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....


Wednesday, November 18, 2009

Keep on Keeping on

Wow...8 days have passed since I last updated the blog. Where does time go? By in large it has been a pretty good couple of days for the boys. Max is doing quite well, and his oxygen needs have been in the mid 30% range. If he can continue to hold this level, we can once again talk about ordering his home vent and start looking forward to the day we can take him home. We have started to do all of the trach care training. It has been going well, and Kate and I have been doing as much of the trach care as we can ever since Max had his surgery. The part of trach training that is not so much fun is all of the talk about worst case scenarios. It is easy to forget how important that man made hole in his neck is to his very survival, and taking care of it and knowing what to do in worst case scenario situations is very important. I guess it was just a reminder of how much longer this journey is going to be. Obviously no parent ever wants their child to need a trach, but if we had to pick between the boys, it would be Max. He does such a good job of letting us do all the care stuff (this includes: cleaning the "stoma" site (the hole in his neck) with a sterile q-tip and soap, then a sterile q-tip and soap, then a sterile q-tip and sterile water, then a sterile q-tip and sterile water, then drying the site with sterile gauze, then placing a sterile sponge under the trach so it doesn't irritate Max's neck so much, then changing the ties that go around his neck to hold the trach in place. This has to be done twice a day), he will even smile at us from time to time. Most kids need to be restrained during this procedure. Max is just such a level headed baby...who is bordering on being a toddler. The docs put him on a diet earlier this week to try and slow down his weight gain...he continues to pack on the ounces regardless. He tipped the scales last night at 16 pounds 10 ounces. We have recently lost 2 of our day nurses that have been taking care of Max for almost 8-months to maternity leave because they decided to have babies of their own...and they didn't even ask us if that was okay. We had been hunting around for a couple of nurses to take care of Max during the day (Ashley and Sara have the night shift covered!!) because it is very important at this stage to have so familiarity in Max's life. Our most recent addition is nurse Megan, and she has been a real answer to prayer because it is very obviously that Max likes her a lot. Maybe a little too much if you ask Max's mom. For those of you keeping score at home, Max's most recent blood gas was 7.40 and 43...which is literally an ideal blood gas, but because of his volatile oxygen requirements, none of the docs are willing to rock the boat with vent changes at this point. The current vent settings are 25 over 12.

We were able to have a little family time at the hospital recently with the trach training classes. Here is a picture of Max being SO serious. I tried to match his seriousness but had a difficult time:


Max is on a high dose of Viagra as well...for blood pressure reasons. One of the side effects is sweating, so it is not uncommon for us to get to the hospital to find him hanging out in his crib in just his diaper. A far cry from the 90+ degree, 80% humidity incubators they were in for so many months!! Max also really likes holding on to his G-tube, and I think it looks hilarious. Note the 17 fat roles on just his arm!!


I will use the above picture to identify all of the pieces and parts that make up the "total package" that is Maxwell James Wiersma. The button he is holding in his left hand is the port that goes directly into his stomach for feeding. The rest of the stuff is part of the ventilator setup: the two tubes along side his head are the air and humidity delivered by the ventilator and the other tube is to help in exhaling, the sensor that is covered by Max's right hand is called a "flow sensor" and that detects when Max is taking a breath and that triggers the vent to do its thing, then the multi-colored tube thing that is wrapped in plastic is called a "ballard" and that is how we suction Max out. The trach tube occupies his entire airway, so the natural mucousy stuff that you and I cough up or swallow stays in Max's lungs until we suck it out. The other stuff is just leads for heart rate and respiration monitoring.

No real changes to report with Wes: still crazy, still retching. We are going to try a chiropractor for a couple of weeks and see if that makes any difference for his comfort level before trying the more invasive options to cure the reflux issue. Please join us in praying that this will be the path way towards resolution of this obnoxious, heart breaking issue. Wes has not been gaining weight at nearly as fast a pace as his BIG brother. He weighed 13 pounds 8 ounces earlier this week, which is the same as his weight from two weeks ago. Needless to say, I think it is time to crank the feedings up again, we just don't want to cause him any undue stress.

Wes has also developed a new hair due that looks a lot like a mohawk, or a fauxhawk for the purists. Straight out of the bath his hairs sticks up. Now if it would just curl...


Wes has also developed this desire to lick the side of my face when I am giving him "zerberts" in the bath tub. It is a little odd and Kate finds it really hilarious, so I have added a video of it below:

video

On a somber note, Kate's Grandma Blauwkamp passed away on Monday. She was 94-years old and lived a very full, very happy life. I will never forget way back when I first started dating Kate, I was often doing service calls to the Royal Park condominium complex where Grandma and Grandpa lived. Without fail, I would get a root beer float with Butter Pecan ice-cream every time I stopped by to say "hi." Kate and I later lived in their condo for nearly 4 years after we got married, and it was a fantastic place to begin our lives together. There was a 30+ year age gap between us and all of the neighbors (it is a retirement community where you have to be 55 or older to own on of the condos), but after 3 and a half years, we ended up making some good friends. Kate was sitting with Wes on her lap when she got the call that Grandma B. was in Heaven. After a couple minutes of processing, she looked at Wes and said, "Grandma Great is in Heaven with Grandpa Great" (Grandpa B. passed away 5 1/2 years ago)...Wes grinned from ear to ear. Then Kate said "Grandma Great gets to sing with your Grandma now too." Wes smiled again.

7 comments:

  1. Dear Mark & Kate, Glad to hear the positive progress for Max. Will pray that will continue. Will also pray that there will be improvement for Wes. The "zerbert" video is too cute. I also continue to pray for the two of you, for the energy and encouragement that you need! Take Care Larry

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  2. Kate, sorry to hear about your Grandma.

    That video is sooo funny. Good news about Max, it hope that he can keep it up.

    We will be praying for comfort from the reflux for Wes.

    Love & miss you all,
    Stacy, Geoff, Cassidy, Evan & Sadie

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  3. Oh my you guys, keep it coming!! I love the video!

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  4. Awesome news about Max, we will continue to pray for him and Wes and hope that you can have your family together again at long last! Abi and I are just starting to understand what you guys have been through and will continue to pray for you and Kate to have patience. Thank you for being such good witnesses for GOD through all of this, seeing your faith has helped us greatly.

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  5. Your boys are beautiful. We will continue to keep you all in our thoughts and prayers.

    Marie and Chad

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  6. A study states that chiropractic treatment can be an option for parents who have a colic baby. It may soothe baby's discomfort as long as it is done correctly to avoid harm to the baby.

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  7. I’ve tried all sorts of coughing syrups, believe me, but none of them helps. Even though Nin Jiom Pei Pa Koa www.geocities.jp/ninjiom_hong_kong/index_e.htm does not eliminates the cough I like to stick to this chinese syrup I’ve been taking since I was a kid: Nin Jiom Pei Pa Koa. My grandfather is chinese, so I guess my mom got the advice from him. I was really surprised when I found that chinese market selling it here in Belgium. It does have a refreshing, soothing, sweetening effect…as long as it lasts…then back to coughing mode.

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