Home Sweet Home...again!!

We made it home Friday night, I can't believe we got out of the hospital so soon I was beginning to think you couldn't be admitted to the hospital without staying at least a month!!
Noel is doing much better now that she doesn't have barium inside of her. She is even taking small, very very small, amounts of formula through her g-tube. And during this admission we finally talked about weaning her off the Vent!!! Yay!
Her G.I. issues have some what overshadowed the progress she is making, it wasn't until a new attending (one we've haven't met yet, go figure) saw her and asked the all important question why is she on a vent? Well we know why...RSV. But why is she still on a Vent??? He saw how well she was sitting on her own and how interactive she was and said there should be no reason that she can't be off the vent for at least part of the day. Oh yay progress on one front! So the plan is to start her out slow for one to two hours a day off her vent and on a Cardin valve; this valve uses the pressure of 8 liters of oxygen to help keep Noel's lungs inflated so she doesn't have to do so much work on her own. But with this valve she will be initiating all of her own breathing. We have been trying this for small amounts of time and so far so good.
So the G.I. plan is to still go to Ohio to see specialist's, but it might not be for a couple of months. I'm looking into getting an Angel Flight to get Noel out there, but if anyone has any other ideas I'm all ears!

Here are some pictures from our month stay in the hospital that I wanted to share with you:

Hope you have a great day! Thanks for checking on Noel,

Tina

Back in the Hospital

Yup you read right, Noel is back in the hospital. We came down Tuesday night (in an ambulance this time) because Noel got worse again. An abdominal x-ray showed that Noel still had Barium in here stomach from a swallow study done 10 days earlier. This is the same thing that happened on her last admission. The moral of the story is no more barium contrast studies for Noel. She has been doing much better ever since we got her bowels "cleaned out." We are currently in the middle of a blizzard so I don't think we'll get discharged for at lease a couple of days.
Other than that Noel went to the eye doctor on Tuesday and was diagnosed with exotropia, which means that her eye's don't work together; because of her weak muscles her eyes are also affected. The most significant effect on her vision will be her depth perception. This diagnosis was a hard one for me to hear; I think it was the realization that her disease effects her from her head to her feet. We have been so lucky to see Noel make so much progress in the last year, but it's at appointments like these, when we get another diagnosis, when it makes me realize she does have a very horrible muscular disease. She has a follow up appointment with her eye doctor in a month and she may end up with glasses to help correct her vision. Thanks ahead of time for all the new prayers and thoughts.
Tina

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