...3/30/17...

We are HOME! 

 

Wyatt is happy to be home and we are happy he's here. 

...3/26/17...

We were so close! So close to beating our record of staying away from the ER/hospital (other than doctors visits, we don't count those) for 12 days. 

 

But.... we didn't. Turns out, Wyatt loves his peeps at JHH. 

Last night Wyatt went to bed and had significant episodes of desaturations- levels in the 60's (normal is 95-100), coughing fits, and wouldn't bounce back up with repositioning or nasal suctioning. All of these are worrisome and reasons to head to the ER. Because we have been here so often, we are pretty adept at knowing the plan. Wyatt needed a chest X-ray, some bloodwork, and some good ol' deep suctioning with the nasal catheter (yes, it sounds as bad as you might think-- but it does the trick and gets all the gunk out of his chest). He had been sick most of the week with viral junk and so was I, so we knew it was a matter of time. 

 

Well, we ended up in the PICU. His CO2 levels were really high, at 62 (normal is 35). So we knew we would need to do some suctioning and play with the settings on his BiPAP to help force out the CO2. That's a lot of attention for a regular floor, so we were sent to the PICU. Totally not our favorite place, but we understand it's where he needs to be right now. So for tonight, we will spend another night in the PICU. Well, Daddy and Wyatt will-- Mommy has dog duty tonight, which also means king sized bed all to herself, well, and the two four legged creatures who think it's their bed and really only share a portion of it with their humans! 

 

So we will spend a few more days looking at ways to support our little guy and cross our fingers for a quick return to home. He's got big things to do like practicing his crawling (he's not there yet, but he's getting close), get kisses from his dogs, and being super cute. 

...update, part 3...

So we left off with the bombed sleep study. 

Brian pulled him from the sleep study and took him to Hopkins ER. He was admitted and put on BiPAP (bilevel positive airway pressure), which is like CPAP used for adults with sleep apnea (Hi, Nana! We're looking at you!) or kiddos with other respiratory issues. The only concern with the BiPAP was the amount of air being pushed into his lungs to help him breathe would also introduce air into other parts of his body because the BiPAP is forced through the nose and not directly into the lungs. For this reason, we knew the increased air would have an impact on his stomach, causing issues with his feeds. Since he had a Nissen fundiplocation, a procedure to tighten the esophagus and decrease the amount of acid and bile coming up, he would have greater difficulty burping or getting the air out of his stomach. At that time the only options were to do oral feeds, which we knew was impossible, or switch his feeding tube to be a GJ tube. The GJ (G, gastric= stomach and J, jejunum= second part of small intestine) would be more like his ND tube (n=nasal d=duodenum, first part of small intestine) and we knew he tolerated that well. It would, however, mean another sedation and potentially some time in the PICU. 

 

First day on his home BiPAP, check out that giraffe print!

Fortunately he did okay with sedation and we were able to return to the regular floor, which is much more comfortable than the PICU. If you've ever spent any amount of time in an ICU unit, you'll know what I mean. So many rules. So many providers. So many alarms. So many really sick kids. And, the worst part for us, no bathroom in his room! I'm sort of joking, but sort of not. It sounds super ridiculous, but it's a really inconvenient part of the floor. That and no food allowed in the room, and you know I love to eat. 

This dude was so cute on Valentine's Day in the hospital. 

So, since November, our little boy has been through quite a bit. I believe we are at 50 some days of time in the hospital in the last 4 months. Phew. 

Despite all of the procedures, hospital stays, doctors visits, insurance phone calls, emails with doctors, etc., Wyatt is doing amazingly well. He's come so far and is the happiest boy you'll ever meet. 

 

Thank you for being on this journey with us. We appreciate each one of you. 

...update, part 3...

So we left off with the bombed sleep study. 

Brian pulled him from the sleep study and took him to Hopkins ER. He was admitted and put on BiPAP (bilevel positive airway pressure), which is like CPAP used for adults with sleep apnea (Hi, Nana! We're looking at you!) or kiddos with other respiratory issues. The only concern with the BiPAP was the amount of air being pushed into his lungs to help him breathe would also introduce air into other parts of his body because the BiPAP is forced through the nose and not directly into the lungs. For this reason, we knew the increased air would have an impact on his stomach, causing issues with his feeds. Since he had a Nissen fundiplocation, a procedure to tighten the esophagus and decrease the amount of acid and bile coming up, he would have greater difficulty burping or getting the air out of his stomach. At that time the only options were to do oral feeds, which we knew was impossible, or switch his feeding tube to be a GJ tube. The GJ (G, gastric= stomach and J, jejunum= second part of small intestine) would be more like his ND tube (n=nasal d=duodenum, first part of small intestine) and we knew he tolerated that well. It would, however, mean another sedation and potentially some time in the PICU. 

 

First day on his home BiPAP, check out that giraffe print!

Fortunately he did okay with sedation and we were able to return to the regular floor, which is much more comfortable than the PICU. If you've ever spent any amount of time in an ICU unit, you'll know what I mean. So many rules. So many providers. So many alarms. So many really sick kids. And, the worst part for us, no bathroom in his room! I'm sort of joking, but sort of not. It sounds super ridiculous, but it's a really inconvenient part of the floor. That and no food allowed in the room, and you know I love to eat. 

This dude was so cute on Valentine's Day in the hospital. 

So, since  

...update, cont'd...

So where was I? Oh yeah. He had his g-tube placed in December of 2016.  

During the time of his g-tube placement, he had some other hiccups including oxygen desaturations while he was sleeping. We were told they were likely caused by obstructive sleep apnea (OSA). OSA causes you to have a blockage in your airway, causing pauses in your breathing, and your oxygen saturation levels decrease. Typical pulse ox should be 93-100 and Wyatt was dropping into the 70's at times. Often in kids this is because of tonsil and adenoid issues, and is typically a reason to remove them. Typically kids with OSA (and adults too!) will snore, which is a big sign that something isn't right. The only way to diagnose OSA is through a sleep study and there is only one local pediatric sleep lab, so the waitlist was long. 

 

He had numerous hospital visits because of being sick and oxygen desaturations kept occurring because homeboy couldn't breathe while sleeping. You may also be wondering why they didn't just schedule a time to remove his tonsils and adenoids, since it's typically the first line of defense. Well, that answer is two fold. First off, we didn't have a real diagnosis because we couldn't get that unless we did the sleep study (even though EVERY doctor and nurse we encountered observed the OSA events) and secondly, he's really tiny. Tiny kiddos are not good candidates for digging around in their noses and ears because they are so small. So even if we got a diagnosis, they won't consider it until he's older and bigger. Additionally, we learned from the g-tube surgery that Wyatt doesn't tolerate sedation well. It took him a full 3 days to even fully wake up and one of those days was spent intubated because he was so groggy and couldn't wake up enough to breathe on his own. So for those reasons, we continued on with using a nasal cannula giving him oxygen when he was sleeping. 

 

Dude. This kid is CUTE. 

Fast forward to February. We were supposed to be on track for the sleep study in April. Well, we got a call in early February that someone had cancelled and they asked if we could make it that evening. We jumped on it. Daddy offered to take Wyatt to his sleep study so Mommy could work the next day. During the sleep study that night, Wyatt had quite a few desats and they were monitoring his CO2 levels. Things got dicey and Brian was woken up by the staff saying they needed to call an ambulance to take him to the ER. Well, then. That's our boy for you-- dramatic. Turns out the ambulance would be taking him to Sinai, which is NOT our home hospital and would delay care by the team who knows him best. Wyatt can only receive care at Johns Hopkins due to the nature of his conditions. We have learned the hard way that taking him to a facility other than Hopkins is dangerous because they do not have access to his entire medical history and because many facilities lack the pediatric subspecialty groups he requires. 

 

... to be continued...