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....


Thursday, October 29, 2009

Prayers for the Lamars

Tonight I am asking for prayers for the Lamars. Abi is 24 weeks 2 day pregnant with twins. Last night she was moved to the labor and delivery floor at Spectrum Health. We were all praying that is would be a short trip downstairs but that does not seem to be the case. Today thing seemed to have progressed. She was 1 cm dilated yesterday, to 4-5 today(last I heard). Her cervix has also started to thin. They have also put her back on mag as well as a number of other drugs to stop any contractions and irritability.
Please pray that the doctors can stop her contractions, thinning, and dilation. Also, pray for Abi and Dave as they go through this process. Please join us, their brothers and sisters in Christ, as we surround them with prayers.

If you want to check out their blog it is: http://lamartwinners.blogspot.com/

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/



Sunday, October 18, 2009

A good week

We have officially broken the 200-day mark!! By in large, it has been a good week. I will start things off with Wes. He continues to do well at home (3-weeks and 1-day now). We had our first pulmonology (the first of MANY) on Monday. The doctor was happy with how Wes was progressing and thought he "sounded" very good, meaning she listed to his breathing via a stethoscope. Perhaps the best part about the doctor visit was that we were able to get a new nebulizer medication that takes about half the time to administer as the one we had before. It is just a more concentrated dose, but it means that I get to sleep until 4:45 as opposed to 4:30!!! Those are some of the most special minutes of my day. Really, the best part about the appointment was that we were able to go and see Max as a family. That happens very rarely...in fact this is only the second time the 4 of us have been together since September 1 when Wes was first discharged.


We have still been having some issues with Wes having some retching episodes following his feedings. We have been trying to feed him over about an hour instead of 15 or so minutes, but that really cuts into the rest of the day, particularly when he gets fed every 3-hours. Obviously we will do whatever is best for him, but we do covet your prayers that he will start to handle his feedings better for his own comfort. We are going to touch base with the surgeon tomorrow and we will have a better idea of what we need to do then. One likely solution is a feeding pump that will feed him his regular amount over 3-hours, so it is essentially a drip feed.

Here is a picture of Wes in his newest hat, compliments of Nurse Emily who recently went to Disneyland. It even has "Wes" embroidered on the back!! (sorry I cannot figure out how to rotate the pictures that I upload, I even consider myself pretty savvy when it comes to these things)


And here is another of Wes checking out his Occupational Therapist Erin.


Max has had a good week overall. Some ups and downs, but he is doing well as of now. His oxygen needs have been hanging in the high 3o% to low 40% range. Because of that, the docs started to wean the INO (Nitric Oxide) and as of now, he is at 4 parts per million compared to 20 ppm at this time last week. As long as he continues to maintain, they are weaning him by 1 ppm every 12-hours, so maybe by Tuesday we will be rid of the INO machine...again...for the fourth time. This is a huge step, because if he can successfully get off the INO, and he continues to do well and maintain oxygen levels below 40%, then we can start talking about Max coming home. I think. So our prayers are that God will continue to heal Max's lungs so that his vent pressures can come down and his oxygen requirements decline. And that Max can come home and be with the rest of us. It is hard as parents to have Wes home and then to spend only 2-3 hours a day with Max. We want to spend all of our time with both of them.

Nurse Emily not only bought Mickey hats for the boys, but she is also and amateur Ansel Adams!! (she took the following picture)


And of course I have to get a picture with Max in his Mickey hat. I took this one, so the artistic touch is nonexistent.


I have also been forgetting to say a few thank-yous over the last few posts. A group of angels got together and hired a cleaning service to some in and clean our house from top to bottom the day before Wes came home 3 weeks ago. The place was spotless. I only know who the "angels" spokesperson was, so if the rest of you read the blog, THANK-YOU. This freed me up to spend the whole weekend with Wes instead of cleaning the house. Also, a big thank-you to all of the food angels. We thought we would finally have time to start making meals for ourselves like a "normal" family. NOPE!! So a big THANK-YOU to you as well. And a huge THANK-YOU to all of the people who continue to lift up our precious little boys in prayer. This has been a long road, much longer and WAY more mountainous that I could have ever imagined on March 27 when the boys were born. But we have not had to go it alone. We have felt the prayer support like a blanket around us in our darkest hours and longest days. We could never have made it this far without you.


Sunday, October 11, 2009

What a mighty God we serve

I cannot even describe how different I feel emotionally writing this post versus the post from last week Sunday. Once again, after all of the setbacks, the trials, the yelling at God to hear our prayers, the screaming at Him to act on those prayers, He has carried us through depths of the valley. Needless to say, Max is doing much better. There have been so many treatments used in the last few weeks it is hard to say what helped. First it was antibiotics (which he is finally done with, so hopefully his stools can firm up a bit!!), then a course of steroids, changes to his oxygen saturation limit, and on and on. I kind of like it when there are so many treatments in motion and not one identifiable solution...because it is easier to give God the glory. So when we last left off, Max was in 100% oxygen. As of this afternoon, he was in 33%. On top of that, his blood gases have been improving each day and they turned his vent settings down this afternoon to 26 over 11 (from 28 over 11). Those settings are not real low, but a change in the right direction is a change in the right direction. He is not out of the woods or even on his way to coming home yet, but it seems like this recent crisis has been averted. Out prayer is that is current oxygen level will be the start of a new baseline and that all of the treatments, particularly God's healing hand, will get Max to a point where home doesn't seem so far away. Kate, Wes and I would really love to have Max home for Christmas so we can celebrate the greatest gift with our amazing gifts. But for the time being, we are happy Max is feeling better!! Praise God.

Here is one of my all time favorite pictures of Max. It was taken two nights ago when Nurse Ashley (one of our night nurses who has been taking care of Max for more than 6-months now) came on shift and was saying "hello."


Wes continues to do well at home. Two weeks without a hospital stay...way to go buddy!!! He has had a LOT of appointments, most of which have been at our house. The in-home nurse cam twice, occupational therapy came twice (they work mostly with improving motor skills and making sure he has good range of motion, etc.), the speech therapist came once (they work on bottle feeding) and he had a follow up appointment with the doctor who did his Nissin G-tube surgery. By in large he is doing well. We do a lot of exercises with him to strengthen his neck and make him aware of his feet, toys, face, etc., and that has been going pretty well. The follow up with the G-tube doc was okay. He thought Wes' site looked pretty good (it doesn't look very good to Kate and I...it has been red and oozy, but he is the doctor), but he was concerned that Wes has been retching a bit following his feedings. Since his G-tube procedure, he has been having some nasty sounding episodes where he gags and sounds like he is going to vomit. He cannot vomit because of the surgery, but there is obviously something awry. We have been keeping close tabs on him and have even backed down on how much we are feeding him, because if this does not resolve itself, we are moving to drip feedings. That is not the end of the world, just a move in the wrong direction and yet another piece of equipment we would need to haul around. Please pray with us that he is just having a little spell right now and soon will be feeling great and handling his feedings like a champ.

Here is a short video of Wes playing around while on his Boppy pillow. He really likes sucking on his hands, which I am told is a good thing.


video

Sunday, October 4, 2009

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.





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