Three Months

Parker and I wanted to thank the nurses and CA's today for their part in helping him make it through three really tough months. We've got a long way to go, but there are people on this floor we have not only made friends with, but who often bring us the only bright spots on difficult days. We wanted to do something to recognize their part in his recovery. Something small.

Nurse Nancy (tall Nurse Nancy, not the short one we asked to not have come back....) told me about a neighborhood not far away she thought I would like. All the nurses AND the doctors are encouraging me to leave the hospital for a few hours each afternoon, so they made up a list of places to go that are not far and are free or super cheap. This afternoon I made a trip to a half price used book store that has fat, cushy chairs placed throughout the store. I spent several hours leafing through the pages of a book on Wyoming photography.

Later I stopped at Quack's Coffee Shop and bought some funny cookies for our friends. That's what the photo is of ... the cookies. I got the lobster cookies because I miss Bay Head, the gingerbread men because they were motorcycle men and made me laugh, the flowers for obvious reasons (hello Hoover-Fisher!!!), and the rainbows in case any of the people here were gay.

The cookies were a hit. Amy and Jessica got theirs first and, after I pulled out two for Lisa who won't be here until tomorrow, the others pretty much flew out of the box. And yes, one of the guys was very pleased I thought to get rainbow cookies.

Parker had two good PT and OT sessions today. PT worked on endurance stuff ~ marching in place, standing as long as he could stand (today was close to 6 minutes including the marching), sitting in the big chair so we can push him out to the courtyard someday soon. OT started working on things like standing to brush his teeth, comb his hair, leaning left and right so someday he can put on his own socks and pants again. Anything to do with every day life that he has to re-learn how to do. Once again, thank you God for the opportunity to have to re-learn these things.

Dr, Driskoll said the lab reports suggest a possible blood clot formation again so he is increasing the Lovanox and will have the ultra sound people come and take a look at his legs again, just to be sure. I'm glad he is being cautious.

Tomorrow will be the first day Parker's Dilauded is reduced by half AND he won't get the extra pain med Dr. Garcia gave him for a couple of days. Should be swell..... :-)

Spirit Dance Road

This photo was taken from the top of Spirit Dance Rd. in Wyoming. Parker drove to Jackson Hole one summer and worked at a resort on the top of this butte. This was the view he saw every day. The Tetons are in the distance, and in the valley is a ranch I covet like no other.

This is going to be a rough week and I think it's important Parker and I both remember the end will justify the means. The total suckiness of this week is going to push us past this point, one huge stride closer to the finish line. Parker wants his life back. He wants to go home. So do I, trust me. But neither of us can until he is well and this is just one of those steps back we have to take in order to rev ourselves up and zoom forward.

Dr. Garcia put the NG tube back in this morning. Parker panicked a little (understandable) but it was over fast enough. That's the benefit of having a surgeon who has taken Parker's case to his heart and will come and do that kind of thing for him, rather then leaving it to a clumsy nurse who might have to do three tries before getting it in correctly.

He threw up a huge bucket of bile right before it went in, and since then it has sucked out almost 1800 more cc's in less than two hours. Imagine carrying all that around on your stomach. Ugh. Barf. Gross. But it is visual progress. For me, anyway. He is pretty pissy right now so I'm leaving him alone, as per his request. Only Amy and Lisa have been able to get a smile from him today. Thank God for those two smiling faces.

Keep your eye on the prize, Parker! We're coming around toward the back stretch!

Roller Coaster

WEDNESDAY: One of the "bad" days. But we are trying to always remember that bad days now are nothing compared to several weeks ago.

After getting the report from the internist about the psuedocyst "organizing" on his pancreas ~ which floods our hearts with terror at the mere mention of the words ~ we held our breath and waited to see the surgeon. He read the internist report before he came in the room and must have known I would be waiting to pounce.

By the way, do nurses write notes on everything the family says for all the doctors to read? They always know everything.....

Dr. Garcia was pretty smart. He brought me down to view the CT and MRI reports and pulled each one up on the computer screen for me to compare myself. The CT scan from April 13th, the day Parker had his first emergency surgery, showed the huge, softball size cyst filled with the VRE bacteria. Compared to the kidneys and the stomach, it was massive. I couldn't even see the pancreas.

I could understand why it caused Parker so much pain. Seeing it on the screen brought tears to my eyes. That dark mass was the reason for my child's agony, the source of the infection which put him into septic shock, that caused the abdominal compartment syndrome and the entire chain of events that almost killed him. Twice.

I felt rage in my gut when I looked at it on the screen, and an odd fascination. Then I wanted to pump my fist and cheer Hooray! when I saw the scan from May 15th and it was gone. The pancreas was minuscule by comparison to the cyst that had blocked it from view on the April scan.

Then he showed me the scan from the day before, Tuesday. What he wanted me to see was the small cyst on the tail end of the pancreas and what the radiologist referred to as "organizing." The cyst is the same size as it was on April 13th, he measured them for me. So no change except the outer lining was slightly more defined, which is what the radiologist meant by "organizing."

In a nut shell, this is supposedly the normal progression in the life of a cyst that small (Let sleeping tigers lie ~ don't anger the pancreas! That's what Yonus had told us was the reason they didn't automatically go in and whack the thing off. Because the pancreas is always waiting to attach and God forbid, we don't want that.

About 6:30pm Wednesday, Parker got a bolus of Dilauded and an anti-anxiety med because he was in so much pain. He fell asleep and except for when he threw up at 9:pm (which made them tell him he couldn't have ice chips anymore, or water .... and that always means an agony for him I have trouble dealing with) along with the other normal nurse-waking-you-up-in-the-night things, he slept all the way through until 9:30 the next morning.

Willie Nelson played from his MP3 speaker system all night, and when Parker woke on Thursday he said, I haven't felt this good in months! Yea!

THURSDAY: Yesterday was a great day. Parker felt so good and required very little medication throughout the day (until the surprise ending). Dr. Moore said he could have tiny, tiny sips of water and ice chips, plus he could/should chew gum and suck on hard candy, which made the day extra special. I had to ward off the wound care people so they didn't interrupt PT because Parker was so determined to try and walk a step or two.

No walking, but I did get a picture of him standing up. Parker was disappointed because he got dizzy and couldn't stand as long as the day before. But he stood on his own with only help from the walker to brace himself. To the rest of us, that was HUGE!

Dr. Garcia came in and ordered an upper GI and colon barium study. Thank God! Early afternoon they took him downstairs for this to be done. Parker got the watch when he first drank the barium, watched it go down and stop in his stomach... hesitate, then start rising again into his esophagus (not the right direction). When he told the girl he felt nauseous, she had him swallow again without anything in his mouth and he said the contrast rose up in his esophagus, then flushed down out of his stomach.

Basically that means the reason he has thrown up so much over the course of his life is because he has GERD, a more heavy-duty form of acid reflux disease. Finding out how to treat that is for a different day. Although that is what has caused his esophagus ulcers in the past, it isn't the real reason they were doing the study.

After 4 hours, they brought him back upstairs. The barium had stopped at a certain point and wasn't moving anymore. They returned at 8:pm, took him back down for another exray, and Dr. Garcia called to tell me the barium was still in the same place.

This is from the ileus. The same as a blockage, but it is a mechanical failure to operate, so to speak. The intestines just don't work in that area so everything backs up until he starts throwing up. This is probably what has been holding him back in his recovery, maybe more so than the pancreas.

The treatments are: Get him off the narcotic pain meds (okay and I'm moving to Kansas if they stop the pain meds)..... Make him move around more (without pain meds? Really? Alaska sounds too close!)Be sure his potassium stays within range because low potassium will cause an ileus by itself, plus cause heart mis-firings..... and if none of the above work, more surgery to remove the paralyzed intestine.

I'm not crazy about those choices. But, at least we know. They are coming for him soon to do the last barium exray to see if the stuff moved at all over night. That will determine how aggressive they have to be with his treatment.

I think I hear Wyoming calling my name.

Oh, I forgot, the yo-yo's who took him down to radiology last night DROPPED him when they transferred him from the bed to the table. I kid you not. He came back in excruciating pain. They apologized and said the table was about 3-4" lower than the bed. Why??? I was there in the afternoon and the guy was so careful to be sure it was just a straight scoot. Why didn't these guys pay attention? UGH! I, of course, had decided I would stay upstairs and grab some dinner and a break while he was gone. That'll teach me to be selfish. And that patients really do need an advocate.

FRIDAY: They just came to get Parker for the last exray of his abdomen to see how far the barium went overnight. The girl from exray who came to see him said he would be gone several hours because he was having an upper GI study. I said no, he'd had that yesterday, Dr. Garcia had told me today was just one exray and if it was a big, long study that meant he had to take different equipment with him (like his pain meds and pump!) She called Radiology and they confirmed what I had been told. One exray and he would be back. His belly is pretty distended today so I would bet the barium is still in the same spot.

PEOPLE: Yesterday we got Amy for our CA (Clinical Assistant). We love Amy. She is a 4'11" dynamo with two little pigtails that stick out Pippy Longstocking style from the side of her head, and a lotus tattoo on the inside of her elbow. She waltzes into the room first thing and says, "It's going to be a great day Parker because I'm back!" Parker smiled. We do like her a lot. Last night we got Red, who physically is the polar opposite from Amy, but we like him just as much.

Our nurse during the day was Miranda again (the smiling, nice Miranda, not the one from Down Under ~ the new term for ICU). Miranda's little brother is the starting center for the U of OK football team and is expected to go in the 4th round of the draft next year. She very proudly showed us photos, once we discovered our mutual love of football.

Nurse last night and the night before was Jessica, aka: Coco. Very nice and Parker had two great nights of sleep with her. Can't beat that kind of magic!

Another Storm

This photo was taken this morning looking out Parker's window as a thunderstorm moved across the sky in the distance. Texas skies are always unique in a spooky kind of way.

Sort of like the news we received this morning. After yesterday's CT Scan Dr. Garcia said it looks good, no changes. But this morning Dr. Moore, the internist, said the verbal report from the radiologist suggested there is a new psudocyst "organizing" on his pancreas.

This is so not what we wanted to hear.

Phoenix!

So many people came by today, looked in Parker's room and said, "Oh my God, what a difference a few days make!" Nurses we've had before, respiratory therapists, pharmacists, physical therapists, cleaning crew, doctors who are not part of Parker's team, the Social Worker .... So many people who cannot believe how Parker beat the odds time and time again. One person said to him, "You're a legend around here you know!" The surgeon walked in tonight and said, "I thought I was in the wrong room for a minute!"

Parker made great strides this weekend. He sat up again today, unassisted, for 6 minutes (meaning no one balancing or even touching him, all on his own!). His guts started working and the NG tube was capped off, the tube feedings started up again, without - so far - any bad effects. He still has horrible thrush in his mouth (part of the yeast infection from the picc line), so badly that he begs for water. Until late this afternoon he was only allowed ice chips.

Parker has had a highly emotional few days. Nurse Monica told us he will have to go through a grieving process, like he is in mourning. And the more he discovers about what happened to him, the more emotional he gets. We have been instructed to be honest with him when he asked questions, so last night when he asked James what the worst part was, James told him it was the two times they told us we were losing him. Parker was stunned by this news. I had sort of told him already, but he was more sedated and doesn't remember. James called and asked me to come back over to talk to him, which I did.

Typical of his sensitivity, Parker's main concern was that I had to go through that, to be told he was dying and to be here all alone when it happened. His heart was breaking at the thought. Somehow I was able to stay calm and collected when I talked to him late into the night about everything, even though I personally haven't been able to deal with it myself. It is amazing what we will do for our children. After some more discussion, we agreed that the best next step was for Parker to have an appointment with Dr. Burg, the hospital psychologist.I am his mother, and I'm too close to his pain with my own agony to help him effectively. Or without terrifying him even more.

There is so much to do. He still has so far to go. But his body is healing. His spirit is as strong as ever. He has visions of returning to work someday, of walking to his mailbox to collect his mail, of taking a shower in his own bathroom and waking up in his own bed. Of driving his car, and sending an email. And of calling me to say, Hey, I'm on my way to work, Just checking in. How are you?

Ileus ~ aka: Another Bump In The Road

So after several really good days, I came in Thursday morning and Parker's abdomen was huge. I mean like a woman pregnant with twins. Or even quadruplets. HUGE! I mentioned to the nurse that it looked distended and she agreed. That's all she said. So I showed it to Dr. Weingarten.

Only thing it could be is gas....

Okay sorry but even I know better than that. Ugh. Dr. Weingarten is supposed to be the Critical Care guy, but there is this line the doctors won't cross because anything to do with Parker's gut is under the surgeons care. I knew it was more than gas.

Dr. Garcia, the surgeon came by. I showed it to him. Yup, he's distended. that was it.

But he's also in so much pain today, I told him. Dr. Garcia answered that by increasing the Dilauded.

Throughout the day Parker's abdomen continued to grow. I sat with him all day and watched that white blanket get bigger and bigger. When Parker asked me to turn the fan off I knew something was much more wrong than just gas. He never wants the fan off.

To make a very long, agonizing story somewhat shorter, we spent a horrible night with Parker screaming in pain. He'd already had so much pain medicine throughout the day he was positively loopy. But he kept begging for more and more and more. Dr. Garcia was called and he added something for gas. Parker had delusions that were terrifying. At one point he was positive he had cut off his own head and left it in the parking lot, and he was pleading with me to go get it for him. I tried to reassure him it was the drugs, but he was in such a panic I had to have Jim come and reassure him too.

Parker, buddy, you didn't cut off your head because if you had I wouldn't be able to talk to you right now, right?

This seemed to make Parker a little calmer, and he finally settled down until the next episode. Like I said, a long, long night. By the time it was over he had emptied everything from his lower intestines ..... several times .... and he had thrown up enough orange, pulpy vomit that smelled like sour orange juice to fill two milk jugs.

He shouldn't have been throwing up because he had the NG tube in suctioning everything from his stomach, remember? Clearly there was something wrong. They FINALLY turned off the tube feedings (the feeding tube goes past his stomach and into his small intestine, so the NG tube doesn't pick it up and suction it out).

We got a CT scan ordered and thank God we had two of the best nurses we have had the entire stay. Simona is from Romania. She was teaching Lisa, who is from Fairfax, VA. Both were exceptional and compassionate and didn't miss a thing. I was so grateful to have them yesterday.

By the time they came on board, Parker's stomach had deflated somewhat from losing all the stuff that had been blocked from going down his intestines properly. But he was still sore, very drugged, very emotional, and afraid. Me too. He also had a fever during the day, and his heart rate started to climb again. Those two things alone are enough to send me into an internal panic. To me they suggest another septic infection brewing. My hands shake just to write that part. I definitely need a shrink.

CT scan showed Parker has a repeat of the ileus he had when he was in South Austin Hospital, when he first had the acute pancreatitis. Before it got as complicated as it is now. Ileus is when portions of the intestines get temporarily paralyzed and lose their mobility, so it is the same as having a blockage. That's what showed up on the CT scan. There are a number of reasons that could have happened. One is that the lasix he has been on all week, which drained 38 lbs. of fluid from his body, reduced his potassium level, which not only caused irregular heart firings, but also temporary ileus. Another reason it could have happened was if there was another cyst growing.

Dr. Garcia said this morning the only thing cyst-like are the two small cysts that were there in the beginning at the tail end of the pancreas, but they are supposedly smaller than they were and "nothing to worry about."

I really, really hope he is right. I am tired of there being evidence of something amiss and the wait-and-see attitude that then leads to another problem. I want Parker to get well. He wants to get well. Parker needs to become more mobile so his gut starts working better and things begin to resolve, but at the same time, the doctors and nurses need to listen to him when he says something is wrong.

Slaying Dragons

This is a photo of one of Parker's old football coaches, Scott Murphy, who is now the principal at the middle school Parker attended in MD. Coach/Principal Murphy was being taped to the wall by the students he had challenged to raise money for charity. He said once he was attached to the wall and they pulled the chair away it was scarier than he expected. But it goes to show, you do things for your kids. Whether you are their parent, their coach, their principal.... we do things for our kids.

I'm almost afraid to write this because I am afraid I might jinx it. Today the Critical Care Unit manager, Francis, came to see me with her counterpart, Mary. They wanted to get feedback from me, since I have been a permanent fixture in the halls of the ICU for so long now (Sunday marked the two month anniversary since Parker first went into the hospital, and Wednesday marks the one month anniversary that he has been in the CCU.) Durung the conversation they started talking about when he moves to Intermediate Care. WHEN!

I asked what the criteria would be for him to be moved, because to look at him you can see his life is still being sustained by machines and medicine. Francis said the primary goal would be for him to be breathing on his own, without needing to rest on the ventilator, for a certain length of time. He would have to have been fever free for several more days, his heart rate would need to remain stable, and he would need to continue to make progress in his physical therapy.

Oh, I meant to start out by saying he sat up, unassisted except for balance, for SIX MINUTES today!!!!

I asked about the fact that he still has the NG tube sucking bile and acids out before they have a chance to build up in his stomach and she said he can go to IMC with that. I asked about the fact that his abdomen is still wide open, covered by a wound-vac with a drain coming out that removes the fluid so it doesn't build up and turn into Abdominal Compartment Syndrome (see post from the worst day of my life, April 14th). Francis said that is up to Dr. Garcia, the surgeon, but Parker might even go home AND return to work with that thing attached to him, draining fluid into a little bag he would carry around with him. That really creeped me out.

I asked about the additional 14 liters of fluid he is carrying that the Lasix is helping get off his body. She said no problem, they can manage that upstairs. I asked about the VRE bacterial infection and the fact that he is in isolation. No problem, he can be in isolation up there too. I asked about the three braod spectrum antibiotics he gets IV plus the two anti-fungal from the yeast infection he got in the picc line. No problem. I asked about the fact that we couldn't get a good CT scan, and she said she would look into that (because I don't want to go anywhere without a CT scan assuring us there are no more infected cysts building on the pancreas). I asked about the insulin drip he is still on because of the infected pancreas, and about all the other things that are wrong.

In the end she said it is up to the pulmonary doctors (aka: Critical Care doctors) and his surgeon, but there is a possibility he may be ready to make that move at the end of the week!!! It feels scary and exciting at the same time. It also seems unrealistic to me and I suspect Francis wanted to give me lots of time to think about it.

Is there anything we can do for you to help you with the possibility of this transition? Francis asked me.

Yes, may we please request a room with a view?