May 7 am
Up and at 'em, we arrive at the hospital for Cash' surgery at 6:15am. Surgery is scheduled for 7:30am. After some delays, we finally get into the pre-op room around 9:45am. Cash is in good spirits, but starving and thirsty since his last meal allowed was at 10:30pm the previous night. Nurses begin prepping Cash, I cry like a baby, yada yada yada. Dr. Whitehead tells us the risks, expects an hour so for the surgery and explains what he is doing. Off Cash goes.
Here are the basics: There are 4 ventricles(V) in your brain, they are each filled with spinal fluid. Ventricle 1 is fine and always has been. V2 enlarged to a 3, on a scale from 1-4, 4 being worst. It stopped expanding on its own. V3 got to a 4 and would have continued expanding, hence the shunt. V4 was a slight concern when Cash was in the NICU, but the doc was hoping it would stop growing, it didn't. Pressure was building over the 2 1/2 weeks since leaving the hospital causing the increased size in Cash head that the pediatrician measured. As an aside, Kimberley noticed the fontanelle(the soft spot) had gotten a bit firmer our first day home, we went to pediatrician and she said it was fine. Looking back, Kim was right.
So Cash' production of spinal fluid in his 4th V was not stopping, putting pressure on the brain and risking further brain damage, requiring this surgery. There is a membrane that seperates each ventricle, making each V its own little balloon. Dr. Whitehead, in order to avoid needing an additional shunt, decided to pierce the membrane between the 4th and 3rd V, allowing the spinal fluid to flow between the two ventricles, and draining out the shunt.
11:30am, the nurse comes to update us that Cash was out of surgery and doing well and already back on the nasal canula. Since he was put under, he was intubated, which scared us as to how long it would take to progress back to where we were. I know its weird to those who haven't experienced this, but the little victories are huge, its what keeps us going. So we are very happy and cannot wait to see Cash. About noon we get to see our little miracle.
May 7 pm
12:10pm - So we roll into the post-op room, which if you have never seen it, sucks. Poor kids are all lined out after surgery. Moaning and crying are heard all around. Many parents sitting next to their children of all ages feeling hopeless, happy, sad and mad. Its a surreal experience. I pray I never have to go back. So in the farthest corner from the door, lays my little bundle of joy, stoned out of his mind. After passing all the other patients I am pretty depressed, but as soon as Cash hears his mommy and daddy's voice he perks up! His beautiful blue eyes open up and they still have that spark we all love to see in our kiddos. He's tired, but he is ok. Thank you Doctor Whitehead for keeping my little boy safe! The doc doesnt anticipate there was any additional brain damage from the 4th V swelling, we caught it in time. The nurses and doctors all say he was great and never cried. The surgery was succesful and easy, although he did say he went ahead and replaced the shunt catheter as it was developing some scar tissue that could have made it malfunction. They do ask for a precautionary CT to double check a couple things. We do it, and he passes with flying colors. Here is what the CT scan process looks like. Terrible to see your baby going through this, but its still a marvel of science.
1:30 pm - We check into our room. Cash is looking good, Kim and I are exhausted. I stick around til 4pm before getting Kim some overnight food and bev. I kiss them both goodbye as I rush home to be with Savy and give her the good news about Cash' surgery. By the way, my father-in-law Pat came this whole week to help with Savy, getting her to and from school when needed, thank you Pat!
8pm - Good night Savy, good night world. This was a long day.
May 8/9 - Kim stayed with Cash the whole time, changing his diaper, feeding him and loving on him all day and night. This was a big task, and I applaud her for her strength. I know it was long, lonely and sleep deprived. The stay was mostly typical, nurses in and out, drab colors and lots of poking and prodding for Cash. I came and went to give Savy some stability, bring in fresh food and drinks for Kim and grab stuff from home Kim needed. I also got our handicap parking sign which will give us much needed room to load and unload all things Cash. I promise not to use it unless he's in the car with me, or I'm in a rush. Relax, its only good til November.
There is one story I will relay, and it has to do with parents/family always know the patient better than the docs. Its also a challenge to any of you who will deal with docs in the future. Here goes...
On Tuesday, I arrived to see Cash was still on 1/2 liter of O2. We had expected this to be at 1/4 by now, same as home. The pulminologist won't let Cash go home til he is on 1/4 liter, so this was a big deal. So I discussed this with Kimberley, and watched him closely as I listened. She was going on and on about the nurse interruptions every 3 hours or more, docs parading in and out and the beeps of all the machines preventing quality rest. So I just asked myself, "Self, how miserable would you be recovering from brain surgery, not getting good sleep, and having all these wires and tubes everywhere with beeps going at all times?" The answer was simple, end it all. So first I call the nurse, tell her my plan and send her on her way to make it happen. Here is what I did...
1) Put sign on door that noone enters without nurse approval.
2) On sign say, "When you enter, be quiet and dont turn on lights unless necessary"
3) Get the pulminary team in here asap
4) Take off as many wires as possible
5) Mute that damn monitor and
6) If he is eating well, remove the electrolytes so he has one less tube.
7) Replace the canula, and put it on CORRECTLY!!!
The sign was done in 5 minutes. 5 wires removed and 1 tube were taken off within an hour with doctor approval; I was able to get them to use the pulse oxymeter to monitor his HR and O2, which he still had on and was used to. Duh. That got rid of the monitor as well, and the electrolytes were 86'd as well. The nurse helped us correct the canula placement as well. Poof, he fell straight to sleep, and Kim's nerves were calming down. Within 15 minutes Kim was sleeping.
Now the pulminary team. I see them looking through his window, staring at reports etc on the computer, so I go meet them in the hall. Here is what I said. "Who is in charge here? (They all pointed to 1 guy) "Alright man, reports aint gonna get you the answer, you gotta come watch him. You can stare at that screen all day, and nothing is going to change. Common sense is what we need here, now follow me." They all kinda looked perplexed, but they agreed to follow me in to see Cash. "First, I just had a bunch of wires removed that yall had on him, all adult sized btw; now he is sleeping and his O2 levels are at a 100. Isn't 97 the ideal rate? Ive been told 100 is too high." The lead doc says, "The extra O2 isn't going to hurt him." I reply, "Except you won't give us the go-ahead to discharge if he isn't on 1/4 or less, right?" "Yes", he says. "So my plan is to get him home, so follow me on this. If you will turn his O2 down to 1/4 liter, I bet he does great, especially now that I've made him comfortable."
At this point, the team all decide its ok. Kim and I are praying I am right. Show em what you can do, my little beast, one more time. One of the docs watches him sleep while the other 3 and myself talk about his recovery etc etc. The one watching is occasionally saying his saturation rates out loud. "98, 97, 99, 97, 98..." Meanwhile I keep talking about how uncomfortable he was, and that I think we would be checking out already if they had stopped looking at the computer and spent more time with the patient. A few minutes goes by then my worst fear; beep beep beep. The main doc looks at me and says, "Oh, thats not good, he may need a bit more O2 a little longer." Then the doc who was watching Cash says, "Actually, the canula came out of his nose a minute ago, and I was just watching to see how well he would do without it."
Booyah!! Bite me old man, my boy just sucker punched you! The canula slipped back in place and he continues at the 96-98 rate. To sum it up, they agreed to leave him at 1/4, but we must stay one more night.
So Kim and Cash are sleeping soundly and so I don't wake them up while eating my kettle cooked N'awlins Crawtators potato chips I step outside in the hall just as the pulminary team was leaving and heard the following exchange. "That dad was a hoot, huh?" says one of the team to the main doc, "Yes, but he was right" says the doc.
I tell you this story in detail, mainly because it is sometimes necessary to speak your mind to the docs. They are not God, no matter how much they may think so. You have to stand up and be loud, but you better have your facts straight. Noone will ever know or care for your children like you do; sometimes you have to prove it.
May 9 - We got discharged. Coming home was sweet.
May 13 - Cash is happy!
