Westfall Web

Greyson was quite the ham today, when he was awake anyway.  He slept the majority of the day but woke up a bit this morning and played with us for awhile.  Watching him wake up you would have thought you were watching an adult.  He would crack his eyes open and stretch his arms all around and wiggle around.  Then he would snap his eyes back closed and basically drift back to sleep for a couple seconds before doing it all over again.  When the Dr. did rounds he woke up again and had fun showing the Dr. how hard he could squeeze his finger.  It was funny because the Dr. talked to us about how we could hold him again after his first trach change, and how he wanted a turn too!

While there has been talk about it being done tomorrow, Greyson will probably have his first trach change on wednesday.  He is going to get a special trach called a philly flex eventually, but it will not arrive in time for this first trach change.  The philly flex is nice because it sticks out a bit further from Greyson’s chubby throat and has a built in swivel that helps keep the vent from pulling on the neck.  It will be a big day on that day because they are also going to try to switch Greyson to the home style ventilator.  This will be a little bit different, and some kids can’t tolerate it for awhile and have to work up to it.  We are praying all will go smoothly as he switches to this other ventilator, which will help us learn to use it for when he comes home.

Today was a great day largely because it was full of plans and preparations for bringing Greyson home.  We are still a little ways off from that day, but it sure is nice to talk about it!

I think Greyson must have got up to celebrate sunrise for easter, and consequentially tired himself out because he slept all day today.  He did wake up a little for Stacy and Jaemi to look at his little lamb (thanks Ashlie!).  Greyson also got a visit from the Easter bunny who left him a cool pail that says “chick magnet” on the side, a duck stuffed animal, and a blanket.  Not too bad!

While he slept all day Greyson continues to do well.  His blood gas numbers continue to be good and he is back down on his oxygen requirements to where he was before surgery, so that is good.  He is now back to full feeds and seems to be doing well with that (getting fed now through his new g-tube verses the old method of down the nose, through the stomach, and into the jejunum (intestines)).  While he stirred just enough to look at me when I came in tonight, he went right back to sleep and doesn’t seem to want to wake up for anything.  Guess we’ll have to wait till tomorrow for playtime.  By the way, have a I mentioned that as soon as he gets his first trach change (probably wednesday) we can pick him up again?  Boy are we looking forward to that!

Happy Easter everyone, we hope that you are all able to know and experience God’s amazing love for you.

So today Greyson again had periods of being awake and playful.  I got this great picture while I was playing (well sort of playing as I was trying to play without having him move around much).  I’m not sure there is much more to say.  How’s Greyson doing?  Look at the picture.  How are mom and dad doing?  Pretty good when you look at the picture. 

Greyson did have a bad episode today.  We are unsure what caused it but while Stacy was playing with him he suddenly turned purple and was very unhappy.  His g-tube bubbled and we think maybe it was just bad gas pain.  The good news is he didn’t de-sat while he was doing it, but his incision turned a weird purple.  We are not sure what that was all about but he is OK.

We got to further our medical training today.  Stacy unhooked Greyson from the ventilator and bagged him, while I suctioned him.  Then I bagged him before Stacy hooked him back up so I could learn to do it.  The RT said we did great. 

They started Greyson feeding again (through his new g-tube) so we are anxious to see how he tolerates it.  Hopefully he will do fine and it will help speed the healing process.  Greyson will have his first trach change wednesday and from that point on we should be on the fast track home!  **editors note:  Fast track is not always as “fast” as one would like, but we are definately getting close!

OK, in my opinion this could be one of the best pics of Greyson yet, how great does he look when he smiles?!!

Greyson had a good day today, and as you can see even woke up a few times and interacted with us.  How does he do that with all the meds that are supposed to make him sleepy?  Who knows, but it sure is fun when he is looking so good.  He seems to have his pain under control and looks pretty happy when he is awake. 

We would also like to report that his last blood gas was AWESOME!!  I know you don’t follow all the numbers we do, but let me break it down for you.  His PH was 7.40 (this number should be between 7.35 and 7.45, so pretty much perfect).  His c02 level (which I know we have got many of you into following) was 45!  (this number should ideally be below 50, so pretty much perfect!).  His bicarb number was 28 (this number should be in a certain range I forget, but it should be below 32, so pretty much perfect!!).  He still has some numbers that are out of range, but this is the best gas he has had in A VERY LONG time, so long it would have had to be before I was really following his exact gas numbers!  Praise God for his goodness!

One thing they always told us in the NICU from the very beginning was to always look at the baby more than the numbers, well as you can see the boy looked good as well!!  This has been a nice end to a pretty stressful week. 

Well it was a bit of a rough night and morning, but they seem to have finally gotten Greyson to feeling better.  He has awakened a couple of times and looked around, but does not seem to be in pain.  His heart rate is much better tonight and he spends most of the time resting peacefully. 

He received (or actually is receiving as of this moment) a blood transfusion as his hematacrit was low, so he has that going.  We had a great dinner with Jaemi (awesome enchiladas!) and Amanda (she saw us and stopped and ate her dinner with us).  Jaemi stayed a long time and kept Stacy company while I worked on homework.  Now we are just hanging out for awhile before we go back to the parent appartment.  It has been really good to see Greyson wake up just enough to let us know he is doing OK before going back to sleep and resting, which he definately needs so he can recover quickly.

We continued a bit with medical school last night and we learned how to suction Greyson.  This is a bit of a process since you have to keep everything sterile, and because he just had surgery!  It was a bit of a rough night as they are struggling to keep Greyson’s pain under control.  He is medicated but still “wakes” up a bit and makes a very unhappy face.  It is obvious he is feeling it.  He does well though, if they had done all that to me I would be doing a whole lot more than wiggling a bit and makeing a sad/mad face!   The current plan is to give him a new drug that will make him go into the deepest level of sleep.  We are hoping he can do this and sleep a couple days while his body works on healing.  He looks better than he did yesterday, it is just going to take some time. 

This morning we had breakfast with two friends from the NICU (we stayed in an apartment provided by the hospital for parents last night, Stacy is staying there all week).  Jaemi and Corinne were a great source of encouragment to us and we are so appreciative of their friendship and support.  On top of that Jaemi said she is going to bring us home made enchiladas tonight, YES!!! 

The doctor said the surgery went well.  The biggest suprise was that while they were in there they removed his appendix.  They did this because Greyson’s appendix did not lock in place like it should have as he was developing, and was “floating” freely in his abdomin.  While this isn’t a problem now, in the future if he ever had appendicitis Dr’s might have a very difficult time diagnosing it because the pain could be in the wrong area.  So to avoid problems in the future they just went ahead and took it out. 

During surgery Greyson had a couple little challenges.  His heart rate and blood pressure dropped pretty low and they had to give him some medicines to bring it up again.  This was caused by the pressure put on the liver by the retractors, but they were able to get him stabilized and performed the operation by manually holding the liver out of the way.  There was also a little bleeding from the liver.  The good news is that neither of these things should be a problem with his recovery, so he should recover from all the surgeries just fine.  Right now the only evidence that something is slightly off is that his heart rate is still a bit high.  Otherwise his vent settings look the same and he is resting.

All in all the hardest thing has been seeing the incision on his stomach.  It is horizontal across his belly and quite a bit larger than we were expecting.  Over time it should lighten up a lot and look much better, but as parents it was not easy to see such a big incision on such a perfect little belly. 

Greyson continues to be a tremendous source of joy for us.  God has done amazing things in his life and continues to amaze us by showing his love and provisions for us.   We cannot thank you all enough for the love, prayers, and support we have received.