she did start eating and drinking, it was such a small amount that I am pretty sure the nurses didn't even record what she did eat or drink. I figured once we got home and she was feeling better she'd pick back up at least a bit but Jeff and I still aren't seeing that. She isn't even eating half of what she did pre-surgery. Many may think this is okay as she has the g-tube for nightly feeds, but not so much. Currently she isn't up to the goal of 750 mL/night because her stomach won't tolerate it and she wakes up vomiting. For the past 2 nights, we've tried 63 mL/hour and she has vomited both mornings so we will need to dial the rate down and see if she will tolerate that. Say she was getting all 750 mL/night, that amount would give her 1/2 of the total caloric intake she needs per day to grow like she should. Just half. So given the fact that she clearly isn't eating enough during the day to make up the other 1/2 of the calories/day she needs added to the fact that she isn't yet up to goal at night, the result is that she is not getting enough calories/day.

Stressful . . . frustrating.

Olivia's Mic-key g-tube is held in place by a balloon that is inflated in her stomach with saline. Both Jeff and I had wanted a smaller g-tube button, the mini-one, installed initially but our wish wasn't granted and we've both read that the balloon size of the mic-key compared to the that of the mini-one is larger so it can make one feel fuller as it takes up more room in the stomach. So when you think about it, Olivia's stomach has to be teeny-tiny by now with the affects of having surgery, added to the lack of eating, added to the space the balloon takes up, it's not a wonder why she eats mere mouse bites. So we clearly have a few things stacked against us here, the balloon and the lack of appetite and feelings of fullness. Hopefully, in time, it gets better, hopefully her appetite increases, hopefully we can get her to tolerate more volume during her night time feeds and hopefully in 3 months when her g-tube button is changed out, we can switch to the mini-one and hopefully . . . all of this helps her gain more weight than she did without the g-tube.

Another thing I wish we would have been told to prepare for was the pain, recovery time and hospital stay. Many times we heard, "it's a simple procedure with a small hospital stay, once pain is managed and feeds are tolerated you can go home". We were told our stay could range from 2 to 5 days and that was after we got many, "oh, you are staying overnight? comments from quite a few different staff. Our surgeon told us to prepare for a few days, our cf team said a few days and I think both Jeff and I were determined to be out as soon as possible and when she'd take one step forward and two steps back it felt like we'd never get out. We were in the hospital from Monday at 6:00 am until Thursday at 1:00 pm and neither of us was ready for that, I think in our minds we had hoped and imagined being out by Wednesday morning. We also weren't ready for all the pain Olivia would be in, or the setbacks she'd have, or the choices we were faced with where it felt like we were robbing Peter to pay Paul. Olivia couldn't poop and given her history of meconium ileus and intestinal blockage this was concerning to us as parents, she was also in a boatload of pain so it was a 'give her this medication to ease the pain and it can cause constipation', or it was 'give her this medication for pain and it can cause nausea'. There were far more worries than we were prepared for and largely in part, I'm sure to our naivete as this was her first hospital stay since the NICU at birth.

Honestly, there were so many times I just wished that we would have had someone who knew a darn thing or two about real life with cf giving us advice and telling us what to do rather than hearing it from people who work with it but don't live with cf day in and day out like we do. I don't know how many times both Jeff and I let the words of one person go in one ear and out the other knowing that what they were saying would not 'fit in' or work for our cf life. I know everyone wants to help and it has to take a special kind of person to work with cf every day, I'm not ungrateful to the hospital staff or our cf team at all, I'm just frustrated that they can paint a picture that at times is very misleading and far from the reality.

I don't know how many times we had to speak up and speak up and demand that things go how we wanted them to go rather than how the hospital staff thought they should go. I learned soon after Olivia's diagnosis that I had to be her biggest advocate in her care, it's true and I've never stopped. We know Olivia, better than anyone so it's our job as parents to see to it that she gets the best care possible that is tailored to her. In the hospital, this was a challenge, fighting for what we knew was best or what we believed to be the right way to go, but we fought, ticked many off I am sure, but we did what we could and made choices against the wishes of some based on what we believed to be the best choice for Olivia.

Where to go from here? Well, we will go back to clinic in 2 weeks for our post-op visit with the surgeon and a follow up with cf team to discuss the g-tube and how it's working. I had hoped that we could stop the periactin, the oral med that we used for appetite stimulant because over the past 1/2 of a year upon re-starting it, Olivia gets terribly awful mood swings from it. She gets so irritated, crabby and can be down right mean. Jeff and I know how to roll with it but poor brother Landen gets the brunt force of the "p-day" effects when Olivia lashes out at him. We wanted to discontinue it because of how irritable it makes Olivia but given that her appetite is still far from what it should be during the day, I am thinking that we will have to cycle back on and off with it so she will actually eat during the day. We will also back off on her nightly feed volume and try to ramp back up slowly as to decrease vomiting. We are also going to look at elevating her bed to keep her upright during the night to help with gas in her belly. In 3 months we will change out Olivia's g-tube button and hopefully we can switch to a lower-profile one with a smaller balloon to hopefully take up less space in her stomach so that she will feel less full.

Thus we are dealing with lots of changes, trial and error, hoping and praying, stress and frustration and so much more, hoping we made the right choice and the g-tube will prove to be a benefit to Olivia, something that will help her thrive and grow, something that we can tell her is making her be the best she can be and the strongest little lady that she can, rather than being a constant bump under her shirt to remind us of all that cf does and is.

Friday, August 8, 2014

Home . . .

Finally . . . we are home, the days seemed to drag on, it feels like weeks rather than days but we are glad to finally be back home. We were welcomed home by an eager big brother Landen, Shelby, Braelyn and Grandma Dianne. Landen and Braelyn welcomed Olivia home with a big sidewalk chalk message, it was sweet.

Days 3 and 4 at the hospital went better. Once we finally were able to discontinue the oxycodone and start zofran for nausea, Olivia improved a lot. During the day she was able to eat small bites, drink a bit and tolerate pedialyte through her g-tube without vomiting which was great. Wednesday she just ate small amounts, literally bites and sips of fluids but it was a start. The zofran stopped her nausea so she wanted to be up more, moving around, coloring and playing in bits and spurts. It was so nice to not have the sedative affects from the oxycodone, she was so much more herself. On Wednesday, she was feeling better and didn't nap at all until about 5:30 pm, she clunked out good and missed most of the visit with big brother Landen. I was able to wake her up just as Landen, Darci and Grandma Dianne were getting ready to leave and she had the biggest smile I'd seen so far when she saw her brother, it was the sweetest thing ever. Olivia was tolerating her vest treatments fine and Wednesday night we were able to begin her nightly feeds of formula. We started out at a low volume, 15 mL/hr and were able to increase to 40 mL/hr by Thursday morning. Since the goal is to use the feeds as a 'supplement' overnight, we stopped them Thursday morning around 8:00 am. She did her vest/neb treatment had a few small bites for breakfast and was up and moving, a big improvement even from the day before. Jeff and I were determined to bust out of the hospital and continue to up her feeds at home during the night to the goal of 75 mL/hr. Thankfully, because she was doing what she should have been doing, her pain was managed, her surgical sight looked well and she was tolerating the feeds, the surgical team and the pulmonology team both agreed and we were walking out the doors by 1:30 pm. I was able to attend the training Thursday morning for the pump that we will use to administer Olivia's tube feeds and we had our supplies delivered before we got home so discharge, surprisingly, went very smoothly. Man on man, it's good to be home, now that everything is unpacked and I'm getting things back in order, it feels good. Both Jeff and I are still completely exhausted but we'll catch up on our sleep all in due time.

Last night I was able to set up Olivia's feed and we did that over an 8 hour period. We will continue to increase the rate by 10 mL each night until we get to the goal of 75 mL/hr. Our CF team wants us to do 75 mL/hr over a 10 hour stretch for a total of 750 mL each night. They also say CF is supposed to fit into our lives and that this is to supplement overnight, not take away from her eating during the day. So, given all that, the fact that Olivia is currently at the 28th percentile for BMI and that there is no way she sleeps 10 hours/night, we will probably get her up to 75 mL/hr over 8 hours and see how she does with that for now. My biggest concern is to train her so that if she needs me in the middle of the night to not try to come crawling into my bed as she has in the past but rather to yell for me to come to her room so that she doesn't tug or pull out her tube since she is hooked up to it all night long. Needless to say, I'm sure I won't be sleeping too well for awhile here until my nerves are settled on that subject. Overall, last night went well, I got up at 3:00 am to give her a dose of tylenol through her tube and since this is a different pump than the one we used in the hospital I didn't realize I had such a short amount of time to deliver the med and flush the tube before it was screeching at me to start the pump up again. The screeching woke Olivia up right away so hopefully I can do better tonight so we don't have that to deal with. Other than that, she slept okay, didn't have any accidents or leaking with the g-tube so I'd say for the first night on our own it was successful.

She still isn't eating that well yet during the day but I'm sure it'll take time after not eating for so long after surgery, the effects of the surgery on her stomach in and of itself, now being continuously fed for 8 hours during the night and having the g-tube balloon taking up some space in her tiny stomach as well. I'm trying not to pressure her to eat more during the day as we were told this would alleviate that stress, so far that is not the case as it's still important she eats throughout the day but all in due time, baby steps I suppose.

So, all things considered, we are doing well, thrilled to be back home and getting back into our routine and back to our normal. I'm sure each day will get better and better as she is in less pain and adjusts more and more. Must run for now, I will post photos of our hospital stay and such in my next update along with our thoughts and reactions to the surgery, the g-tube and our hospital stay.

Thanks again to everyone for your thoughts, prayers, letters, emails and gifts and to Grandma Dianne, Darci and Grandma Pam for taking care of Landen. This was definitely a huge deal for us and we couldn't have done it without the help we received so thank you thank you.

Tuesday, August 5, 2014

Hospital Days 1 & 2

It has been a long few days, both seem to run together. Yesterday we arrived at the hospital around 6:00 am. We checked in with surgery, were back to preop by 6:45 and on our way to surgery right at 7:30. Olivia chose mom to be with her while they administered the anesthesia until she was out so I was thankful to be with her for as long as I could. Jeff and I had a short wait as surgery only lasted about 30 minutes. Our surgeon met with us and said everything went great and we'd be able to see Olivia as soon as she started to wake up. At about 8:30 we got to go back to the PACU where we were told we'd be for 1 to 2 hours while the anesthesia wore off. Olivia was in quite a bit of pain but they were able to manage it fairly quickly and well and she pretty much slept. We ended up being in the PACU for over 4 hours because we were waiting on a room so that was long but our room was worth the wait. Our room is amazing. We are in one of the Adopt-a-rooms here and it has to be one of the best hospital rooms ever. It is very spacious, private, has 3 tv's, one of which is definitely a big screen, everything is automated, we have a nice view of downtown Minneapolis and an awesome lighting system that offers quite a light show. After we were settled in we were bombarded by everyone imaginable, most of that is a blur. Olivia was able to do a vest treatment last night with minimal pain, slept on and off most of the night and seemed to have her pain managed okay. Our biggest challenge was to get her to urinate which we finally did last night so that was good.

This morning surgery came in and said the tube area looked good and they started pushing pedialyte through her g-tube. She was also instructed to begin liquids by mouth. All of her meds were and continue to be given through her g-tube. Today has been slow, she was in quite a bit of pain, when she finally started to drink she couldn't keep it down and she couldn't stool as her bowels weren't moving yet so we were kind of at a standstill. Because she had vomited she wouldn't drink and because she couldn't stool, she was in pain. We were told to wait it out and they did order miralax and a suppository. Thankfully, tonight she was able to stool, her pain is being managed well even with tapering the dose of meds. She still isn't eating at all or drinking much but she is getting her fluids via iv and she is getting some pedialyte through her g-tube. We will see how tomorrow goes and hopefully be able start formula feeds,  and go from there. The day started out slow but thankfully it has ended well and both Jeff and I are more at ease. Brother Landen is going to visit tomorrow with Aunt Darci and Braelyn so Olivia is looking forward to that. Grandma Pam visited today which was nice for all of us. We are hoping tomorrow goes better and we maybe have a better idea of when we can go home. Thanks to all for the emails, gifts, well wishes and prayers.