well today was a good day, although it did have its challenges. Greyson had some troubles with de-satting that was not fun. They made some adjustments to his ventilator and tonight he is doing much better. We had him in his bouncy chair, played various games with him, and watched him entertain himself.
The best news from today is that his g-tube infection is looking much better. So not a lot to report, other than to state how much of a joy he is (we’re not even biased, honest!)
The church day is done and I am heading off to Tacoma. We are having trouble getting our laptop to connect to the web from the hospital so there may not be an additional update with a picture. We’ll see if I can get it to connect when I get there. Anyway basically the only news today is Greyson had a blood gas and his co2 was higher than we would like (67) The Dr. said we needed to move on and not worry about that so much, but I am uncertain how the pulmonary specialist will feel about this as he was the one that said he would like his numbers to be in the 40’s, which todays definately was not. So we’ll see what he says tomorrow. Other than that he had a pretty good day from what I hear. I’ll try to update more when I get to the hospital, but thought I’d throw something out there in case I can’t connect when I get there.
Well we met with the RT for the ventilator today at our house. Our house seems to be OK so the next step is to meet with him in the hospital to plan a discharge date. They won’t deliver all the stuff for Greyson until right before he comes home, since the insurance won’t pay for it if they give it to us while he is still in the hospital. The good news is that is all moving forward. We haven’t heard anything from the nursing so on Monday we will make sure we get in touch with them.
I am very happy to say I was able to get Greyson out of bed and into a chair all by myself today. While it seems like it should be no big deal, it takes a bit of manuvering with all the tubes. Most of the problems come from the fact that it is a little intimidating. Parents who’ve been through this tell us we’ll get used to it and it will not be such a big deal. I’m sure that is the case but right now it seems like a daunting task to simply pick him up and move him around alone. Having said that it is already much easier when Stacy and I can work together, so doing it alone will improve over time as well I’m sure. Greyson was very playful today and stayed awake all afternoon and into the evening. We really had a lot of fun playing with him.
Greyson really does love his mom. She puts in a lot of effort to give him all his medicines, hook up his feeds (he’s now getting all his food over 1/2 an hour! OK wait not ALL his food but three hours worth at a time), etc. etc. I think I’ll give her a gold star as a reward.
OK I’m sitting at my computer at home trying to remember all that happened today. We are set up with the home health supply company who will be providing the ventilator. The guy is coming out tomorrow to do the home inspection and get us all squared away. He said it usually takes 10 days for them to get everything ready and delivered here as well as set up. So that could mean we are 10 days away from Greyson coming home. Then again who really knows? We haven’t heard any more from the nursing side so we will have to do some checking if we don’t hear something by Monday.
The culture came back on Greyson’s g-tube and he has a staff infection. They already have him on antibiotics for it so hopefully it will get better in the next day or so. It is red and obviously uncomfortable for him. The surgeon still has to come look at it to see if it needs to be drained.
In other news Greyson’s trach seems to be a bit small for him. He is probably not ready for the next size up, but has quite a leak with this size. They fixed it by injecting more water into the cuff and that seems to be working. In case you are not familiar with cuffs (for trachs not on shirts) it is basically like a little water balloon that inflates around the trach tube in the throat to seal it off. This is all good but could cause a problem as we have two other philly flex trachs that are the same size. We change them once a month so if it is almost to small now, will the others work in three months? They (hospital staff) will work with this and figure it all out. That’s why we pay them the big bucks. Should we be worrying about him outgrowing things? You bet! We weighed him today (which we haven’t done in quite awhile) and he was 13 and 3/4 pounds! That’s right, almost 14 pounds!
We got Greyson’s new stroller today. We had to buy a new one that is a double (yeah we have twins!). Actually we got a double so Greyson can go in the front, and all his gear can go in the back seat. This is going to be very necessary since Greyson will not be traveling light.
As I write this Greyson is makng cute little snoring sounds and moving his mouth around like he is talking. Pretty cute stuff. Greyson was a very good boy today and whethered many visits from doctors and staff with good humor. His cardiologist came by to do an echo. It was a good report. Then a group of RT students came by to watch Mom and Dad do trach care. The pulmonologist also came by to review Greyson’s charts and stuff to see about going home. He said he was a little concerned about his high co2’s (they are still in the mid 50s usually). He would like him to be ideally between 35 and 45. It wasn’t really clear whether this will delay our departure because he also talked about lining up our nursing care, doing our training, and getting our equipment. I was here alone and didn’t ask enough pointed questions so we are a bit confused as to what exactly he was thinking but one thing is for sure, we really trust these doctors and their recommendations. If he doesn’t think Greyson can safely go home we are going to be grateful that we have someone here to set a safe path that will lead to healing and success. The pulmonologist will check back Monday and will be very involved with us from here on out.
One area that could use some prayer is Greyson’s g-tube has a little infection on the surface. They are giving him some antibiotics and some antibiotic ointment to fix it up. Sounds like it should resolve pretty easily, but in the mean time I’m sure it really smarts.
Greyson got to have some well deserved tub time today. He really enjoyed his soak and even posed for this cute pic. We love him so.
Greyson had a good, but sleepy day again today. The only real changes are that they turned his oxygen down to 28 percent (and he’s still doing good) and they weened down his detox medicines a bit. Not really much else to report for today. There is probably more but we are about to do his trach care and need to prepare so if I think of something else and get a chance I’ll write more later, if not goodnight.
Greyson had a good, but sleepy day again today. The only real changes are that they turned his oxygen down to 28 percent (and he’s still doing good) and they weened down his detox medicines a bit. Not really much else to report for today. There is probably more but we are about to do his trach care and need to prepare so if I think of something else and get a chance I’ll write more later, if not goodnight.
April Fools! Ha, I’m not including a picture! Or am I? Truth be told we forgot to get batteries and couldn’t take any new pictures. I’m not sure if I’m going to post an old one or not, we’ll see when I get done typing.
So it’s late so we are just giving a quick update. Big things for today are: 1. Stacy and I attended a g-tube (feeding) class and learned more about Greyson’s feeding tube and how to care for it or handle emergencies with it. 2. We changed his trach ourselves to the phily flex type (I pulled the old one out and Stacy put the new one in) it went really well. 3. Greyson sucked on a pacifier all on his own for a long time today (this is significant because he has always had to have someone hold the pacifier in because he spits it out). 4. They turned his oxygen back down to 30 percent (can’t remember if I put that in yesterday or not, they did it last night) and turned his rate down to 30 from 35.
We also got a call from the home nursing company so that is progressing. Hopefully thursday we will get the equipment company figured out and the pulmonary specialist will OK Greyson to go home (he’s meeting with us on Thursday instead of today). So we are moving forward! OK so here is an old picture you’ve seen, with some cool modifications. Enjoy.
So today went by incredibly fast. We met with a lot of people today which kept things racing forward. Speech came by and worked with us and Greyson to try to prepare him for a swallow study. Unfortunately he is not quite ready for that yet, but we will keep working with him to try to get him to a point where they can do the study.
We also met with the Dr. and he said from his perspective Greyson is basically ready to go home. The pulmonary specialist will check in on him either tonight or tomorrow and lay out any additional changes that will have to be made before he thinks Greyson can be discharged. We also met with the discharge planner and learned there is a slight hitch in the home plans. Apparently many companies are having trouble getting respitory therapists to work for them so they can’t supply ventilators (you have to have an RT availible at all times to service the ventilators). She is meeting with a company on Thursday that might be a possibility so pray that everything will work out with that. We also haven’t heard form the nursing company, although they told the discharge nurse that it would be fine. She is supposed to call them again today to check on that. So basically it seems like we are down to finishing our training, lining up the equipment and nursing, and getting this guy home! We are praying this can happen quickly as we are more than ready to try this all out in the home environment.
Today I did the trach care solo, and suctioned Greyson completely solo (no one else was in the room, not even Stacy!). We are both feeling more comfortable with all his care, although when we stop and think about it we can easily get overwhelmed. I guess the key is to keep moving fast so we don’t have a chance to stop and think!
So today went by incredibly fast. We met with a lot of people today which kept things racing forward. Speech came by and worked with us and Greyson to try to prepare him for a swallow study. Unfortunately he is not quite ready for that yet, but we will keep working with him to try to get him to a point where they can do the study.
We also met with the Dr. and he said from his perspective Greyson is basically ready to go home. The pulmonary specialist will check in on him either tonight or tomorrow and lay out any additional changes that will have to be made before he thinks Greyson can be discharged. We also met with the discharge planner and learned there is a slight hitch in the home plans. Apparently many companies are having trouble getting respitory therapists to work for them so they can’t supply ventilators (you have to have an RT availible at all times to service the ventilators). She is meeting with a company on Thursday that might be a possibility so pray that everything will work out with that. We also haven’t heard form the nursing company, although they told the discharge nurse that it would be fine. She is supposed to call them again today to check on that. So basically it seems like we are down to finishing our training, lining up the equipment and nursing, and getting this guy home! We are praying this can happen quickly as we are more than ready to try this all out in the home environment.
Today I did the trach care solo, and suctioned Greyson completely solo (no one else was in the room, not even Stacy!). We are both feeling more comfortable with all his care, although when we stop and think about it we can easily get overwhelmed. I guess the key is to keep moving fast so we don’t have a chance to stop and think!
