The Hanway Family

The day that I never thought would come has finally arrived. Abby finished her radiation treatments on Wednesday and on Thursday night, Abby was released from the hospital. We drove home that night, not wanting to spend another night away from home. We are so grateful to be back home, though we are adjusting to a new normal.

Abby now sleeps in our bed so that we can watch her monitors and make sure she stays hooked up to all her machines. She is hooked up to a pulse ox whenever she is sleeping or we are driving. At night, she is also attached to a mist collar to help deliver extra humidity to her lungs. This has an air compressor attached to it, so it's fairly loud. She also has a portable suction machine that goes every with us and it is very loud. Luckily it hasn't woken up Alexis yet. The last large piece of equipment that she has is a portable oxygen tank to use in case of emergency.

Unfortunately, Abby has atelectasis right now. This means part of her lung is partially collapsed. They believe this was caused by the fast, shallow breathing that she has been doing since her surgery. We are hoping this is what has been causing her high heart rate and fevers. We are doing chest percussion therapy to help this portion of her lung expand.

Last Tuesday, Abby had a follow-up with her opthamologist and he was very happy with her right eye's progress, even without doing any patching while she was in the hospital. At times, her right eye is fully open. It is tracking with her left eye, but does not have the same range of motion as the left one yet.

We will return to Little Rock next Friday for overnight chemo and will continue to go to Little Rock every Friday, plus numerous other appointments.

In preparation for going home (possibly next weekend), we must set some rules for visiting our house. These rules are to protect Abby, so we must require all visitors to follow them. Nearly all these rules are common sense and come from the website http://www.tracheostomy.com/.

• Give advance notice of all visits.
  
  
• Do not visit if you have had or have been in close contact with someone who has had a fever or any sort of illness (intestinal, cold, etc.) in the last three days.
  
  
• You must use hand sanitizer or wash your hands with soap and water when you first enter the house and any time you use the restroom, sneeze, cough, eat, etc.
  
  
• Take off your shoes when you enter the house.
  
  
• Kleenexes are single use only. Do not use them more than once.
  
  
• Do not cough or sneeze into your hand or into the air. Please cover all coughs and sneezes with your arm then promptly wash your hands.
  
  
• Absolutely no smoking on our property or before you visit.
  
  
• No strong perfumes or other strong scents.
  
  
• No items that shed excessively.
  
  
• No latex balloons.
  

If there is anyone in the DeQueen area that is proficient in tracheostomy care (suctioning, changing trachs, dealing with mucous plugs, proficient in trach modified CPR) and would be willing to babysit if the need arose, please leave a comment here.

Abby is currently in PICU after having surgery to give her a tracheostomy. We were hoping that this would never happen, but unfortunately it has. On Tuesday, the anesthesiologist at radiation had trouble intubating Abby. He felt that the tumor had grown overnight. We met with the ENT the next day and he agreed that a tracheostomy was probably needed. Her airway was not compromised, but the problem comes when intubation is needed because of the tumor's size and location. Surgery was scheduled for Friday morning.

She did well in surgery. After looking at the tumor, the ENT actually thought that the tumor was smaller than it was during her debulking, but that it may have shifted locations slightly. This would be good news if it means that the tumor isn't growing.

The tracheostomy is going to be a huge life change. We won't be able to leave Abby with anyone who is not experienced in tracheostomy care. There is an entire checklist of things in which we must be proficient before leaving the hospital such as suctioning, changing the trach tube, trach modified CPR and general trach care. There is a huge bag of things that must be with us at all times. Right now, I feel like I won't be able to sleep at all while she has this.

Thankfully, Abby will be able to have a special valve on the trach that will allow her to talk. I don't know what I would have done if she couldn't talk at all the entire time she had the trach. She will also be able to eat and drink normally.

The doctors keep emphasizing that the trach is not permanent, but that she will have it until she has surgery to remove her tumor.

We are looking at about a week-long hospital stay in the PICU, which is a very stressful place. We are hoping that this will be her last non-routine hospitalization for awhile. Radiation has been suspended from last Tuesday until probably next Wednesday, so we will hopefully complete radiation the week after that.

Let's hope the fourth time is the charm. After Abby's admission to the hospital on Monday, we were released on Wednesday. They never found a cause for the fever. On Thursday morning, she developed another fever. It was staying right around 101, so we decided to just watch it at home. Right at bedtime, however, it began to go up again very quickly and went up to 102.4. At that point, Alexis was asleep so Leonard took Abby to the ER on his own while I stayed with Alexis. When they reached the hospital, they didn't show her to be running an axillary fever, but her heart rate was in the 180's. When they took her temp rectally (a big no no for chemo patients, so I don't know why the did it), she was running almost 102. Based on her heart rate, she was admitted to the Intermediate Care Unit, which is a step down from ICU.

On Friday, they went ahead and did radiation, thankfully. Her fever also broke and never returned. She has been having a lot of problems with secretions caused by both the radiation and the breakdown of the tumor, so they decided to keep her until Sunday to watch her breathing.

We also got the results of last Wednesday's MRI. It contained both good and bad news. The good news is that the tumor is shrinking, overall, especially in the eye and brain area. It is still up in the brain cavity, but is smaller in size overall. The bad news is that the tumor still shows growth in her airway area. We don't know the cause for the growth and her oncologist and the radiation doctor are supposed to be coming up with a plan for how to treat this. Abby only has seven more radiation treatments out of the original 28, so we don't know if they will extend radiation or increase the dosage in that area. Hopefully they will come up with a plan in the next day or two. If it comes down to it, they could always do a tracheotomy, but we aren't to the point of discussing that option yet.

We are hoping to avoid any fevers for quite awhile, especially since her counts are good and they have been unable to find a cause. Alexis also started to come down with a cold today, so we will have to try and keep some distance between her and Abby.

On another good note, Abby's speech continues to increase. The nurses were even able to hear her talk some this stay. They even heard words other than no. It is so nice to have her answer questions about what she wants and where she hurts. I love hearing some of her phrases again such as "What's that? That baby." Then we ask what baby's name is. Her response is always "Alexi". Of course I'll also never tire of hearing the word Mommy.

Alexis finally had her first tooth come through yesterday, a day short of her 8 month birthday. We knew she was teething because we could see the tooth under the gums, but we didn't expect it to happen so quickly. She never had any of the fussiness or runny diapers that Abby had with her first teeth. I didn't even know that the tooth had come through until she bit down on my hand and it was sharp. I'm guessing that number two will come through soon as well.

Well, Abby has been back in the hospital since Monday evening. She spiked a fever again on Monday afternoon. It was up to 101.3 when I took it at home, but by the time we made it to the ER, it was down to 100.2 and down to 98.8 when we got up to the room. Her white blood cell count was high, which could either mean infection or it is the Neulasta working. It is probably the Neulasta because she's not neutropenic and her counts are good. She will hopefully get out today because she was fever free all day yesterday.

Yesterday was actually a really good day for Abby. For the first time ever, she actually wanted to go to Camp Wannaplay and they had to kick her out because they were closing. It was wonderful to see her playing and having fun.

Yesterday also saw our first eye appointment. She did great and was even playing with the doctor until it came time for the actual exam. The eye itself looks good, but they still don't know if she has vision in her right eye. We are supposed to patch her left eye for 1-2 hours a day and see what she does. They said she may open her right eye more or move her head to try and look out of it if she does have vision. If she doesn't do either of those, then she either doesn't have vision or she's simply not able to open that eyelid enough to see out of it. We go back next Tuesday for a follow-up.

Today Abby has her MRI to go along with her 20th radiation treatment. We're excited to see how the tumor has changed because it definitely seems to us that it is shrinking. It will probably be Friday at clinic before we get any results.