Savanna is three days post-op since her second resection for epilepsy. It is too early to tell about her seizure activity, but we see activity that is very concerning from our perspective. We have been told to give it another 3-4 weeks before sounding the alarm.
Savanna is moving around now, and her demeanor is dominated by discomfort and irritation versus acute pain and rage. This is good.
Still in the hospital, here we sit. Like waiting in the in the airport terminal and the boarding status just keeps getting delayed. Then delayed again. Then delayed again. Ugh! The reasons to continue to keep Savanna in the hospital seem convoluted and mired in bureaucracy. We know our daughter. We understand their genuine concern. But life in the PICU for someone like Savanna (and her family) is corrosive. She is ready to go play, roll around, and be a slightly-delayed toddler. The PICU was supposed to be a pitstop for her for the first 12 hours and then she was to be moved on to a more outpatient facility for monitoring and released 12-24 hours later. What a disaster ensued when we were admitted.
The unexpected respiratory situation confined Savanna to the PICU for 3 days, tipping the balance of the our emotions resulting in a more combative relationship with the staff than one that needed to be harmonious. She was having problems I admit, but looking back, the initial 12 hours of care should have been in the PICU and then Savanna should have been moved to the general floor for care. Maybe some of the nurses/doctors out there who follow this blog can elaborate on what I am saying. Or, maybe I am off base too, and by all means let me have it. Comments are not moderated. But, the PICU staff is used to seeing a certain type of clientele. Being the #1 trauma facility in the region, most patients here are completely different than Savanna (and so are the parents). By day 2 in the PICU, we had scuffled with 3 doctors and 2 nurses. Looking back, I am not sure why it took 2 whole days to get in that much trouble – it could have been accomplished in less time.
The doctor overall in charge (the neurosurgeon) had been called twice in the middle of the night during the first two days too. These unfortunate actions create an environment of ‘us against them’. The heat from the friction generated at times is tremendous. And the sad part is that it didn’t have to be that way. The thought that any one person knows 100% of what a baby like Savanna needs is naive. I say that without callus and arrogance, but rather a humble realization that the above statement includes me (the parent) too. Near the end our crime and punishment in the PICU, I asked the neurosurgeon, “What is required for Savanna to be discharged?” He replied simply “Breathe, Eat, Poop.” He elaborated, but I thought it was a great title for a blog post.
I was ready to take Savanna home now, but I also knew a brief stay in the EMU was more or less required. I tried to wiggle out of it, but the sentence was handed down and time served was not enough punishment. Savanna’s journey continued in the EMU. Luckily, the EMU is like ‘Celebrity Hospital for the Rich and Famous’ when you are there for observation without EEG equipment installed. It can be a desolate place too with little to no activity at night – very unlike the PICU. What is odd though, is just when you think it is safe to pick you nose, you realize you are being watched through the video system. You are reminded by the sound of the discretely placed camera panning and zooming under remote control of the EMU nurses. Haha.
No it is not a call for us as parents to take a deep breath, as though the person holding us underwater decided to let go and allow us to surface. Savanna has to maintain Oxygen saturation level of at least 90% on her own. Savanna is still struggling somewhat with stridor, which is due to the swelling in her upper airway. This is a potential result of being intubated for nearly 12 hours. It is not permanent, and will take some time to dissipate. It has to be remedied or markedly improved for discharge. As of now, the ENT doctor and neurosurgeon are happy with how she is breathing and feel this is not holding her back from moving forward. We checked this box.
So, with her right vocal chord not closing all the way, there exists significant risk of aspiration if she were to spit up or vomit. It presents a delicate situation with respect to feeding her given the nausea from the pain medications and anesthesia. If she is enraged and hyperactive due to pain, she could aspirate while feeding. If she is sedated too much, she could aspirate while feeding. Dilemma. The neurosurgeon does not want her sedated post-operative as it could mask presentation and symptoms of complications. But, if she can’t be safe in a crib that looks more like a cage more than a place to sleep, what is the point. His answer is just to try to console her and redirect her pain with magic. We need her to be manageable and not in so much pain. We have four children, I can’t just sit with her for hours at time and try to keep her from being in pain with a little tylenol. There should be some common ground here, and I feel like I am being fought tooth and nail about keeping my daughter healthy while not in a lot of discomfort. And, the weird thing as this was not the case at all after the first surgery. Maybe I am missing something as ‘just the parent’. I don’t feel like an irresponsible parent, though there is some innuendo in the conversations with the different doctors. I have to say it is not appreciated after all we have been through with Savanna.
How does this rant apply to feeding? Okay, so if she really is in pain, it is really difficult to feed her. Bolus feeding is difficult to impossible as well. She has a G-tube, why can’t we just use that you might ask? Savanna does have a peg style g-tube, but not a fundo. So she can still eat normally as the stomach doesn’t have a ‘reverse flow’ limiter – if you will. So even bolus feeds are in question now, which I think is reaching too far in maintain Savanna’s admission. Even during Savanna’s most difficult times, sedated far more than now, she never had a problem with reflux with bolus feeds. But my historical experience as a parent is being ignored for the most part. I know why, but it is still frustrating, especially when I am right.
So, I still have a speech therapist consult scheduled tomorrow to prove I can feed my child safely. Amazing. An empty box that I have to get checked.
I wore my lucky ‘poop’ shirt to the hospital and Savanna had an extra dose of miralax this morning. This box is checked, a couple of times over I might add.
Breathe, eat, poop. Breathe, eat, poop. Kind of sounds like a meditation phrase. Let’s go Savanna, find your happy place!
Please know I am praying as hard as I can. Love being sent to Savanna and you and Rebecca.
Ken, just wanted you and Rebecca to know I’m thinking and praying for your whole family–just as much for you and Rebecca,– as I cannot imagine how difficult this must be for you all. Do hope you have Our Lady of The Miraculous Medal with Savanna. Our Mother is a Mother and holds our little ones close. I want you to know how much I enjoy your posts, — your self-deprecating humor makes me smile. From one who has spent way more time in hospitals than she cares to discuss or remember-you all have my complete understanding, and my anger. Be well, hug Beck for me, and hope to see you all, well, in Louisville. Take heart, and God bless.
Anne (Lepping) Burnstein
Sent from my iPad
She is strong little girl!!! We know you will be home sooner then you expect…and the next chapter begins. We love you all and continue to pray!!
Dear Ken & Rebecca,
Candice updates me frequently on Savanna, and you are constantly in our thoughts and prayers. We’ve put in prayer requests at church for you and have shared your challenges with friends and acquaintances. I just wanted to share that while your family is out of sight your are never out of mind. We hope Savanna’s health improves, and our continue to have the strength you’ve shown us all for so long now.
Robert & Candice London
Thanks so much for responding. I will add your email to the the list, so you can get the updates first hand. I really appreciate you sharing Savanna’s journey with others and your Church. She is doing much better now at about 10 days post-op from her second surgery. Still seems to be in some pain, but she is teething too. It is never easy with her….
Irma was out here recently (Jan), and we had a great visit. She said she is have a lot of fun with your kiddos.
Give Jackson a big hug from Tristan.
Still praying from Washington state! You guys are so strong, I hope that you will be released home soon to allow your sweet little Savanna to recover in a comfortable place. Hospitals are no fun for anyone. I have been thinking of you all often these past few days and will continue praying that she recovers well and that the docs give you the thumbs up to leave!
The Barnes Family