Friday, October 03, 2008

The Flood Gates Have Opened - Prayer Request

I've been trying to be brave all week and it's finally all catching up to me. First it started with Jessica falling off the horse and getting kicked. Her leg is still very swollen, bruised and sore. She has not slept well since then and then the last two days/nights she hasn't slept for more than an hour or two at a time. She finally told me that she keeps reliving the accident again and again and again. Last night she dreamed that she was underneath Penny (the horse) and was getting kicked in the head, stomach, etc. She didn't tell me about the dream, she just wouldn't go to bed or when I would finally get here there, then she would get up. I finally was able to get to bed for the first time at 7:30 AM! Then she got me up at 10:30 and then went back down at around 11:30. I kept getting calls from the nursing agency... first they said our aid had called off because her daughter was sick. I told them that I desperately needed a nap so they tried to find someone. Jess had finally gone to bed at that time so I decided to wait a few minutes for them to call back. 20 minutes later they said they had someone and she was on her way to our house right then but could only stay until 3:00. That was ok - I just needed a couple of hours that I KNEW I could sleep. I stayed up to make sure that I could let her into the house so the door bell wouldn't wake Jessica up. 30 minutes later the nursing agency called back and said that the aid had locked her keys in her car and couldn't get them out so she wasn't coming after all. Nobody else that Jessica knows was available so I told them to not worry about it. As I was finally getting ready to go back to bed at 2:00PM and trying to figure out if I should wait for Brandon to get home from school (at 2:25 or so) Justen came home and then was about to leave again. I asked him if he could stay just long enough to let Brandon in so I could go to bed when JESSICA'S DOOR OPENED AND SHE WAS UP AGAIN!!!!!! I wanted to just sit down and cry right there. I got her all settled, lunch fixed, drink in hand and she was set up in the recliner in playing the Wii. I told her I definitely HAD TO SLEEP. I was able to get about 2 hours of sleep before being interrupted by an "urgent" phone call. I took the call, laying in bed, and afterwards just started sobbing. and sobbing.

I'm upset that Jessica is having such a hard time dealing with her accident. She is so traumatized by the accident but she is trying so hard to be brave. She started crying this evening shortly after I had my major cry (I cried alone. No reason to upset her any more than she already is.) So I teared up with her and let her cry. We talked it out. I told her it's OK for her to cry and be scared. She said that part of her wants to ride Penny again but another part of her doesn't. I told her that was perfectly normal and not to worry about it. She will not ride any horse until she is all better so she doesn't need to be fighting with herself in her head about it. Just relax and get better. Tonight she started picking at some scratches on her leg and I told her to stop. She has really been picking at her arms and face the last couple of months and there's no way she needed to mess with her hurt leg. She didn't listen to me and I fell apart. We both ended up crying and then settled down. I finally got her to bed and thankfully she stayed there. I guess it was a good thing that I gave her an extra anxiety medication and two oxycodone. She sure needed it.

Lastly, I have been very upset at her GI doctor. He NEVER CALLED ME BACK! After the CT scan - A MONTH AGO - his nurse called me and told me that there is some narrowing of the arteries that go to her gut - Ischemia of the bowels - and there's nothing they can do about it. Try to treat the symptoms. I posted about this here. Here's part of what I posted: "Do I offer her more morphine? What about the conversation I had with Dr. G about how much time we have? He offered to call Dr. V (Jessica's new pediatric cardiologist) and discuss it. I wanted to talk to him about whether it is time to put her back into hospice. "I'll remind Dr. G about your conversation and find out when he wants to see Jessica back in his office."

So neither the GI doctor nor nurse have called me back. We had an appointment with Jessica's peds cardiologist on Tuesday so I talked to him about it then. Dr. V went over the CT scan report and said that yes, there is some narrowing. No, the GI doctor never called him . I bet the nurse never gave him the message. What are we supposed to do now? Well, Dr. V. is going to contact the GI doctor for me and find out what the heck we are supposed to do. The GI doctor has Jess on 4 meds.... who is going to follow her for those? I have no clue when - or IF he even wants to see Jess again. (I feel like we have been pushed out of the igloo and onto the ice... out into the dark cold.) The PC also said that if we want to, we can talk to a vascular surgeon to see if they would want to try to open up Jessica's arteries that go to her gut. It would be similar to what they do with the pulmonary arteries - balloon or stents.... only Jess doesn't have access to the arteries through her groin nor her right arm due to cut-downs they had to do when she was so young. It's probably not something we would want to do anyway but the PC doc kinda talked me into at least just talking to them. If the vascular surgeon could even just look at Jessica's CT scan and see whether her arteries are even large enough to do anything with then we would know whether we even had that option and go from there. Karl has been working such crazy hours that I haven't even had a chance to talk to him about it much.

Also, Jessica's blood is getting really thick and when we see him in about 6 months we may have to do a treatment... they remove blood and replace it with albumin. She is at high risk for a stroke and they don't want it to get beyond a certain number. She is almost at that number. When the blood doesn't have enough oxygen it get thicker and thicker. We have to really watch it.

You see.... not only have I had a stressful week with Jessica but we found out on Tuesday that Marcus's chemo isn't working and he has less than a month left to live. He is already having difficulty swallowing and getting short of breath. I called Karen and talked to her. She seemed to be handling it quite well - at least right at that time. I know how these things go... you can feel strong one moment and falling apart the next.

It was just over 4 years ago that we had to place Jessica into a hospice program. Jess was coughing up blood and it was getting worse. The many tests showed that this was being caused by collaterals bursting and bleeding into the lungs. Any one of these events could be fatal. Some days it would happen up to 10 times a day! Other days she wouldn't have any. It was the most horrifying thing we have ever experienced and poor Jess would just wail because she was so scared - choking on the blood, gasping for air as she coughed up the blood. She was dying. She was too weak to get out of bed many days and on other days she would carry a bowl every where she went - just in case she had a lung bleed and could spit out the blood into that bowl. We didn't know at that time that hospice would help us so much that she would have to get kicked off their program after a year. They helped us start Jess on a morphine therapy that is preventing the lung bleeds! We didn't know that 4 years ago and we didn't know how much time we had left. Actually, we still don't know - of course none of us know that about ourselves - but Miss Jessica's body is still deteriorating and keeps having different difficulties because it's starving for oxygen and her heart can't keep up with the demands placed on it.

Sometimes I can't help but mourn what we have been through with Jessica and the life that she could never have. But today I also mourn Marcus's losses and the life he will never live. He is deteriorating fast. Tumors are in the brain stem now. His parents are contacting hospice for him. I grieve what they are going through and what they will go through. We don't know how bad things are going to get before Marcus goes "home". I HATE that my sister has to go through what I've gone through... and probably will go through again. I asked Karen whether she would rather have me fly out now or "after". She didn't know. I'm worried that if I wait until "after", Jessica will be so upset that I won't be able to leave her. Although by the way things are going with Jess this week, I can't leave her now either. My mom did remind me that if I wait and am able to go to the funeral, I'll see everyone.... many aunts, uncles, cousins, 2nd cousins, etc - some of which I haven't seen in 25 - 30 years. I haven't even had a chance to talk to Karl about this much either because he's been working so much this week.

We have a LOT of stress going on in our family right now. Please pray for strength for us all. Strength for my sister, her husband, her healthy sons and of course for Marcus. It has got to be hard on him to know that he is dying. Pray for strength for me and my family that we can all deal with all our stress a little better. Pray for SLEEP for Jessica and myself. Which reminds me: she is sleeping now so I had better get to bed and take advantage of it!

(Oh great - the dumb cat just threw up on the carpet. twice. LOL)

Oh well... worse things have happened - and will again! haha!

6 comments:

Awesome Mom said...

Hugs!

Mary Fran said...

Oh Nancy, my heart is aching for you. You and your entire family are in my thoughts and prayers.

scrappinfox said...

{{{Hugs}}} and prayers to you, your family, and Marcus and his family.

Mindi said...

Oh my heavens Nancy, I don't know what to say. I haven't been checking on blogs for awhile. I'm so, so sorry to hear about Marcus. We're so blessed to know that life doesn't end with our mortal life though, aren't we? You know Marcus has a greater mission to accomplish and that's some comfort, even though losing him will be painful for everyone. I'm so sorry.

About Miss Jess! Well, she certainly had quite the experience didn't she? I had to laugh at you taking pictures from start to finish - you're my kind of woman! I don't sell scrapbook stuff, though I probably should, I'd save a bundle! I just bought myself a Cricut... I have to tear myself away from my scrapping room to work! Jess dealt with the whole thing pretty well, considering. I had a bad experience with a horse about 30 years ago. Never went back again. I decided riding wasn't my thing! lol! Poor Jess, that leg looked nasty. Sometimes oxycodone is a girl's beat friend! :) Hugs to you all.

GoofyJ said...

Sending lots of hugs and prayers

Lee (LuvLee on SCS) said...

I just came here from Melanie Muenchinger's blog.......I don't really know what to say except that your amazing spirit shines through and all of you are in my prayers!! May the God of all comfort keep you close!