They are finally wrapping things up. A "normal" gallbladder removal surgery takes about two hours so they said Avery would take about four. It ended up taking six. That's Avery for ya. Everything went well. Dr. Smithers was able to do the whole procedure laparoscopically!! Go Dr. Smithers!! They removed her gallbladder and two gallstones from her bile duct. She may not have to go to the ICU, they are going to wait to see how she does after they extubate her. All very good news. Thank you for all the prayers.

Aiden is at home having a grand time trick-or-treating tonight (even in the rain). As shy as he is...you would never know it on Halloween. He does not hesitate to say "trick or treat" and "happy halloween" to get his candy!

Happy Halloween!

The snowstorm has caused some OR cancellations for tomorrow, meaning that Avery is now on the schedule. Do not know what time yet. Sad we won't be able to participate in any of the Halloween activities but glad that they are going to go ahead and get this over with. They are trying to put in an IV right now (Avery is probably not so happy about pulling that picc line out now) and I am packing up all of our stuff. This moving back and forth from one floor to another is such a pain. Please pray that they are able to take out Avery's gallbladder and stone with no complications. We will be back in the PICU for a couple of days, should take about a week to fully recover since they most likely will not be able to do it laparoscopically due to prior surgeries.

We are waiting on the snow and a surgery date. Avery was going to have surgery on Friday (yesterday) but they could not coordinate things. I told them if they can not get her in next week we are leaving and will get it done at Duke or UNC. I was promised that this was a (usually) quick and easy surgery and they could squeeze her in last week. I want it done here but I am not willing to wait and wait when we could be home. It should not take three weeks to have an MRI and then have gallbladder surgery. Avery pulled out her PICC line tonight. She thought it was hilarious.
Hoping for a plan tomorrow or at least by Monday afternoon

I am back in Boston. Kevin is back home. We both had nice visits. Avery was doing really well when I arrived yesterday. Of course I had a bone to pick with everyone because they were not following the plan that we had all agreed upon before I left. Her GI doctor did not want people going up on the calories of her formula very fast, and what do I come back to? Her calories up from 20 to 28 (and they WOULD have done 30 today) in less than a week. Of course her GI doctor is on vacation and there are no notes about this in the computer so I am left fighting them on this with no back up. We had a great morning until she started recthing again. This is exactly why we had agreed not to go up so fast on the calories. I am really starting to question the quality of care she is getting with all these doctors not communicating properly. Not much can be done now since it is Sunday. Beyond frustrating.
From last weeks MRI, they were able to determine that there is a gallstone blocking Averys bile duct. This will have to be removed. Dr. Jennings is supposed to be consulting with some other doctors on Monday to make a plan.

Avery continues to do well. She had a scan of her gallbladder on Tuesday. The surgeon was not very concerned about it but the GI docs want a MRI done. This will happen tomorrow. Please say a prayer for Avery. She will have to be sedated for this test. She is having lots of fun visiting with her Daddy. Finally she is off precautions and can start playing in the play room again. Aiden and I have been having lots of fun at home. We went to the pumpkin patch, painted pumpkins, had a huge movie night, visited friends, and read lots of books. Tickets are all booked. Kevin and I will be switching on Saturday.


Avery and her Daddy

Aiden at the pumpkin patch

Kevin arrived yesterday evening. Avery was still not feeling well after switching back to IV morphine and switching from formula to IV fluids. She also got a rescue dose of morphine and a clonidine patch.
Checked into the Yawkey last night. It was nice not to have to get up a million times to shut off beeping machines but I still did not sleep all that great.
Got back to the hospital this morning to a much happier Avery. It is hard to say what the problem was but I am glad she is back to her old smiling self. They restarted her feeds very slow, hopefully she will continue to tolerate them.
Monday she will have a scan done of her gallbladder and possibly an ERCP test where they take a look at her gallbladder with a scope. It is possible she will need to have some of the sludge drained out or her gallbladder removed.
Avery won't be going home this week (and quite possibly awhile if they can't figure out exactly what is wrong) so I booked my plane ticket back home to spend the week with Aiden. Can't wait to see him and get in some fall activities.

Where to begin. Things WERE going so well that we were told we would be discharged on Monday. Kevin booked a ticket to come up and help us get everything ready to go home.
Then today Avery woke up sweaty, with a high heart rate, sleepy, and retching. They changed 3 different things yesterday so we are not sure what made her feel so bad, could be the higher calorie formula, changing the rate, or stopping one of the meds that shouldn't have.
The new feeding tube came in today so they switched it out and then I took her down for a g-tube study. That went well.
However, she had an ultrasound on her liver/gallbladder the other day that still showed a dilated duct and some "sludge" so she will have some sort of scan on Monday to see if it needs to be taken out. Simple surgery if you have not had all these other major surgeries.
Now we are kind of in a mess on what to do. This may be my only chance to go home and see Aiden for awhile so I may have to go home on Tuesday before we know if/when she will have to have the gallbladder taken care of. It would have been so nice to know they wanted all these tests BEFORE they said we could go home and tickets were booked.

Avery and her "severed leg" that Misty sent her. Doesn't every little girl dream of having a severed leg to play with???

Trying to remind myself of this:

Another good gastric study. This is just the strangest thing. We were all so sure that Avery's stomach would not be emptying quickly enough with her feeds backing up so much the other day.
The plan now is to restart her feeds, move the farrel bag up more, and see what happens.
Avery will need another surgery though. =( Dr. J wants to reposition her feeding tube. her stomach has grown and it is just not in the best place anymore. They won't schedule that until they see how she does with feedings. We do have the green light to feed by mouth again so that should be fun.
Kevin is working on possibly coming up to Boston for a bit so I can go home and see Aiden and just have a break from hospital life. The thought of sleeping in a bed, having real TV, cooking my own food, being able to drive, and not wake up with 8 strangers in my face each morning sounds amazing. I wanted him to be here for Avery's surgery. Surgery day is just so long, stressful, and lonely, it would be nice to let him be here for one. But we will see..........

Today started off early (thank you Avery for deciding that 4:30am was a great time to wake up and play). Thank goodness for a visit from Kara and Jamie (and a pumpkin spice latte) to help jump start my day.What a sweet family, I do not know what I would do without all the fantastic EA families I have met. Avery has been feeling so much better but it does not look like her formula is going anywhere, it just keeps backing up into the bag. She will have a gastric emptying study done on Wed. and that should help determine what type of surgery she will have done. Very sad that she needs yet ANOTHER surgery but hopeful that this will solve her problems and can get us closer to home. Not looking forward to spending another surgery day alone and having to move all my stuff from the 10th floor to the ICU, I really wish they would just reserve this room for us, we have been here long enough. Prayers that this upcoming study will give the surgeon the info he needs to move forward and that they schedule something soon so Avery can start getting well enough to go home.

Avery feels so much better today. Don't know if it is the tube change, being back on the reflux meds, getting meds for the c diff, or all of it combined. She has been awake and I have been very busy trying to keep her entertained. Praying for continued progress!

I swear I should become a doctor. I had to ask and ask and complain and complain for the NP to order labs for Avery. She gave me such a hard time about it and she almost refused to send a sample to see if it came back positive for c diff. All she kept telling me was how much grief they were going to give her (for some reason the hospital is telling everyone to stop sending so many samples to be tested for c diff). Results came back today. What does Avery have? C diff. Again. I knew it.
She has been about the same today. Asleep most of the day, just looking sad and out of it. Poor thing is never going to make it to the playroom. (Can't go to the playroom when you are on precautions, ie when you have a contagious illness).  This could explain a lot about her stomach issues or it could just be one more thing we have to deal with BEFORE dealing with her stomach issues.
This morning Dr. J had come in said he was so sure it was the balloon from the g-tube that was obstructing her pylorus and that if we changed it to some other type of feeding tube that it would solve her problems. I am still going to go on record and say that he is wrong.........
Then the GI doc, Dr. Manfredi came in saying he thought that was only a small piece of the puzzle and that he wanted to try some different meds as well and basically he wants us to live in Boston until this is figured out even thought that could take months and months and months (and no I am not exaggerating). Praying they start the antibiotics soon so Avery can start feeling better and so I have something to do. I feel like I have not moved off this chair/bed all week.

I will try to explain this as best as I can (but I am sure it can be hard to follow if you have not lived it)
Avery is still not herself. She has been sleeping ALL day and still retching. They took her down for a swallow study and it showed no leaks and no stricture (PRAISE GOD). They also did a g-tube study where they put contrast in her stomach and took an x-ray and then took another x-ray later to see how much of the contrast had moved out of her stomach. In an hours time, not much of the contrast moved out of her stomach. Opposite of her study last week that came back "normal". No one from the EA team has come by to talk to me yet (very frustrating). The only thing that I can think of is that her study last week came back great because it was right after they took out her g-j tube (and sometimes that tube can keep the pyloric muscle open, from what I understand). It could be possible that the tube held that muscle open long enough to make for a great study and for her to tolerate her feeds for awhile. Now it is closed again. I am not sure what they will say about this whenever they get around to coming up here to talk with me. It is very likely that she will need the pyloroplasty (stomach surgery). Please pray with us that the team will put their heads together and come up with a plan that will work for Avery.
She woke up for about 30 minutes earlier this evening, smiled, laughed, we went for a stroll. It was nice to see a little part of my sweet girl back.

"Don't confuse your path with your destination.  Just because it's stormy now doesn't mean you aren't headed for sunshine"

I wish I could type that Avery had a much better day, but she
didn't. Today was worse than yesterday with the retching, being
sleepy, and when she was awake she just laid there, no smiles, no
playing. And of course no one has an answer. First they said it was
withdrawls from meds, then they said it was the rate of her feeds,
now they just don't know. Feeds are off and IV fluid back on. GI
study is scheduled for tomorrow. Praying for answers.

What a difference a day makes. Here is a pic from Monday...happy, smiling

and then Tuesday....

Wednesday...............

Every good day feels like it is followed by a not so good day :/
Yesterday everything was going smoothly and on track. I even enjoyed a nice day out with another really great EA mom. Then today. Avery's g-tube was switched to a smaller size which everyone was so sure would make the leaking stop. When we went to change the dressing this morning it was leaking again. There are many risks to going to an even smaller size. I get to hear the words "well, we don't really know why this is happening" AGAIN. Now they are trying leaving out the tube for a couple hours to see if it closes some on its own. Please say a prayer that the doctors here will figure out what is going on and what to do to fix this whole feeding tube issue. Yesterday there was some light at then end of the tunnel and now it has faded again.

Sorry it has been awhile since I have updated this. Avery has been doing well since surgery. They kicked us out of the ICU last week and we have been hanging out on the 10th floor. We are back in our private, spacious room with a view, our own bathroom and the freedom to cruise the hallways. Can't visit the playroom until after the 6th b/c Avery has klebsiella (it can cause pneumonia). Her round of antibiotics are almost done and she hasn't been symptomatic thank goodness. The swallow study went well and she is cleared to get g-tube feeds and eat by mouth. The past couple of days she has been taking 5-10 tastes of baby food. This time around they are giving Avery a medicine to help her wean quicker and easier off of some of the narcotics. The ativan (the one major medicine keeping us here) should be off this week. Now we have to get the feeding thing under control. There have been some issues regarding her g-tube and it leaking. They have changed sizes a couple of times and hopefully today they have found the one that fits the best. No one has really given me a timeline, I suppose it all depends on how Avery does with her feeds in the next week. I think they would prefer if we just moved here, I think thats what I would prefer sometimes (with Kevin and Aiden of course). So it will be a matter of the surgeons/doc telling us when they feel its ok for us to go home and when we feel comfortable leaving. Going home with no answers on how this happened is very hard.