Friday, March 4, 2011

Who's Who in the Hospital

I came across the article below in my Kid's Health newsletter (which is a great resource if you have a child with any kind of recurring health issues) and thought I would share. I remember when I arrived at Lucille Packard for the first time for Bean and the overwhelm, but also relief, when I ran into (literally could not pass in the hallway of the hospital wing) Bean's "medical team" in the PICU. I started learning the different levels of training of the people working with Bean. Some of my favorite people were the Residents assigned to her. I still see some of them who have gone on to do fellowships at LPCH. And may of the fellows are still there, although now that we are not actually in the hospital for rounds, we see them much less often. In fact, at our last heart clinic visit we got to see my very own Dr. McDreamy (its ok - my husband knows about him) who gave me the report on Bean's first biopsy at LPCH. I believe he had just started his fellowship in cardiology then and he dropped by to see Bean last week and was amazed to see how big she was and how great she looked (the hospital is the only place people are constantly commenting on how "big" she is). It really does seem like a "team" in the true sense of the word when they are all working together.

Anyways, if you have been or will be visiting any teaching hospitals or have a child with an ongoing health condition, the following article will give you a list of professionals with whom you may have dealings. Knowing the possible resources is half the battle if you are placed in a large hospital setting. I must say that LPCH was very, very good about educating us on the resources available to us, but I have heard of others who were not so lucky. So, being able to ask about getting a visit from a Child Life Specialist or an evaluation by a Palliative Care Specialist is something you may not think of without some knowledge on why you may want to speak with one of those individuals. It also helps to know who is making the decisions, who has oversight for care, and who is talking to who and how often to make sure that you understand all of the different voices that are being heard on your child's behalf. And finally, being confident enough to listen closely, ask questions and have (educated) opinions is something that made me feel better throughout the hospitalization with Bean. I am glad that I was trained in communication and felt confident in my ability to listen to things, process them and ask effective questions. I realize that many parents don't feel that way. I also realize that some parents may feel defensive about things because of a lack of confidence in their own understanding. So, a little knowledge can go a long way to alleviate some of that defensiveness and give a parent back some of the control they feel they lose when you enter the hospital setting.

I am so glad that we have not had to have another hospital stay in quite a while and I hope that we will never have to have one for more than a couple of days in the future (that is a hope against hope I think, but who knows?). But, I am also glad that I can now enter the setting when we need to with a knowledge and confidence that will allow me to be an effective advocate, a comforting caregiver and most important, a good mom to Bean. I hope that if you find yourself (or if you know someone who finds themselves) in this situation, that the following information will be beneficial.

Who's Who in the Hospital

Wednesday, March 2, 2011

More Medical News - All Good So Far...

Hello out there!  Its been a while.  This past month, as is usual for me, has been a whirlwind of activity (travel for speech and debate every weekend, a new semester starting, illness for a week at the start of it, etc.) and I am glad to have February behind me.  March is looking only a bit better, but every day puts me closer to surviving the craziness.  In addition to all the work craziness, Mackenzie had two appointments last week at Stanford.  We were finally able to see an endocrinologist there and they seemed very happy with her growth progression.  Although her height and weight is still not "on the charts" (which means it is below the 3rd percentile for her age group), she is staying on a normal curve - it just falls below the 3rd percentile curve.  They said that considering her health history, this is actually very good.  They were a bit concerned with her head size being in the 75th percentile.  The girl's got a melon on her - that is for sure.  But, it does run in the Peterson family to have big heads and its always been big.  They are also concerned a bit with her breast tissue growth.   She has had some lumpy growth in her breast since she was in the hospital, but as this WebMD article says, this is often normal in babies.  So, they have not been too concerned, but the size was at least a little concerning to them, so they said they would do a blood test for hormone levels.  If they come back normal they will leave it up to the transplant team to decide whether to check out her head or not (they did an ultrasound via her fontanel after the transplant and all looked good other than some vascular enlargement that they were not terribly worried about). 

Since her fontanel is close to being closed now they would have to do an MRI to check it now and that requires her to be knocked out.  So, we'll be watching and waiting to see if we have to do that.  The hormone test consisted of her getting a shot (which she was not very happy about) and then waiting 40 minutes and having blood drawn.  The shot is designed to send a "pulse" of hormones out, and they read the maximum level of those 40 minutes later to see if she is producing too much hormone.  It takes two weeks to get the results, so we are now waiting.  They seemed to think that with no other signs of issues with hormones, that she probably is fine, but they wanted to be sure.  So, overall it was a very positive visit.

We also had our heart clinic visit and that was very positive as well.  Her echo continues to look great, she weighed 21 lbs. 7 oz. and she is now 29 inches tall!  She told Nancy, our transplant nurse, to "get out" when she came in the examination room, but soon warmed up to her and her Mickey Mouse watch that plays "Its a Small World".  She is growing to hate the doctor's appointments though.  I fear what the next year or so holds for us - while she is too little to really rationalize the visits but big enough to really protest everything.  Nancy is so great though - she got her to let her take her blood pressure by letting her push the button to start the machine and count with the numbers as they were going down.  It was fantastic to watch because Bean is very stubborn, but was willing to cooperate because she was involved in the process.  Nancy is just great.  So, I'm glad she didn't get out when Bean told her to!  :)

We are now on schedule for another biopsy in six weeks and are hoping for another zero, which would allow us four months before her second annual exam (what?  I can't believe its that close to two years already) and then hopefully if all looked good we could go to a six month biopsy schedule!  What a relief that would be.

Other than that, Bean has been doing great.  She is saying a ton of words (repeating after everyone and everything).  She loves baths and brushing her teeth.  She has grown out of her six month clothing and is now moving through the nine month clothes into twelve month clothes!  So, she's only a year behind on the clothing size time line!  :)  She recently went to the snow near our house and visited the fish farm.  Pics below!