Westfall Web

Well after getting a chest x-ray and running some labs it was determined that the good news is Greyson’s lungs look good.  The bad news was he seems to have an infection of some sort.  The really bad news is Mary Bridge PICU is full and can’t take him as a patient.  So he was loaded up late last night and taken to children’s hospital in Seattle.  They ran some more blood tests (his electrolytes were better by this time), did a trach aspirate (where they check his trach secrections for infection) gave his head a CT scan, and ended it with a lumbar puncture.

So what started all this?  Well I came home from work yesterday and went to change Greyson’s diaper and realized there was blood in his urine.  He also had a lot of edema in his groin and his soft spot (or fontanel) was bulging a bit.  When I showed Stacy she said she had noticed everything but the blood earlier in the day, but now it was much worse.  So we called the pediatrician who told us to go to Tacoma to the Mary Bridge ER. 

So after being up all night I just made it home in order to grab some supplies since we had no idea we were going to be readmitted to the hospital when we left yesterday.  We had hoped they would simply make some adjustments to his meds and we would be back home in a flash.  Unfortunately that was not to be the case.  So Greyson will get to check out yet another hospital for a couple days (lord willing no longer than a couple days!) and we get yet another chapter in the saga that is the Westfall’s.  Don’t forget that God is good and He is still giving us his comfort, strength, and encouragment as we walk through this new chapter.  I’ll try to update as soon as I know something.  Thanks for praying for us!

well tonight we had to make a run back to Tacoma so we are sitting in the ER waiting for the lab results. Greyson probably has a urinary infection but the labs will tell us for sure. We’ll keep you updated when we get home.

Well today was a pretty eventful day for Greyson.  We left the house around 9:20 (only about 5 minutes past when we planned on getting out of here!) and headed for Tacoma.  We had an appointment to see the GI nurses (that’s gasterointestinal, not military in case you were confused) at 10:30am and then see the pulmonologist people at 11:00am.  At 10:45 we asked the receptionist if we were going to have enough time to have Greyson’s g-tube granuloma treated (he still has a little left after his last treatment) before our 11 oclock appointment.  She told us to go to the other Dr’s and come back when we were done to have his g-tube treated.  So we went to the pulmonologist and saw a bunch of people.  His nurse, his RT, the social worker (to make sure we are still socially acceptable, somehow we passed ha!) and his nutritionist.  Basically the nutritionist upped his feeds a little and the pulmonolgist upped some of Greyson’s vent settings. 

Now from a hospital setting that would be bad.  In the hospital the goal is always to turn the vent down so the patient is doing more of the work themselves.  With Greyson however the pulmonologist felt that we should turn it up some so he was getting more help, which would take a more of the work of breathing off of him.  This way his lungs can rest more and he can devote more energy to simply growing (which includes growing lung tissue, which is obviously very important).  He was pleased with Greyson’s progress although clearly his c02 levels (which were measured by an end tital monitor, not a blood gas so they were not super accurate) were still higher than he/we would like.  So now he should have it a bit easier and we will see the pulmonologist again in a month.  He did say that by summer we might be at a point where we could start taking him off the vent for periods of time, working to get to the point where he can be off the vent all day and only on it at night.  He also treated some granuloma tissue that Greyson had growing out of his neck stoma.

When he was done they had the GI nurse come down from upstairs to the office we were in and treat his g-tube, and they had the lab lady come and draw his blood there too so we didn’t have to go anywhere. 

Today was a good, but long day.  We were on our own for Friday and Saturday night, which left us feeling pretty tired even though we had help during the day.  Today our NICU friends Jaemi and Ashlie came over to hang out with us and took us to lunch (we left Greyson with his nurse, our first official outing!).  They have become really dear friends and we are so thankful that they have continued to be a part of our lives. 

When we arrived home from lunch Greyson’s nurse had linked a bunch of his toys above his swing and he was swinging and having a great time taking it all in.  He was making some great smiles but of course as soon as the cameras came out he gave the famous, “no paparazzi please” look and the smiles went away.  Tomorrow is a significant day as we are going to see the pulmonologist.  Hopefully they will give us a good idea of where Greyson is at, and what the process will be to begin taking the steps to wean him off the ventilator.  Of course being our first visit with him we are not sure exactly what to expect, but they warned us it could be up to a four hour visit.  We’ll see how it goes.

Well we made it through last night OK without any nursing support.  Stacy once again had the worst of it.  Not only did she take over at 1am and let me sleep till 8 but she also had to deal with a major diaper blowout, an urgent burping need (while we call it burping it is really venting as he can’t really burp now that he has his fondoplication.  So we just put a venting tube into his g-tube to let the air out) , and a milk spill all at the same time. 

We had nursing today and will have it again tomorrow so it will be better than last weekend, even though we will be on our own every night till Monday.  Greyson continues to do well and has been off his narcotics for a few days now (I keep forgetting to mention that).  This is good because now we are past the point where that is playing a factor in how is acting.  It is also good because that is two meds that mom and dad no longer have to worry about giving him! 

We bought him this chair tonight as well as a floor gym so he has some new things to play with.  Little does he know that the chair is actually good therapy for him as it gives him time practice holding his head up.  He can do it pretty well for over 5 minutes before his head starts getting pretty wabbly.  He is definately getting stronger every day.

Today Greyson had his first date.  He was a pretty happy camper this morning and I was able to get some good pics of him (the first picture, even before he knew about the date!) before going off to work.  Then at lunch the Bazzell family came by and brought us lunch.  This could be the lunch that they owed us for the lost bet.  See Jillian (the girl in the pic with Greyson) was born just a couple weeks ago.  She was 4 weeks early and had to stay in the hospital for about a week.  Her dad and I were placing bets as to who would come home first.  If you read all the comments you might remember Jillian taunting Greyson the day before he came home.  Well Greyson beat her home by about an hour or so, so we won the bet!

Greyson seemed to like Jillian OK but did notice that she hits the bottle pretty hard.  Being a non drinker himself he was a little concerned.  He was also pretty alarmed that when she was here he didn’t command ALL the attention.  Pretty hard for the king to get used to.  At one point Jillian started crying because she was hungry, this led to a very concerned look on Greyson’s face before he was crying too.  It was a nice change of pace and we had a lot of fun trying to put the kids together.  Not sure they enjoyed it quite as much as their parents, but that’s OK cause it’s all about us having some fun at this point. 

Well today was another big day for us.  Being May 1 it was time to do a trach change.  This means we had to pull out the trach in Greyson’s throat and insert a new one.  Since Stacy put the new one in last time, it was my turn today.  We got all the safety things organized and were getting ready.  I was still working on gathering the courage to do it when all of a sudden Stacy started counting and pulled out the old trach.  Now I was staring down at his stoma thinking “but I’m not ready!!!”.  I slid the new one in and it really wasn’t that big of a deal, it was just the thought of it all that was difficult to get past.

Tonights picture shows how we can transport Greyson from the living room to his room.  I finally figured out how to arrange everything so that I could move him to a different room by myself.  Of course it takes at least two other trips to move all the power cords and the suction machine, but at least he can be moved by just one person!

This is a picture from just a few minutes ago.  He was pretty tired and fell right to sleep after we put him in his crib.  We are working hard to get his bath, trach care, and clothing change done earlier so we can get him in bed around 9.  After a VERY long time we are trying to establish a bit of a routine for him.  It was nice because today he took an afternoon nap but didn’t sleep too long.  This made it possible for me to play with him when I got home from work.

Stacy showed her excellent Doctoring tonight by realizing that we could put a little more water in his cuff (the balloon in his trach) in order to help him take deeper breaths and make the vent stop alarming.  Way to go Stacy!  She really is amazing and the Westfall boys are sure lucky to have her around!