The Hanway Family

Abby came through surgery wonderfully. They were late getting started, so it was nearly 4:00 by the time they took her back. She was out around 7 pm. They took more than a golf ball sized piece of tumor. She is in a fair amount of pain today, but we have been able to keep her comfortable and she has wanted to get out of the room some. Thankfully, she has not had a single gagging/coughing/vomiting episode today, so surgery has accomplished what we'd hoped.

Her next surgery is scheduled for the week of May 9th, though we don't know the exact date yet. This surgery is expected to last 12-13 hours and will involve moving tissue from another part of the body in order to support the structures that are left due to the large size of the tumor. We will update with more detail as we get it.

Just a quick note that Abby is scheduled for surgery at 2:30pm tomorrow. Because they are unable to get her in for her removal surgery this week, she will have a debulking done to remove the portion of the tumor in the back of her throat in order to make her more comfortable. We are still hoping that she will be able to have her removal surgery next week, but it is proving difficult to get everyone (ENT, neurosurgery, plastic surgery) coordinated, so there's no telling when it will happen.

Please pray that Abby comes through tomorrow's portion of the surgery well and has minimal recovery time.

We have most of the results back from Abby's bronchoscopy. There is no sign of fungus, which is great news. Unfortunately, the cloudy secretions in her right lung were found to be aspirate. This was because some of the organisms that were found were full of iron and lipids, which meant that it was from her feeds.

On Thursday, she had a g-tube study done. This was done to determine at what point she begins to reflux. It showed that at 60 mL, she refluxes halfway up her esophagus. Because her feeds are 180 mL, she definitely refluxes all the way to the top of the esophagus. Due to this, her feeds were discontinued and the doctors told us Abby was not allowed to eat or drink anything, no matter how thick.

Because they discontinued Abby's feeds, she was not receiving any nutrition. The options were to put her on TPN or to convert to a G-J Tube. For TPN, she would have to be hooked up through her port 24 hrs/day when we go home. That is not an option, so her G tube was converted to a G-J tube. This means that she now gets fed directly into her intestines and will eliminate all the vomiting of feeds. Right now, she is being fed 24 hrs/day through the G-J tube, but we are hoping to work down to 12 hrs/day.

Really, the cause of her vomiting is the tumor and the vomiting won't improve until she gets her tumor removed. As of right now, the plan is to remove the tumor either this coming week or the first week in May. We feel that it needs to be this week because vomiting 8+ times a day in addition to the hours of coughing and gagging that go along with that just is not an option. Her surgery will probably last around 12 hours and will involve at least ENT and neurosurgery, but possibly other disciplines.

Please continue to keep Abby in your prayers because she is not dealing well with all the vomiting and coughing.

Abby came through the bronchoscopy like a champ. It went well with no complications. Her left lung was clear, although they noted she still had bronchomalacia on that side. Her right lung did not have any obvious signs of infection other than cloudy secretions. These were sent off to the lab and we are awaiting the results. The doctors feel confident that the tests will show some type of infection and that we will be able to find the right medications to treat it.

The good news from the oncologist is that she's no longer the sickest kid on the floor. However, we may still be looking at several additional weeks of hospitalization while they get the infection under control.

Tonight the tumor board meets to discuss Abby's case and hopefully we will get a better idea of what the plan is regarding her tumor and its treatment tomorrow.

Abby did not have a good weekend. We were all set to go home on Saturday morning because she was finishing her last dose of the 10 day course of antibiotics. On Friday night, she started spiking a fever. She stayed at 104 and 105 most of the weekend and the Tylenol would only take it down to 102. Because she's been on antibiotics for so long and her history of fever with no cause over the last two months, they called in the Infectious Disease doctors. Their thought is that she has a fungal infection in her lungs and that the tumor growth in the back of her throat is also the result of a fungal infection. They sent a lot of blood work off this morning to look for different types of fungus.

In addition, they also want to do a bronchoscopy to take a visual look at her lungs and to take samples to send off to the lab. If all this shows that it is a fungus, it will take several months of anti-fungal meds to get rid of the infection.

Although it's not common to have a fungal lung infection, it's also not uncommon to see them in immunocompromised kids like her.

We received the early results of Tuesday's MRI. We know that the tumor showed significant shrinkage in the upper areas, but we don't know if it is down away from the brain. The lower area, as we already knew, is still growing. I don't expect to hear anything else until the tumor board meets next week to discuss her case, but I do know that removal is one option that will be discussed.

Her ENT has already said that removal is the path that he would like to take. He, along with a neurosurgeon, would perform the surgery. I don't want to get my hopes up yet about being able to remove the tumor, but to do so would be an unbelievable weight off my shoulders. It will be a long wait until next Friday.

We are currently on our second hospital stay since we were able to go home. Of course, both hospitalizations were for fever. She has some infection in the upper lobe of her right lung, so she's being treated with antibiotics, inhalers, and more chest percussion therapy. Thankfully they are using a vibration machine for the CPT this time and it is going so much better than the bopper. This last fever was the first one to scare me because she also had a lot of thick, yellow drainage and was having a lot of trouble keeping her oxygen saturation even in the low 90's. So this time we all made the trip to Little Rock. Tomorrow will mark a week that she has been in the hospital this trip. The last one was only two days.

I am thankful that Abby's oncologist came on call on Saturday. This is the first time that we have seen him in over a month so he is doing some extra testing. She finally got a blood transfusion because she was severely anemic and she seems to be feeling much better after that. Yesterday she also got IVIG again to help protect her against viruses. With the exception of one fever, she didn't have a reaction to it this time.

Abby had an echocardiogram today because her heart rate has been high ever since she got her trach. Pre-trach heart rates were around 110 while her post-trach rates are 150's and 160's. I am glad to report that her echo came back normal.

We also had ENT look at the tumor breakthrough that we have known for a few weeks had happened. There may be some things to come out of this, but for right now, she will be having an MRI tomorrow morning and we will go from there. We are hoping that she will be released from the hospital tomorrow and that her infection will continue to clear up and the fevers will stop. It would be really nice to spend a week at home - something that has not happened in the last 11 weeks.

Alexis had her 9 month check-up last week. She is doing wonderfully. She weighed 21lb 8.5oz (90%) and was 28.5in (75%). I can't remember her exact head measurement, but it was in the fifth percentile. For some reason my kids just have small heads.

She is doing well in all areas. She is close to crawling and can drag herself forward on the ground. She is starting to pull up on everything and is trying to cruise around a little bit. She's still pretty wobbly and I don't expect her to start walking any time soon.