Westfall Web

Well today we got our first shake up of life at home.  Stacy called me at work and told me we needed to take Greyson to Tacoma to see one of his Doctors.  He has developed some granuloma tissue which is the bodies reaction to a foreign object (in this case his g-tube).  When Stacy called to talk to them about it they told us we needed to come in right away and get it taken care of, as if you leave it alone it can turn into a much bigger problem, and ultimately could lead to significant scarring later.  So I came home from work and we loaded all of his stuff up with all the batteries and headed off to Tacoma.  The treatment was no big deal, done by the nurse, and hopefully will take care of it.  Greyson was very good and really only cried when they put the lidacane on it to numb it (it was cold).  We were very proud of him and I tried to get Stacy to stop and get some ice cream to shoot down his feeding tube but she said that was really not something we should do.  With this type of problem (the granuloma, not the lack of ice cream) sometimes you have to do this treatment a few times, and sometimes you have to keep doing it as long as you have the foreign object.  We are hoping this will take care of it completely and we can be done with it.

Greyson also required A LOT of suctioning today and some of it was a little yellow (not good, sign of infection).  We adjusted his settings and he seems to be doing better tonight.  His secretions were thin and clear or white (how they should look).  The company is still struggling to find all the nursing we need, so tomorrow we are on our own from 7am till 11pm.  (I think that is when the night nurse is coming, not positive but I know she is working the night shift).  I am going to work from home so I can be a back up to Stacy since this will be our first prolonged period home alone with him.

 So I played Dr. tonight and turned down his oxygen, which I think was the right thing to do.  Not sure if I’m supposed to or not, but I’ve been in the hospital a long time and watched so I thought I’d give it a try.  Basically my rationale for doing it was pretty solid.  See in the hospital he was running 3/4 a liter of oxygen.  Well when we showed up with all our stuff to bring him home I realized our stuff only goes in 1/2 or 1 liter.  So I set it at 1 liter and that is where he has been.  I figured better to give him a little more than he needs than a little less.  Anyway he has been stating great since we brought him home so tonight I decided to try him on 1/2 liter.  We are keeping our eyes on him (as we always do anyways) but so far he has been doing just fine.  So if anyone needs a medical consult I’m availible, and my rates are quite a bit lower than what the hospital charges!  (a notarized medical waiver releasing me from all liability will be required before any consultation can commence).

Today Greyson tried out his swing and got some tummy time on the floor.  He is definately getting his head strength back and is starting to work on lifting himself again.  He liked the swing alright, I think it will take him a little while to get used to it, that has been his pattern for most new things. 

Greyson is still adjusting to being home and has had a lot of secretions as he adjusts to the different temperature, humidity, and new heater.  This means we are suctioning him a lot.  All a part of the transition process I guess.  Right now I am watching him in his room as he sleeps.  We have a video baby monitor so we can see and hear him (which we thought was important since you can’t always “hear” him.  He should be sleeping but he is just looking all around.  He didn’t sleep a lot last night or during the day so we are hoping he will sleep good tonight. 

Thank you to everyone who has wished us well with this new phase.  We are beginning to settle in and figure out how this is all going to work.  The amazing thing is you can already see Greyson acting differently.  Being home is going to be great for him, not to mention what it does for mom and dad!

Well today was another very busy day.  I woke up this morning to the sounds of a shrieking child (both at 4:30 and 7:30am) and felt like a real parent.  It was so incredibly nice to be able to throw on some clothes (we will have nursing here around the clock for another day, then they will be with us for 16 hours a day so clothing is important) and take five steps to see Greyson.  We are still dealing with getting everything set up which made today very hectic.  We had phone calls all the time, someone from the home infusion came by, we tried to put medical supplies away, gave Greyson a bath (a bit earlier than excpected as I was worried about his trach being a little loose), did his trach care, and now Stacy is holding him in the living room.  While I know we can never have the perfect schedule now, it will be nice once things calm down and we can settle into a routine.  I see this coming soon, but it may take a couple days for all the people involved in Greyson’s life (medical people as we aren’t even talking friends and family yet) to get us “admitted” and everything rolling as it should. 

So I don’t have a lot of funny stories for today, but Greyson did pee in his bathtub which was a first.  All we can say is how incredibly blessed we are.  God has certainly been good to us.

So this is my third post for today, so make sure you check them all!  It was a big day so I think everyone deserves some bonus material.  The video was rushed and heavily compressed so the quality is not great, but hopefully you enjoy it.  Remember you have to left click on it, then right click and select play.  My mom told me you couldn’t really see his whole outfit, so I had to add these pics.   The first is of his coming home outfit.  The second shows him from a couple minutes ago when he had slid down and was sprawled all over his pack and play, that’s what I get for telling him it’s all his! 

Well by the time we got the hospital this morning (pretty early since we stayed in the parent appartment across the street, we found Greyson had made himself a sign and was informing the hospital staff that he appreciated their services, but they were no longer needed as he would be making his way home today.  It was a good thing we were there to give him a ride, hitch hiking is dangerous!

When we walked in Greyson was all smiles and loving life.  We got everything together and then went to pick up his medications (he has quite a few).   When we got back to his room he was no longer a happy camper.  The technician was in there giving his heart an ultrasound and he did not enjoy it at all.  He got through it alright and soon we were packed up and headed for the door.  Greyson seemed really happy to be all dressed up and in his stroller.  He got A LOT of attention from nurses, RT’s, Dr’s, and people just passing by as he made his way down to the lobby.  As Stacy pushed him outside for the first time ever, he felt a cold blast of air hit his cheek.  This caused him to close his eyes and pout a little.  We loaded him (and half the hospital) into our car and soon we were off.  Stacy and I had our baby boy in our car and were headed for home (before Jillian I might add, ha ha we win, we’ll be waiting for that lunch!).  Greyson was a little cranky at first from the cold and all the uncertainty but soon settled in and went to sleep.  The sun was peaking out through the clouds and life on earth was good, VERY good.  When we got home we loaded him back into his stroller and took him inside.  We gave him a tour of the house and then got him settled in his pack and play in the front living room.  This allows him to stay the center of attention as we worked to organize the mass amount of medical supplies the hospital sent us home with. 

So it has been a great day.  Greyson is getting settled in here and I think he is really beginning to like it.  He has already pulled a prank on his nurse by pooping all over her hand and leg, so he’s fitting right in!