We’ve settled into life after surgery pretty well. Harrison is stable and healing. He gets a lot of therapies during the day and we expect that to continue once we are transferred out of the PICU onto the “floor” (still inpatient but not needing intensive care). His tracheostomy is healing well although he does have a little granulation tissue at the trach site, but the Wound Care Team is on it and giving him regular treatments. The scar on his hip & the back of his head from the fusion are healing amazingly and there have been no issues with that. His Halo vest is gnarly looking but doesn’t seem to faze him one bit. They are wanting it to stay on him for 3 months but ideally 4 months…a lot of it is dictated by what his body/skin will tolerate as time goes on, since there are 8 pins attaching the halo to his skull.
The other day we did get him out of bed with help from his PT and two nurses. It took a bit to disconnect certain tubes and wires and then you have the stuff that can’t be disconnected that you just have to work around. We sat him in his wheelchair, and it accommodated his Halo pretty well. A few minor modifications/additions will make it work nicely for the Halo and trach equipment going forward. He was able to have a change of scenery for about an hour & seemed to tolerate the change well (it even helped him move things through his stomach if you catch my meaning :p haha). We’re hoping to hold Harrison tomorrow or the day after. Right now it just seems super intimidating with all those lines/tubes/wires.
Harrison’s therapies consist of (1) Physical Therapy helping him with positioning equipment and exercises to help build his strength/flexibility now that his spine is stabilized, (2) Occupational Therapy to help with sensory integration and tone monitoring as it is starting to return, (3) Speech Therapy to continue the work of his Birth-to-Three progress of picture cards working towards eventual eye gaze communication, and (4) Music Therapy to help him manage anxiety related to being in a hospital environment and all the pokes/prods. He is really responding well and seems to especially enjoy the Speech and Music therapies. :)
We’ve met a few new specialist teams including Rehabilitation, Gastrointestinal, and Pulmonology. Since he has a tracheostomy, Pulmonology will be driving a lot of his stay here at Seattle Children’s. Right now the PICU team is the “bus driver” but that will switch over to the Pulm team when he is transferred downstairs to the trach unit. The nurse ratio will still be 2:1 which is what we’re used to in the intensive care setting. There is discussion about whether he’ll do inpatient rehab but the consensus is leaning towards a strong likelihood of it happening. This means that he would get 3-4 hours of therapy a day Monday-Friday and would rest over the weekend. His Pulm docs would still be focusing on getting him toward discharge once he’s ready and we’re all trained on the challenges of trach care at home. That’ll be combined with the recommendations of the rest of the team and will likely have to accommodate his rehab from his spinal injury, potential dental work from all the damage from his frequent vomiting these past couple years, and a probable feeding tube to better manage his caloric needs. We’ll have a better idea of what his plan will be in a few days when we have our Care Conference, which brings together all of the specialists and therapists in one room to hammer out a game plan for next steps.
Finally, we met with the Trach nurses to begin the oppressive amount of training we’ll need to go through to manage his airways at home. It is daunting to say the least. We’re trying to take it one step at a time - so thankful they're such pros and know how to dole out the information so that it isn’t *too* overwhelming. We’ll have a LOT of equipment and we’ll need to have eyes on Harrison 24/7 once we go home to ensure any issues are responded to quickly. We should be getting home nursing care for 16 hrs./day, but the challenge will be finding enough LPNs/RNs who can take the shifts. Getting some help will definitely make this journey a little bit more manageable for us. We’re praying that everything will fall into place and that the right people will say “yes” when the time comes.
The weekend has been all about the PICU team working with the Pulmonary team to begin weaning Harrison off the ICU vent, which is way more sensitive than the home ventilators that are used on the floor. As part of this process, Harrison has to demonstrate that he’ll initiate breaths for x-amount of times in a certain time frame, maintain good oxygenation, and tolerate the decreased pulmonary support. So far, he’s doing amazing - even better than anyone was expecting - and because he's responded quickly, is almost to the goal settings for a safe transfer. Yay Harrison!
Life in a hospital is interesting - it's uncomfortable, revealing, stressful, and just plain exhausting. However, it has those special moments when you connect with another family going through the struggles as well. The moments when you hear another child giggle or coo in contentment, when you connect with your nurse at such a deep level that you form tears as you realize this will likely be their last shift with you, when you learn important life lessons about faith and perseverance by watching your child fight to endure monumental obstacles. MariClaire and I have also supported one another in amazing ways and we've relied on what drew us together in the first place...love. We've had some pretty dark moments these past three weeks, but have also found some great opportunities to laugh as well.
Finally, we wanted to thank you all again for all the continued support and prayers. This journey was only possible because of our amazing community. We are very blessed and fortunate to know such amazing people near and far! We are also amazed by the professionalism and level of care we’ve received at Seattle Children’s Hospital. The PICU team came into the room today during Rounds just so they could talk to Harrison and make him smile his cheesy grin. We’ve had a revolving door of nurses, therapists, and doctors checking on him even when it wasn’t really an “official visit” and he has been nicknamed “Super Harrison!” by his favorite nurse. After what we’ve witnessed, we wholeheartedly agree! :-)
- Jonathan & MariClaire
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