So it goes without saying that we want to get rid of the O2. The cumbersome cords for the pusle oximeter, air tube and tank slow us down, irritate him and prevent easy travel. That being said, its tough for us hypersensitive parents to break the chain.
Cash is constantly pulling on the nasal canula, rubbing his nose and getting ticked off by the uncomfortableness of it all. I couldn't imagine. On the flip side, Kim, Savy and I are always worried about the tube getting pinched, the pusle ox having power, the tank leaking or falling etc... Its a pain in the rumpus!
We are trying to keep the O2 off Cash as much as possible, without tiring him out. Usually thats about 5 hrs a day. Sometimes when we dont have OT or PT we can pull off 8 hrs. We really need to get him to a full day before July 5, our next OCRG test, but thats probably not gonna happen. It is what it is.
To give you an idea, think about how much it takes to move a newborn; all the stuff you gotta load up in the car. All the prep thats needed and checklists to run through for a "normal" kid grows by 50%.
So you got the usual stuff; baby bag and all the stuff in it, strollers, car seats, toys, pacifier etc. Then add to that an air tank, a pulse oximeter, the cords for both, a tank carrier, placement of it all, proper placement of the nasal canula, tape for the nasal canula, the air tank key and make sure there's enough O2 in the tank to last the entire trip. Then while traveling, hearing the monitor beeping will drive ya nuts! Like I said, a real pain. I couldn't imagine those who must do more than us, with wheelchairs etc.
God bless them all.
My youngest brother is getting hitched next weekend, and we are making the trip down to the ceremony, but Kim and the kids are coming back immediately afterwards strictly due to the O2 and pulse ox monitor. The monitor beeps everytime he yawns, needs to burp, passes gas or the sensor is hardly touched. This amount of beeps would drive a hotel guest crazy, and since the volume cannot be lowered, it would keep not just us up all night, but our hotel neighbors as well. So it goes, just gotta cope.
My point is not to whine about the situation, but to explain why we gotta get him off this O2 assistance. As soon as we do, we are gonna start making some road trips. I'm seeing a tank free Cashmonster in Austin, eating at a taco trailer and walking south Congress. Maybe taking a train ride at Zilker. Going to the Houston zoo or seeing the coast for the first time. I cannot wait to explore the world with him, introducing him to more than just a doctors office, hospital or our living room.
The time will come when we can sleep all night, wake up refreshed and ready to take on his other challenges without being exhausted from the rough nights sleep before. The time will come when we can have someone watch him and not be scared by seeing the extra baggage he comes with. The time will come. Patience. Breathe.
I slept for shit last night. Ha!
On the bright side, Cash loves to play. His nurse Ms. Rhonda has taught him to play peek a boo. Here is a quick clip of him being a ham.
Friday, June 22, 2012
Wednesday, June 13, 2012
Let The Love Flow
Well I'm happy to report that the family is finally getting into a stable routine, much happier and learning how best to cope with the challenges ahead! This post will all be rainbows and butterflies. Thank God!
So since my last post we have had 3 doctor, 6 therapy and 2 eval appointments for Cash. In total, starting next week we will have 16 therapy and 3 doc appointments scheduled each month for at least 2 years, which is more than a part time job by itself. Thankfully we have the greatest nurse to help me, and its summer for Savy allowing for more flexibility.
The oxygen situation has improved tremendously, and after our next test on July 5th, I'd be surprised if he's still needing it, at least not more than an as needed basis.
Cash is such a strong little boy. He goes through therapy fighting the whole way. Its humbling to say the least. So much character in such a little man. His smile is beautiful, and he is starting to gigle a little bit. Oh, and he gives us kisses. The sloppiest, wettest goodness anyone could wish for! I admit, I cried like a 5 yr old little girl the first time he did it. There was a time I wasn't sure I'd ever get it.
Regarding the therapy, I must give a huge thank you to our friend Brenda Hudson for getting it going for us. She took him on as her PT patient then got us our OT as well! She is a big part in all the little victories we have experienced recently. Thank you Brenda!!
Lets do a recap of our Victory list shall we...
Much improved head control
Eats like a champ, up to 6 oz now
Starting on cereal
Found his hands
Better eye tracking
Smiles galore
Ending 2 meds next week
Discovering his personality
Knows his mommy, daddy and big sisters voices
Smiles more with Savy than anyone
Rarely spits up
Lung strength is way up
Can turn his head when on his stomach, when he gets pissed, not all the time, but still much better
Sleeps 10+ hrs each night with one feed usually around 3-4am
Loves mobiles
Holds and shakes his rattle when interested
One other thing, my boy is handsome. Seriously, this kids eyes are more blue than the Carribean. He has slightly wavy dirty blonde hair. A nicely shaped nose and perfect puffy lips. I'm proud. What can I say?!
He loves to be read to, but you better make sure he can see the pictures. He is as strong as an ox. I aint kidding, this kid can almost do pullups!! In a month or two, with all this working out he's getting even stronger.
Momma is fully back to work, and I'm, well, busy. I do wish I had been able to keep the online store we purchased for me to work from home, but as Cash' appointments piled up and some other circumstances arose we sold it. In due time I will be working as Franek Consultings meeting planner, marketing/sales. Hopefully that will happen by the spring.
Savy is at camp, and each day I get the mail hoping for a letter, but no go so far. I sure do miss her, but I'm guessing she's having the time of her life. No time for dear old dad.
Last but not least, we have not forgotten the other babies in the NICU, as well as their parents; hope to start working on our foundation soon.
Thats it folks. Told ya nothing but rabbit farts and fairy burps this go round. Its all good at mi casa.
Oh, and I'm joining the church choir in August. Time to give back.
Peace out yall!
So since my last post we have had 3 doctor, 6 therapy and 2 eval appointments for Cash. In total, starting next week we will have 16 therapy and 3 doc appointments scheduled each month for at least 2 years, which is more than a part time job by itself. Thankfully we have the greatest nurse to help me, and its summer for Savy allowing for more flexibility.
The oxygen situation has improved tremendously, and after our next test on July 5th, I'd be surprised if he's still needing it, at least not more than an as needed basis.
Cash is such a strong little boy. He goes through therapy fighting the whole way. Its humbling to say the least. So much character in such a little man. His smile is beautiful, and he is starting to gigle a little bit. Oh, and he gives us kisses. The sloppiest, wettest goodness anyone could wish for! I admit, I cried like a 5 yr old little girl the first time he did it. There was a time I wasn't sure I'd ever get it.
Regarding the therapy, I must give a huge thank you to our friend Brenda Hudson for getting it going for us. She took him on as her PT patient then got us our OT as well! She is a big part in all the little victories we have experienced recently. Thank you Brenda!!
Lets do a recap of our Victory list shall we...
Much improved head control
Eats like a champ, up to 6 oz now
Starting on cereal
Found his hands
Better eye tracking
Smiles galore
Ending 2 meds next week
Discovering his personality
Knows his mommy, daddy and big sisters voices
Smiles more with Savy than anyone
Rarely spits up
Lung strength is way up
Can turn his head when on his stomach, when he gets pissed, not all the time, but still much better
Sleeps 10+ hrs each night with one feed usually around 3-4am
Loves mobiles
Holds and shakes his rattle when interested
One other thing, my boy is handsome. Seriously, this kids eyes are more blue than the Carribean. He has slightly wavy dirty blonde hair. A nicely shaped nose and perfect puffy lips. I'm proud. What can I say?!
He loves to be read to, but you better make sure he can see the pictures. He is as strong as an ox. I aint kidding, this kid can almost do pullups!! In a month or two, with all this working out he's getting even stronger.
Momma is fully back to work, and I'm, well, busy. I do wish I had been able to keep the online store we purchased for me to work from home, but as Cash' appointments piled up and some other circumstances arose we sold it. In due time I will be working as Franek Consultings meeting planner, marketing/sales. Hopefully that will happen by the spring.
Savy is at camp, and each day I get the mail hoping for a letter, but no go so far. I sure do miss her, but I'm guessing she's having the time of her life. No time for dear old dad.
Last but not least, we have not forgotten the other babies in the NICU, as well as their parents; hope to start working on our foundation soon.
Thats it folks. Told ya nothing but rabbit farts and fairy burps this go round. Its all good at mi casa.
Oh, and I'm joining the church choir in August. Time to give back.
Peace out yall!
Wednesday, May 16, 2012
Post-Op Update
So I ended my last post with all things pre-op. Today will be during and after our last surgery, which took place May 7th 2012.
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!
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!
Tuesday, May 8, 2012
One Word: Emotional
THIS ENTRY WAS WRITTEN OVER A MONTHS TIME.
April 21
Since we got home nearly 2 weeks ago the roller coaster of emotions hasn't stopped. The high we were on getting him home lasted the first two days, then the reality set in on all things baby. Been a while since we've done this, and getting into the rhythm has taken me longer than Kim. Thankfully she took on the challenge successfully and without frustration so I could follow her lead.
Cash has been great, he even slept a solid 4+ hours night one. We are up to 5 hours now, so we only need to get up once per night for a feed. He has done very well with his feeds which were a big concern at TCH. He's taking about 4oz 6-7 feeds a day. 12.6 lbs!!! Gettin' big for sure. We visited the pediatrician twice and neuro doc once. Pulminologist in 2 weeks. Working on PT and hopefully an in home nurse a couple times a week. Probably the most difficult thing is to manage the o2. The tank and monitor with hose and wire are cumbersome to say the least. Basically, we are trapped in a 20 ft area all day, unless we hook up a smaller tank, unplug the monitor from wall and load everything into the stroller. Carrying Cash from room to room is impossible. This makes for a pretty unproductive day.
May 2
Now close to a month home, we have settled into a good routine. Cash sleeps well at night and Kim and I are swapping nights to get up and feed him around 2:30am. Savy isn't holding up as well. Her school work has suffered a bit, and attitude has been abundant. We are trying to consider her feelings when we reprimand her but that is sometimes hard to do. Nothing huge, just a bunch of little stuff that's adding up. For the most part, we think Savy has handled Cash coming home pretty well. Its a huge change for any kid who has a new baby in the house, but after 6 months of hospital stress, I think its a little harder on Savy. We never got the big happy coming home most families enjoy, and by the time we did get Cash home we were all so relieved and exhausted that we just tried to sleep through it.
Well crap, the monster is at it again; gotta get him settled down. Til next time...
May 3
Pediatrician apptmnt, 10:30; In-Home nursing admit 12. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 3 evening
Well shit, the doctor measured Cash' head and its grown nearly 2 inches in less than a month. This is definitely not good. Called Neuro for update and advice and they scheduled us to come in tomorrow at 2. I have a feeling we will be back in the hospital soon. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 4 morning
Kim and I took Cashmonster to his doc apptmnt. These tanks and monitors are brutal to move around. When we were in the room waiting for the doc Kim looked at me and said thank you. She realized how hard it is for me when I am doing all this alone. The nurses don't have much compassion for the logistical nightmare it is to weigh Cash without his clothes on so they can get an accurate reading. Deduct 4oz for the onesie, and we will call it even, jeesh!
We are keeping a good face, but we know the 2pm apptmnt is a big hurdle for us. Cash seems to be a bit more cranky, and we are noticing his eating is suffering. The unknown is scary.
May 4 evening
Just as we thought, the 4th ventricle is swelling considerably. After a CT scan its confirmed, we will have surgery first thing Monday morning. He will be admitted for 3 days. Just got a call from school, Savy has a fever. My brother Louis is picking Savy up and taking her to doc for script and watching her til we get home. I love my brother, he has been a great listener and a reliable assistant through all this. I owe him.
Questions I am asking...
When will we ever get to be "normal"? Why is it that every time there is a "chance" of a problem, it comes to fruition? When will Cash ever get a break? How will K and I cope with this? Will Savy be ok knowing her brother is going into surgery, again, while she is at school? How many more times will I be told by Savys teachers, school parents, peers etc that she broke down crying at lunch, during a test or got mad at something small? Will she run and play at recess or will she sit by herself, again? Do we need counseling?
Can we just sleep through this? Will Cash' strength fail him? Whats the % of error in brain surgery, and do three of them start testing our luck? Who will watch Savy during these three days? Will Kims clients understand? What if we lose another client, will we be able to pay our bills? Can we afford to keep Savy at private school? Will our financial aid request for Savy school be denied, then what? Should Kim be going out of town? Should I cancel my brothers bachelor party trip? Will the in-home nurse do everything right?
Will Cash' head ever get to a normal size? Can Kimberley maintain her workload? Will the maid change her schedule this week? Will we qualify again for medicaid? When will our insurance stop paying? Does Cash' head hurt him? Will he get an infection? How many times do we have to do this? Will I ever get to be alone with Kim again? How can I help Kim and lighten her load? Does Savy feel left out, and how much of this does she really understand? How much of this do I understand?
May 5
Cinco De Marco party. Attended, but wasn't really there. Glad to see all the neighbors, most of whom have been helpful and thoughtful. Peace out, I'm going to bed.
April 21
Since we got home nearly 2 weeks ago the roller coaster of emotions hasn't stopped. The high we were on getting him home lasted the first two days, then the reality set in on all things baby. Been a while since we've done this, and getting into the rhythm has taken me longer than Kim. Thankfully she took on the challenge successfully and without frustration so I could follow her lead.
Cash has been great, he even slept a solid 4+ hours night one. We are up to 5 hours now, so we only need to get up once per night for a feed. He has done very well with his feeds which were a big concern at TCH. He's taking about 4oz 6-7 feeds a day. 12.6 lbs!!! Gettin' big for sure. We visited the pediatrician twice and neuro doc once. Pulminologist in 2 weeks. Working on PT and hopefully an in home nurse a couple times a week. Probably the most difficult thing is to manage the o2. The tank and monitor with hose and wire are cumbersome to say the least. Basically, we are trapped in a 20 ft area all day, unless we hook up a smaller tank, unplug the monitor from wall and load everything into the stroller. Carrying Cash from room to room is impossible. This makes for a pretty unproductive day.
May 2
Now close to a month home, we have settled into a good routine. Cash sleeps well at night and Kim and I are swapping nights to get up and feed him around 2:30am. Savy isn't holding up as well. Her school work has suffered a bit, and attitude has been abundant. We are trying to consider her feelings when we reprimand her but that is sometimes hard to do. Nothing huge, just a bunch of little stuff that's adding up. For the most part, we think Savy has handled Cash coming home pretty well. Its a huge change for any kid who has a new baby in the house, but after 6 months of hospital stress, I think its a little harder on Savy. We never got the big happy coming home most families enjoy, and by the time we did get Cash home we were all so relieved and exhausted that we just tried to sleep through it.
Well crap, the monster is at it again; gotta get him settled down. Til next time...
May 3
Pediatrician apptmnt, 10:30; In-Home nursing admit 12. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 3 evening
Well shit, the doctor measured Cash' head and its grown nearly 2 inches in less than a month. This is definitely not good. Called Neuro for update and advice and they scheduled us to come in tomorrow at 2. I have a feeling we will be back in the hospital soon. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 4 morning
Kim and I took Cashmonster to his doc apptmnt. These tanks and monitors are brutal to move around. When we were in the room waiting for the doc Kim looked at me and said thank you. She realized how hard it is for me when I am doing all this alone. The nurses don't have much compassion for the logistical nightmare it is to weigh Cash without his clothes on so they can get an accurate reading. Deduct 4oz for the onesie, and we will call it even, jeesh!
We are keeping a good face, but we know the 2pm apptmnt is a big hurdle for us. Cash seems to be a bit more cranky, and we are noticing his eating is suffering. The unknown is scary.
May 4 evening
Just as we thought, the 4th ventricle is swelling considerably. After a CT scan its confirmed, we will have surgery first thing Monday morning. He will be admitted for 3 days. Just got a call from school, Savy has a fever. My brother Louis is picking Savy up and taking her to doc for script and watching her til we get home. I love my brother, he has been a great listener and a reliable assistant through all this. I owe him.
Questions I am asking...
When will we ever get to be "normal"? Why is it that every time there is a "chance" of a problem, it comes to fruition? When will Cash ever get a break? How will K and I cope with this? Will Savy be ok knowing her brother is going into surgery, again, while she is at school? How many more times will I be told by Savys teachers, school parents, peers etc that she broke down crying at lunch, during a test or got mad at something small? Will she run and play at recess or will she sit by herself, again? Do we need counseling?
Can we just sleep through this? Will Cash' strength fail him? Whats the % of error in brain surgery, and do three of them start testing our luck? Who will watch Savy during these three days? Will Kims clients understand? What if we lose another client, will we be able to pay our bills? Can we afford to keep Savy at private school? Will our financial aid request for Savy school be denied, then what? Should Kim be going out of town? Should I cancel my brothers bachelor party trip? Will the in-home nurse do everything right?
Will Cash' head ever get to a normal size? Can Kimberley maintain her workload? Will the maid change her schedule this week? Will we qualify again for medicaid? When will our insurance stop paying? Does Cash' head hurt him? Will he get an infection? How many times do we have to do this? Will I ever get to be alone with Kim again? How can I help Kim and lighten her load? Does Savy feel left out, and how much of this does she really understand? How much of this do I understand?
May 5
Cinco De Marco party. Attended, but wasn't really there. Glad to see all the neighbors, most of whom have been helpful and thoughtful. Peace out, I'm going to bed.
Tuesday, April 10, 2012
Home Sweet Home!
We were discharged at 2pm today by Dr. Jen Arnold(yes, that doc) and after the nurse provided more explanation than the biggest idiot on the planet would need, we were off. The drive was uneventful, Kim sat in the back and smiled the whole way home. Savy was super excited to see her little bro, and Cash has slept and ate, and slept again. Thank you all for the kind words, we are so lucky to have so many thoughtful friends and family in our lives. So, as a thank you, here are some pics of our day!
Dr. Arnold and staff
Last nurse feed
Rock and Roll Baby!
What is taking so long? I'm getting bored!
'Nuff said
After an hour long car ride, this is what I chose to do.
This is why I'm hot...
Sunday, April 8, 2012
So You're Sayin' There's A Chance...
Last week I hinted at the possible arrival of our son Cash, coming home to his family after a 5 and a half month fight. The opportunity was first mentioned last Wednesday, but over the last couple days it has become a reality. We are scheduled for discharge this Tuesday, April 10th, 2012.
God has truly worked miracles in all of us lately. He has managed to provide the strength Kimberley and I have needed to survive the most stressful months we have ever experienced, and he has been preparing us for the trials ahead. He has given Savanah an unbelievable amount of good charm, willingness to follow her parents lead and a solid foundation to rely on him for answers none of us can explain. I thank him everyday for giving Kim and I the forseight to nurture and encourage her faith well before Cash's struggle.
Last but not least, Cash has been so strong; he is eating more than ever, healthier than we could have wished and such a good natured little soul. He is so peaceful, and we get comments about his demeanor often from the TCH staff. Rarely does he cry, and almost certainly it is for something specific, usually for just a few seconds. He smiles exactly when we need it, while holding our fingers with a grip tighter than I have ever felt. His little lungs are getting better every day, and finally the staff at TCH has recognized all of this, giving us the greatest news we could wish for. The chance to go home.
Kimberley and I have managed to make 2-3 feeds a day for the last week, upping his avg intake and getting us the sign off from his doctors that he is meeting his requirements. His o2 is almost at an 1/8th of a liter, nearly room air; allowing the doctors to feels comfortable he will flourish in his new environment, home.
Our race is not over, but we feel so blessed to have finally gotten to this point. What an amazing Easter this has been, one with a sense of promise and hope like we have never experienced before.
Pending a change in our schedule, I will update the blog with my sons coming home on Tuesday. We can hardly wait the remaining 48 hours, we are so excited and grateful.
Thanks again for all your prayers, and Happy Easter!
God Bless!
Visitation: Kimberley and I would like to ask our friends and family, as much as you all want to meet our new arrival, to allow some time to get adjusted, and him the opportunity to get stronger to resist any infection or bacteria that may hinder his continued recovery. We have been told to avoid exposing him to folks outside of the home for a minimum of 30 days, and no groups for 60. Please understand, and forgive us when we pass on your holiday events, parties and requests to visit. We will definitely let you know when we are all ready to show off our little man!
God has truly worked miracles in all of us lately. He has managed to provide the strength Kimberley and I have needed to survive the most stressful months we have ever experienced, and he has been preparing us for the trials ahead. He has given Savanah an unbelievable amount of good charm, willingness to follow her parents lead and a solid foundation to rely on him for answers none of us can explain. I thank him everyday for giving Kim and I the forseight to nurture and encourage her faith well before Cash's struggle.
Last but not least, Cash has been so strong; he is eating more than ever, healthier than we could have wished and such a good natured little soul. He is so peaceful, and we get comments about his demeanor often from the TCH staff. Rarely does he cry, and almost certainly it is for something specific, usually for just a few seconds. He smiles exactly when we need it, while holding our fingers with a grip tighter than I have ever felt. His little lungs are getting better every day, and finally the staff at TCH has recognized all of this, giving us the greatest news we could wish for. The chance to go home.
Kimberley and I have managed to make 2-3 feeds a day for the last week, upping his avg intake and getting us the sign off from his doctors that he is meeting his requirements. His o2 is almost at an 1/8th of a liter, nearly room air; allowing the doctors to feels comfortable he will flourish in his new environment, home.
Our race is not over, but we feel so blessed to have finally gotten to this point. What an amazing Easter this has been, one with a sense of promise and hope like we have never experienced before.
Pending a change in our schedule, I will update the blog with my sons coming home on Tuesday. We can hardly wait the remaining 48 hours, we are so excited and grateful.
Thanks again for all your prayers, and Happy Easter!
God Bless!
Visitation: Kimberley and I would like to ask our friends and family, as much as you all want to meet our new arrival, to allow some time to get adjusted, and him the opportunity to get stronger to resist any infection or bacteria that may hinder his continued recovery. We have been told to avoid exposing him to folks outside of the home for a minimum of 30 days, and no groups for 60. Please understand, and forgive us when we pass on your holiday events, parties and requests to visit. We will definitely let you know when we are all ready to show off our little man!
I keep singing in my head the following two songs...
Emmerson Drive
You're like a Sunday morning, pleasin' my eyes
You're a mid-summer's dream under a star-soaked sky
That peaceful, easy feelin' at the end of a long, long road
You're like comin' home
You're like comin' home
You're like comin' home
You're a mid-summer's dream under a star-soaked sky
That peaceful, easy feelin' at the end of a long, long road
You're like comin' home
You're like comin' home
You're like comin' home
AND, one of my faves...
John Denver's Take Me Home Country Roads
I just replace West Virginia with West Texas and mountain momma with Texas Momma. Sounds better to me!
Sunday, April 1, 2012
The Son Keeps Shining...
So I named my blog to reference the fact that my son would prevail in his fight for life. It is becoming increasingly apparant to me that our Lord had plans for Cash that we could never imagine, and the symbolism with which this title has at this time of year was no accident! I am in no way comparing Cash to the one and only; but I am expressing how during this week of observance, one that is so critical to all that I believe, my son has shown his strength while providing hope to us.
I cannot have known the timing for his upcoming arrival, and pending an unexpected setback, he will make this "coming home" quite possibly on Good Friday, maybe sooner.
Would I have preferred an earlier date to bring my little boy home, sure; but will I take this time and remember it for the rest of my life, certainly.
Happy Palm Sunday everyone, appreciate and remember what this week is about...
God's son, who gave his everything to offer you hope that your soul may live in peace for eternity, as long as you believe in him.
God Bless.
The Franek Family
I cannot have known the timing for his upcoming arrival, and pending an unexpected setback, he will make this "coming home" quite possibly on Good Friday, maybe sooner.
Would I have preferred an earlier date to bring my little boy home, sure; but will I take this time and remember it for the rest of my life, certainly.
Happy Palm Sunday everyone, appreciate and remember what this week is about...
God's son, who gave his everything to offer you hope that your soul may live in peace for eternity, as long as you believe in him.
God Bless.
The Franek Family
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