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....


Saturday, December 19, 2009

And we're back

Hi everyone! It has been a LONG time since the last post, and I apologize for that. This whole "living in two places" thing is getting really old. Every time I wanted to sit down and write a post, something came up, or it was too late in the day, or there was an issue with the computer...but I am back.

The last couple of weeks have been challenging. To answer the question most people will likely have: Max will not be coming home before Christmas. He was doing really, really well right up to the vent discharge meeting, and a number of changes were made to his medications, dosages and frequency right around that same time period. This combination of changes did not sit well with Max and his oxygen needs increased to the 45-50% range for a long enough period of time that it "reset the clock" so to speak on him going home. I am happy to report that after a little recovery period, Max is doing well and seems to be back to himself. His oxygen requirements are back in the high 20% to low 30% range, and he is on a manageable breathing treatment schedule (4 times a day instead of 6). Even though Max is no longer scheduled to come home next week, we had this past Thursday night planned for what they call "rooming in." This is when Kate and I (and Wes) spend a 12-hour period (overnight) with Max in a room adjacent to the NICU, and we are responsible for all of his care. This was kind of scary and really exciting at the same time. We got there around 5:30 and got settled in (the room was about 10x14 if I had to guess). The room has a couch that folds down into half a bed, so we took along the Aero Bed (thanks AGAIN Tony and Cara), and we also had the Pack-n-Play for Wes, and they had to fit Max's crib and all of his hardware in there too. Needless to say, it was pretty tight. By in large, the night went well. We did have one event at about 11:00 where we had to change out his trach because he was desatting a bit. This is not an easy procedure, but it needs to become second nature for us, so the practice was good. The problem is that it was just practice and wasn't necessary. The reason he started to desat (meaning his oxygen saturation fell outside of the desired range) was because of a nebulizer that we had plugged into the "ventilation circuit" for a breathing treatment that was not properly assembled. It took us a little bit of time to deduce down to the nebulizer being the problem, but it was a very good exercise to go through in the hospital vs. our first night home. "That is why we have people room in" was a common phrase the next day. Nurse Ashley was actually in the room when all of this happened, but she did her job and stayed out of the way and offered what I will call "limited" hints. I ended up getting some good sleep, but I had been up since 4:30 in the morning and had worked 11-hours before driving straight to the hospital...so sleep came a little easier for me than Kate, not that she didn't have a stressful day getting everything together that we would need to have Wes out of the house overnight. Max sets off a few more alarms than his brother does, and they are certainly more shrill. Turns out I can sleep through those too, which should come as no surprise to anyone who has ever had the pleasure of sharing a house with me, but they kept Kate awake. In time I am sure she will get comfortable with them and the fact that we will have a nurse in the house when we are sleeping should help a little bit.

So the new date for Max coming home has been penciled in as January 4 or 5. We are so excited. It would have been great if he could have come home before Christmas, but at the end of the day we want him home when he is ready to be home. Please join us in praying that Max can stay infection free for the next few weeks (and years!) and that we won't have any unexpected bumps along the way.

Wes has been a good boy with all of the crazy stuff going on. We had a lot of training on the equipment Max is coming home on and he slept through the whole thing. Then he slept for about 13-hours straight at the hospital on Thursday night, despite all the new alarms and surroundings. We did finally get his surgeon to agree to an upper GI, and that all looked good, so hopefully no additional surgery. Naturally, the day after the procedure Wes spit up formula for the first time since he had his surgery. So something is either wrong and not showing up, or the retching is some sort of learned thing. We don't know, we just know we want it to go away.

We covet your continued prayers for the boys and for us. The last few weeks have made us realize what exactly it will take to care for Max at home, and it seems pretty daunting right now. Pray that our nerves will be calmed and we can make all of the arrangements necessary before he joins us here at home.

Here are some more recent pics:

Monday, November 30, 2009

A lot to be Thankful for

It's Mark again, Kate let me take a little break from the blog. Hard to believe Thanksgiving has come and gone already! I will add a disclaimer right out of the gate that I am writing this blog and taking care of Wes simultaneously. For example: I have been trying to write those last 3 sentences for about 35 minutes now...needless to say, this post may be a little disjointed.

I am really super happy to report that Max is feeling better!! He was still battling a fever up until about Saturday morning, but has been doing much better over the last 48-hours. The docs are still very confused by the whole episode. They checked and rechecked every possible thing and everything came back negative...which is great but a little frustrating. The upside (always looking for the positive) is that the fever didn't seem to effect any other part of his body: his respiratory status is unchanged or improved, he continues to do his "business" with ease (maybe "gusto" is the better word), and he continues to gain or maintain his weight (he is on a diet...again). We are ecstatic that the fever seems to have subsided for now, and we certainly feel like we have our baby boy back again (I got no less than 50 smiles out of him yesterday...just not for the camera!!). His oxygen needs have been in the 30% range...a tremendous improvement over, oh the last 8-months or so!! He really seems to have turned the corner on the oxygen side of things and has been below 40% for a good 10 days or so now. Max gets a sizable dose of Viagra (or Sildenafil...for those of you who blush easily) to help treat his pulmonary hypertension (Viagra was originally designed as a blood pressure medication that doesn't work well in adults, but has other "marketable" benefits) and one of the side effects of this dose is that it makes him all hot and bothered. I am not trying to be funny here...he really starts sweating like crazy (he gets the cutest beads of sweat on his upper lip). So the docs wanted to see if they could start to wean the size of this dose to see if that would help alleviate his temperature. Before they could do that, it was time for yet another heart echo. I have lost count but I am going to guess this is heart echo number 15 or so (one of the things I am thankful for is Priority Health!!). In typical Max fashion, the echo showed no real signs of pulmonary hypertension!! What?? I kind of feel like God pulled the old bait and switch on us. Like He gave Max a mysterious fever so we would be distracted while He healed other areas of Max's body. I am not going to question your methods God...just be thankful for them. The high PH was always something that deeply concerned me...much more than I ever let on to anyone. So to say that the heart echo results were very good is an understatement for sure. I feel like a different person since I heard that news, almost like I can just enjoy being with my son instead of worrying about his fragile little heart.

True to my earlier disclaimer, it is now Thursday night and I am just getting back to finishing this post. It has been a busy couple of days. We had Max's vent discharge meeting on Wednesday. This was kind of a big pow wow with everyone that will be involved with Max post NICU, which is to say a LOT of people. There was a number of people from the respiratory practice that will be treating Max after discharge, people from the Early On development clinic, social workers, representatives from the home nursing company, representatives from Carelinc (the company who provides all of our 10 million medical supplies), Dr. Doctor was there, Jason the Physical Therapist who has been working with Max for a number of months, and Nurse Emily and Nurse Ashley (thanks for being there ladies!!). It was kind of overwhelming, but at the same time exciting to talk about Max actually coming home!! We did not get a firm date, but we are tentatively looking at December 21 or 22. I cannot even believe I am writing that. It creates such a crazy mix of emotions: unbelievable excitement about having my family under the same roof, our roof, for the first time in more than 8-months, but at the same time there are a lot of unknowns about how much we do and don't know. I like to think we are ready, but with so many pieces of equipment and so many procedures to know, it is hard not to second guess ourselves.

Here is a picture of the efforts taken to break Max's fever: he is naked except a diaper with cold cloths all over him...not fun.


Please pray with us that Max will continue to do well in the NICU for the next couple of days/weeks. We are still needing him to stay below 40% oxygen, and he was at 39% for the better part of the day. He had a really good blood gas yesterday (7.45 and 47), so they made a vent change, they also increased his sat limits (from 90-100 to 92-100) and took away some of his pulmonary medications. Needless to say, that is a lot of things to change in a few short hours. We are praying that he adjusts to the changes quickly and can get back to the low 30% range again soon.

I have to mention this moment at the vent discharge meeting: We were discussing the amount of Albuterol that Max has been getting, and someone told Dr. S (the pulmonary doc, also, I am not protecting the innocent, just have no idea what his last name actually is...but it sounds like "shoe in") that Max was on 0.5 mg, nebulized. He looked very confused so I repeated that it was 0.5 mg. His response, verbatim, was, "that does no compute." It was 5 mg nebulized. Sorry, I only have a lowly finance degree okay. He might not know how to calculate a Compound Annual Growth Rate right off the top of his head...so there.

Wes is still doing well at home. we continue to have issues with retching and are both feeling like we may need to take some more drastic measures that we hope does not lead to him having to have the Nissin surgery repeated. The first step would be to install an extension that would bypass his stomach completely to give it a chance to fully heal (they think he may have pulled a stitch or something along those lines). If that did not work, then we are back in the OR. The chiropractor seems to be helping with reflux, but the retching seems to be somewhat unrelated in a way. Not what we were hoping for. He is still an absolute joy to have around and has really been a great baby. He was sitting with Nurse Ashley at the vent discharge meeting the other day and was scanning every face in the room. Every time he looked at Kate or I he would smile, then start looking around the room again. What more can a parent ask for?


Tuesday, November 24, 2009

Getting Older and....HUGE!

Oh, my goodness my boys are almost 8 months old. Where does the time go?
Max is 16 lbs. 8 oz. and Wes is...I'm not sure he doesn't get weighed regularly anymore. I'd guess he's around 14 lbs. Looking back at the first couple pictures of them I would never have guessed they'd be this big already.

This afternoon I took Wes to the chiropractor for the second time this week. The doctor was impressed that he had kept most of his adjustments. I have another appointment tomorrow. I am not sure how long it will take to see changes, but at this point I am really optimistic. Please pray that this works. Wes has been retching ever since he came home from the hospital the end of September. This would be a great alternative to continuous feedings, another surgery, and/or extending his Gtube to a Jtube (feed him into his intestines).

Max has continued to mystify the Docs. No one can figure out what is wrong with him. Yesterday afternoon his temp. spiked to 39 (102ish). Thankfully it came down a little by early evening. Today was a little better, his highest temp was 38. He was much more himself today. He smiled at me and copied my fishy face a couple of times. Mark and I really like having our calm smiley boy back. Please pray that his fever can stay down, and that the doctors can figure out what is causing them. At this point the only thing they can come up with is some kind of viral infection.
This afternoon Max got put on a vent that is similar to the kind of vent he will come home on. Nurse Mandi drew a gas around 5:30 and it was great! A great sign. We are hopeful that the transition to his home vent (when it comes in) will be just as smooth.

Sunday, November 22, 2009

A HUGE step forward...hope it holds.

The last couple days have been the typical ups and downs. After Thursday night Mark and I were really upset. Max's temp. of 104 really scared us. He still has a temp. but it is now around 100 (37-38). He is on 2 antibiotics right now. They are broad antibiotics to stop whatever is going on. So far all of the tests are negative, which is leaving the docs. unsure what is going on with him. The antibiotics are given through IV. This has caused some problems for Max. He has gone through more than 15 pokes. The IV's go bad really quickly. They have even had to shave some of his hair to put them in his head.

Between the numerous IV's, couple hours of increased oxygen, and temp.-- things have been a little tense. We were supposed to order the home vent Friday, but because of the everything it wasn't. We feel that Max has been working so hard the last couple weeks and we just want some acknowledgment. Yes, his oxygen went up for a couple hours with the high temp. but it came right back down. Thankfully someone agreed. After much discussion, we got word tonight that the home vent is going to get ordered tomorrow! A HUGE step towards home. We feel like Max is finally getting a much deserved pat on the back.

Wes is still "Wild Wild Wes" keeping us on our toes and we love it. He continues to retch, but we are trying something new. I am taking him to a chiropractor tomorrow morning. Hopefully it will work and we can soon get rid of this annoying drip feed.

Thank you everyone for your prayers. Max is doing MUCH better and so are Mark and I.

Friday, November 20, 2009

Punched in the gut.

Today was...well it was fine until my nightly call to the NICU. When I called and our nurse answered the phone, I could tell right away that something was wrong. She was very hesitant, and that is not Nurse Ashley's style. Max has been having a great week. There was talk of ordering a home vent tomorrow(friday). His oxygen has been under 40% and he has been making progress.
Tonight all that has changed. Nurse Ashley noticed that Max was a little warm, which is fairly normal for him these days. So, she stripped him down to his diaper and cuddled him for a while, or at least tried to. Max was inconsolable. She said she has never seen him like that before. Over the next couple minutes she had to turn his oxygen from 32% to 65%. A significant jump. She also took his temp. which was 40 (104). NOT GOOD.
The increase in oxygen takes away the opportunity to order a home vent. Mark and I feel...well...I don't know how to feel anymore. Every time anything good happens with Max something comes along and crushes it. One step forward--ten steps back.
Please pray for Mark and I. We just want our family together. Our boys have gone through soooooo much. It is becoming harder and harder to deal with these set backs. Sometimes I think we are going to celebrate their first birthday in the NICU. I am...out of words. After seeing all the people today at my Grandma's visitation and telling them how great things were........ I told them I saw a light at the end of the tunnel. The light is gone.
I just want my son home. I just want my son home.
I know God has a plan for my family. I trust that my son will come home one day. I have faith that the 4 of us will all be together. I believe in a God that heals---Heals my sons lungs and my tattered heart. I know these things to be true, and yet I struggle with it all.
Thank you for your continuous prayers and support over the last +/- 9 months. Our family has been so blessed by it. Thank you for showing me just how truly amazing the family of God is.

With much Love and Thanks,
Kate

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:


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.

Monday, November 9, 2009

Winded

It is getting harder and harder to find time to sit down at the computer to get the ole blog updated...but I will keep finding that time one way or another. The last week has been okay. No real bad news, but we did get our hopes dashed with Max coming home for the time being. The NICU docs had written an order to get Max a home vent (the vent he will have for the foreseeable future). When the person from pulmonology who orders the home vents stopped by to see Max, she noticed that his oxygen saturation range was 85-100. Apparently Max has to be at a saturation range of 90-100, but this change has caused his oxygen needs to climb above 40% (into the mid 50s). If his oxygen requirement is over 40%, no home vent and no plans on coming home. This was especially hard to hear. We feel like we have been patient, and we were really excited about the idea of Max being home by Christmas. Now that idea seems like a pipe dream. I just want my family together again. I don't care if I never sleep again, I just want to spend time with Kate and our boys, not driving back and forth to the NICU. Right now, Kate and I take turns going to visit Max each day, so the other stays home with Wes. The rest of the day I am either sleeping or at work, so we spend about an hour during the week parenting Wes together, no time with Max together, and maybe a couple of hours on the weekends. It is getting old. We are just worn out and cannot wait until those nights spent apart visiting Max in the hospital can soon be spent together with both boys at our home. We let ourselves get very excited, only to be knocked down for the umpteenth time. It is even more difficult knowing that something as seemingly simple as Max's oxygen requirement is what is keeping him there. I haven't updated weights recently, but Max tipped the scales at 16 pounds 5 ounces last night. He is growing out of 9-months clothes, and he is a 7 1/2 months old micro preemie who entered the world weighting 1 pound 10 ounces. He is officially on the growth chart for kids who are born at term for his age. Everything just seems to be working so well, but his lungs just don't want to cooperate. Please pray that God will grant healing to Max's lungs, and patience to his parents while we try to wait on God's timing to reunite our family.

As you can see from the video below, being in the NICU doesn't seem to bother Max too much. He was ALL smiles yesterday!!


Wes continues to be himself. He has Kate wrapped around his finger something fierce. One little whimper and he knows he gets to take a walk around the house while getting his little butt patted and listening to his Mom sing him songs. Sometimes I think he looks at me with a, "ha ha" type of look. The reflux continues to be an issue and Kate and I are getting sick of it. We have doubled his dose of Prevacid, gone back to drip feeds, and it feels like the reflux/retching has maybe worsened a bit. The surgeon who performed the Nisin G-tube surgery won't agree to another upper GI procedure (an x-ray procedure to examine the esophagus, stomach and upper intestines), he would rather put an extension on Wes' G-Tube so he again is fed directly into his intestines. Kate and I would rather not do this because Wes will be beside himself hungry. We are contemplating taking Wes to a Chiropractor to see if that would help. Pray with us that God will reveal a clear path towards healing, and if He wants to do that apart from medicines and other methods...that would be good with us!! Wes weighed in around 13 1/2 pounds last week, so he is going to have to step it up if he thinks he is going to win any wrestling matches against his big brother in the near future!!

Here are some random pictures from the last couple of days:







Those of you keeping track of the Twinners on the Lamar's blog already know that Adalyn and Emma were born on Thursday morning at 25 weeks 2 days weighing about 1 pound 15 ounces each and 14 and 13 inches long, respectively. I was blessed to met them yesterday with their dad Dave and grandma and grandpa Lamar. The girls are doing great thus far, Adalyn is even breathing on her own with no ventilator and no oxygen!! Quite a feat for such a little girl. There will be a battery of tests and test results in the coming days, so pray for the girls and pray for their parents. We pray that those little girls breeze on through the NICU at lighting fast pace.

It was a real blessing for me to see those little girls as reminder of how far God has carried Max and Wes. It is very easy for me to forget the past and get angry and lose patience about the present, but seeing Adalyn and Emma reminded me that God has never let go of our boys, and he will never let go of the Lamar's girls. I have really been struggling with God's timing in the past few months and it has given way to a lot of anger. Meeting Adalyn and Emma was a really good reminder to me that God is still in control...even after 226-days.

Sunday, November 1, 2009

Reformation Day

I hope that everyone had a safe and enjoyable Reformation Day. I really wanted to stay home and hand out copies of the 95 Theses of Martin Luther to all the neighborhood kids, but Kate wanted to have some family time, so we loaded up Wild Wild Wes and headed to the hospital. We took a little field trip up to the Labor and Delivery floor to introduce Wes to Abi Lamar and her parents. Then we took Abi's parents down to the NICU for a guided tour of what life is like there. After that, we decided to start a new family tradition: we are going to dress up Max and Wes to commemorate Reformation Day. Sounds strange, I know. I will just cut to the chase: if you have children, you may want to not look at the following pictures. There is no way there has ever been a cuter set of bear cubs ever in the history of the world.


I may as well just stop the post there. But I will give a brief update on how things are going. Max has been doing pretty well. His oxygen is up a little bit, 40-45% usually. His secretions are also up a bit (the junk you an I would cough up, but Max can't because of the trach), which can be nothing, or it could be an indication that he is getting sick. We really hope that is not the case. They have made a couple of changes in the right direction on Max's ventilator, which could be why his oxygen is up a bit. The dos have talked about ordering a home vent for Max (the ventilator that we will take home with us), which is a really good sign. That might be the first tangible indication that Max will one day come and hang out here with the rest of us. We can't wait.

Wes is still being himself. The retching/reflux is maybe a little better since the last post, but certainly not gone. We have been feeding Wes over an hour (instead of a drip feed), and it does not seem like his reflux is any worse, so that is nice. He continues to keep his parents very busy, and we love it to pieces.

I hope you have all had a chance to check out Abi and Dave Lamar's blog. They have had a VERY up and down couple of days, but the key is that she is still pregnant. She is 24 weeks 5 days today, which is the same as Kate was the day our boys were born. We pray for many more days and weeks for the twinners.

Here are a few more pics:



Needless to say, Wes was not quite as happy about the face paint and warm fuzzy coat with adorable little bear ears on it.

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!!


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.


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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Sunday, September 27, 2009

Wes is home...again!!

Wow, it has been a whirlwind week. First the surgery, then the recovery, then we found out early Saturday morning that they were sending us home. I was changing the oil in one of our cars and Kate called and said, "you might want to get in the shower...they are kicking us out of here in about an hour." That was at around 9:00 in the morning, we finally left the PICU (yes, they kept us in the PICU the whole time because the Peds floor filled up...yeah community shower room!!) at around 4:00 in the afternoon. I wish I could get away with those kind of "ballpark" estimates at my job. I could write a 1,000 page dissertation on why the neo unit is better than the peds unit at Spectrum Health, but it is one of those "if you don't have anything good to say" type of things. So I rushed up to the hospital, packed all of our stuff up, took as much stuff as I could to the car (via a really sweet Radio Flyer wagon), only to find out we weren't going anywhere for about 5 hours. To top it all off, the hospital does not have ESPN2, and on Saturday, that meant no Michigan football...just MSU football. Needless to say, that couple of hours was BORING!! Anyway, we finally left and went down to visit Max for a while. It was fun to have the two boys "together" again. I say "together" because now that Wes has left the NICU, he is as dirty as the rest of us, and therefore would need to where a gown and gloves. It is easier for one of us to stand outside "the line" and hold Wes while the other visits with Max. We tried to get them to look at each other, and I think they might have at one point, but Kate thought they were just both looking at the ever-so-popular rain forest mobile.

So, after a full day of having Wes home, things are going really well. He is on a good schedule and has been sleeping very well. When I "fed" him last night at 2:00, he never even acknowledged that I was there. That is one benefit to the G-tube: unsnap the sleeper (I think that is what they are called), plug the little tube thingy in, and away you go. I will try and post a picture of the whole operation soon, I know visuals are very useful.

Max has had an okay week. No big changes really. His blood gases have been pretty good, but his oxygen needs continue to be erratic. Not as wild as they have been in weeks past, but anywhere from 40 - 60%. His demeanor continues to be very good and he has started to smile quite a bit (at least for his Dad!!). The only treatment for Max right now is time. He needs to grow. It is possible that his lungs can grow and develop to the point where the pulmonary hypertension will not be such an issue. It is our prayer that this will happen very quickly.

The boys are 6-months old today. Half a year of this crazy life. 6-months of driving to GR, parking in Parking Lot 7, riding in the elevator that says, "Welcome to the Spectrum Health Medical Center. when you exit the elevator, turn left and proceed to the end of the elevator lobby. The Fred and Lena Meijer Heart Center is on your left, and the Butterworth Hospital and the Helen DeVos Children's Hospital is to your right. Please see the attendants at any of the Information Desks for directions." But now Wes is home, and we cannot wait until his big brother can come home too.

Tuesday, September 22, 2009

How many surgeries have we had now?

Success!! Wes made it through the surgery well and seems to be recovering as they would expect. They were able to do the procedure laparoscopically, meaning they did not have to make a large incision to perform the Nissin procedure. The doctor did say that his liver was quite large, but that is often the case in young babies, particularly micro-preemies, and was not a real item of concern. In addition to that bit of great news, they were able to extubate him almost immediately after the surgery and he is currently just on low-flow nasal cannula like he usually is (although on a slightly higher flow of oxygen to make up for the shallow breaths he is taking while the anesthesia wears off). They did move us to the PICU, but nobody besides the anesthesiologist really knows why. From what we have heard, we should just be here overnight and hopefully back down to the regular Peds floor tomorrow. The plan is to start small feeds again tomorrow and start ramping them up as quickly as Wes can handle it. Hopefully the recovery will continue to go quickly and we can take our son home from the hospital again this weekend. thank-you to everyone who prayed for our little guy...these surgeries are not getting any easier as the boys get older. They used to sleep on the way to the OR, now they look at us knowing that something is wrong/different. That will snap your heart in two!! So we are praising God for taking such good care of our little boy, and at the same time asking if this can maybe be the last surgery? For a while anyway?

Monday, September 21, 2009

Surgery Update

I just wanted to get a quick post on here to update everyone on the time of Wes surgery tomorrow. It will be at 12:30 P.M. and likely take about 2 hours if everything goes according to plan. One of our biggest concerns (other than the fact that he is going to have surgery and be put under general anesthesia) is that he will have to be intubated and put on a ventilator for the duration of the procedure. We are praying that God will give him the strength to quickly recover and begin breathing on his own. If he needs to remain on the ventilator after surgery, they will move us up toe the PICU again. That is not a huge deal, but we have enjoyed the Independence we have had in our private room versus the fish bowl rooms on the PICU floor. At the end of the day, this is all petty stuff compared to a successful surgery. They can put us in a smelly closet if it means that Wes' procedure went well.

Please join us in storming the Gates of Heaven with prayers for our son. It is no fun when surgery becomes "old hat" for your kids. Pray for the nurses and doctors in the OR and the nurses and doctors charged with Wes' care following the procedure. And Wes' parents too...if you have time. Wes, then the docs, then the nurses, then us. I will update as soon as I can following the procedure.

Sunday, September 20, 2009

More of the same

Wow, I cannot believe it has been a week since the last post. It has been a pretty quiet week for the most part. We found out that Wes is going to be having the Nissin G-tube surgery on Tuesday, but we won't know what time until Monday. In the meantime, Wes has been hanging out at the hospital waiting. He has had a good week. Kate was at the hospital from last week Sunday until Friday night when I kicked her out and told her she had to go home for the night. Even then, she didn't sleep well because she is so accustomed to waking up and dealing with Wes at all hours of the morning. At any rate, that is just WAY too long to be in a hospital if you are not a patient. Wes is certainly back to himself. He has quickly learned that if he so much as whimpers, Mom will pick him up and rock him and bounce him and pat him, etc. He has learned even more quickly that Dad will hold him when he is calm and can behave like a big boy. And watch football. Just kidding, that was my lame attempt to act like a "tough love" kind of dad. Wes was having a nice quiet weekend until last night when his feeding tube clogged. This tube goes up his nose, down his throat and through his stomach into his intestines. The tube goes into his intestines to prevent reflux. After trying every trick in the book to unblock the tube (these tricks include using Coke and meat tenderizer to try and break down any protein deposits that may have built up), the decision was made at about 1:30 this morning to give him an IV and give him some sugar water to keep him hydrated until surgery on Tuesday. After giving it some thought, I mentioned to the doctor that I would rather not forgo 48+ hours of good nutrition and said that Wes has been through so much that a little tube up his nose wouldn't bother him in the least. That would be fine down in the NICU, but in Pediatrics, they do things differently. If Wes was in the NICU and his feeding tube clogged, they would have pulled it out and put in a new one...call it 5-10 minutes worth of work. That is not how it works in Peds. After about 12-hours worth of effort trying to unclog Wes' feeding tube, they called down to radiology to see if there were any openings for Wes to be transported down there and put under the fluoroscopy machine (a real-time x-ray used to see where the feeding tube is going and to ensure that it is positioned correctly). Of course there wasn't...it is the weekend. So, right now, Wes has a feeding tube in his stomach again, not his intestines. This is somewhat risky. We don't know if he will begin to reflux and aspirate into his lungs or not. He is on a drip feeding compared to a gravity feed, so we hope that he won't have a lot of volume in his stomach at any given time. I have noticed already that he is coughing more, so I am really hoping that this is a coincidence and not him refluxing already. Tuesday cannot come quick enough. From what Kate and I have gathered from various nurses, if the surgery and recovery go well, Wes may be able to come home sometime next weekend.

Here is Wild Wild Wes enjoying a tubby. It takes about 10 minutes, but then he enjoys it. Kind of:

Max has had a fairly busy week. For those of you keeping track at home, Max's vent pressures are currently 26 over 11 versus 30 over 10. So up on the bottom pressure (PEEP), down on the top (PIP). His oxygen needs have stabilized a bit in the 40% range, mostly due to the vent change. Max did have a follow up heart echo on Friday too. That report showed essentially no change, which, if I was a "half-full" kind of guy, would see that as not getting any worse. The crappy part is that the cardiologist that read the echo said that he feels the pulmonary pressure is more like 66% of systemic, not 50% (refer to the last post for a description of the heart's pressures). This would indicate that Max's pulmonary hypertension is more severe than we thought. And there is nothing we can do about it. He is on the maximum dose of nitric oxide and the maximum dose of Viagra. Both of these drugs are designed to reduce the blood pressure in the lungs. So we wait. I do not know a lot about "severe" pulmonary hypertension, but I do know that phrases like "poor quality of life" and "shorter life expectancy" start popping up. The best thing for Max right now is to grow, and he has been doing that pretty well. He tipped the scales at 12 lbs 9 ounces last night. The down side is that his growth all seems to be happening in his cheeks and not his lungs. I was asking him earlier today if he thought the Broncos could beat the Browns this afternoon...he gave me an open mouth grin and they won 27-6. Coincidence? I will let you decide. I should add that it takes a tremendous amount of energy for him to smile, his cheeks are that big.

A happy camper:

Cuddling with Mom:

Sunday, September 13, 2009

What a difference

Wow. What a difference a week can make. I will start with Wesley tonight. On Friday morning, the docs decided to take Wes off CPAP...and boy was he happy!! He is back on nasal cannula and really enjoying sleeping without a full SCUBA apparatus on. He has improved a LOT on his oxygen needs as well. On the nasal cannula setup, they measure the amount of oxygen given in "liters of flow" versus a percentage. When they first moved Wes to cannula, he was at 5 liters of flow, and as of this morning, he was down to 0.10 liters of flow. He is like a whole new kid. Kate and I were just talking this morning about how we both think Wes feels better now than he ever has. He is not being too fussy, he can entertain himself in his crib, he is starting to smile a lot more, and really enjoys watching football with his Dad. They moved us out of the PICU on Saturday evening because Wes was doing so well and they were filling up pretty fast up there. So we were moved to a "regular" pediatrics room. This was fine by us because it means that we get a private bathroom with a shower!! As fun as it was to wear Aqua Socks while showering in the 3x5 foot community shower shared with about 75 other families in the PICU, it is an adjustment we are willing to make. Wes and I had a slumber party last night in our new room, and he slept like a champ. Granted, all the running around the hospital room during the Michigan football game likely tired him out. We are not sure what the plan for Wes is right now. The decision has been made to go ahead with the Nissin G-tube surgery (same permanent feeding tube surgery that Max had), but we do not have a clear message about when that might happen. One doc said that we should talk to the surgeons on Monday and get it scheduled, another indicated they may want to wait as many as 3-weeks to make sure he is fully recovered from the respiratory bug. So we have no idea if he will be discharged in the near future or stay a patient until after he has the surgery. Hopefully we will know more tomorrow.

Max had a good weekend as well. His oxygen needs continue to bounce all over the place for no apparent reason, however. He did stabilize in the high 40 to low 50% range for the better part of the weekend, but had another episode last night where the nurses had to bump him up to the 80% range. The really crazy part is that he slept through the whole episode. After a couple of hours, the nurses were able to wean him back down to 50% or so. The biggest fear for Max right now is pulmonary hypertension (PH). As we all know, the right side of the heart pumps blood to the lungs to handle the oxygenation of the blood stream while the left side of the heart pumps blood to the organs and extremities. A healthy heart has a pulmonary blood pressure that is about 5-10% of the body's systemic blood pressure (the BP reading we are all familiar with, ideally 120 over 80). Max had a heart echo on Friday (kind of a surprise to us) and the cardiologist that read the echo guessed that Max's pulmonary BP is about 50% of systemic, which would be considered a moderate case of PH. I spoke with Dr. Doctor at length last night about it, and he said that he had another cardiologist look at the echo and that doctor said that there was not a lot of evidence of PH. So we are in a bit of a holding pattern. The only real way to tell what Max's pulmonary BP is would be to put him through a procedure where they thread two wires from his groin all the way to the heart to measure the pressures. Dr. Doctor said that he would rather not put Max through that because they would likely not change anything based on the findings. Max's gases continue to be nothing short of phenomenal, but the docs have been hesitant to adjust his vent settings because of the volatility of his oxygen needs. Please pray with us that God will continue to touch Max's lungs and provide healing. He has performed miracles in Max's lungs before, and we want to ask for another.

Not only did the boys both have good, stable weekends...but football is finally here!! Not only did MSU lose, U of M came out on top of easily one of the best football games I have ever seen (and I got to watch it with Wes...who REALLY likes the TV), but I also got to go watch the Denver Broncos game, and they came out on top on a last second fluke play. On top of all of that, the Quest for the Cure race was this weekend, and we had an absolute blast. A huge thank-you to everyone who came out and participated, and to Rob and Tiece and Jason for giving of your time to put everything together. Kate and I look forward to showing Max and Wes pictures of the event and hopefully participating on the other side of the race next year. Gratitude is a hard thing to convey in words, and it has become increasingly difficult as God has continued to bless our family through so many of you. To say "thank-you" seems so meaningless. The reality is that your faithful prayers have been the difference. You have stormed the gates of Heaven on my sons' behalf and your prayers have been answered on so many occasions. The more tangible gifts, ranging from meals and lawn mowings to monetary gifts and gas cards, have alleviated an enormous source of stress in our lives right now, and allowed us to focus on being the best parents we can be to our boys. Thank-you is just not enough.

Wednesday, September 9, 2009

Hanging in there

The boys are both doing about the same. Max has had some more up and downs than Wes has, but mostly from an oxygen perspective. He was as high as 80% a few nights ago, but after some dips down into the low 30s, he has settled right around 50%. This is still higher than his post-op baseline of about 40%, but they have made a number of changes to his ventilator, so it is hard to really compare. they have not changed any of the pressures on his vent, which are the numbers I typically reference on here, the changes have been to the way the vent works with his breathing. I did not understand hardly any of what the doctors and respiratory therapists had decided to do...but thanks nurse Mandy for trying to explain it to me!! We had a nice 15 minute conversation that basically ended with me saying "in English please." I don't want to toot my own horn, but I have become pretty familiar with this particular vent, and I have no idea what the changes they made are actually going to do. We were concerned that Max might be getting sick as well, and that was causing his O2 needs to jump. We are starting to feel like that might not be the case. He is cool as a cucumber as always...but if he is uncomfortable, his frowny face will break your heart. The corners of his lips can actually touch his jaw line...it is quite remarkable. Anyways, he never seemed to be feeling ill, but he was requiring a lot of "suctioning"(the trach keeps Max from being able to really move any "stuff" out of his lungs via coughing, so it needs to be suctioned out periodically so it does not plug up the vent tube). That seems to have decreased as well, so we are hopeful that God has once again answered our prayers and spared Max from getting sick. He has been through a lot in the last few weeks, and we just really pray that God will continue to be very near to him and keep him company with Wes gone...although Wes is not too far away.

Here is a recent picture of Max. Kate and I have been trying tirelessly to get him to smile. I think it is hard for him because his cheeks are so big and it requires so much energy to lift them. That is another way of saying he usually just gives us this look and we have not been too successful just yet.



Wes is still doing about the same as he was on Monday, at least from a clinical perspective. His is still on a CPAP of 6 and his oxygen remains right around 45-50%. His attitude is quite a bit better though. He has gone from being inconsolable and clearly in a lot of pain to being much more himself. Kate has even been able to get a number of ear to ear smiles out of him...not bad for a kid with two giant prongs shoved up his nose, a head band that he hates, a feeding tube that goes up his nose, down his throat, through his stomach and into his intestines, and a monster IV in his foot with basically a cast on to protect it. We were not able to catch any of his smiles on film, but we did get this picture which shows the contrast between how he looks/feels about his Mom and how he looks/feels about me. He definitely recognizes me, but it doesn't always bring a smile to his face. It is more of a "I have got my eye on you mister" type of look.


Kate was able to get this cool video of Wes watching his Fisher Price Rain Forest mobile. He is in love with this thing. He had one just like it in the NICU, and Grandma and Grandpa Wiersma though he should probably have the same one at home. So Grandma search high and low and finally found it. Okay, maybe it wasn't so hard to find, but whatever...Wes loves it. It was still in the box when I took it up to Wes' room, and the PICU was nice enough to provide the batteries. I asked the nurse if there was any chance they had a phillips head screwdriver because I had left my tool chest at home. She thought they might (for changing batteries on mobiles and such) and came back with a flat head screwdriver that was as big as a paint scraper. Thanks!!! So I did what any dad would do for his son: I assembled it with a pair of scissors. Only one band aid too!! As you can see from the video below, it was well worth it!!

Monday, September 7, 2009

Realization

This has not been a good weekend. At 2:00 A.M. on Saturday morning Kate and I woke up to about 5 people with flashlights in Wes room who informed us that the decision was made to move Wes up to the Pediatrics Intensive Care Unit (PICU). This was done because his oxygen needs had continued to increase. When Wes came home from the hopstial on Tuesday, hes was on 0.12 liters of flow, which is roughly 21.5% oxygen (room air is 21%). He was up to 3 liters of flow on Friday night, which equates to roughly 32% oxygen. They moved him up to PICU and tried what is called high-flow nasal cannula at 5-liters of flow. That still was not enough, so Wesley was put back on CPAP. Saturday was easily the worst day of my short parenting career. Wes was just inconsolable, and that is not his normal demeanor. His is "spirited," but there is always something that is causing him discomfort, i.e. he lost his pacifier, he has a dirty diaper, etc. There was nothing that I could do to calm him. He would cry so hard he would make himself gag and cough then start crying again. At one point on Saturday, Wes was on a CPAP of 6 (CPAP pressures range from 5 to 10, 10 being the highest) and requiring 90% oxygen. There was frequent talk of him needing to be reintubated and put on a ventilator. They gave him a dose of Valium on Saturday to try and sedate him and calm him, and it worked too well. Once the drug took effect, he fell into such a deep sleep that he was hardly remembering to breathe anymore so there was 4-5 nurses and docs in the room pinching him and stimulating him into breathing.

The current diagnosis is that Wes has an upper respiratory virus. He was tested for the "known" respiratory viruses but has none of those. Later in the day on Saturday Wes was at 60% oxygen and he would be calm as long as the Valium was still working, when it wore off, inconsolable rage would ensue. The docs decided to give him a dose of Lasiks, which is a fast acting diuretic designed to rid the body of any excess water weight, hopefully including any excess fluids in the lungs. He is also on a course of steroids to help reduce the inflammation in his airway. This combination of treatments along with increased breathing treatments have helped to reduce his oxygen requirements to about 45%, but he remains at a CPAP of 6. He is still very uncomfortable, I am sure because of the tightness in his chest and the discomfort of the CPAP.

Max did not have a very good weekend either. His blood gases continue to look very good, but his oxygen requirements have been very high. His baseline following the trach surgery was about 40-45%. On Friday that number was as high as 70%, and last night he was up to 80% at times. He does not seem to be sick according to both his attitude and his blood work. The docs turned up his Nitric Oxide from 10 parts per million to the maximum dosage of 20 ppm. This seems to have had a little bit of a positive affect and his O2 needs are currently in the mid-high 60s. He had been doing very well this whole week, and was a real trooper with his brother going home and only seeing Kate or I for a few hours a day.

Around the NICU, the experience of having a child in the unit is often likened to a roller coaster. My thought it that if your NICU experience is like a roller coaster, praise God. Roller coasters are typically over very quickly. Our journey has been much more like climbing the stairs of a 100-story high rise. Progress is slow and painful and in a moments notice something can flip you over the rail and you will find yourself once again on the ground floor looking up at the task ahead.

This weekend has led to two realizations for me. The first is how fragile these kids are. Wes caught an upper respiratory virus. It could have come from Kate or I, a gentlemen we passed on the way to the car on Tuesday night, etc. I know now what it will take to protect these boys from getting sick, and it looks a lot like living in a bubble. If you are not these kids' grandparents, you will likely not meet them for quite a long time. We want nothing more than to show them off, but we simply cannot risk that. They have 9-cousins who have seen only the boys' pictures, yet have been some of Max and Wes' biggest prayer warriors, and even when the boys come home, they will not be able to meet. When an upper respiratory virus that would give you or I some tightness in our chest and a bit of discomfort lands Wes in the PICU on life support, we have no choice but to take every possible precaution. This was not RSV or the flu, either of those would almost certainly have been much worse.

The second realization I have come to is just how sick these two boys are. That may sound strange, and I know they have been in intensive care for the last 5-months, but it took Wes' trip to the PICU to really drive it home for me. Wes currently resides in the room nearest the nurses' station on the critical care floor of the children's hospital. We have seen a number of kids whose injuries or illness have required them to be brought to the hospital via AeroMed helicopter get wheeled past Wes' room. One of the respiratory therapists said on Sunday that he is happy to see Wes' O2 needs come down because he was "really really worried about this little guy." This is just more evidence of how fiercely we will have to protect these kids once they are home. And also how thankful we need to be that God has allowed us another day with our precious boys.