VERY low blood pressure

First the downer stuff from today: I just left the hospital tonight and Denise's heart rate did lower to the 112-120 range. But her blood pressure is REALLY low, like 58/37 at one point tonight (about the best I saw today was 82/43). Very scary. The two meds that were administered to lower the heart rate (and increase blood flow) have been discontinued because the blood pressure is way too low. Denise expressed to the nurse tonight that she was scared. She's been saying that more over the past week. I must admit that while I try to be encouraging and point out all the progress and things to be optimistic about, I find it hard to be encouraged by what I'm saying to her sometimes. She got up to 103.9 last night and was about 102 when I left tonight. I heard from the nurse that the infectious disease doctor switched the antibiotic from Primaxin to something else because the pseudomonas infection is resistant to the Primaxin. For those that would ask, I forgot to get the name of the new antibiotic. So there are some pretty scary things going on right now.

Now for the good stuff: I turned 35 today. You might be asking why that's not listed in the "downer" paragraph. But it was really nice. They sent me out of the room to "clean Denise up." When I returned and opened the curtains, Denise had a teddy bear, a balloon boquet, and a couple cards. A bunch of nurses were in the room and everyone wished me a happy birthday. They deflated the cuff on Denise's tracheostomy and she was able to say "Happy birthday" to me. The card from Denise had writing that looked almost normal. The nurses also had a signed card for me. Denise was able to tell the staff to get my favorite pie & ice cream and organized a couple other things. Pretty impressive, I must say. She was fairly alert in the afternoon, which was also nice. Yesterday one of the teachers from work dropped off a goodie bag for me that all the other teachers & students put together. That was really helpful & encouraging to me (thank you all VERY much! I'm overwhelmed!). Today my friend from Tennessee that's visiting me invited a bunch of his friends over to my house (they happen to be my friends, too). So it was sort of a reunion for him, and a birthday party for me (I wasn't there most of the time because I was visiting Denise so much). At one point as the party was winding down, a car caught fire down at the end of my block. According to a witness, a drunk driver caused an accident, drove away, and finally got out of his car on my street as it was burning. Fortunately, it wasn't anyone from the shindig at my place.

I also had a few people go with me to visit Denise today. The support was good. On the way home tonight, one of my friends said that the blog was good for her & her husband. Each entry sparks a conversation about what they'd do if they were in my situation. The book I'm reading had a quote from Nietzsche that said "It is not so much the suffering as the senselessness of it that is unendurable." So hearing how the blog is helping a couple connect adds some sense to what Denise & I are going through right now.

I just got a call from the hospital to go over because Denise's blood pressure's low and not coming up. So here I go. Keep us in your prayers.

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Heart function worse than previously thought

Here's the update as of about lunch time today. The official word on Denise's heart is that it's worse than what they thought (ejection fraction is 20-25%, not 30-35%). What she has is commonly referred to as congestive heart failure, most likely brought on by tachycardia (high heart rate for a long time). We're waiting to see how the two drugs they're giving her work. The drugs will slow the heart down, allowing more time for the chambers to fill with blood for the next beat. One drug is usually specifically for hypertension. As applied to the heart problem here, it dialates the blood vessels, making it easier for Denise's heart to pump out against an overall lower pressure. We're waiting to see what the latest thyroid check has to say (might have some bearing on the heart rate). The last thyroid panel came back essentially normal (thank you to family members that contacted me to contribute your thyroid histories). According to an outside-the-hospital opinion, this heart condition should get better once the infections, fevers, and breathing begin to come under better control, since Denise is young and was in great shape prior to going into the hospital.

By the way, have I ever mentioned that this is Denise's first hospital stay in her life? She's packing a lifetime of hospitalization into one long stay.

Fevers crept up to 103 since the last post, so I assume that there's an infection that's either new or getting worse, or one of the antibiotics or antifungals isn't as effective anymore (possibly related to yesterday's decision to switch the antifungal meds). Still waiting to find if the PICC line was a player in any infection. Pseudomonas still present in sputum. To fight the infection, the IV nutrition is either way down or discontinued. The thinking is that the very high sugar in the TPN that's going through the IV tube increases the risk of infection in diabetics (which Denise is dealing with at the moment... most likely temporary). So by cutting the sugar down, the risk of infection goes down, too. At least that's my overly-simplistic understanding. She still probably has a c. dif infection, but that's to be expected until the antibiotics are discontinued. Sounds weird, as I *think* c. dif is a bacteria, and should be whacked by the antibiotics. But then again I've been amazed by lots of things during this whole ordeal. The more I learn, the more I find out how much more there is to learn. Let me restate that... the more I learn, the more I realize how stupid I am.

Her bone marrow seems to be working, as she's still on procrit, and that can only work if the bone marrow's working. This is based on the reticulocyte count (a word I need to research, but my preliminary understanding is that it's basically an adolescent red blood cell, and used as an indicator of marrow function). Now whether her marrow's able to crank out enough cells to deal with her needs as related to infection-fighting and hemoglobin is something that is foggy in my mind.

And my mind is quite foggy right now, as Jacob was awake many times last night. The pediatrician says that he's got gingivostomatitis (sore throat w/white patches), caused by a virus, pretty common. Fortunately, he said virtually all adults have already had this and there's slim chance that I'll get sick, so I can probably still visit Denise. Also, the fever & contagious phase is short, and I got him into the doctor early on, so the meds they gave him should work great. The bad news is that Gracie is probably going to get it, too.
Oh, how I long for the days when if I took a sick day from work, it was because *I* was the one that was sick. Life's real different with kids!

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Remedies for Asthma or Allergies

A lot people have asthma. My daughter, 41 years, included. She has suffered from attacks for many years. Recently I encounter three natural remedies that I asked my daughter to try. I have not yet received a report on these, so I would like to pass them on to you. Here is the first one.

Boswellia

Boswellia, an herb, is known for its anti-inflammatory abilities and its usefulness in reduces the effects of bronchitis, asthma, cough, laryngitis, and fever. It comes from the resin of a tree in India and made into a pill or cream. It is best known for use in arthritis.

Recommended dose is: 150mg three times a day.

Yamoa

Yamoa is an herbal powder treatment for Asthma, which is derived from the bark of an African gum tree. It is available in capsule and has been typically used to help asthma. It has a good history of helping asthma sufferers.

Minor Blue Dragon formula

The Minor Blue Dragon is a Chinese herbal formula. Another name for it is xiao-qing-long-tang, or XQLT. It’s a blend of eight herbal medicines used to treat asthma for centuries in Asia

The XQLT formula has been used effectively for bronchial asthma for centuries and it is said to have an even more powerful bronchodilator effect than prescription drugs.

This formulation contains ephedra, which has been banned in the US in diet formulas. However, ephedra in this formula is considered safe, since the formula only contains around 15% of this herb. The other ingredients in XQLT are paeonia alba, cinnamon, pinellia, ginger, schisandar, asarum, and glycyrrhiza. Nutritional Supplements That Help Reduce Asthma

Antioxidants

In addition to the above herbs it is also important to take a good supply of antioxidants - especially vitamins A, C, and E, carotenoids, and selenium. Taking antioxidants helps to reduce the irritating effects of airborne free radicals, which can activate an asthma attack.

Magnesium

Magnesium has been shown to reduce the risk of developing asthma and might also be helpful in reducing asthma. Magnesium is also good for asthmatics because it helps to dilate the bronchioles. Also, make sure that plenty of water is drunk daily, which thins mucus. The recommended dosage of magnesium is 200-600 mg/day.

MSM

MSM has also proven useful for asthma aside from being beneficial for arthritis, allergies, fatigue, back pain, sinusitis, carpal tunnel syndrome, autoimmune diseases, and many other conditions. Start with 2000mg of MSM per day but be sure to take 50 to 150 micrograms of molybdenum daily since MSM needs molybdenum to activate it properly.

I was able to find a product that already has the proper molybdenum in the MSM, which makes it convenient to take just one pill. Go to google and put in the words “MSM molybdenum” and you will find some web sites that sell this MSM combination.

Rudy Silva has a degree in Physics and is a Natural Nutritionist. He is the author of Constipation, Acne, Hemorrhoid, and Fatty Acid ebooks. He also writes a newsletter called Natural Remedies Thatwork.com For more information on his writings go to: http://www.asthmatreatments.info
source : http://www.newomen.com/displayarticle289.html

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Weak heart, Possible PICC infection, LTAC?

Top of today's news isn't great. Denise had an echochardiogram that showed no signs of infection in her heart, and no fluid around the heart. But it showed that her heart is weak. Her ejection fraction is only 30-35% (normal should be 60-70%). What this means is that her heart is not squeezing out enough volume per beat. This may be attributed to having such a high heart rate for so long. She's getting tired. So they're going to give her some meds (coreg & cardizen... I haven't had time to learn anything about them yet) to slow her heart rate down, thereby hopefully allowing enough time for the valves to fully open/close & get a favorable amount of blood volume flowing. Now since they're going to slow her heart down, that means that they need to get more hemoglobin into her system to accomplish the same amount of oxygen saturation with fewer heartbeats... they've gotta get more bang for the beat. So they're transfusing more blood tonight to get the hemoglobin count up. Other problems might be related to her current heart concern. Might be coronary disease, but not likely. There is an off-chance of a thyroid abnormality, so that'll be checked. There's also a possibility of postpartum cardiomyopathy (simplified, a weak heart muscle). But that's also not likely, since Denise probably wasn't far enough along into the third trimester for this to happen. Still, no stone unturned. I forgot to ask the doctor if this is something that's a new hurdle/crisis, or if it's been there for quite some time, and it's just the next thing to scratch off of the to-do list. Since the doctor has been so great about feeding me all the details regularly, I fear that it's the former.
The infectious disease doctor is planning to change up Denise's antifungal medication (though not showing up for a while, the Valley Fever fungus might still be lurking). The new med will be voricanozole. The reason for the switch is apparently to avoid having Denise build up resistance to the current antifungal med. The fever curve had been lowering over the last few days (at least when I was visiting) but tonight when I left she was at 102.6, which is higher than what I've seen with my own eyes. So the fevers seem to be creeping upward again. That reminds me, just before dinner tonight, there was what appeared to be pus where Denise's PICC line went into her arm. So they removed the PICC line and sent the pus and the tip of the line for culturing. Seems to me the other day, there was the thought that the PICC line might be a player in the blood infection.
The IV feedings and gastro tube feedings are still being adjusted. They're going to try to lower the lipid content of the IV feedings. There's some concern about dehydration, as evidenced by the increasing heart rate... at least that was the thinking this morning, before the echocardiogram. Also this morning, there was talk about getting the possibility of starting to look into a long term acute care (LTAC) facility if she stays stable and things continue to move in a favorable direction. That was also before the echocardiogram, which kind of blew that LTAC idea out the water for the moment. LTAC is something else we're not looking forward to, as none of us like the idea of Denise being gone for months beyond the two months she's already spent in the hospital.

And from the "When It Rains, It Pours" department, my dad started back on chemotherapy yesterday (maybe I should set up a blog for my mom & pop), and Gracie & Jacob are both running fevers tonight. The pediatrician on call (at 10 pm) said that from the sounds of things, Jake might have an ear infection, so we've got an appointment for tomorrow morning and we're praying that I don't have to go to urgent care later tonight.

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Before The Baby Arrives

This article give you know what you do before your baby arrive. Congratulations - you're going to be a mom! Whether it's yourfirst or sixth baby, there are things to consider and plan for:
Do you have your birth-plan worked out with your
family and obstetrician (nurse-midwife)?

Do you have your suitcase packed (or things organizedif you're having a home-birth)?

Do you have your emergency contacts in case you go into labour at a less-than-convenient time?

Do you have the nursery ready for your baby's arrival?

Does your baby have a family?

That last point might seem odd, but inasmuch as we plan with such detail about every other aspect of our newborn's life, sometimes we overlook the most basic thing: your baby needs a family. I'm not going to delve in to the political hot-potato of single moms having kids, I'm simply going to advocate for a family for your baby. If you're married, this means a husband for you and a daddy for your child.

The goal of parenting is not to simply avoid excessive anxiety, but it is to create a world of confidence by what we do with each other as much as what we avoid doing. Weak marriages do not build strong families, nor do they infuse the hearts of children with confidence and security. And isn't that last phrase what we want most for our babies? The best years of parenting flow out of the best years of a marriage. Protect your relationship and you'll raise happy, healthy children as a
result.

Too often when a child enters a family (please note that you and your husband ARE a family even before you have children!), the marriage is set to the back-burner of the stove, be it due to exhaustion, lack of extra time, etc. The parents leave their
first love: each other. Isn't that the reason you married and decided to have children in the first place?

So before you begin parenting this new little one who will be so precious to you and your family, take some time to consider the state of your marriage. If you need to work on it, start now: your baby will sense and respond to stress in your home
and your body more than you might realize. You won't want to have your precious bundle of joy starting out life stressed, so do what you can now to eliminate that and keep your relationship with your husband on the front-burner. You won't regret it!


About The Author: Kirsten Hawkins is a baby & parenting expert
specializing new mothers and single parent issues. Visit
http://www.babyhelp411.com/ for more information on how to
raising healthy, happy children.

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Not much change, Trach cheating, Party planning

Not much change between today & yesterday as far as fever, heart rate, breathing rate, etc. She was asleep most of the time. She managed to figure out how to cheat the tracheostomy... she pulls the collar to one side and can squeeze out a word or two. She's been writing quite a lot over the last day or two, and most of the time we're able to figure out what she's writing. The few hours a day that she's really awake & alert, her writing almost looks normal. They tried the CPAP mode of ventilation again today, but she didn't tolerate it well. It's been weird... one day she can go for a couple hours, the next day only a couple minutes. Her tummy looks a little more bloated today than yesterday, but that might be because the IV feeding is decreasing and the gastro tube feeding is increasing. There was a vomiting episode earlier, soon after administering some meds.
Denise looked at some party supply catalogs tonight and circled some items for me to get for Gracie's birthday party. One of the people at work took digital pictures from the party supply store for me, and I'll show those pics to Denise tomorrow when she has more energy. By the way, thank you for all the offers to help out with that! I'm overwhelmed & will hopefully get back to a bunch of you this weekend.
I went to wash my hands at the sink and my head knocked some chimes that are hanging from the TV set. Thank you to whoever got that for Denise. And while I'm thanking anonymous gift-givers, thank you to whoever left the daddy & baby sculpture & In-n-Out gift certificates on our front porch last week. And somebody got us a Boston Market gift card with no name. I'm sorry about being so bad about writing thank you notes to people... I like to express appreciation, but I'm dropping the "thank you note" ball quite frequently during this ordeal. Know that I truly appreciate all that's been flowing our way. Maybe I should do a post that's dedicated exclusively to thanking everyone... it'd be a long post!

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Online Map?

I thought it would be a kick for Denise to see where all of you are on a map. I'm looking for a web site that has an online U.S. Map (maybe a world map would be needed) that lets each of us put a virtual push-pin (I'm thinking a red dot or something) onto the map where we live, based on city or ZIP code. I've searched but haven't found anything online. Anybody know of a site that offers what I'm looking for? If we can find a site like that, I can link it to Denise's blog. What an encouragement that would be for her to see a map with hundred (thousands?) of red dots all over the place, each one representing the location of someone that's been pulling for her.

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