Just wanted to post an update about Marc and the goings on here at "Stress is the New Black."
We are now three weeks (halfway point) into Marc's six week IV antibiotic treatment. We have fallen into a routine of sorts and I have become quite proficient at my nursing responsibilities. Since I generally administer the IV at 6AM and 6PM, let's just say that I can do this gig in my sleep and I think there have been a couple of times that I did just that. At least it felt that way. I was just telling a friend that the first couple of days of all of this, I was very nervous and stressed; afraid that I would hurt Marc but now it is no sweat and I actually feel quite gratified that I am able to help him in some small way. There has even been one occasion where I had to meet Marc between DJ jobs (just before a wedding) to give him the IV on site, wait the 70 minutes and then flush the line and and take it off. It has been a bit crazy but we make it work. A special thank you to my Mom who has been here many times to help us with the kids so that I can be there for Marc.
One thing that has been quite complicating and a tad bit overwhelming is that both members of the Dynamic Duo have been sick over the past 2 weeks. One or the other or even both have been up several times a night with fever and cough, so when I said that I was giving the IV in my sleep, it was not far from the truth.
Right now, the DD are both doing well and they are both back in camp....yaaaay! Marc is feeling well. albeit a bit tired but that is to be expected. Between the very strong antibiotic and the heart condition he has every reason to be tired.
Our project right now is to find the best surgeon possible to handle Marc's heart surgery and we are in the process of doing so with our first choice; a surgeon at the Mayo Clinic in Minnesota. The big issue as always is money as our insurance is not the best and we are hoping to work something out with the hospital to get this done. You cannot put a price tag on your loved ones lives and I will do anything and everything to make sure that Marc gets the best possible medical care that we can find, so he can live a normal and healthy life.
I promise to get back to the job of writing about our DD in my next post but I know that many of you have been concerned about Marc, so I wanted to let you know how his is. Thanks to so many of you for your prayers and words of support.
Believe me when I tell you that they they are felt by us every single day.
Monday, July 27, 2009
Just wanted to post an update about Marc and the goings on here at "Stress is the New Black."
Posted by Life with JJ, Starr and Spice at 9:34 PM
Tuesday, July 21, 2009
That was the answer that Marc jokingly gave to me after Katie (for the third time today) told us that she wanted us to "get" a baby sister. She actually was begging us for one and it totally took me by surprise because Justin NEVER wanted a baby anything! He loved being an only child for the first 21 years of his life.
I gently told Miss Starr that we were not going to "get" a baby sister or brother, besides she had a perfectly good younger brother. "He is not a baby Mom and he is a BOY!" she said with what sounded like disgust, "I cannot do what I want to do with him!" I asked her what she wanted to do and she told me that she wanted to teach the baby how to be a girly girl and how to love dolls. She would teach her how to dance and she would play with her, hold her and love her. I again gently let her know that we would not be adopting any more children and that she has a very special place of honor in our WHOLE family as she is the only grandaughter on both sides as well as the only niece. She is the only girl cousin and our only daughter. All of that and she is lucky enough to have a little brother and a big brother. She perked up after that speech and seemed quite satisfied with her place in our family and life in general.
Kinda tugged at my heartstrings though but Marc is very right....at this point in our lives the ink has run dry. We are happy that we have our three children and our family is just the right size for us.
Posted by Life with JJ, Starr and Spice at 8:45 PM
Sunday, July 19, 2009
I am sure that I have mentioned that Katie has a special blanket. It is one of the two precious loveys that she has had since she was adopted in China. One of the loveys is a small stuffed baby that we sent to her in China and when we met her on forever day it was still with her. That baby was lovingly named "Snotty Baby" in China as Katie would rub it all over her face while she was crying (grieving) and of course since her nose was running, the baby became wet from her snot as well, thus Snotty Baby. The other lovey is a small ladybug taggie blanket that I purchased for Katie and her BFF Mia while both families were waiting for our girls to come home. Both girls immediately took to their blankets and had strong attachments to them. Katie Starr still loves to sleep with her blanket and when she is ill, she drags it all over the house with her. The rule is that she has to keep it in her room unless she is ill and that has worked for us. Believe me, Katie would look like Linus in "Peanuts" if that was not the rule.
OK, now onto the story about my "mommy instincts' being asleep at the wheel this morning...
Last evening, we came home quite late with the DD after a 4th birthday celebration with Mia and the "P" Family. The children went to bed quickly and I thought that since they were so wiped out that we would be lucky and they would most likely sleep in this morning. We had set the alarm a little later than usual to administer Marc's IV and so when Katie cried out a bit at 6:45 we were quite surprised to be awakened by that sound over the monitor. The DD sleep on the opposite side of the house, so in order to hear if there is an issue we still need the monitor.
The crying stopped as quickly as it started so we chalked it up to Katie crying out in her sleep, which happens when she has vivid dreams. I got up and gave Marc his IV and then laid down to go back to sleep and all was quiet. About a half hour later I heard the same noise and again it stopped quickly. Not one to ever wake a sleeping child, I decided to let it go and wait until I heard them wake up "for real." We fell back asleep and on and off a couple of more times I remember hearing the same sound...finally at 8:15 we heard a "real" cry that sat me straight up in bed. We ran to find Katie very upset and crying with her lady bug blanket up by her face. I asked her to please calm down and tell me what was wrong and then she sputtered out that the blanket was stuck in her earring. I gently pulled the blanket a bit away from her face and saw that one of the taggies that edge the blanket was crammed through the very tiny baby hoop earring that she was wearing and it was pulling the hole quite a bit. It really looked like it was painful and I am sure she was scared. Marc and I had to maneuver her and the earring a bit to get it unfastened and free her from the blanket. It was really kind of a freak thing but I am thinking it may be time to wean her from the blanket.
I felt just awful! She must have been drifting in and out of sleep and every time she realized that she was stuck to the blanket she would cry out and I am guessing fall back asleep when I did not come. Finally, she was awake enough to really be a bit more persistent. I explained to her that mommy thought she was just dreaming and that she needs to yell "Help!" to us it if she needs us. If there had been any crying for more than a second or two we definitely would have checked on her but I still felt awful that she was so upset for quite awhile. Of course, it did not help that we are both quite exhausted lately, since Marc is still getting better and I have a lot more on my plate.
No excuses though...next time, no matter what...I will check the first time I hear a cry.
UPDATE ~ There were a couple of comments and many private emails imploring me not to take Katie's blankie away. Fear not...I was just thinking the whole situation through while I was writing, which I really find like a therapy of sorts. When it was all said and done, I knew that there was no good reason to take her lovey away as under normal circumstances it has never hurt her to have it. Katie and her blankie will not be parted. On the other hand, the baby hoop earrings have been removed as last night they got caught up again on a beaded necklace that Katie made for herself. We are back to posts for now and so there will be no more to worry about......at least in the earring department!
Posted by Life with JJ, Starr and Spice at 2:04 PM
Monday, July 13, 2009
Marc is home and we are so happy to have him here. I think we all can so take a fact like that for granted but I will do everything in my power from this day on not to ever do so again. Without my man here, life is pretty darn sad; for me and for our children.
For the next six or so weeks I am Marc's primary nurse, administering IV twice daily and trying to monitor his daily health habits so that he remain healthy until we cross the next hurdle - his heart surgery. One item on his "to do" list every day is to drink tremendous amounts of water to flush this toxic antibiotic from his body. The doctor wants him to drink about 13-14 eight oz glasses a day. This is probably not easy for most people but for Marc it is really quite an issue (this is said with the utmost sarcasm) Marc is a HORRIBLE water drinker!! I had nicknamed him "the camel" sometime back and I have now become "the camel's" constant NAG to keep him drinking.
This past weekend we celebrated Ethan's birthday again with a family party so that Marc and his folks could share the mischief man's 4th birthday with him. It was nice, although this weekend was quite bittersweet for us. We had a four day cruise that had been planned many moons ago with our dear friends "The P family" and we had to cancel due to this unexpected health crisis. We had really been looking forward to it as well as some adult time together while the kids were in Camp Carnival. It just was not in the cards this year.
I have to admit that I have been feeling quite sad lately. It kinda feels like the deck has been stacked against us and even though I know that this is not true or even fair as many people have it much tougher than we do, it just has been one thing after another for the past 2-3 years. My sister and I were talking about my current state of mind and she made the really good suggestion that every morning after administering Marc's IV that I get out and take a long walk while he is resting and the DD are still sleeping. Of course, exercise is good for body and soul. I started a couple of days ago and it is helping to lift my mood already. Thanks again sweet sister!
We have lots of Doctor's appointments and such over the next couple of weeks so hopefully we will have some more info on what to expect. I think that will help as well. The unknown is so hard.
I must share that Marc has been a real trooper though all of this. He is a great patient. He does what he needs to without complaint. He advocates for himself really well with all of the health professionals which is so important. If you or anyone you know has been ill then you know first hand that you must be very vigilant about your treatments. The health care industry is over burdened and under staffed so mistakes are bound to be made. Marc is really good at making sure that he understands exactly what is being given to him or performed on him. I had never seen this side of him as he had never been ill before but I was so pleased to see him in action.
All I need right now is for Marc to be healthy again. Everything else will come around eventually as long as he is OK and then we can go back to our normal level of good "stress".....now that would be just awesome!
Posted by Life with JJ, Starr and Spice at 9:25 PM
Thursday, July 09, 2009
We have a long road ahead of us but here is the Reader's D*igest version of what the past week has revealed and what will happen next.
Marc has one of the most severe bacterial infections that you can get. The bacteria is called Streptococcus Viridans. The way that I understand how all of this came about is that we all have this bacteria in our mouths, throats and colons. Somehow Marc's immune system became compromised enough to have the bacteria become so numerous that it made him very ill. That in itself is a huge problem but even a bigger issue is that the bacteria caused an infection on his heart mitral valve and damaged it to the point that he has to have heart surgery.
The first thing that has to happen in that Marc has to be on very dangerous and toxic IV antibiotics for 6 weeks. I will be administering the IVs with the help of a nurse that will come in once a week and oversee that as well as draw blood from Marc to gauge the med levels as well as his progress. The reason that I have to administer the IVs is that our very expensive (please note the sarcasm) health insurance will not pay for any home health care. That is a whole other issue that once I get started on I may never stop so I best not go there. Once the infection is cleared from his body he will have his heart operated on.
There are a couple of lessons that have been reinforced this week, the most important one being that you must always listen to your gut instincts...they rarely will mislead you. Marc had visited two doctors when he first started feeling ill. Both of them assigned him to a nurse practitioner who initially told him that the symptoms that he was experiencing were the result of exhaustion and the second one said it was probably a virus. They did blood work but by Friday, July 3rd the results of the labs were not back and Marc was becoming VERY ill. I was out of the house with Katie when he called me and told me to come right home as he needed to get to the hospital. I had never heard him sound like that and I have never moved so quickly to get anywhere. My parents met me so that they could watch the DD and we were off. We waited 5 hours in the ER and Marc kept saying that maybe he was over blowing this and that we should leave. I reinforced that there was something that brought us there and that we should make sure that he was OK. Thank Goodness that we did or who knows what the outcome would have been.
The sickening thing is that Doctor's office that told him it was probably a virus has still to this day not given him the results of those labs and Marc has been in the hospital a week. They do not know he is even in the hospital and when we called to find out what those labs showed we were told that the Doctor had the results on his desk but had not signed off on them. That statement needs to stand on it's own and I am sure there is nothing more that can be said about it....it speaks volumes.
The other lesson is to try to everything in your power not to let the pressure of daily life compromise your immune system. I know that is easier said than done but let this story be a reminder of what can happen. Marc was working way too hard and for way to long with not enough sleep for days on end. He and I have been under an extraordinary amount of stress due to his father's illness and the closure of my business in addition to other normal daily life issues. It seemed to be a potent recipe for disaster.
Last, but never least I must mention that my family and friends have been nothing short of amazing. My parents have been here daily to watch the children and offer moral support. Justin and my wonderful friends have also helped with DD shifts. My sister, who lives up in Northern Virgina was a constant source of support on an almost hourly basis sometimes to help me keep my sanity and has come though in ways that bring tears to my eyes. The directors of the early childhood center at our temple that runs Katie's preschool called us when they heard and told us to bring our children in to camp (tuition free)to allow me to deal with this crisis. Basically every friend and even friends of friends have offered assistance in every way possible and I have no doubt that every offer was sincere. It is very hard for me to accept help and I know that really is false pride but I am working on it.
We feel so blessed that we found this out in time to save Marc's life and if we did not know it before we surely know now how much love surrounds us and that we have riches that have nothing to do with the almighty dollar and are infinitely more valuable.
Posted by Life with JJ, Starr and Spice at 9:50 PM
Monday, July 06, 2009
Today was our mischief man's 4th birthday and yesterday was his party. Marc was not able to be with us to celebrate as he is still hospitalized. Once we spring him from the hospital and he gets to walk through our front door it will be party part duex.
I will do my best to post more pics from the party tomorrow if I can but things have been very hectic lately, as I balance hospital, children and work.
My friend Grace took this one and I just loved it. She has an amazing natural talent. Thanks Grace!
Posted by Life with JJ, Starr and Spice at 11:14 PM
Thursday, July 02, 2009
I know they say that G-d never gives you more than you can handle but I am beginning to think that the powers that be think I am waaay stronger than I really am.
Above and beyond all of the challenges that we are facing on the home front these days is the fact that my wonderful husband is very sick and has been feeling this way for almost two weeks. The Nurse Practitioner at his doctors office says that it is a virus that has to run it's course but let me tell you it is one nasty bug. We are waiting on the blood work to some back to help shed some light on what is going on and when he may feel better but in the meantime...I am VERY worried about him.
As stressful as the rest of life is lately with the many worries brought about by the horrible state of the economy; it all pales in comparison to the fact that my love is so sick.
I hope to have better news to report soon but in the meantime positive thoughts and prayers are always appreciated.
Thanks so much!
UPDATE - Marc's condition worsened today and the Doctor's office was closed for the holiday so I brought him to the ER. He has been admitted to the hospital. The virus was what brought us to the hospital but what kept him there was a significant heart valve issue and the threat of an infection called endocarditis. I am pretty much reeling right now with this newest revelation. Marc is my rock and my soul mate and I cannot believe that this is happening. I will keep you updated. Thank you again for your thoughts and prayers.
Posted by Life with JJ, Starr and Spice at 11:23 PM