Jack is having a rough time

Needless to say, since getting to the floor, it's just been one big crisis. Jack came out of the PICU on room air, satting 100% and fairly comfortable. He is now on 3L of oxygen, at one point his sats dropped to 39 (probably not accurate - but still scary). He is really hurting. It all started with the trip out of the PICU, just the simple bumping along the way really stressed Jack out. I asked about increasing his pain meds. They call the orthopedic resident and he said "no way" is he increasing the pain meds on a kid who just had a respiratory event. (not sure why they called him on the pain issue). The peds team then shows up, along with the ortho resident, and they give me the spiel about how they don't want to increase his pain meds because it will decrease his respiratory drive. I'm about ready to throw the ventilator at them. Where is the pain management team and where is pulmonology?

....

It's been a while since I started this. Jack has calmed down some and the pain management doc came by (a nice individual this time) and he is going to increase Jack's continuous morphine. We both agree that the nurses need to be consistent about giving Jack the bolus morphine every 20 minutes like the order is written.

The key here: Be PROACTIVE, not reactive!

It's going to be a long night. *Sigh*

Moving Out

They are moving us out of the PICU. I guess I should be grateful we stayed through the weekend. We don't even get a private room. I'm so PO'd right now, it's probably best if I keep this update short. If I type what I'm feeling, it would probably be sensored by the FCC. So, now you know how mom feels! As for Jack, more awake time equals more pain. I have to be realistic and accept the fact that he isn't going to get through surgery and recovery without any pain. If I thought I could convince them to put him in a drug induced coma for 6 months, I'd try. I think I'm the one who needs the drug induced coma right about now! We should be on the floor in a hour or so (it's 1:25 St. Louis time). Once we are on the floor, I can use my cell phone. So, those of you who have my number ... feel free to call. I'll update later tonight, if I haven't been kicked out of the hospital.

Thanks Kari and Kerry for sharing your jokes. I need more jokes to counter the debilitating effects that my current stress level is causing to my hippocampus!!

Looking Better

Jack is looking much better today. He's still sleeping most of the time, but does open his eyes when someone walks in the room. He's also found his voice again and is humming songs for everyone who is messing with him. He wants us all to know that he knows what's going on, so we'd better be nice! He did have to get a unit of blood today because his hemoglobin was low. He's now got a little more color in those puffy cheeks of his. Still no smiles.

The orthopedic resident told me that we aren't going anywhere and that they have to go through her before he gets moved to the floor. She appears to be a force to be reckoned with -- and a good person to have on your side. There are a lot of empty PICU beds today, so there really is no need to rush us out. The PICU docs have not been adamant that Jack move to the floor, they just keep mentioning it. I'm sure from their perspective, they see getting out of the PICU as a good thing. Not too many people beg to stay in the PICU.

I was reading the latest edition of Reader's Digest this morning and read an article about ways to make your brain better, faster and smarter. Just a little bit of interesting trivia:

The bad news:

In no uncertain terms, traumatic stress is bad for your brain cells. The hippocampus, which is the primary locus of memory formation can be seriously debilitated by chronic stress.

The good news:

Humor stimulates the parts of our brain that use the "feel good" chemical messenger dopamine and may make us smarter.

So, here's a little humor that made me laugh (and maybe even a little bit smarter):

The following real student answers reveal why faculty members require long summer vacations:

Q: Where was the Declaration of Independence signed?
A: At the bottom.

Q: In Shakespeare's Julius Caesar, what warning was given to Caesar about March 15?
A: The toothslayer said, "Beware the March of Dimes".

Q: Who are the Aborigines?
A: They're the Native Americans of Australia.

Have a great rest of your Sunday and don't forget to laugh today! As soon as my little man flashes his smile, I'll be sure and share it with you. Thanks for checking in.

It's all a matter of perspective

The orthotist came by this afternoon to put Jack's body brace on him. He molded Jack in the operating room right after the surgery. He told me he thought the degree of correction was "amazing". I guess it's all a matter of perspective. I have a tendency to expect perfection. One of Jack's doctor's once told me that I needed to "temper my expectations". Unfortunately, I'm just not willing to do that. However, in this case, it was good to get the perspective of a knowledgeable and unbiased individual. I'm going to take his observation and run with it.

I was talked to by a very condescending individual from the pain management team this afternoon. And I mean talked "to". He spent a great deal of energy making sure I knew that he knew what he was doing. He also told me that he would take his cues from me regarding increasing Jack's pain meds, all the while not listening to a damn thing I had to say. He didn't really bother me because I'm comfortable with my knowledge and I'm comfortable with what I was asking for and, most importantly, Jack was much more comfortable today. Hopefully, there won't be any need to make any changes to his pain meds at this point.

The orthopedic resident whispered in my ear that they hope to keep us in the PICU for as long as possible and the PICU people are telling me Jack might move to the floor tomorrow. I'm hoping the orthopedic guys trump the PICU guys because I need to be able to leave Jack's room from time to time and know he will be alive when I return. Once he's on the floor, I'm a prisoner of his hospital room.

I decided I'd post a picture of Jack so that you all could see him for yourself. His eyes are still so swollen he can barely open them. I'm not sure when he will be back to looking like himself, but hopefully, very soon.

Thanks again for all your comments, they make my day!

Hanging in There

I left the hospital at midnight so that I could catch a few hours of sleep. When I left, Jack was doing ok ... not great, but ok. As many of you who are reading this know, when you have a child who requires 100% assistance with every aspect of his life, it is very difficult to watch other people manage your child's care. Even though they may be doing it well, they aren't doing it your way. I am literally sitting on my hands to keep myself from pushing everyone out of the way and just doing it myself. I actually had a respiratory therapist ask me if I suctioned Jack at home. *Sigh*

Pain control is an issue I'm not completely happy with. He is getting continuous morphine through his IV and he also has a pump that allows him to be given a bolus of morphine every 20 minutes. They are waiting for my non-verbal child, who can barely move a muscle, to "tell" them he is in pain. I think it's safe to assume that he is. When I left last night, I asked them to please just assume he is in pain and give him the extra morphine every 20 minutes. It didn't happen. Another *Sigh*. All I can do is just keep asking. It's not so bad that I need to pull a Shirley MacLaine "Terms of Endearment" moment.

As far as what they accomplished during those 9 1/2 hours, Jack has 34 screws supporting his spine, along with the two rods - one on each side of his spinal chord. The screws start at T-2 and go all the way down to his sacrum. Picture a 17 rung ladder in his back and you've got a fairly accurate visual. The orthopedic surgeon came out with before and after x-rays. Jack is definately straighter, but far from straight. The surgeon could sense my disappointment with the degree of correction and went on to explain that Jack's bones are like mush and he couldn't put any more tension on the screws to make him straighter because the screws were sheering through the bone. Ugh! As he said, you have to work with what you are given. I'm confident that the amount of correction he was able to accomplish will make a significant difference in Jack's quality of life.

Thanks for checking in. Jack is awake and his eyes are calling me.

We are in the PICU

After 9 1/2 hours in the OR, Jack is in the PICU. His face is incredibly swollen because he was in a face down position for a long time. He looks like he's been hit by a mac truck -- and is almost unrecognizable. He opened his eyes for me and the tears started flowing (from him and me). They have him pretty drugged up and I'm hoping he doesn't wake up for a while. Thanks so much for checking in and for leaving us such wonderful messages of love and support. You have definitely carried me (and Jack) through this day.

6 hours and counting

Jack is still in surgery. It took close to 2 hours just to get all of his lines in (not surprising). Even though he went back 6 hours ago, he is only about 3 hours into the surgery (from the time of the first "cut"). I could give you a bunch of details, but it's probably more than you want to know. Jack is one of the bigger cases of the day ... so, we get one of the private waiting rooms. Bonus day! It's a very small room with no windows. Kind of reminds me of my office at work - I almost feel at home (sorry guys, couldn't resist :-) The picture is of Jack and me right before he was wheeled off to surgery. I'll update later tonight.

Jack and Mommy

Together we can do anything

The Calm Before the Storm

Today was a relaxing day. I even got to sleep in until 9am (I won't tell you what time I went to bed :-) Jack and Eric helped water the flowers (and me) . We had lots of visitors today. Our friend Holly (one of Jack's former nurses) and her little boy Will came by to say "hi" and another one of Jack's former nurses, Tammy, came by with her three little girls to visit with us. We also got to visit with Jack's biggest fan - David and his daughter, Myra. It was nice to just stay put for the day. We have to be to the hospital by 6am tomorrow for a 7:30 surgery start time. I'm taking my computer with me and will update as soon as I can. Thanks for checking in and for leaving us your thoughtful messages. I appreciate all of them.

Surgery Details

We met with the orthopedic surgeon today and I was "forced" to hear the details of the surgery. To put it simply, they will put Jack on a "rack" (the surgeon's word - not mine). They will place a halo with screws in his head and screw some other device to his knees, then they will stretch him out as far as they can to straighten his spine. Then, they place two long rods - one on each side of his spine, place brackets all along the sides of his spine to keep the rods in place, and place anchor screws in his pelvis. It just sounds so barbaric to me. The surgery is expected to take 6 1/2 hours. After we met with the surgeon, it was off to the lab for pre-op blood work. It took 7 sticks to get all the blood they needed for the tests - poor Jack was such a trooper through it all. I think Jack will need a more permanent line put in (a central line) because if he blows an IV, it will be near impossible to get another one in. Needless to say, Jack and I were both glad to get this day over with. I'm beyond scared for Friday ....

Busy two days

We've had a busy two days. Both boys saw the ophthalmologist yesterday. Jack needs a stronger prescription and Eric needs glasses. Eric is farsighted and, as a result, has a lazy eye. Should be fun keeping glasses on a four year old. Eric scared me to death when he was asked to identify the letter on the screen and his response was "I don't see any letters". I thought for sure he was blind in that eye and it was all my fault because I hadn't taken him to the eye doctor sooner. Fortunately, when the letter was made bigger ... he could see it. Phew! Jack saw the cardiologist today. They did an EKG and an echocardiagram and nothing of concern showed up. After the cardiologist, it was off to the ENT. Everything is "cool" there too. We spent close to 5 hours down at Children's Hospital -- the majority of the time waiting. However, it's worth it to have all of Jack's doctors located in the same building, all with access to his information. Tomorrow we get to do it all over again! Today's pictures are from the rooftop garden located on the 8th floor of the hospital. The first picture is of Jack making a wish and throwing his penny into the wishing pond. Hmmmm, wonder what he wished for? Thanks for checking in on us.

Arrived Safely in St. Louis

We arrived in St. Louis this evening safe and sound. What a long two days! The first day you think "this is okay" ... by the second day, you are thinking "why am I doing this again?". We have a week of appointments, beginning with the ophthalomologist tomorrow for both Jack and Eric, the cardiologist and ENT on Tuesday, the orthopedic surgeon, anesthesiology consult and pre-op blood work and Wednesday and Thursday is a day of rest. (yeah, right!). Thanks for your continued prayers and good thoughts.

Half way to STL

We arrived safely in Amarillo after 12 1/2 hours on the road. Seems the more we do this drive, the less painful it is. Although, I'm not sure Mark would agree since he does all the driving. Jack is such a good traveler and was happy the entire time just watching his videos. Eric and Jack's nurse - Kristi - will fly out to St. Louis tomorrow morning. The girls are at the house with friends of ours until Monday, then they will stay with my sister until Mark gets back into town.

Thanks for your thoughts and prayers ... keep them coming. Here's a picture of Jack watching "Elmo" as we are traveling through New Mexico.

Thanks Edward Jones

Mark's co-workers at Edward Jones gave Jack a special bear to keep him company in St. Louis. Jack loves his "doctor" bear. Thanks so much.

Hospital Cheat Sheet

My friend Erin and her daughter, Sara came over last night to visit with Jack (and me) before we leave for St. Louis. Erin put together a Hospital Cheat Sheet with common phrases for dealing with medical professionals. It is a classic and gave me a much needed laugh. Here are a few of the phrases I may need to use in the next 3 weeks:

1. No!
2. Can we go yet?
3. Is it supposed to look like that?
4. Do I look that stupid?
5. I am not YOUR mother.
6. How old are you?
7. Who are you?
8. Yes, I know how to suction.
9. When can we leave?

and if all else fails ......

10. I am an attorney! *

Thanks Erin!
* to all my doctor friends who are reading this, you know that I would never actually use this line. :-)

Those of you who know me, know that hospitals and I don't mix well. It's so difficult to turn over Jack's care to other people -- even though the majority of them (at St. Louis Children's Hospital) are excellent. But, I know there will be some challenging times in the weeks to come. Pray that I have patience and think twice before I speak!

Jack

Jack's Sibs

Hilary,
Mary and
Eric