Hard at Play

We made it home Tuesday night. Wound care told us to continue cleaning the eschar with daily shampoos with Baby Shampoo only and we are applying betadine around the edges. Our neurosurgery team in Dallas was impressed with the work of our neurosurgeons at home. They are not terribly worried about the skin over the shunt being too thin.

Jack got right back to the business of playing when he returned home. He's a hard worker. Today was a very busy day for Jack...he had school/therapy this morning, therapy this afternoon and then got invited to play with his old friend Riley this evening. What a busy schedule he has. Anyway, here's the evidence that he's been hard at play....look at those feet...

you don't get those kind of feet from sitting around!!! Here's the sweet fella all tuckered out from a hard day's play!

The News So Far

I am not certain that my posts are going through to Blogger but I figured that I would try. Here's what we know as of late yesterday evening: Jack has bilateral (both sides) ear infections. The ear infections apparently caused cellulitis along his shunt tract. The combination of symptoms from the ear infection and cellulitis closely mimicked early signs of shunt infection. Fortunately, Jack's cerebrospinal fluid was clear as of yesterday and they are taking that as a final result. His CT scan, shunt series (x-rays) and abdominal ultrasound all looked good. Today, Jack will get evaluated by wound care for the escar on his incisions--they weren't here this weekend and we're apparently swamped yesterday. The plan is to get us out of here today and put Jack on a long course (at least 21 days) of antibiotics by mouth. We will discuss any additional restrictions with the team when we see them today. Oh, and for everyone worried about the thin skin over the shunt, we are going to t!
alk with
the team about that too.
Thanks for all the prayers. We hope to be home tonight.
Sent from my Palm Treo

Children's Hospital Dallas

We landed sometime around 845 am, got our rental car, got directions to Children's and headed to the ER. Jack is NOT happy about being back in a hospital but the experience so far has been as good as you can get if you have to be at a hospital. Jack has always been hospitalized at Medical City in Dallas so we've only been to this hospital to see Dr. Price in her office here. The atmosphere here is just a great one. Maybe we just got the right doctors and nurses but so far we've been made to feel like we are all a team working on Jack together. We've been listened to, accomodated, respected, and overall cared for. The rooms are very large and updated. They have room service and even parents can get trays delivered once you go down to the cafeteria and buy meal tickets. Dairy allergy? No problem. They tell us what we can get and what we can't and offer suggestions of substitutes when what we want has dairy in it.
So what's going on medically? Jack's white blood cell count is significantly elevated. That confirms that he has an infection of some kind. The x-rays called a "shunt series" and the shunt tap confirmed that the shunt is functioning properly. The cerebrospinal fluid from the shunt tap does not show any immediate signs of infection but we have to wait a few days to allow the bacterial culture time to grow. Jack had a CT scan of his head but we have not heard results from that. For now, Jack is on IV antibiotics. They are allowing him to eat and drink and he is taking full advantage of that! They are really thoughtful in the care that they provide here-no sense in keeping a toddler unhappy when he is unlikely to have surgery soon. Our excellent ER nurse realized that Jack would be too hard a stick for her and went and got their best IV starter to do Jack's IV. A little bit of looking and one needlestick later and Jack's labs were drawn and his IV was started. When they realize!
d they ne
eded some more blood, there was never even a suggestion of sticking him again. They said, "Oh, of course, we'll try to get it from the IV." When we arrived in the room and the nurses began their initial history taking, they saw two tired and weary parents and a sick toddler and they said, "We'll get that medical summary you typed and brought from home. After we review it, we'll ask you if we have any more questions. You've done this enough that you probably already wrote down what we need to know." Jack has become super attached to his chair-the carseat/stroller/plane seat. He just wants to stay in it. So everybody just assessed him while he sat in the chair. He only had to get out of the chair for the shunt series, CT scan, and shunt tap. As soon as he could, back in the seat he went. After we got settled in our room, the three of us pretty much passed out. The staff apparently came in and out. They put an armbband on him and did not disturb any of us. He needs vital signs !
done agai
n this shift but he still gets very bothered by having his blood pressure taken so the tech said just "call me when he is good and asleep so we won't upset him."
Your prayers are working. We are receiving excellent medical care in a way that respects Jack as a person and us as a family. We feel well taken care of.
I'll try to keep the blog updated.
Sent from my Palm Treo

Please Pray for Jack

It looks like Jack has another shunt infection-tender abdomen and neck, splotchy red area on abdomen, redness along shunt tract including top of head and neck, temp 101.5. Called Dr. Sacco in Dallas. He says that we need to get Jack seen in no more than 24 hours. We are not sure we want to give our local guys another go at it because we have heard that they have a lot of infections. We fly to Dallas at 7 am. Pray for wisdom, cooperation, loving kindness to one another, and most of all excellent medical care for Jack.
He's been through too much!

Driving and Crazy Alabama Weather

Does anyone know Jack and not know that he likes cars and driving? Here he is signing drive/car while sitting in his car about to take off on a drive. This car was one of the best purchases I ever made. I bought it at the thrift store for something like $8.75 before he could ever walk. He started out just pushing it and graduated to sitting in it while I pushed and now he pushes himself around only stopping to sign help when he gets stuck in a little rut or something. He loves to bump into the house and the poles that hold up the deck (that's okay, right?). Jack also loves trees. Whenever we are out in our yard, he has to go give our trees (we have two--one in the front and one in the back) a little love. I just thought this was a great picture. He looks so pensive.
Snow in Alabama! We have such crazy weather here. We woke up to snow on March 8th. That doesn't sound so crazy until you realize that we'd had highs in the upper 70s just a few days before. I was afraid that it would all melt before Jack could get out in it so as soon as we woke up (before coffee or breakfast) I dressed Jack up and we went outside. I was so excited that I forgot that I was not supposed to put anything over Jack's head.
Here's Jack playing with our Easter decorations. Our sweet, crafty neighbors Lexi and Lori decorated our tree for us while Jack was at school one Friday.
I think this is when I looked at Jack and realized, "Hey your head is all covered up and Dr. Wellons said no hats or head coverings of any kind." He was not happy about going back inside but it was cold and I could not let him hang out without any breakfast and nothing on his head. How do you cover up ears without a hat? I tried (on another day) to tie a scarf just around Jack's ears and all you could see was the top of his eyes peeking out. It just didn't look safe. :)
Everyday life--this is what I love!!!

Why is Mommy yelling?

Today, ordinary life almost turned into neurosurgery for Jack. Jack's new VP shunt is under a very thin layer of skin at the top left side of his head. The skin is so incredibly thin that there were already two little scratched areas when we took the bandage off on February 29.Here's a view of them from the top of his head. Well, Jack likes to practice yoga throughout the day and he gets into a downward facing dog position with his feet flat and his head on the floor. Here is something similar to what Jack does.

Because of his yoga posing, Jack rubbed another little area along the shunt. None of these areas bled and they were all healing up nicely by the time we saw Dr. Wellons for follow up. Dr. Wellons said that he wanted to continue to watch the areas carefully and he did not think all of Jack's stitches were ready to come out so he asked us to return in a week.

It's not been a week yet and today I found myself having to speak to the resident on call for neurosurgery. UGH!!!

Here's what happened: we went to get Jack's glasses adjusted. Jack was behaving so nicely especially for a 2 3/4 year old who did not get a nap that day. He was holding my hand and staying next to me just as I had told him to do before we arrived. It was just the two of us and one other customer in the optical shop so I told him that he could explore the waiting area if he wanted to. Like any typical child still adapting to walking/running, Jack took off in a bit of a clumsy manner. There were no sharp edged tables, nothing was on the floor to trip over, and there were no sharp objects in sight and it had a large open area so I felt safe in allowing him to explore. He went over by the eye glass wall and I moved closer thinking that he might need help to keep from pulling glasses off the wall. Next thing I know, he has run into the smooth plastic "thing" that holds up the eye glass display. The thing was right at top of the head height so he never saw it. As I said, it was smooth plastic. Initially, I just helped Jack get to his feet and went on about our business. There was no reason to believe anything was seriously wrong. Jack was not crying or acting strange and like I said it was just a piece of smooth plastic at the wrong height for Jack. On the way to the car, I noticed that the biggest shunt scab had a little bit of blood underneath it and I thought that he might have knocked the scab a little loose and caused some bleeding. Minutes later, when we were in bright light, I realized that there was more blood and the abrasion appeared to have at least widened and maybe deepened.

I called Dr. Wellons' office and the nice receptionist tried to help me but all the nurses were gone for the day. She asked, "Is this a medical emergency?" Well, the truth was I did not know because I did not have anything that I felt comfortable using to clean up the area to see what was going on and I did not know if I should head home or head to Children's. So I said, "It might be so I need to speak to someone medical--either a doctor or a nurse--so they can advise me." She put me through to the resident and he told me that I should go home and clean up the area and if I saw the shunt hardware, I should not let Jack have anything to eat or drink after midnight because he would have surgery the following day to remove the shunt, then a ventriculostomy would be put in, and after a course of IV antibiotics, the shunt would be replaced.

What?!!? Because of an everyday happens to every kid on the planet mishap?!!? I knew the skin was thin. I knew that Dr. Wellons warned us to be careful but could the skin really be that thin?

Fortunately, this time the answer was no but I am so incredibly ticked off that a neurosurgeon would put in a shunt so close to the skin that a kid cannot be a kid. Are we supposed to tie Jack down? Am I negligent because I let Jack explore the optical shop? So, yeah, Mommy was yelling tonight when she was telling Aunt Lisa about what happened. Aunt Lisa used all the words that Mommy was trying to avoid...she got it but Daddy did come across the house to ask who I was yelling at.

I've got to let Jack play and explore and yes, sometimes he has to do the downward facing dog. I don't get it but fighting him on it only makes him try to do it more and trying to pull him out of the pose can cause an abrasion too. I covet your prayers and would enjoy your spirit-led comments or bits of wisdom. [No destructive criticism needed.] ;)

Hospital Pictures

I did take a few pictures while Jack had his 8 day hospital stint. This first picture is after his surgery on February 19. Dr. Wellons cut off the abdominal portion of Jack's VP shunt tubing and externalized the tubing at his chest. This is the external drainage system that they use at our local children's hospital. When they just removed the lower part of the tubing, Jack did not really have to stay level with the drainage system because he still had his shunt with the valve in and the valve regulated the drainage flow.
Then, on Wednesday, February 20, Dr. Wellons removed Jack's VP shunt and most of the left subdural shunt. Since there was no longer a valve in place, Jack had to stay level with the external drainage system.

See that little tube? It was connected to a space in Jack's brain called the third ventricle.
Nothing can pull Happy Jack down for too long. Even after having three of his fingers pricked (see the bandaids on his fingers?) he managed to laugh!
Jack did not watch Baby Einstein the whole time. He also found a little time to read...
and eat!!!!!!!!!!!
Once we got the okay from Dr. Wellons and Jack's nurse, we headed out for a wagon ride. Jack was a bit nervous.

He did not spend the whole ride looking terrified. He did eventually relax. I just don't have a picture of relaxed Jack. Jack had a lot of visitors but I did not think to take many pictures. I remembered to get a picture when Ms. Amy stopped by. and, of course, when Jack's big bro, Patrick stopped by.

I gotta go get some shut eye. I hope you enjoyed the pics.

WARNING--WOUND PICTURES

IF PICTURES OF WOUNDS MAKE YOU SICK, SCROLL PAST THIS POST AND THE NEXT 5 PICTURES QUICKLY.
This is the wound that started it all--Jack's "old" (placed 1/30/08) VP shunt incision. When David took Jack to his two week wound check, he noted a little bit of clear drainage from one end of the incision. Our family doctor thought that it might just be Jack's body reacting to the dissolvable sutures. He told us to cut the sutures while Jack slept and clean the incision. This picture was taken the night I cut the sutures and cleaned up the area.
This is how the incision looked as it healed.
Then it formed a scab. I sent these pictures or similiar ones to Dr. Fearon and he said to leave the scab alone and see how it heals.
Now, this is the picture that got all the attention. See the splotchy pink area above Jack's incision? The pinkness around the incision was not a big concern. That other splotchy area is what caused Dr. Fearon to alert Dr. Price who told us to take Jack to our local Children's emergency room.

By the time, the doctors at the ER examined Jack, this area was fiery red and hot and Jack would not allow anyone to touch his abdomen.