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....


Tuesday, June 23, 2009

Big days

Things have change a bit since I last was able to post. Almost all for the good. I will start with Wesley for simplicity sake. He had been weaning off of his CPAP apparatus (he does all the breathing, but it provides "back-up" pressure to keep his airways and lungs open) for 4 hours, twice a day. Yesterday (Monday) morning we called to find out that the doctors had decided that Wes could be off his CPAP indefinitely as long as he keeps up the good work. more than 36 hours later, he is rockin' and rollin'!! He is still very feisty, but is much easier to calm down, and if he gets real angry it is almost certainly a dirty diaper issue. His blood gases have actually looked better since he has been off the CPAP. His oxygen needs are up a bit to around 50%, but this is to be expected because the "flow" or volume of air delivered is quite a bit less than it is on the CPAP. He is putting on some good weight also, and tipped the scales at 5 pounds 10 ounces tonight!! I am attempting something new by uploading a video of Wes with the hiccups. This kid always has the hiccups...and they make his so mad, but Kate and I just melt. Hopefully this works:

video

Now for big brother Max. It is official...Max is off the jet ventilator and currently just on a conventional ventilator!! This is not so much a big step from a "lung development" perspective as it is a big step from a "Max's well being" perspective. This child hates the jet ventilator with all of his heart, soul, mind and strength. The story really starts on Monday morning when Dr. Gelfand was examining Max after a bad blood gas (CO2 was in the high 80s...ideal range for Max tops out at about 65). He just felt like there was something mechanically wrong with the whole ventilation system versus Max's lungs becoming less compliant. So he extubated Max (removed his breathing tube from his lungs) and found that it was full of "schmutz" to use his words. He then attempted to reintubate in Max's other nare (same thing as a nostril, they just change the words to be confusing), but it did not work. So he intubated Max orally, meaning his breathing tube goes down his mouth versus his nose. There is not a real benefit to using the nose versus the mouth or vice versa, but the rule of thumb is that noses are for breathing and mouths are for eating. Max is doing neither of those things in the traditional sense, so who cares. So the tube was put in his mouth and because they went with an oral tube, they were able to size the tube up a little to allow for better suctioning of the "schmutz" that his lungs make. Everything seemed hunky dory...until Max realized that instead of "fighting" against the jet, he could bite the breathing tube, effectively cutting off all ventilation, and actually turning the jet vent off. Yep. the jet vent would actually turn off. Stop. Completely. And the best part...when the jet vent TURNS OFF, it does not sound an alarm. Keep in mind this device is very much sustaining his life, and it does not even alarm when turned off. By the patient. A patient that is 12 1/2 weeks old and still 2 1/2 weeks from his original due date. On one hand I am proud of my child's resolve, on the other hand I am concerned about the idea that his ventilator will calmly shut off if he bites the breathing tube long enough. I suggested that they put some sort of collar around the tube that is a little more resistant to being gummed than the ET tube. Turns out the respiratory people were way ahead of me and found something that would work. Problem solved!! Kate and I realized that we had not seen Max's nose without it being covered in tape with a tube sticking out of it since maybe day 2 or 3, so it was good to see some more of his face...which is still very puffy. He weighed 6 pounds 4 ounces tonight...down 3 from the night before. We are looking for weight loss because that might indicate he is passing some of the fluid in his head. Back to the story at hand though. I called this morning to check up on the boys, and the nurse said, "oh, by the way, they took Max off the jet about an hour ago." This was not one of our regular nurses, because if it was, she would have known that we have been praying for months to have this jet vent gone. Kate got to the hospital this afternoon (thanks Sarah) and was able to hold him for almost 2 hours, and he did great. Max is till on a conventional ventilator (what you or I would be on if we could not breathe on our own), and his pressures are right on the cusp between conventional ventilation and needing a high frequency ventilator. The docs have indicated that they likely will not go back to the jet, but there is another high-frequency ventilator called an "oscillator" that they would use if necessary. This is a new piece of equipment for us, but what we do know is that there is no holding on the oscillator. There are two almost poles that come of the machine which make maneuvering for us to hold impossible. That is the worst news, so we are praying that today is the day that God had planned all along for Max to be done with high frequency ventilation. Just so that everyone is up to speed, high frequency is a more gentle approach than a conventional vent, which is why they use it in kids whose lungs are about 60% developed (i.e. born at 24 weeks). When they get bigger and hate the box 2 inches from their head pounding 360 times a minute, then it is a little less effective.

This is the new and improved and puffy Max. Can you guess which nostril the breathing tube was in? The nurses actually told us that insurance typically covers plastic surgery for kids who have been intubated through the nose as long as Max has been. That is very literally the furthest thing from our minds!! I just like to see his nose!!


I decided to take some scenery pictures to share with everyone what our little corner of the DeVos Children's Hospital NICU looks like. This picture shows the square footage dedicated to Maxwell and Wesley Wiersma, and where Kate and I and at least one nurse typically spend our time:


Our "area" is contaminated with love, so they have to put black and yellow tape around it. And Max and Wes both carry the Serratia virus, but that is not as big of a deal.

This is a picture of Wes' bed and "gear." On the right is all of his breathing related stuff. There is a humidifier (thingy at the bottom right with the digital readout) and hookups and adjustment for his nasal cannula and oxygen. The top left is the monitor that shows his heart rate, oxygen saturation and respiration (number of breaths and how "big" each breath is). Then there is the little sideways machine in the middle left of the picture that delivers his feedings over exactly an hour.

Here is what Max's bedside looks like. A little more involved from a hardware perspective. The biggest difference is the ventilation side of things. The machine on the far left is the dreaded jet vent, that currently sits there with a blank screen (THANK-YOU GOD!!!), then in the middle left is the Nitric Oxide machine, and then the conventional ventilator is next to his bed. The only other difference is that Max has one more "sideways" machine (I know they have a technical name...some sort of pump I think, any nurses out there know?) for the antibiotics he is getting for his infection.


I thought I would add some other pictures to show what an amazing group of nurses there are taking care of our boys. The first is a picture of the posters that Nurse Ashley puts together every month. They serve as great reminders of how far God has carried these two boys...and their parents:


This last picture is something that Nurse Pat made for us. It will forever grace the wall of whatever room Max and Wes call home:




12 comments:

  1. Beautiful news and beautiful boys! The hiccup video is ADORABLE!!! What an answer to prayer! Continuing to lift all of you up every day!!!

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  2. Reading the updates it seems like we are right there in the hospital room with you as you walk us through the boys' day. Praying for health and strength and peace and smiles on the Journey. Our Father is so very Big and He holds each you closely. In Him, Lil K.

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  3. Mark & Kate, awesome post. The amazing things that God has done in your lives in the last couple months are almost beyond words. The quote from "Sanctuary" brought a lump to my throat! We love all of you and are praying for you too!

    MBIKLG

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  4. "Shout with joy to God, all the earth! Sing the glory of his name; make his praise glorious! Say to God, 'How awesome are your deeds!' Come and see what God has done, how awesome his works in man's behalf!" From Psalm 66
    Praising God with you today, Mark and Kate! Thanks for the great post and pictures! It's so great to see how the boys are growing & developing! We'll continue to pray for healing for them and strength, patience, and peace for you guys! Love, the Sluiters

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  5. Mark and Kate-

    Praise the Lord! So glad to hear of the progress the boys are making. We are praying that the Jet vent will be wheeled away for good! The boys are handsome as always and Max, your nose is super cute :) Always praying.

    Tina Jacobsen

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  6. I just began reading your journey, and Am so thankful that you have came this far. I am so sorry that you have to go through all these things at once...and it is a tough burden to carry, but jsut remember that Jesus' burden was heavy and he said that he will carry ours. I have to remember this also.. Prayers and encouragement coming your way.. Hang in there. There are a team of believers out hear cheering for you!!

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  7. They are precious, and the hiccups? that video was adorable. Still praying for your little family and that God will continue to bless your boys with growth and strength.
    love
    karley and weston

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  8. when I saw the vidio and heard wes with the hiccups how precious! It just made me tear up with joy for how God is working in your families lives! He is so Good! The picutre of Max, he is so cute!The pictures are wonderful, thank you for sharing with us...gives us a glimps into your life.
    The love and care from the nurses and doctors are a testiomony also! So special how they make the pictures and encourage you the way they do...May God bless each one of them!
    Blesssings, Love, hugs and prayers too...Pam

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  9. What a blessing to see the video of the hiccups! So precious! Glad to see things are going good these last few days - I will pray for continued health and strength for your family!

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  10. The hiccup video is priceless. Your news today is MOST encouraging and just a tiny peek at what God's awesome power is!! Stay encouraged!

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  11. There is a saying - "Roots grow deeper when the wind is stronger." That is certainly true of the faith of both of you, Mark and Kate. You have testified of God's strength when you are weak, of of His powerful work in your lives and in the precious lives of Max & Wes, and you have found joy in the most difficult of circumstances. We continue to pray for and with you. Love always, Aunt Allie, Uncle Bob, Julie and Kim

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