Westfall Web

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We’re not trying to be too biased, but we’re pretty sure we have a very cute little boy here.  There are several nurses who now come and check on Greyson, even when they are not his nurse for the day.  I think he likes the attention and seems to get a little jealous when the nurses attention is focused on another baby.  He keeps them checking on him regularly by setting off his alarms on a regular basis just to make sure someone is paying attention to him. 

He continues to go up and down on his temperature now.  One minute he’s really hot so we unwrap the blanket and then he gets to cold.  They assure us that this just means he is getting close to being ready to be out of the isolette.  He is trying to regulate his temperature, but the isolette is also trying to do it and they can wind up working against each other. 

His midnight blood gas was really good (better than the noon one yesterday) but today’s noon gas was higher.  Overal he still seems to be handling the weening OK.  He is now at a PIP of 22 (PIP is how much pressure they blow into his lungs).  The nurse told me that when he gets to 20 they will probably try to ween the rate again.  Since he didn’t do so good when they tried to ween the rate last time, they are weening him further on the PIP before trying the other.  We’ll see how he does over the next couple of days.

His feed was raised again to 9 ml an hour.  He seems to be doing OK on it.  It is interesting to see it go up and down as the different Dr’s come on.  Thankfully we have been able to keep it at a lower rate which definitely seems to have helped him get over his puffyness.  He now looks really good and is probably close to being ready to gain weight again.   We went in early today so we won’t hear his weight until after 4:30pm, maybe I’ll post a quick update after we call and get it.  Overall he was very alert during his care times and we really enjoyed hanging out with him (as we always do!).

Just wanted to comment that the dates will show up correctly on the blog now.  Shaun fixed it for me today.  If you didn’t know Shaun is the one who set the blog up for me to use, and is providing the space/service/and support for all of it.  So everyone who appreciates the blog should join us in giving a big thanks to him for doing this for us!

Well today is Sunday which means I was unable to go see Greyson today.  Stacy got up early and went for the 8am and noon care times.  She tells me today was good day and that Greyson was very alert and active.  While she was there the nurse had her put on a glove and stick her finger in his mouth to see how he would do with his sucking reflex.  Stacy said he did really good and she was amazed at how powerful his little jaws are as he chomped down on her finger while sucking. 

Greyson is also getting very strong neck muscles.  We are amazed at how he is able to turn his head even with all the tubing he is attached to.  Today they set him up so he is lying on his back with the tubing secured behind him.  This allows him to turn his head from side to side without the risk of extubating himself.  If he will stay facing straight up it should help him with his pancake head shape that he is developing from only laying on the sides of his head. 

Today he saw the eye Dr (after Stacy had already left).  They didn’t really say how he did but did tell us that the report was that he has level 2 Retinopothy of Prematurity.  Basically this means he has moderate growth of abnormal blood vessels in his eyes.  At this stage they will simply check him every couple weeks.  Most kids do fine and go on to have normal vision.  By checking every couple of weeks they will be able to tell if it is advancing, and if it does they are able to do some laser treatments that should protect his vision.  Basically the worst that happens if they have to do the laser treatment is they loose a bit of their periphial vision. 

They are continuing to ween the pressure of the vent by 1 every 12 hours and so far his gasses continue to be decent.  We are unsure when they might try to ween the rate but the nurse said his lungs sounded really good, much better than last week. 

His weight was 3 lb 3 ounces tonight.  They raised his feeding to 8.5 ml an hour this morning, which if you are paying attention might seem a little strange.  Yesterday he was at 9 ml an hour but during the night they cut him back to 8 for 12 hours.  Then this morning they raised him back up.  He continues to look really good and it probably won’t be to much longer before he will begin gaining real weight again.

Well I forgot the camera today so no new pics.  So we thought we would take a moment and look at a picture from when he was born,and one more recently to try to compare.  You can decide how well I did.  Today was a pretty uneventful day.  Greyson’s blood gasses continue to be OK and they have started weening his pressure down a little.  They also increased his feeding back up to a rate of 9 ml an hour.  We talked to the Dr. about this and voiced our concerns that we might be rushing this again and he is in agreement with us (today’s Dr. was the one who reduced Greyson’s volume a couple days ago).  Unfortunately Greyson has 6 Dr’s and they don’t always agree on what to do.  Today’s Dr. is going to write in the notes a bit more directly and see if he can get the other Dr’s to hang with the plan for a little bit longer.  Greyson was down an ounce today to 3 lbs 4 ounces and continues to look really good. 

While doing his care I noticed he had some goobers on his eyelids.  Stacy told me I should clean them off, so I decided to try it.  Up until now I have refrained from messing with the eye goobers as the eyes are pretty delicate.  Anyway he had his eyes wide open and was looking all around.  Stacy told me to just get the wipe close to his eye and he would close it.  Boy was she wrong!  I would get it really close to his eye and he would just look all around.  I kept telling him to close his eyes and he just wouldn’t.  Sometimes when I would get it really close he would suddenly look at it and get a little startled, yet never closed his eyes at all.  Finally Stacy instructed me to touch the top of his eye lid and that got him to close his eyes just long enough to get it cleaned off. 

Just had to add this one as well.  Stacy took this picture while I was holding him and he was looking up at me.

OK a couple of housekeeping things before we go any further.  1.  If you want to see a bigger version of the daily pic, just click on it and it will open a larger version in a new window.  2.  The time is slightly off so the blog will usually show up as being one day ahead.  ie.  I write it tonight (friday night) it will post as if I wrote it on Saturday.  So the blog is always a day behind even though it says it is for the current day.  Hope that clears up any confusion.

 OK where to start.  Everyone is probably dying to hear what the decision was with the steroids so………Let’s start by telling you about the crib debate.  No not between Stacy and I.  When we arrived at the hospital Greyson was pushed up against the wall, facing the wall.  I immediately asked the nurse if he was in time out.  He wasn’t but they (the nurses) were having a debate about whether to take him out and put him in a crib.  Seems he has been running a bit hot in the isolette yet is not the approved weight to be released from the confines of the isolette.  After much debate it was decided to leave him where he is for now and watch him. 

 So After the debate was over we did the care time and then they decided to see how he might fair in a crib by allowing me to hold him wrapped in blankets so we could watch his temperature.  He was wide eyed and aleart, but really fussing for the first hour.  While taking his temperature he clamped his arm down and Stacy finally said, “OK you hold it!”  which he did!  After an hour we repositioned him and he calmed down and slept pretty soundly until I couldn’t take it anymore and had to put him back in the isolette.  He then slept like a log for the next couple of hours.

So what of the steroids you ask?  Well the truth is we don’t know.  Last night (after the update) his blood gas was pretty good (57).  Then at midnight it had crept up to 61 which was not a positive sign.  Well the Dr’s decided to leave him alone until noon for his next gas.  This gas came back with a CO2 of 47 which is great!  No changes have been ordered and we won’t get another gas until midnight tonight (friday) so we will see what is happening then.  We are praying God will continue to touch him and he will be able to make progress on his own without the use of the steroids, but we’ll have to wait and see what happens tonight/tomorrow.

Greyson is looking really good now, the puffyness is basically completely gone, and he lost about 30 grams today in his weight (remember this is good as he had previously gained way too much too fast).  Tonight he weighed in at 3lb 5 ounces.  He probably needs to hold steady for a couple more days in order for his real weight to catch up with what he is reading, but things are looking better.  Thanks to everyone for holding us up during this time, and especially keeping Greyson’s lungs in prayer as he really needs to get off the vent so his lungs can heal. 

Well unfortunately Greyson has continued to struggle with his breathing (well maybe a more accurate way to put it is he’s struggling with his ventilating?).  His CO2 numbers continue to be high and he is maxed out on the vent.  The Dr. came in and talked to us tonight and basically informed us that we would have to do something soon.  The options are limited.  They can’t go any higher on this vent so the only two options are 1)  Start a short round of steroids or 2) go back to the jet vent.  There are problems with both choices.  Greyson left the jet vent because he was fighting it to much for it to be effective.  The jet vent also agitates the lungs, even though it is doing less damage than the conventional vent.  If we went that route at some point he would still have to come back to the conventional vent and would probably still struggle to ween off it.  So the steroid option is the one the Dr. recomends.  Usually children do well and the steroids give them just enough push to get them off the vent.  Their lungs can then heal and grow and they can progress after that.  The down side is the use of steroids is linked to things like brain damage, slow growth, and cerebal palsy.  There would also be a risk of another bowel perferation.  Basically tonights Dr. will watch him overnight and consult with the oncomming Dr. in the morning.  They will then call us and together we will decide what we are going to do.  At this point Stacy and I are favoring the steroids and praying they will work very quickly so he will only be on them for an extremely short time.  This should greatly reduce the negative side effects.

On a positive note Greyson looked a lot better today.  His hands and arms were not puffy at all.  He still had a little puffyness in his face and legs but markedly less than he has had.  We are very thankful for that.  His weight was basically the same as yesterday which is also a very positive thing.

So pray for Greyson’s lungs and for us (the Dr’s, Stacy, and I) to make the right decision about what to do at this point.  It is not an easy decision but he has to be able to breath if he is ever going to be able to come home.  With the ventilator damaging the new lung growth something has to happen so that he can get ahead enough to get off the vent so he can heal.  Steroids look like the most promising solution at this point.

What do we say about today?  We got a call this morning from the hospital (rarely a completely positive thing).  Greyson’s nurse wanted to let us know of some changes that were made to his care plan.  Basically Greyson’s blood gas numbers had come back bad.  His CO2 was in the 70’s so they had changed his vent settings to try to get them back in line.  Well they ran another gas and his numbers were even worse (86).  His vent settings were now at the highest rate they could go and they also turned up the volume.

Also this morning Greyson’s nurse (who has had him for several days including last week) talked to the Dr. and expressed her (our) concerns that he was looking very puffy and his stomach continued to be full and extended even thoug it remained mostly soft.  Well the Dr. heard her and ordered his feeding to be stopped for one hour to allow him a break in digesting the continuous feeds.  He also reduced Greyson’s feed rate to 8.5 ml an hour from 9.5.  He did add more calories to the breastmilk so basically Greyson is getting the same calories, just in less volume. 

So Stacy and I decided to go to the hospital just to be there as we figured out what was going on.  His noon gas came back and his CO2 was 65 (not to bad of a gas).  He still looked a little puffy but overal was looking pretty good today.  We talked to the Dr. and the plan right now is to keep his feeding rate at this lower volume and put Greyson on a regiment of lasics (the diretic) in an attempt to “dry him out”.  We were very pleased with this as we have felt that this could be the problem since last week.  So we will wait and see how this changes things.  HIs weight didn’t change much, which is good (the Dr., Stacy, and I would all like to see him lose some weight since he has gained more than is reasonable).  He is weighing over 3 pounds but some of that is definately fluid weight.  Hopefully this will get him back to normal and he can progress again.

We were also so thankful that at the 4pm care time Greyson decided to wake up and look at us.  He really hasn’t been very alert for the last few days and it was great to see his eyes and have him interact with us.  While Stacy cleaned off his face she continued to touch his tongue and lips with the q-tip.  It was hilarious to watch him scrunch his eyes up like “hey, what in the world is this?”.   

Well that’s about it.  We will wait and see what his midnight blood gas is and from that they will determine if they will make any changes to the vent.  Hopefully he can at least get back down to a rate of 50 so that he will not be maxed out on the vent.