Things are progressing rather quickly, so today we will try and can keep up with the latest beat using a different format (I may wish I would have thought of this sooner!). I will list happenings all on this same post, more like status updates and stay current with it all.* The most recent will be at the top, so if you are checking in later, you may want to start from the bottom of the page.
Saturday, 5:00pm … Winston’s personality is beginning to really return now! He must be feeling better (or he put up a good front for his PICU nurse friend, Stephanie, who came to visit!). He also got a bath, another nap, and crushed another bottle… hopefully signs he is back on track!
Saturday, 2:00pm … While mom and dad snuck away for a quick lunch with some Buhler friends, Winston got to play and nap with Grandma Fisher – one of his favorite pastimes! With the tubes out, he is showing more signs of returning to his normal self. A couple more bloody diapers, but it seems to be lessening every time. We pray it continues to trend in that direction.
Saturday, 12:00pm … Time for the chest tubes to come out! They perform this procedure right in the room and set up takes longer than anything else. While Dr. Jensen removed the sutures that secure the drainage tubes, Winston just hung out and took it all in. Sometimes it is like this wise old soul has done this all before! The pulling of the tubes is pretty painful, and older kids describe the pressure changing inside their chest. Winston expressed his displeasure for a bit, but I would have cried a lot more!
Saturday, 9:30am … During rounds the doctors evaluate Winston and discuss the bloody stool scenarios. (Is it coincidence that the heart babies with dusky blue skin overtones see the “Blue Team”?) We decide to hold off and wait for the “results” of the next diaper, but they did order a KUB to make sure it was nothing more severe (mama knows best!). If there are not signs of improvement we will have to rest the bowels altogether and hook him up to iv fluids for lipid nutrition.
Saturday, 6:00am … Winston enjoyed his ride in the wagon down to radiology for his normal morning x-ray check. Winston cooperated perfectly. Mom requested a KUB also (stomach x-ray) in hopes to rule out any major causes for the bloody stool, but to no avail, protocol dictates that an order has to be placed first. This was also followed by normal lab work and thankfully they found a vein on the first stick.
Saturday, 4:00am … Same thing with this diaper, a bit of blood. We are hoping this is his body just recovering from the traumatic surgery and adjusting to different profusion levels.
Saturday, 2:00am … One thing you look for in recovery after a surgery is the digestive system firing back up (aka- the first stool). Winston had one yesterday, but not again until now. Unfortunately there was blood in this one so that raises the alert level another notch! I’ll spare you the details but, we, and the staff, visually dissect diaper output for clues as to what is going on inside Winston’s system. A sample was sent to the lab and it was confirmed there was blood present.
Friday, 11:00pm … After steadily increasing his feed amounts since surgery, Winston has begun to show little to no interest in eating the past few attempts. If you look at the kid, 18+ pounds proves this is not a problem we have seen a lot! Nurses see him and claim he can’t be a heart baby; we know it is a result to of many WinstonWarrior prayers! We will continue to watch and pray that his appetite returns.
Friday, 9:00pm … Well it never fails, Winston likes to keep things interesting whenever we move to the floor! He was lethargic all afternoon and just did not seem comfortable. Right before leaving the PICU he threw up most of his bottle. Though I tried to attribute it to normal baby stuff, he had another emesis at 9pm (2hrs after previous feeding) and the worry level in Wahlgren family rose to another level. The good news was he perked up a bit following this and seemed to feel a lot better.
Friday, 6:45pm … Settling in to my new crib on the 4th floor! Praying for a boring weekend of good eats, little pain, and clear drainage in the chest tubes! Praise God for the steady progress.
Friday, 6:00pm … Finally making the move to the 4th floor!
Friday, 1:30pm … The EKG looked really good and had nice sinus waves. They did note some minor irregularities, but these were what they would expect after open-heart surgery. RPN Metta gently yanked out the pacer wires and our little warrior didn’t even make a sound. These wire leads are secured at the skin with a stitch and attached inside just enough that they come loose when they are pulled out. The older kids say it is a weird sensation but doesn’t actually hurt too much. Still crazy to watch them pull wires out your baby’s body! We are waiting to move to the 4th floor, but currently they are packed full. We don’t mind hanging with our friends in the PICU, they have provided us with a lot of comfort and continue to generously serve and care for our family.
Friday, 10:30am … Getting a 12-lead EKG to check for rhythm and get a “close-up” of the heartbeat waves.
Friday, 9:30am … We have started his home meds and they will watch everything real closely. His new physiology may need doses to be adjusted. He currently as a resting heart rate of about 120. These meds help keep a strong squeeze and a slower beat. In the wrong proportions his blood pressure could end up too low or his heart rate too slow. If he responds well, they can pull the pacer wires, and it looks like we will be moving to the floor later today.
Friday, 8:30am … Winston is in his crib taking everything in. Alert and curious, which is a great sight but creates new challenges. Everything within his reach is a toy to him or goes straight to his mouth! Hopefully we can keep him from pulling his pacer wires or chest tubes for drainage. A tight swaddling barely contained him during the newborn stage and compared to then, he is even more mobile at this age. I don’t want to think about the surgery at 3-4 years of age! And we’ll have to explain everything to him!
Friday, 7:30am … There it is! He’s baaaaaack. Got the first big Winston smile this morning. The eyes were starting to bear that smile-shine too.
Thursday, 4:00am … Winston had his every 2-hour assessment check and also needed his daily blood draw. This is a challenge and the best vein to use is in his head. Sounds terrible, looks worse, but truly a better alternative for him. This was one and done; anywhere else ends up being multiple pokes and pricks, often ending with a call to the vascular team to complete the job. Night nurse Kyle got it on the first stick and results came back positive.
Thursday, 4:00pm … The rounding team came by for mini-rounds and they were all very pleased about Winston’s progress. If he continues to respond well to the stoppage of his iv medications, we may be able to move to the recovery floor tomorrow. Of course we always tell the PICU staff, no rush on our end – we know he is in capable hands here! The floor will come in God’s timing.
Thursday, 3:00pm … We ran down for a late lunch and came back to find W without his nasal cannula! This eased his breathing efforts and kept his oxygen saturation levels up (but without the intrusiveness of the breathing tube). He kept pulling it out anyway and his O-sat levels have remained high for his physiology. Another baby step to celebrate and thank God for.
Thursday, 1:00pm … Winston is awake and just chilling in his mom’s arms, hanging out. Still waiting for that big smile to return, but it may be a day or two … much of any facial expression will make that headache feel even worse! (So daddy and grandpas are not allowed to be silly to coax a smile or laughter!)
Thursday, 12:00pm … Winston gets to do his other favorite thing – SLEEP in mom’s arms! (One of mom’s favorites too, of course! And well deserved rest for the both of them!)
Thursday, 10:00am … After the pain meds have time to set in, Fanny – the first PICU nurse at Children’s Mercy, 47 years strong and counting! – takes out Winston’s central line, arterial line, catheter, and removes the Neher’s monitors. All signs that W continues in the right direction! We are relieved and feel very blessed.
Thursday, 9:00am … At morning rounds they make the decision to begin pulling lines and tubes Winston does not need anymore.
Thursday, 7:30am … Dr. O’Brien, Winston’s surgeon, checks in on the progress. He surveys everything and is very pleased! To us, it says a lot when the surgeon continues to check in on the patient after the operation. I suppose this is standard practice, but Dr. O’Brien is invested in his work and
Thursday, 7:00am … The PICU doctor adjusts the pacer to see how Winston’s heart will respond on its own accord. With the pacer off, the rhythm looks great and is steady! We will continue to watch this closely as he is weened of surgery meds; tomorrow they will begin to start up some of his normal daily meds.
Thursday, 6:00am … Winston got to do one of his favorite things: EAT! This helped calm him down as well, and with a full tummy he drifted back to a peaceful sleep… of course not without grasping onto something first. In his chair at home he holds on to his chain links or when we have him, tugs on our shirts.
Thursday, 3:30am … Winston had another episode of heart block, or “Brady,” where the heartbeat slowed way down. After some frantic moments, it was discovered the cord was loose from the pacemaker and this seemed to make all the difference.
Thursday, 1:00am … He is feeling the pain and needs meds about every two hours to relax. His cry is hoarse and he wants to turn over on his side. It is so hard not to just pick him up and hold him! We also crank his music and Matt Hammitt’s Every Falling Tear album seems to soothe his heart and soul! What a blessing. And as much music as Winston hears, he will either grow up with a great passion and love for music… or his parents will have worn him out on it and he’ll want nothing to do with it!
Wednesday, 6:00pm … Winston was extubated and is breathing on his own. This was a big step as the positive pressure created from the ventilator is not ideal for his system as it adjusts to the increased blood flow in his head and upper body.