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....


Monday, June 15, 2009

Arrrrggggghhhh

80 days of this? I am not sure if that went fast or slow. Depends when you ask me. Maxwell continues to befuddle the masses. He showed some good improvement yesterday and had some very good blood gases that led to the jet vent being turned down from 41 to 39. That was great news...finally some changes in the right direction. Then today came. After a number of bad gases and changes to his vent pressures, Max is currently at a pressure of 43. That is as high as he has been in at least 4-weeks if my memory serves me correctly, and some times it does not. Dr. Gelfand, a doctor who has been following the boys since day one, said he is not terribly concerned with the "small changes." He said bad gases can be very mechanical and not indicative of actual regression, meaning when they draw Max's blood can have a big impact on the results. If he is steaming mad and clamping down on his ET tube...his gas likely will not look too good. The problem is that he knows when it is time to prick his foot, and he does not like his foot pricked, so he retaliates. Dr. Gelfand did say the trend as of late is mostly up, however. He ordered a culture be done on the junk they are sucking out of Max's ET tube. He does not think Max is sick, but wants to test the junk to see if there is any food residue in his lungs. Essentially, he is wondering if Max is refluxing and breathing the milk into his lungs. This would not be a good thing, because the remedy if he is having some reflux is to push his feeding tube further into his GI tract, actually through his stomach and into the intestines. This comes with a lot of risks and likelihood of surgery and re-training Max how to eat using his stomach in the future, so that does not sound like the alternative we are praying for. Dr. Gelfand said that Maxwell is a mystery to all nine doctors in the neonatal practice. His blood work does not show any signs that he is fighting an infection, he does not physically appear to be sick, he is more alert, opens his eyes a lot more...they just are not sure why his lungs do not seem to comply with the vent. It feels like the bases are loaded for God to step in and hit a grand slam that medicine cannot explain. That sound good to you God? My patience is worn thin. My energy level is down. Kate and I have decided to sell our home following the loss of Kate's job, and the stress of what needs to happen along those lines seems like too much. Will You begin right where I end?

Wesley had a normal day for Wesley. We had a new nurse today named Erin. She was across the nursery and Wes began to desat (his oxygen level dropped), which happens regularly. Both boys do this a lot, but almost always bring their saturation back up on their own. After a minute or so his saturation did not come back up, so another nurse poked her head in to see how he was doing. She said to Erin, "Where is his CPAP?" She replied, "It is on his face, where else could it be?" It was not on his face. In a fit of anger against this thing that sticks up his nose all the live long day, he got a hold of it, pulled it completely free from his face and the tubes, and threw it down to the foot of his bed. The nurses could not believe it. The kid is negative 4 weeks old and I am scared about what he will accomplish tomorrow. This child is going to be his Mother's undoing and a source of great pride for his Father.

I forgot to mention that the boys had eye exams last week Tuesday, and the doc said their eyes are still immature. That is a good thing, we found out. They are at the gestational age where if there was a problem emerging, they would likely be able to "see" something by now (no pun intended). They are a long way from "out of the woods," but thus far there is no evidence of the ROP disease that can lead to retina detachment and possible blindness.

By the way, does anyone know when these stupid white fuzzy things go away? I have been averaging 4 Claritin D 24-hour pills a day and still cannot get a decent night of sleep!!

Also, Max has a head ultrasound tomorrow to see if any of the fluid build up in his head is also building up under his skull. He had one about a weeks ago that showed minimal, benign fluid inside the skull, so we are praying for either no change or improvement there.

8 comments:

  1. The cotton wood fuzzies are what you speak of. Soon they will be gone, but I'm right there with you! Still praying for those darling munchkins and you and Kate.
    Peace and Love,
    Heather

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  2. Bill and Rachel DeYoungJune 15, 2009 at 11:20 PM

    Mark you should seriously consider writing a book, i love reading your posts, well mainly to see how things are going,but your humor cracks me up! We are still praying for your little guys and strength for you both to get through each day!
    bill and rachel

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  3. Let me just say it, "Prematurity SUCKS!" And so does that dang NICU rollercoaster ride! I am so praying for an out of the park walk off grand slam for both Max and Wes! We love Dr. Gelfand (he and Dr. Langen saved my little mans life) he has such a big heart, I'm glad your boys have had him around since day one :) Praying for complete healing for Max and Wes and praying for you and Kate for strength and courage to face another NICU day. Hit some Home Runs NICU boys!!

    Tina Jacobsen

    The Lord Bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace. Numbers 6:24-26

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  4. Thanks for the update Mark and Kate! We continue to pray for all four of you.

    MBIKLG

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  5. It does sound like the timing is perfect for God to step in and do a grand slam... when there are no other answers... God, please step in and work a miracle in Max's lungs! We trust Him for complete healing for the boys and for strength, patience, and trust with all that you guys are going through! With love, the Sluiters

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  6. Wow, reminded again of how much you guys have on your plate! Very heavy stuff. We will keep praying.... one of the only things to lighten the load. Hang in there, you can do it...His mercies are new every morning...great is His faithfulness...He loves you, and He loves your boys..even more than you do! :)
    Ron and Karen Boersema

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  7. Try Zyrtec instead of Claritin...much more effective! Our family is praying for you and those precious little boys.

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  8. i saw a holistic health counselor for 6 months b/c of super bad sinus problems and bad seasonal allergies. here's what works for me for whatever it's worth!

    first, i stay away from dairy, that makes all your mucus glands in your body produce more mucus making allergies worse. second, i use something called "sinucleanse." you can buy it at walgreens. i was seriously skeptical, and it's a bit odd to use, but it works wonders. i used to take claratin round the clock and now i go through one box per summer. maybe that will work for you!

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