The buzz over the last few days has been about whether Samuel might need a tracheostomy. This is an airway surgically placed in his trachea to provide long-term ventilation. Being intubated with the endo-tracheal tube means that he must remain at least somewhat sedated and have limited holding or movement so as not to irritate or compromise his airway. That's okay for the short-term but we are at eight weeks and not ready to extubate just yet.
The ideal would be for Samuel to be extubated and function on an external course of oxygenation. Failing that, the trach would allow him to be a more normal baby while still on ventilation; we can pick him up, dress him, cuddle and bounce him, and start moving towards bringing him home. We can get on with attachment and development and, with less sedation, his brain can start recovering from the haze of narcotics and benzodiapines. As he grows, the trach may prove helpful in providing oxygenation to get Samuel through viruses and the like.
So there would be advantages but a tracheostomy is a huge step. He could have this alternate airway for a few months or a few years. A voice by-pass valve can be put in once he is older but, until then, we would still not get to hear our Samuel cry or speak. This means that he wouldn't be able to signal distress and would have to be visible to a trained, awake adult at all times. There would be major lifestyle and family adjustments and ongoing risks of his open airway.
The plan from today's meeting is that Samuel will have another couple of weeks to work on the sedation and ventilation issues and to have a trial of extubation. The specifics of this plan are being overseen by the Dr. Ferrin (who we have dubbed our Pain Guru) from APS and the intensivists from ICU. Having Dr. Ferrin on board has already shown us some progress - and we appreciated that he referred to Samuel as a "tough guy" for being able to handle all these drugs rather than noting that he's a regular junkie at this point. We will see what our little man can do with the newly planned changes. We know that the tracheostomy is an option we can deal with if it turns out to be what he needs.
The great news is that Samuel's digestive system is working well enough that he is up to full feeds via his NG tube. On Monday, they turned off the TPN and lipids infusions that have provided IV nutrition since birth. He gets to have a full belly and I get to change diapers with real baby poops. Any grief I have about not being able to breastfeed him is erased by these signs of progress. Somehow it seems normal and fabulous that he be able to get his nourishment through a tube in his nose. And without the nasty TPN in his system, Samuel finally has that amazing, intoxicating baby smell.
The move to oral medications and the end to IV nutrition has brought us from the massive IV tree down to a regular old single IV pole. The nurses stopped giving Chris test results since they realized he was obsessing about the numbers. So he started counting how many syringe pumps were in service instead. Last week there were nine pumps. Today there are three - his two med infusions plus an extra pump for when he gets his antibiotics. Small things delight us.
The blood clot continues to be monitored and the Hematologist who visited him today had no concerns. He is on antibiotics for several weeks and anti-coagulants for several months to treat the blood infection and clot. The weekly echocardiograms show that Samuel's heart is strong and getting stronger - just as my Grandma assured us last October. The cardiac pressures are lower than they anticipated they could be at a month post-surgery.
The last couple of days have been more hopeful than they were last week. I have had good talks with Samuel's doctors and many amazing nurses. I am especially grateful to Dr. Meagan who sat with me on one of the darker days last week and gave me the full benefit of her medical expertise along with her heart resonance as a mother of littles. Samuel's medical team offers me understanding of his process and validation for my experience as his mama. I am in awe of the brilliance and compassion that they bring to our baby but also to us as his family.
This is a difficult phase of recovery. The veil of expecting Samuel to die has been lifted and we are happy, relieved, and grateful beyond words. Those feelings are real but so is the pain of watching my baby struggle and the grief of each limitation. It is daunting to maintain my connection to my baby and our long days in the hospital and also my connection to the "outside world" where my family is fed and happy and my boys have school and field trips and soccer practice. I would love to have my four boys all together so I could feel overwhelmed by the task of meeting their needs in a more normal way. :) I know I need to find the balance as we have several months ahead of us before Samuel could be home and more big adjustments when that happens.
I want to say more about how the boys are doing and I keep encouraging Chris to let his experience be voiced here as well. For now, I am signing off for some rest and wine with my husband while our big boys spend the night with Nana and Boppa and our baby boy gets loved up by his wonderful nurse Joanne.
|Chris with Samuel's tidy IV pump pole - no Milrinone! no TPN or lipids! no Fentanyl! Go Samuel!|
|Aunty Cathryn came to visit and brought a Peters' burger and a gift.|
Colin sent this sweet dog to watch over our babe.
|Samuel all tucked in with his many (many!) cozy soft Nana blankets.|
|Yes, folks. That's what a baby on medazalam, methadone, morphine, ketamine and clonidine looks like. Sleep well, sweet prince.|