Jessica is not doing very well. She seems to be deteriorating right before our very eyes. It's subtle, but it's definitely there. She fatigues more easily, gets more short of breath faster, has more aches and pains and says "I don't feel well" many times every day. She feels lonely but going out exhausts her. She went to school a couple of weeks ago and just 3 short hours completely wore her out. I couldn't believe how fatigued and blue she was. I went to her school IEP and they offered home schooling. I declined because she wants to go to school for the socialization. She has only been to school 4 or 5 times this whole school year.
I also explained that she hasn't been able to go to church in a long, long time due to fatigue. By the time we get her ready she is worn out. There are other obstacles but are boring and don't have anything to do with Jess so I won't go into all that. Let's just say that I don't get to go to church very often and I miss it.
I realize that I should tell Jessica's whole story here, the support groups and to everyone. I always worry about sounding like I'm whining but people who know me and know our situation assure me that I'm not whining at all. I'm telling it like it is. My daughter's story is an exceptional one. One of tragedy and miracles, milestones we never thought we would see and yet heartache we never thought we'd experience. I am thinking of starting a blog just to tell her story in bits and pieces as I have time/energy/and am emotionally ready to divulge certain things. I have a short(ish) version of her story on a website: JENSENLAND and click on Jessica's Journey with CHD. It hasn't been updated in awhile but it covers all of her heart surgeries and the love and support of many people. She has made some remarkable recoveries from strokes and other things so if you can, go and read it. I'll be posting her updates here. The following is today's update:
I spoke to Jessica's pediatric cardiologist and he wants us to do some blood work before we increase her diuretics. I picked up the lab slip today and I'll probably take her to get it done tomorrow. Jessica's puffiness has decreased but we still need to see what her potassium levels are.
Jessica is always fighting congestive heart failure (CHF). She's always right on the edge and sometimes she goes over a little. Last summer when she went into full-blown CHF she was admitted to the hospital for IV diuretics to get her back in balance quickly rather than take weeks of home therapy. We don't want her getting too far out of balance so we are keeping a close eye on it. I've noticed a little puffiness around her chin - but my side of the family is infamous for our double chins so I'm not exactly sure what is extra and what is "normal". lol Jess saw a doctor recently and she had only gained 2 lbs. Usually when someone goes into CHF they can gain more than that in fluid. Last year Jess lost 5 lbs in just the 3 days we were in the hospital and then over the next couple of weeks she lost another 10 for a total of 15 lbs. (remember I had suspected for months that she was retaining fluid?) Well, thank goodness the doctors are not taking any chances this time.
Another thing we have to take into consideration is that Jess can become dehydrated. Her blood is already too thick due to lack of oxygen and if she were to become dehydrated it could get serious very quickly. She's been hospitalized a few times for dehydration when she was throwing up and she got so bad - so fast. So of course we don't want to give her any more diuretics than we need to. It's always a balancing act for her.
As far as the fatigue and cyanosis (being blue due to lack of oxygen), they are always getting worse. She has been complaining that her heart is "going like this" as she squeezes her fist and opens it a little then squeezes it again. I'm not quite sure exactly what that means but it could be PVCs (premature ventricular contractions). We have discussed this with the peds cardiologist and after having been hooked up to monitors it seems to coincide with the PVCs. Last night she got out of bed to tell me about her heart and I sat her down and put the pulse-ox on. Her oxygen saturation was only 51%. It slowly climbed up to 71% where it stayed. (healthy people should be between 96% - 100%). I changed the setting so that I could see the heartbeats (I forget what it's called - where you can see it going up and down) and I did see a few that were probably PVCs but nothing out of the ordinary for her. Her pulse was 92 - 95 so not too fast at all. I asked her, "Jessica, what does the doctor say for you to do when your heart feels like that?"
Me: "What were you doing when your heart started to feel like that?"
Jess: "Resting in bed."
Me: "So you got up and walked out here to have me tell you to rest when you were already resting?"
Jess trying to hide a smile, "Well, it DID feel like that."
What a nut. So anyway, I was able to get her back to bed. Today she has complained of not feeling well and her tummy hurting. She didn't eat much all day but was able to have ham, cheese and crackers tonight as well as a yogurt. She is still taking the tummy meds and it seems to be helping but just not quite enough.
Another thing that is worrisome is hypoxia (lack of oxygen). I've looked it up many times. It stinks. It can get bad. It's what is going on with Jess. It is probably the cause of all her troubles right now: it is probably causing her gastritis which is turning to ulcers, it's causing headaches, her bowels are very sluggish due to lack of oxygen, her fingers and toes are clubbed because of it, sores don't heal well, she is fatigued and has hardly any energy and the list just keeps getting longer. Everything that can be done HAS been done to help her get more blood to her lungs to get oxygen. I can't get it out of my head what the CT surgeon told us 12 years ago. He said that 'most kids living off of shunts like Jessica don't usually live past their mid-teens. Sometimes they get an illness or infection that their bodies can't fight or sometimes they just get too blue to live'. He went on to say that most kids haven't had strokes or other problems like Jessica had experienced and that they were amazed that she had made it that far. I've wondered about exactly what he meant by "too blue to live". I don't want to know. I definitely don't want to watch my own daughter go through it.
Another thing that has been getting to me is that Jessica has been talking about heaven more lately. She had a really bad night a few nights ago and as she cried she said, "I don't know when Jesus is going to come to get me." I asked her if she was tired and she nodded yes. I told her it was ok and just held her. As I said in the email a couple of days ago, Karl and I have been noticing for awhile how tired she is. She has been having a hard time being lonely and feeling like she is missing out for quite awhile. I realized that I hadn't really been writing about all this and just assumed that people knew... so I'm sorry if I startled many of you - I have received quite a few wonderful emails and even a couple of phone calls. I really and truly appreciate them.
Even though Jess had pain and didn't feel well today she was still relatively happy. We laugh and joke around as much as we can, even on bad days.
I'll leave you with a little silly conversation that took place this evening. Here's the setting: Karl was stitching something on his uniform and Jessica asked: "Daddy, what are you doing?"
Karl teasing: "I'm being a woman. I'm sewing. That's all they do, right?" *winks* at me.
Jess: "Oh dad! Women do more than that!"
Karl: "Oh yeah? Like what?"
Jess: "They do laundry too!"