The Journey Continues...

It’s almost been 6 weeks that William has been in the hospital, and I feel like I have aged at least 6 years! I’ve made over 85 visits to the hospital, paid over $150 in parking fees, visited 4 different units in the hospital, met with dozens of specialists and followed up with a never ending list of test and lab results. I’ve also come to memorize the potholes and bumps on the road to the hospital, befriend many other patients, respect many doctors and even be on a first name-basis with the garage parking tenants. I guess I’m a pretty big deal at the hospital…

A little over a week ago William was scheduled to be discharged. I was so excited as I woke up that morning thinking I would finally bring my baby home. Away from the needles and IV’s, away from the monitor beeps, and away from the constant blood tests and cultures. As I ironed his coming home outfit that morning, I got this small suspicion that I shouldn’t get my hopes up. After all, he’s been scheduled to come home twice before and then he’d lose too much weight or have trouble breathing. But last week I thought we were through all the problems. I thought he’d finally come home. As Dan and I began to leave the house to pick up William, I received a phone call from the nurse telling me that his temperature had spiked to 105 that morning, with a heart rate of 220 and that he was not coming home after all. Again. Dan and I hopped into the car and immediately ran to the hospital.

At that time William was on the Pediatric Floor for training and preparation to be discharged from the hospital. But once his fevers started spiking that high, we found ourselves back in the Intensive Care Unit (PICU).  From there the tests started. Every day they drew more blood, pricked his already scabbed over heel and took more urine samples. Nothing showed up and his fevers continued to spike. The doctors were perplexed and the potential diseases/viruses/bacteria that were brought up with doctors kept Dan and I up at night.  They thought at one point he had Meningitis and did a spinal tap. Thank heavens that came back negative! We never knew when we went to bed whether we’d be awaken by a phone call from the nurse telling us William had another spell. There were even moments when Dan and I thought we’d never bring William home. I wish I could erase from my mind the image of little William in his hospital bed, panting and struggling to breathe when his temperature spiked too high and when his heart rate was over 200.  Those are images that will probably haunt me the rest of my life. I worried and still do how his already frail heart can withstand such pressure. Wouldn’t he go into heart failure? The doctors assure me that he will be okay, and that if needed, he could go into early surgery.

Yesterday I received a call from the pediatric cardiologist telling me that William tested positive for RSV. I cannot explain to you the rush of emotions that went through me. On one hand, I was worried for William and how his already delicate heart/lungs would be able to withstand this virus. But the other part of me was relieved and encouraged that we finally knew the source, and that it wasn’t worse than it could be.  He was tested 7 days ago for RSV, which came back negative, but it wasn’t until they tested him again yesterday that it finally came back positive. And so now our little journey continues.

I do not know what the future holds. I do not know how William will endure this virus, or when we can take him home or when his surgery will be. I’m learning not to think of that, but to just keep my head down and make the best of the current day I have. There are smiles I can’t miss from Cooper. There are jokes to be had by my sweet husband. There are countless meals and notes from friends and family that brighten my day. There is so much good in my life. As so I live day to day, hour to hour trying my best to deal with the challenges that befall me, and to relish the good moments that I have. And when I have moments of complete despair and wonder if my life could get any harder, I meet someone who has it far worse than I do. And I am reminded of how richly blessed I am.

All that we suffer and go through molds us and shapes us into becoming better people. So it’s worth it. And William is also worth it. I would relieve these last 6 weeks a million times over again if it meant that I could still have him in our family. He is such a blessing and I believe he will be the one leading us to heaven.

Update on William

Seeing that William has been in the NICU for 3 ½ weeks, I thought it time to update friends and family on his condition. I was hoping and praying for this post to be a happy one about his plans to come home, but unfortunately that time has not arrived just yet. There are 3 main things that the doctors are monitoring quite closely and will continue to until little William comes home: his breathing in his lungs, his oxygen saturation levels and his feeding. Although I do not profess to be a medical expert, I will attempt to touch on each of these areas.

The Lungs:  Because of William’s rather large hole in his heart, there is an extra amount of blood flow to the lungs. This makes the lungs wet and heavy. His body/heart/lungs then have to work twice as hard to breathe and dry those babies out. The doctors and nurses compare it to running a marathon and being out of breath.  Whenever I hold him, his little head bobbles up and down and his chest moves in and out -and you can visually see his small body working hard to compensate for his heart defect. Obviously he can’t do it alone, and he is getting help from medicine (diuretics) to rid his lungs of that extra fluid. The medicine is helping, but we haven’t found the right dosage or combination of prescriptions. It’s a balancing act to find the right amount which dry out his lungs but don’t dehydrate him, or deplete/flood his blood levels of potassium or sodium. Even today they added to his dosage of diuretics, and I hope we soon find the right amount.

Oxygen: You will remember from my previous post that we were trying to get William off oxygen. The good news is that we have, the bad news is he still has a nasal cannula (breathing tube). He is breathing the same room air that you and I do, but he has an increase in air flow which pushes the air up his nose. We are trying to wean him off his cannula incrementally because he can’t go home on it. 

Feeding: Initially, William’s eating was awesome. He was able to take a bottle and also nurse from me. He has the coordination of sucking and swallowing which is HUGE, especially since he has Down Syndrome. Dan and I were encouraged initially with his abilities to gain weight and eat on his own. Unfortunately his eating volume began to scale back because (as noted above) his lungs/heart were working overtime and he was trying to run a marathon and eat at the same time. He got worn out after a few sucks, became disinterested in eating, fell asleep from exhaustion and therefore began to lose weight. Last week the nurses put a feeding tube up his nose to help him eat.  He has started to gain weight incrementally and we are so grateful for that. He’s 2-3 ounces heavier than his birth weight (6 lbs. 15 ounces) and ideally he needs to be 12-15lbs for his surgery. Today I found out that the doctors plan to surgically implant a feeding tube into his stomach. Poor little guy. As if he hasn’t been through enough! It will be temporary until he has his heart surgery, recovered and can eat strictly from the bottle. We have a long ways to go until then. The doctors feel that this tube is easier/less risky for me to use when he comes home. If I were to incorrectly place the tube, it could cause damage to little William and we’d be immediately sent to the ER for an X-ray and exam. Ugh, no thank you. But I wish the latter solution was easier to swallow (no pun intended…). It just kills me to see him go through an additional surgery–even as small as it may be. My heart just aches to see this sweet, innocent boy go through it.

So the question I know we’re all asking is: “so when does William get to come home?” I wish I knew. It seems every day the answer is different. In fact, within these 3 ½ weeks, twice we’ve been very close to bringing him home and then BAM, there’s been a hiccup or set-back. Looking back, I’m so grateful he didn’t come home because he wasn’t ready. It could be a few more weeks, or it could be a few more months. At this point we are living a day (or an hour) at a time and taking things as they come. He will come home when he is ready, and we are learning patience in the meantime. Besides Dan and I, no one has seen little William. Not even my mother (who was here for 3 weeks) or mother-in-law. Talk about patience! The hospital NICU rules have tightened due to the severity of the flu outbreak and only parents are allowed inside. I get the rules, and I understand the restrictions, but I just want to share little William with everyone because he is so darn cute. But until then we are focusing on his health and praying he continues to get the best care possible.

If you’ve made it to the end of this never-ending post, I thank you for caring. Thank you for your prayers and kind words. These last several weeks have been nothing less than a rollercoaster, but we have faith that smoother days and flatter plains are on the horizon. Hopefully next time I post, I can announce his homecoming!

Xoxo,
Lindsay

P.S. Enjoy the pictures. Isn’t he adorable? We’re completely smitten!