Craziness!!

Craziness; that pretty much sums up my weekend. We were discharged on Wednesday afternoon, yay! I came home to my parents house, again; there is no way to take Noel back to Grand Junction at this point, she has too many follow up appointments and too many new piece's of hardware for me to be comfortable with her so far away from Children's. I'm sorry I haven't had time to update, this is the first time I have sat down at the computer since we left the Hospital. Since we've been home I've been going non-stop, unpacking, organizing, taking care of a toddler who has a vent, trach, g-j tube, broviak-which is hooked up to TPN 22 hours a day... I think you get my drift. As far as Noel's stomach, she isn't making much progress at all. She left the hospital taking about an ounce of pedilite every three hours, I tried adding a tiny bit (7mls) of formula and she did ok at first, but by the next morning she looked really sick again. I haven't been pushing her stomach to much the last few days but she is still retching a lot. Unfortunately we will have to make a trip to Columbus, OH soon to see specialists out there at the Nationwide Children's Hospital, I'm not sure when or how we'll get there but this looks like our only option, I'll let you know more once we hear from her GI doc's.
Other than that I'm just so happy to be out of the hospital. Being in the hospital isn't as hard for me as it use to be; I know a family who just spent over a year in the hospital where their daughter fought and struggled everyday. Knowing them makes being in the hospital for a couple of weeks not such a big deal; it has also taught me to never once take for granted the precious moments we get to spend outside the walls of the hospital. And as it looks right now we may be spending more time there soon, so we'll have to make every moment count!
Tina

Update

Sorry for not posting an update sooner, we have been so busy. Noel got her other chest tube out on Tuesday, yay! And since then she has been a ball of energy. She has been very active and she hasn't been taking a regular nap. I've only had bits of time to myself and it usually gets taken over by doctors or other hospital staff coming to talk about discharge! It looks like we'll be able to go home sometime next week. We will be going to my parents house in Black Hawk so that Noel can stay close to the hospital. She is still on 100% IV nutrition so it's going to take some getting use to having yet another medical component to our life. I just wanted to tell everyone thank you so much for your thoughts and prayers through this time, I have felt and appreciated all of them!
Love,
Tina

Update

Sorry to leave you hanging. Yesterday was a very hard day. Noel was in a lot of pain because of the chest tube; every time she took a deep breath she could feel them. We had her on lots of pain medicine and by the afternoon she was feeling a little better. I was super tired too so I didn’t get much done. This morning they took out her left chest tube, which was another very painful procedure, but with the help of pain meds she did alright. Her right chest tube (the right side is where the nick of her lungs happened) is still in and they’re still suctioning the air out. Hopefully the right chest tube will come out in the morning. As for the Broviak, the surgeon couldn’t find Noels sub-clavicle vein on either side of her chest; which means that Noel’s vascular structure is different than most peoples. The surgeon had no choice but to put the Broviak in her right thigh; it’s not the most ideal spot but it will work. We have a care conference scheduled for Monday to meet with all her doctor is one spot to see where we go from here. Thank you again for all your thoughts and prayers,
Tina

Chest Tube

Noel is going back to surgery at about 2am to get two chest tubes put in. During the broviak surgery (which did not go as planned, but I’ll update that later,) she received a Pneumothorax (which means her lung got nicked when they were trying to place the broviak and some air escaped into the layer outside of her lungs; with the placement of these chest tubes the air will drain out. I’ll update soon, please pray.
Tina

Noel's Surgery

Noel’s going into surgery at 5:30 tonight to get her Broviak. The same surgeon who has done her other operations will be doing this , so that’s good. Please pray that everything goes well and that she recovery’s quickly. I will update as soon as possible to let you know how things went. Thanks so much for being there for us on this tough journey.
Tina

Update

No news is good news right? Well no not really. Sorry I didn’t update sooner, but I was really hoping to deliver good news. Unfortunately we are now on to one of our worse case scenarios, Noel didn’t handle the pedilite at even 5ml per hour. Since she couldn’t handle the pedilite she is now on gut-rest and is getting 100% of her nutrition through her IV. She is going to be on TPN indefinitely, so sometime this week they are going to place a broviak (a more permanent central line to receive her IV nutrition from. As of now they are diagnosing her with low-motility (things move slow ) from her stomach to her bowels, sadly this is not associated with her underlying Muscle issues; Muscular Dystrophy does not typically effect the smooth muscles (heart, liver, intestines) so she may have a completely separate intestinal issue . We will continue to slowly try to feed her through her intestines; it’s a very slow process so it could be months before we’re able to feed her formula again. That's all for now,
Tina

When you work in a Hospital

Written by a parent (me) of a child with special needs

When you work in a hospital please be aware that you may be the only face that we see; you can brighten our day with a simplest gesture or smile; or you can darken our already frustrating day.

When you work in a hospital please don’t forget these are our children lying helpless and sick, we must be their voices and strength, but we are still human not super heroes.

When you work in a Hospital please understand that every word you say is magnified; when you say 10 minutes please recognize that to you 10 minutes and 25 might be the same, but to someone who’s watching and waiting for answers that extra 15 minutes can feel like an hour.

When you work in a hospital please remember that this may be your job, but this is our life. We don’t get weekends, holidays or vacations; we are on the clock 24/7.

When you work in a hospital you may be an expert in your field, but please remember that we’re the experts when it comes to our children, you may have years of schooling behind you but we have hours and hours of on the job training.

When you work in a hospital please don’t forget, we’re not here by choice; if it was up to us we would have stayed home, but we know we can’t do it alone. We’ve brought them here so with your help our children may be healed.

So this poem might give you some idea of the day I've had, long and frustrating. Noel's feeding issues didn't get any better today. She was pretty out of it all day, she slept most of the day. The GI Doc's finally came to see us (only 24 hours after they were first called) only to bring bad news. They don't have any answers either as to why Noel is having such a hard time tolerating feeds. Another abdominal x-ray was done to see the position of her j-tube and it's still in the right place. So the plan is to start giving her pedilite through her j-tube at 5ml per hour and see how she handles it, if she does good then we will increase it slowly. The best case scenario would be: she would tolerate the pedilite and then we could slowly mix in her formula. Once we start increasing the formula we might have to increase by only 1ml per 12 hours. So for those of you wondering how long that will take, you need to multiple 60ml (the total amount of fluid she requires per hour) by 12. And that's the best case scenario. Worst case scenario involves surgery along with other things.
Noel is scheduled to get a PIC line in the morning, because she'll need to be on TPN (IV nutrition) for an extended amount of time she needs to have better access. I'll let you know how tomorrow goes.
Tina