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.

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?

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.

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:

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.

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!!

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.