Posted Mar 15, 2010 9:09pm
You know something’s really wrong when you see a team of doctors and nurses running down a hallway and toward a patient’s room. I vividly recall my first sighting of a herd of green scrub colored medical personnel sprinting just like that the day after Chase was admitted to the NICU last year. It certainly makes your heart stop for just a second, even if you know they’re not running to your child’s room.
Unfortunately, I got to see such a team running into Chase’s hospital room Sunday afternoon! But before I get to how that happened, let me give you a recap (based on emails from my Mom, Glenda) since last Tuesday when I left the hospital.
You may recall that before I turned over the reigns to her, Chase had spiked a fever of 102, something that I do not recall him doing since he was in the NICU last year when he hit 104 after beginning chemo. Fevers, as I’ve stated before, are a fact of life after your counts hit the bottom of the barrel. Without ample white blood cells to fight off infection, you’re vulnerable to even bacteria found in your own body.
The night I left, due to the fever, Chase unfortunately got sick around three in the morning. I knew he had not eaten anything, in probably 24 hours, so when I heard that he had thrown up, I cringed. He’s even mentioned to me since then that if he has to throw up, he’d rather do if after eating or drinking than anything else, because otherwise it hurts.
His fever continued to spike and recede (with Tylenol) again and again over the next few days. He had a couple of episodes of rapid breathing, like he did the day I left, which can be attributed both to the fever and low red blood cell count since they carry oxygen. That also can contribute to nausea, which led to him getting sick again the following night. Just an aside here. I love being with William at home, but knowing Chase is so ill at the hospital makes me feel guilty for not being there. I know my mom is taking great care of him, but it’s still difficult. I tend to feel that way no matter whether I’m at home or at the hospital, but it’s doubly awful when Chase is sick.
Thankfully, Thursday he received some much needed hemoglobin (a blood transfusion). My mom mentioned that he was breathing much easier after that and had a bit more color to his complexion, too. The fever has left him really weak though and completely without an appetite. By Thursday, he had eaten less than 500 calories since Monday night. Although he did gain a bit of weight after eating so well over the weekend, that gain is no doubt gone. It’s difficult to tell his real weight though since he’s back on fluids. They always make him appear to weigh anywhere from two to four pounds more than he actually does and it takes about a day of being off the pole to get a true weight.
By Friday, his fever appeared to cease spiking and he had some periods in the afternoon where it was actually within normal ranges. That’s typically a sign the fever is dissipating and will be gone. Or at least in the past that’s how it has worked. In spite of that, they were discussing whether or not to begin TPN, which is intravenous nutrition. It’s definitely not the ideal way to get your food and nutrients, but until his appetite picks back up, it’s our best option. The last time Chase had TPN, last September, it gave his appetite an eventual kick start that allowed him to get off of it after less than a week.
Saturday, unfortunately, wasn’t greeted by a feverless day. In fact, his fever spiked again back up to 102 late Friday evening into Saturday. It’s really frustrating, because all of his blood cultures have come back negative, which is great because that means no infection. However, it also leaves us in a very frustrating position of wondering what the heck is causing the fever! Even Chase is frustrated and sick of it all.
I knew he had been mainly sleeping the entire week, but I was hoping he might perk up a bit once I got to the hospital, especially since I brought a movie he had been wanting to see along with a surprise present. When I got there, he looked pretty pitiful. I could see in his eyes that he felt completely miserable. There was no other way to describe it, and I felt sick for him. All I wanted to do was crawl into bed and hold him, too. His eyes described it all, and to top it off, I think they may have recently given him benadryl.
When he’s tired, but trying to still stay awake, he tends to keep is left eye open and his right eye closed. I tease him that he looks like Popeye. Even he doesn’t know seem to be aware that he’s doing it or why, and I can’t help but chuckle when he does it. He was trying to stay somewhat conscious and talked with me while I unpacked everything. But he really woke up when I handed him the N-Strike Recon CS-6 Nerf gun that one of the Media Specialists in my district sent him (Thanks Elise!!).
Oh, and what a hit it was!! He had complained a couple of weeks ago about losing a similar gun to another kid at Bingo, and to add salt to the wound, the other child wasn’t even a patient! Turns out the CS-6 could wipe the floor against just about any other gun, including the one from Bingo, which had him grinning from ear to ear. For the longest time he didn’t even open the box, quite content to just hold it and admire the pictures on the outside. To get a feel for the size of this thing, be sure to see the pic of him and the gun in the photo gallery.
Ann, his nurse for that day, was even getting Chase to smile by telling him stories about all of the pranks other patients had played on her and other unsuspecting nurses. There was a definite glint in his eye as he listened, and I can only imagine what he was thinking and how that new gun might play a part in it. Thankfully, I have not been a subject of target practice. I did create a crude looking target that I taped to the cabinet in front of his bed. He was delighted and I was surprised at how accurate it was - the gun, not the target :) I have no idea what plans or ideas may be stirring in that head of his, but I can tell, even as bad as he feels, that he would dearly love a few live moving targets to shoot.
After everything was unpacked, I sat on the sofa in the room, but was soon beckoned by Chase to come sit with him in bed. I kind of figured that was coming, but didn’t want to ask him if he wanted me there. Begin 14, it’s not exactly cool to be cuddled up with your mom, but that night he didn’t seem to mind. At least he didn’t until in walked Robert for the night shift. Chase made some comment like, “Don’t you make fun of me.” Which to Robert is like giving a drag racer the green light. Chase would have been better off not saying a word because Robert started in on the, “Awww...look at Chase all cuddled up with his Mommy,” and then some. From my vantage point, I couldn’t see his face, but I knew he had to be turning red. Embarrassing Chase is just too much fun.
We ended the evening by watching the movie Old Dogs. A nice little bit of light hearted entertainment, and for Chase the whole Seth Green and the gorilla scene iced the evening. I can’t begin to explain how wonderful it is to see him smiling and hear him laughing even as miserable as he was.
Sunday, things went far differently. Before I was even fully awake, I heard one of the doctors talking to Chase about a CT scan. Ann, his nurse, told me a short while later that due to the extended time of his fever, they wanted to do a CT scan on him to see if perhaps there was any fungus causing it. Apparently, the blood cultures they run don’t work on fungus and a CT scan is the only way to detect it. Chase has never had a CT scan, which seemed to surprise everyone around here. Given that he was inpatient for so long last year, they expected him to have had at least one. Because he’s a CT scan newbie, we had to watch a little movie about it that honestly does a heck of a better job scaring you than being reassuring. Chase went from ignorant of the process to being pretty sure he didn’t want anything to do with it.
Because every effort is made to get him up and moving, we walked the short distance to the elevator (right before the Aflac lobby) to go down one floor for the scan. That short walk about did Chase in. He had to stop and sit for a couple of minutes to get his breath back. Thankfully, the rest of the walk, once we hit the 2nd floor, was even shorter, but he had to keep his arm around me for support the rest of the way.
The scan itself lasted no more than 15 minutes. The machine was pretty cool though. You’ll have to check out the picture in the gallery of Chase inside of it. If he was still worried about the procedure, which he said he wasn’t, it was overshadowed by the fatigue from the short walk. At least he was able to lay down and relax. The solution they use to illuminate anything in the scan turned out to just be really warm when it went into his CVL. According to the video, it could potentially burn, but there was no discomfort. And to make him even happier, they took him back in a wheelchair so he wouldn’t have to walk.
Instead of waiting for the results of the scan, they decided to add a more powerful antibiotic that targets a broad range of fungus called Ambisome. As with many other medications, there are side effects and this one was no different, one of the major ones being chills and shivering. Benadryl would be given along with the medication to counteract it though. Can we never get away from the blasted benadryl???
Ann had Chase hooked up to the bendadryl first, and as I was standing by his bed, she started the pump with the antibiotic. Chase had been talking, but stopped suddenly and his hand went to his throat. His face was pinched, went red, he could barely talk as he told her that it hurt to breathe. She reached back for the pump and told me to hit the nurse call button. She yelled for a couple of nurses, a doctor, and epinephrin. Although Ann was keeping her cool, Chase was visibly frightened and I felt like I was about to be sick.
In less than 20 seconds that herd of medical professionals I spoke of earlier came busting through the door - two doctors (three if you count Dr. Olsen who stayed in the hall), and three other nurses in addition to Ann. Having no idea what they would need to do, I quickly backed away. Chase had turned clammy, his face lost its color, and he broke out in a cold sweat. And me? I haven’t felt that helpless in quite a while.
Thankfully, Ann turning off the pump as quickly as she did and with benadryl already working, there wasn’t a need for any further intervention. Only 2.55 CCs managed to enter into his system, which is equal to about half a teaspoon, but it was more than enough to cause his airway to constrict so breathing was painful. Chase and I were still pretty shaken by the whole experience, but he’s fine and they’re now using a different medication. They’re not calling his reaction an allergy, but it will be added to his red bracelet regardless.
The rest of the day he slept and slept, which was about all he could do against the fever. That and he’s got this annoying little cough that started a few days ago. It’s mostly dry, but fairly persistent and makes getting to sleep not so easy. Just to show you how sick and weak he felt, some of the larger dogs were downstairs visiting, something Chase always enjoys going downstairs to do, and he didn't even consider it.
Monday, today, has definitely been MUCH better!! The fever appears to be history and as of seven o’clock tonight hasn’t plagued him yet today. Praise the Lord!! He’s still very weak, but he is getting around better and is asking for food!! They still have him on vancomycin, that new antifungal med, and benadryl, which he will remain on until he’s been fever free for at least two days I think. Colleen confirmed that his CT scan was negative, another blessing, but they will start him on TPN tomorrow. He gained quite a bit of weight and muscle mass while at home, and they want to prevent him from losing it. Although his caloric intake has been very small today, everything he has been food he has asked for, not offered by me. When he’s asking for food, that’s an incredibly positive sign!
It’s hard to believe that just this morning he didn’t look much better than he has since last Tuesday, but now he’s watching TV and smiling. Oh, and he also voluntarily walked down to Bingo, which is no short distance either. He kept an arm around me for support, but had he even walked a quarter of that distance I would have been thrilled. I’m praying the fevers are behind him and that all we need to do is wait for his counts to rise so he can go home for a nice break before BMT.
Speaking of BMT, David and I met with Dr.Haight (I think that’s how you spell it and it’s pronounced like ‘hate’). She will be Chase’s primary BMT doctor while he’s under their care. She was very nice and was able to answer all of our immediate questions, most of which (from me) were about William’s part in this. He’s very anxious about how they will harvest his bone marrow, but it appears as though he’ll get his wish to be knocked out. I hope that will ease his mind. Speaking of William, I spoke to him today and he wanted to know how much longer until Chase would be done with all this “stuff”. There was a definite tone of irritation in his voice, which said to me that he wants his brother home just as much as Chase wants to be there.
So for tonight, we’re just going to relax, enjoy being fever free, and hopefully get another three or four hundred calories in him. Thanks to the anonymous snack gifter who struck again, he’s got fresh Twinkies to much on!! Thank you Snackerator :)
And thank you everyone for the continued prayers and support!! We’ve been so blessed to have all of you lifting Chase up!! I posted a few new pics, including the CT scan photo, so be sure to check them out.
Thank you and God Bless!
Caroline
No comments:
Post a Comment