It probably was the longest 4 days in the hospital that we have ever had in the hospital since the beginning of time. I know it sounds crazy, but it really felt like that.
Wednesday Morning started early heading to the OR to get propaphol to get the foley cathether placed in. When she was done and started to wake in the OR area, she started to flip out and I told them that they needed to get her to her room before she flips out and pulls out the foley and then they will need to place another one. So, they quickly moved her back to her room and gave her Versad and was still very whiney. The doctor thinks she received too much at one time and this caused the crying the way she was. However in order to start the MIBG Iodine 131, Emily had to be calm. We decided on Ativan, since we had used this in the past for stem cell and it seemed to work well for Emily and she didn't have major side effects to it. During the time of getting the medication adjusted and getting Emily used to have to staying in her bed due to the foley (which she was crying that it hurt and she felt like she had to go to the bathroom and wanting it out) we had to meet with the Nuclear Medicine Safety Specialist who spoke to us about the precautions of all the do's and don'ts. Wearing booties on our feet in the room, to wearing gloves and a gown when we needed to touch her, to things in the room, to wearing a meter at all times in the room. If anything in the room had to much radioactivity it would have to be thrown away. Anything that Emily touched or worn would go in the trash. Thank you Amanda for getting Emily several things to do in the hospital along with night clothes that we didn't have to worry about bringing from home and throwing out. The whole thing of things being used in the room scared me so much, that I would never get on the computer in fear that I would have to throw away my computer. Once the ativan settled in, they were able to get the MIBG IV iodine started and once this started, the precautions started.
The cart that was rolled in with the MIBG iodine was rolled in all covered up and the IV fluids in a lead box. The foley where the fluid was collected was also placed into a lead box right besides Emily's bed. They felt it was best that Emily poop in a pan on her bed, however Emily wouldn't have that, so she would just get up and go and then need to get right back into bed. Around her bed they placed lead walls and we were to stay behind those lead walls. Emily was calm during her injection and once the injection was completed, Emily started to cry for my arm. Emily likes to have her binky and rub my arm. At one point the nurses thought it might even be better if I stay out of the room all together if Emily was going to be like that.
The injection of the iodine was painless, and Emily didn't even know it was happening except for the the wrapped cart, that was taken out when done. They checked her level indicators and Emily was at 21. We were happy with this number, because this hopefully meant it would be quick and time out of the hospital would be fast.
The time wasn't fast at all, it was the slowest that I have ever had with Emily in the hospital. The first night after the injection on Wednesday was possibly the longest night because she was up all night crying that she wanted me to lay with her, for her to rub my arm, several times I would have to walk out of the room just to collect myself and then come back because it was hard on me not being able to give her what she needed when she felt lonely in her bed. Also she had a fever over night which threw in extra medicines of cephapim every 8 hours and gentamicin aside from the zofran, ativan, SSKI drops and the bladder spasms medicines.
Thanksgiving Day her levels went down to 9.5, they were shocked at how quickly they went down. I was often trying to get Emily to drink something to help get the iodine out of her body. The iodine in her body was to leave her body quickly and only attach to the parts in her body that are NB. We were told before this started that when she is done and has her MIBG to see if it attached to the NB in her body that we may even see where she has NB in other places in her body that we were not aware of. Emily's MIBG was schedule for Friday at 3 PM because it had to be at least 48 hours from the injection.
Thanksgiving normally is the start of the holiday season, but it honestly didn't feel like the holidays are approaching being in the hospital and set with a new type of therapy to try and rid NB from Emily's body. Actually the holidays are hard this year, and the mood isn't even there at the moment. We were all about the holidays last year and then we received the devasting news. As the day went on, my friends from VA ordered a Thanksgiving dinner for Doug and I from City Tavern, so Doug went and picked that up. It was great food and we really appreciate you guys doing that. But it was hard to sit in the Ronald McDonald Room down the hallway and eat a Thanksgiving meal and our kids not be apart of that meal with us. While we know that we will have a Thanksgiving meal at home with the kids, it is still hard and then to read people's updates on facebook, how their lives are normal and they are moving on and putting up their Christmas tree and enjoying the holidays with their kids. It sucked actually!
Thankfully Friday morning Emily's levels were at 3.2, and she would be released to go home. However they had to do a CBC before she was released and the MIBG at 3PM. The CBC showed her hemoglobin dropped from 9.7 on Tuesday to 7.9, so they went ahead and gave her blood. During the transfusion she spiked a fever which caused for another set of blood cultures and stopping the transfusion. This all happened right before the MIBG, so they felt she has received enough blood and would be fine.
The MIBG was the quickest one we ever had which was nice, because Emily didn't want to do the scan at all. We are not sure if there are other spots or not, because we really couldn't tell, however we could definitly see the spots in her femurs and iliac bones. So, we just wait to hear back the results of the scan. After the scan, they had to scan the levels of anything that we were taking out and make sure that it didn't have any radioactive levels in it and if they did, they couldn't go. I thought it was interesting that they had to follow the rules of the NRC (Nuclear Regulatory Commission). Thankfully everything that needed to come home with us didn't have any problems and we were able to leave. Instead of heading home, we decided it would be best to stay in New Jersey at the campground so we were close in case anything happened and Emily had another temperature and we would need to take her in.
Emily was absolutely miserable leaving the hospital, she was very whiney, upset and if anything didn't go the way she wanted it, she would cry. This is pretty much how the stay in the hospital was, but even moreso on the way from leaving.
I am thankful that we had the campground to come to, because Emily has been very weak, miserable and very tired. Last night she was asleep by 530 from extreme exhaustion and then woke up about 10 and was up for a little while. She hasn't had a temperature since being out of the hospital, but she isn't herself. She does have a cough and some cold sores on her lips which got really chapped while being in the hospital.
Today we are on the way home and it has been a long day on the way home with traffic because of the holiday weekend and everyone else driving. We are ready to be home and sleep in our own bed and i have to be honest here, I am ready to head back to work tomorrow. I am ready to have all the kids together, Brianna home and Jessie home and at least try to be somewhat normal for the next 6 weeks that we are home before we have to head back for another MIBG to see if this therapy worked. Emily will have to go to the clinic twice a week to check her counts at VCU and we will be awaiting a call from CHOP on the MIBG results.
Hope every had a great Thanksgiving. We are thankful to all the wonderful people out there who have been so kind and helped us during this time. Continue to send your love, thoughts and prayers that this therapy does what it needs to and we can move forward to Round 2 and then back to antibodies where we were supposed to be.
Have a good night and I hope to update as the week goes and how Emily does with her counts. We are worried about her hemoglobin and platelets and hoping that these don't become an issue, but only time will tell how that will go.