James' Flowers

Look what James sent me for Mother's Day! And he specifically requested lilacs because he knew they are my favorite. The bouquet has lilacs, and big, fragrant roses, and viburnim and berries and pink lilies and protea..... It is so fragrant, and the fact that he sent them to me makes me realize how blessed I truly am. I love my boys.

Thank you James. You did my heart good.

Back Step? Or Two Step?

Got called at 1:30AM. Parker's trach tube had dislodged so they put in a new, longer one. Didn't seem like a big deal until I got here this morning - temp back up to 102, heart rate elevated again. I hope and pray it is a blip on the screen of Parker's life and not something like the cyst brewing another infection. Think Positive!!!

The Big Sit

They sat Parker up today. It is the first time he has been off his back since April 13th. He wanted to be sure I was there to see it, and afterwards he mouthed, How'd I do, Mom?

It was a good indicator for me to see how far he has to go, even if we only have minor set backs from here on out. He couldn't hold his body up well, and his head started to roll around on his neck like a sack of potatoes. He was upright for less than one minute before he got nauseous and dizzy so they lay him back down.

I was going to take a picture of him sitting up to send to his Dad so he could see, but I was crying so much I forgot. I was crying from gratitude that we were able to get to this point, and I was crying because it was startling to see how dependant he is on machines to keep him alive. But mostly I was crying because it was so important to him that I was there to see it.

You did great, honey, perfect, it was amazing....

Nurse Ratchett

I put up that photo because last night's nurse really pissed me off this morning and and I am trying to get over it. Hmpf! That is Scout saying, I miss you Parker!

Yesterday the tube going into Parker's cyst, the tube that was draining the infected pus from it, came out. Not sure now if he pulled it out or if it came out when he had physical therapy. Dr. Garcia said he is going to leave it out and if he starts up with the high fever thing again they will do a CT Scan and check it again. Progress.

Today is a BIG day in the life of Parker. They are going to try and help him sit up in the bed. He's been flat on his back for four weeks now (in the hospital for two months this coming Sunday!) and Dr. Garcia said sitting up will help his gut heal.

Yesterday he was on the trach collar all day, until 7:30 last night. This means he is breathing more and more on his own. He was exhausted by the end of the day, and his lungs sounded somewhat crackly, so they put him back on the vent and he fell right to sleep.

During the day yesterday Parker waved me over to his bedside. He mouthed, Mom, help me get to my truck. Let's get out of here! He is still convinced there has been some mistake and he is not supposed to be here. :-) The other day he told John, I'm not happy with this! I want to speak with my Senator!

Big days coming up. Please keep him in your prayers as we try to push past this next hurdle.

One More Day

That's Bougainvillea. It grows everywhere here. I've tried to grow it in hanging baskets in Bay Head outside the front door but it doesn't work. I miss Bay Head. I miss James and my cottage and my family and my dogs and my job and my friends. But most of all I miss those daily phone calls I got from Parker when he was on his way to work.

Hey, just on my way to work and wanted to check in. How are you?

Sometimes I would be too busy at work to talk. I know this is stupid, but I regret those times now. Not practical, I realize. We can't live on the premise that something might happen any minute. But we can remember to hug our children every day, to say I love you to whomever we feel moved to say it to, and to thank God for every minute of every day we get.

Not a sermon, just my thoughts.

Parker had a relatively uneventful night. Temp and heart rate staying pretty normal ("normal" for Parker is not normal for you and me ..... his normal is still indicative of a very sick young man). His nurse last night, Aaron, said he woke up about 2:am and was sure that his Dad and I didn't know he was in the hospital and got a little upset and worried. I had written him a note, but I don't think Aaron showed it to him.

The weird thing is I woke up at 2:10am after having a nightmare that Parker had severed his leg and John had to go into the hospital to donate an artery to do a transplant (I've never heard of an artery transplant, have you?). In the dream I was responsible for keeping Parker quiet so the leg, which was dangling by a tiny thread of skin, wouldn't fall off. In the dream Parker was agitated and didn't want to stay still. A helicopter came to take him to a hospital in Baltimore, but I'd never heard of the hospital and wanted to see a review of it first. Dreams are so weird....

Reality is weirder. MY reality is weirder. Right now I should be working like crazy at the florist for Mother's Day Week. As hard as holiday weeks can be at the florist, or as crazy as horse show week is at an equestrian center, or foaling season on a breeding farm, they don't even come close to the job I have right now. Can't touch it.

Francis, the Critical Care Manager, said to me today, I know you are living every parent's nightmare, every minute of every day.

The good news is, although Parker has set backs (and I was assured today by his new Critical Care Specialist that he will have more set backs that have to be battled one by one by one) his trend is towards getting better, not worse. I hold onto that thought for dear life.

I know Parker's brother, James, is having a hard time right now, too. It was heart wrenching for him to see his big brother like this, to witness Parker's confusion, to hear the alarms go off when he can't breathe, and to see the huge wound open on his belly, and know when he was going back for more surgery to push his guts back inside.

It is sad to watch Parker reach up to scratch his nose, not remembering that his arms are tied down so he doesn't pull the tubes and wires out of his body. It is really scary to watch the respiratory therapists push a wire down into his lungs to pull out the fluid and goop that builds up, and to see Parker's face cringe and turn as red as the side of a barn and his abdomen tighten so much it looks like the cellophane holding it all together is going to burst. The beeping sounds invade your sleep, the bugle like noise that tells the nurses someone's ventilator has come loose will forever be a part of our lives. Explaining to Parker every day, sometimes several times a day, where he is and why, until a flash of recognition crosses his face, and then the disappointment when he sees the date I write on the wall in big, bold, red letters every day, and he realizes he has been in the hospital for two months of his short life. It is all somewhat like a horror movie. But this is Parker's life right now. This is my life. And there isn't anywhere else I could be.

Yesterday when I was walking back to the room I passed a small garden of herbs I hadn't noticed before. For a fleeting moment I smelled the ocean. The same smell we wait for on the long trips to Bay Head, when we finally reach East Ave and roll down the windows for the last mile of the trip, no matter how hot or cold it is outside, so we can inhale deeply that aroma that means home. I don't know what the herb or flower was, but I will walk back that way again today and see if I can find it.

P.S. Dr. Weingarten told me today that, although they are "ashamed" that Parker got a yeast infection from the picc line, it was the best reason they could have asked for to explain the high heart rate and temp the other day. He said they will continue to culture the blood to be sure the meds they are using are the right ones, and all the lines and catheters and IV's have been changed. Hopefully over the next couple of days we will see improvement in the blood cultures. A yeast infection is certainly better than another pseudo-cyst brewing an infection in his abdomen. Ugh.... just the thought of that makes me feel sick.

A YEAST Infection????

So everything from yesterday and last night apparently has been caused by a yeast infection in the IV lines. A YEAST infection? When the infectious disease doctor came to tell me, I looked at him for a minute like, And so? It just didn't register that all that .... temp up to 104.8, heart rate up to high 160's, everything just going crazy, was due to something as seemingly simple as a yeast infection.

This morning the white cell count was still around 6.8, which is NOTHING compared to where it has been when he was septic (44,000), or brewing the VRE infection before. Doctors were all scratching their heads trying to figure this out. His temp was starting to rise again this morning, up to 101.9, his heart rate still in the 140's, and we were preparing for another CT Scan (and believe me, Parker HATES those and was asking for anxiety meds already), when they came in to tell me.

This up and down is wearing me out, but I'm okay, I am good, I am happy at this odd way of receiving good news. When the doctor told me, after I had a minute to let it register that the root was so simple, (having said that, I am assuming a yeast infection is simple) I burst into tears. The doctor laughed and winked at me. Parker was so relieved, he kept mouthing over and over, That's it? That's all it was?

My friend Marge, who volunteers in the ICU waiting room where I am now, said Dr. Bissett is the best infectious disease doctor I could ask for. Thank you God for sending him our way! Thank you God for lifting Parker up, holding him in your Light, and helping us climb another mountain.

I love you, Parker. Rest well today.

P.S. Yesterday the large family (like 35 people large) that have invaded the waiting room, got called from the school one of their kids attends. The kid had to be picked up because she had a fever. So the family brought her here, to the ICU waiting room, in a hospital, to infect everyone else with whatever she has. Classy.

Stamina

I'm not sure how I am going to get through this, but watching my child suffer like this has got to stop. He must get better now. I can barely go into today's events, but with temps close to the 105 mark again, heart rate super high and hallucinations from all the pain meds, it was all I could do to wait to break down until after I had left his room. I am amazed at my own tenacity and ability to hold it together while consoling him.

All consulting doctors are baffled, but the one thing they almost all agree on is that to go back into his abdomen would not be a good idea. I can't even think about it.

Please pray for Parker. He needs a lot of prayer, a strong heart and a lot of stamina to get through this.

I love you so much, Parker. I'm right here.

Patience

I am trying so hard to be patient this morning, but there are two VERY noisy new families here in the waiting room who have no idea that there are others who are grieving. Or, if they do have an idea, they don't care.

Thank you, Mom, for all those manners lessons I complained about when I was a child. At least I have that to offer those around me. I wish these other people had the opportunity to learn from you.

Playing Catch Up

This is a lengthy post, but read to the end because there is light at the end of the tunnel.

Last time I wrote I told of a family I had met here, and the connection between that family and mine. I mentioned when first writing that post that I was very upset and stressed about some recent events, to the point I couldn't even write about it. Then the Internet went down. Sorry for that cliff hanger, folks.

Wednesday night Parker had the procedure to fix the ripped mesh and the bulging intestines. John and I were both furious because Parker had been in such pain all day. I got a hold of the Critical Care Unit Manager and had a long discussion with her about the nurses who didn't act on my concerns and let it get to the point it was when I showed up Wednesday morning. I also told the surgeon I was VERY unhappy that, even though to him it wasn't an emergency when he saw it Wednesday morning, it became an emergency when Parker had to endure that kind of pain all day and it should have been attended to long before 6:pm.

By Thursday when I wrote, Parker's temp was back up over 103, his heart rate and BP up, and we had back tracked because action hadn't been taken when it should have been! All of this proves how important it is to have a family member, or some sort of an advocate watching out for you when you are in this kind of situation in the hospital.

By Friday things were good, he had a great day. He had a little physical therapy, spent a lot of time "talking" to John, made some progress. Then Saturday we back tracked again. Fever, high heart rate, high BP, belly swollen, fluid retention, the works. UGH!

The squeaky machine gets the oil, and because I had spoken up, we had two great nurses over a four day period of time. Nema, the day nurse, knew better than to sit on this and wait and wait and wait for the surgeon to come see Parker. She called him four times and finally got him here (he was working emergencies at one of the other hospitals, but because of her persistence, when he had a break he came right away).

Turns out the NG tube (up the nose and into the stomach to constantly suction the stomach acids and bile that the stomach produces) got a tiny kink in it and the stuff started backing up. Dr. Garcia replaced it with a new one and Parker almost immediately started to get better.

We were relieved it was something as simple as this, but it also showed me very clearly how fragile the balance is in his body. Just the fact that a normal function ~ producing the acids and bile ~ caused him to tip over the edge like that shows me how far he still has to go.

Sunday was another good day. So good that I actually went to Parker's apartment in the afternoon and slept and slept and slept. Being there at his apartment made me miss him so much. I got up at 5:am and came back in time for the 6:am visitation. He'd had a great night, no fever, heart rate and BP good, no anxiety, slept well, everything.

John leaves to go home tomorrow. He was supposed to leave last Saturday, then Parker got the high temp again and he postponed his return. Parker knows he is leaving, and he also knows his Dad will come back if he needs him. The fact that he didn't leave Saturday proved that to Parker.

I have tried to stay out of their way to give them time alone before John leaves. Also to give myself a head start because once John is gone it will be just me handling everything by myself for a long time. I started taking vitamins (thanks for the recommendation Meridy!) and since I got new shoes my feet are MUCH better, so I am trying to take advantage of the weather and walk as much as possible.

Today Parker got his first drink of water. This was REALLY big news. So big I took a picture of the cup and straw. John was with him and said he has never seen anyone so happy. As my brother Michael wrote, "God's greatest refreshment, still unimproved after all these years."

As of today they have resumed the tube feedings (which bypass the stomach but are meant to get the intestines cranked up and working again before the stomach has to do anything) and he has been breathing on his own since 7:am today. By the end of a whole day of breathing he is exhausted and his heart rate starts t go up a little bit, but each day he can do this he will get stronger and stronger.

My sister-in-law, Lizzie, wisely pointed out to me that while I am immersed in the minute by minute changes, which never feel like enough, if I go back and look at a whole week I will be pleasantly surprises. I remind myself of that all the time, because there are moments when I can't get my head out of what is happnening before me and I feel burdened with bad news. But she was right, and when I get the guts to really go back and process what happened on April 14th and April 22nd (the two days I was told I was losing my son), the little things that happen on a day like today will become even more magnificent.

P.S. The random photos are taken from my walk from the room at the League House to the hospital each morning.

I love you Parker. And I miss you James.

Internet Not Working

I am posting this from my Blackberry, not sure how it will work. The hospital's free internet service is not working (how dare they!) So I have not been able to post since last Thursday. After another bumpy ride late last week and into the weekend, Parker has stabilzed somewhat. For now. Don't jinx it please. We made two steps forward and one back, had fevers, high heart rate, BP, the works. All is quiet now. The BEST news is that we can now read Parker's lips pretty well. That, and he has decided to "make himself well" and has requested oral pain meds as his version of progress toward getting out of ICU. As sweet as that is, his stomach still won't allow it. But just the fact that he understands what has to happen in order to be moved to Intermediate Care is wonderful news.
His boss Dustin came by for a visit, which did wonders for his spirits. He now has hand made cards and notes on his wall where he can see them.
He was happy to learn a 50 to 1 shot won the Derby, but very unsettled to realize he has been hospitalized for almost two months.
I will post more about the events of last week (which prve that a patient MUST have their own advocate to speak for them!) As soon as the techs here get the internet working. I told John to go take care of it for them but they won't allow it.
Thank you so much to all of you who have helped make it financially possible for me to continue to stay by Parker's side. I am so touched by your generosity, and so grateful.
More later.