Where to start...again

Man, I am getting bad at updating the blog...sorry about that. It has been a mixed week. I will start with Wes. He has been home for a week now an things are really going well. It has been a lot of fun for Kate and I to "be parents" in the more traditional sense, meaning we get to do everything. Wes has a fairly busy schedule, I think, but he is the only baby I have ever had to take care of 24/7, so I am not sure. Probably the biggest difference between Wes and other, non-micro preemie babies are the breathing treatments. Every 6 hours he gets 2 nebulizer treatments and gets a third treatment twice a day. We also do what is called "Chest Physical Therapy' or CPT (we just call it tapping) where we use this little inverted rubber cup to "tap" his chest. The idea is that the cup traps air and as we tap, there is a percussion type action to loosen any extra fluid in his lungs so he can cough it up. We do the treatments at 11:00 and 5:00 (morning and night), and so far, Kate basically gets stuck doing the 11:00 A.M, 5:00 P.M. and 11:00 P.M. treatments, and I do the 5:00 A.M treatment. She is fine with this setup as long as she doesn't have to get up for an hour at 5:00 in the morning. Needless to say, it has been a bit of an adjustment for me!! So I have been trying to get to bed right around 10:30 or so, up at 4:30, then work, get home around 5:00, and then one of us goes up to see Max for the night and the other takes care of Wes. Notice there is not a lot of "sit down and update the blog" time in there!!

Wes does seem to be getting a little infection of sorts around his G-tube site. It has been pretty red, but that is to be expected considering he just had a hole punched through his abdominal wall into his stomach a week and a half ago. We noticed it was a little white around the actual opening, but the surgeon who performed the surgery is not too concerned. We have been putting Neosporin on the site for the last couple of days and it seems to be helping quite a bit.

Max has not had such a good week. His oxygen needs have been climbing dramatically and as of this afternoon, he was at 95%. The docs have run the gamut with Max trying to figure out what is going on; his blood gases have actually improved over the last number of days (last night was 7.43 and 43), his demeanor has been great (lots of smiles), and his blood work all looks very good. They did do a culture of the junk they suck out of his lungs (he cannot cough or clear his through as you and I would because of the trach tube), and that grew two different bacteria, both of which he has had before. They have him on antibiotics to kill those off again, and luckily the bacteria are not very resistant to the medication. The infection could be contributing to his increased oxygen needs, but I don't think anyone feels that is the main issue. The neo docs had a lung doctor come and examine Max on Friday. She suggested that Max be given a follow-up heart echo and that they start a steroid treatment. So he got a heart echo done on Friday afternoon which showed no discernible change in his pulmonary hypertension, and the doctor that dictated the report estimated that Max's pulmonary pressure was about 58%, compared to 66% that the last doctor suggested. That is obviously a change in the right direction, but these are just pictures and not exact measurements. The fact remains, pulmonary pressure higher than 50% is a very serious issue. Please pray with us that the plethora of treatments Max is enduring as I write this are exactly what God will use to heal our son. God has asked so much of our baby boy and he still has such a sweet attitude and approach on life. His nurse just tonight said that Max is without a doubt the first child in the history of her nursing career to give her a smile following "trach care." By definition, kids are supposed to loathe trach care (every night the trach site needs to be cleaned with soap and sterile water, a new sponge has to be put in place and the ties the hold the trach in place need to be changed) but Max seems to understand that it is important and waits patiently until it is finished. We just really want him to feel better. I am sure most of you have heard of the Mark Schultz song "He's My Son" (you can find the lyrics here: http://www.christianlyricsonline.com/artists/mark-schultz/hes-my-son.html).

I have always liked how powerful this song is, but I cannot say that I ever wanted to be able to sing it from the author's perspective. But here I am. My 6-month old son is on life support with two man-made holes in his body to help him eat and breathe. So can you hear me God? Are any of my prayers getting through to You? What more can you possibly ask of my little boy? I believe that You are mighty to save, that You alone have the power to drastically change my son's circumstances. You have done so before, and we need You now more than ever Lord. You see he's not just anyone. He is Maxwell James Wiersma. He's my son.

Since it has been so long, I will include a handful of pictures for your viewing pleasure.