Wiersma Family Blog

WIERSMA FAMILY BLOG
A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early.

Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....


Sunday, October 25, 2009

Changes

Overall, the week has been very good. I will start with Max, because that is where most of the good changes occurred. Max is off the INO!!! The docs made the decision to start weaning the Nitric Oxide last week, and it was as if the gas made no difference to Max. He never really had a hiccup as they lowered the dose every 12-hours until it was off, and since then he has been rock steady in the mid 30% range on his oxygen. As if that was not enough, the docs even decided to start trying Max on CPAP weans. Now that Max has the trach, this is an easy thing to accomplish, it is essentially making a few changes to the ventilator settings. Much like the INO weans, this has really been a transparent process thus far. He is currently on CPAP settings (meaning they give him a base pressure to assist in breathing, but that is it...he does all of the breathing and determines the "size" of the breaths he takes) for 6-hours twice a day, so he is pretty darn close to being on CPAP indefinitely. His gases have looked pretty good following these weans as well. Max is also down to "bolus" feedings, which is the term given for gravity feedings via a G-tube. These have been going well and Max handles them like a champ, the biggest concern now is that his blood sugar has been a bit unstable in the past when he has been on bolus feedings, so we hope he can overcome that this time around. Please pray with us that these trends all continue in the right direction for Max. He is still on a small dose of steroids, which could be helping his oxygen needs remain stable. Our hope is that this is a new baseline for Max and we can start thinking about getting ready for him to come home in the next couple of months.

I was able to hang out with Max for a long time yesterday and we had a lot of fun. I even caught a good smile on video!!

video

Wes has not really had a bad week, but we did end up having to go to drip feedings via a pump for 20-hours a day. This was due to his reflux/retching. The pump feeds don't bother me too much, because now I just have to do a breathing treatment at 4:30 A.M. and then I get to go back to bed!! As much as I enjoyed watching SportsCenter with Wes every morning, I was ready for a little break and some extra sleep. Kate is really bumming about it. She had no problem taking an hour to feed Wes every 3-hours and she really misses having that time with him. It turns out Wes is sleeping or unhappy at 5:00 in the morning, so that explains our varied feelings on the drip feedings. One thing that is not any fun is that the pump comes with a full on IV pole that provides us with about a 5-foot leash. So moving Wes around the house has become a BIG pain in the butt. I am not sure who the IV pole belongs to, but I hope they don't mind me doing a little customization to it to make it a little easier to move around. By far the biggest disappointment with the change to drip feedings is that there does no seem to be any less refluxing or retching. Kate, who I would describe as very sweet natured and non-confrontational, has turned into a little bit of a bulldog when talking with the various doctors who are weighing in on this whole reflux/retching business. After a number of conversations, she was finally able to get one of the docs to write for a prescription for Prevacid (we have been using Zantac) to see if it would help at all. Apparently insurance companies do not like Prevacid because it is significantly more expensive than Zantac and they say it does exactly the same thing. I would say that after two days, the jury is still out on whether Prevacid is the cure for the reflux, but it is quite apparent that it seems to be helping. Please pray with us that this combination of treatments can be the end of Wes' reflux.

We decided it was time for Wes to sit at the table for dinner when Grandpa B. came over on Friday. I think the high chair might be a little bit big for him...


Mom always like to steal pictures of Wes and I while we are trying to do manly things like watch football or the Food Network.


I have a different kind of prayer request tonight. Abi and Dave Lamar are friends of ours who are pregnant with twins. Abi is currently 23 weeks and 5 days pregnant and has been at Spectrum Hospital on bed rest for a week. Needless to say, they are very much on our hearts and minds as we know first hand the emotions they are dealing with. Please remember to pray for Abi, Dave and the "twinners" (they do not know the genders). For more information and to get updates, their blog address is:

http://lamartwinners.blogspot.com/



6 comments:

  1. I tried the twinners blogspot and was unable to access it, I must have done something wrong, I will continue to pray for you both and your boys and the new twinners also

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  2. We completely understand the Prevacid / Zantac battle! We needed three prescriptions before anything began to help Landon, and Prevacid was the only thing to touch his reflux. It didn't make everything perfect, but it certainly made a huge difference! Hopefully it does the same for Wes! We're praying for you all!

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  3. Thanks for the update!! What great progress for Max, that is awesome, praying that continues so he can join you all at home!! Praying for Wes and his reflux issues, we went thru that battle with Jasper as well. Zantac couldn't touch it, Prevacid was a life changer for Jasper!! Hope it works just as well for Wes! Did they tell you it takes a good two weeks on Prevacid before you see best results? Love the pics and video, as always, they are handsome little dudes!! Saying many prayers for your family and those adorable boys!! Also praying for your friends Abi and Dave and their twins!

    Tina Jacobsen

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  4. So good to see a good report again. Will keep up those prayers and add the twinners as well. Love the pics. Wes looks a little bewildered in the high chair! Love the smiles on the boys.
    Cindy

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  5. Love the new photos of the boys. What cute little guys! Praying for continued progress and health for you all. Sending love your way-
    -Keith and Laura

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  6. Praying for you guys and the twinners

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