We celebrated Nathan's "No Surgery" news with a chocolate cake and dance party.
We did not sing "Happy Birthday to you" we sang:
Happy No surgery for you
May the Good Lord touch you
May His name be ever praised
Because your valve will change to 3 from 2
The cake is designed to look as his aortic valve should in 3 equal valves.
Notice the dance of joy at the end of the clip. Nathan has never danced like this before - in fact I have never seen him pivot like that - it was great!
Friday, February 13, 2009
Thursday, February 12, 2009
Tuesday, February 10, 2009
When You Pray for Rain - OPEN the Umbrella
There is only 1 problem when you pray for rain, you not only have to HAVE an umbrella you have to USE it. I will explain in a moment.
Yesterday, I contacted my primary care Dr and requested she put some extra pressure on the Pediatric Cardiologist.
At 11 am today I got a call from Dr Ralphe. At the end of the conversation we knew that Nathan would be going to Milwaukee Children's to see a surgeon there and that it would be next week. FINALLY SOME PROGRESS!!!!!!!!
Wait it gets better.
He tells me he will call me before leaving the office today with the date. More progress.
I call the insurance co. and my primary Dr. My primary Dr. agrees to get the FMLA paper work done ASAP (instead of sending it to the Cardiology staff - who are clearly overworked - smile) She also begins immediately the referral request for insurance coverage to have us go to Milwaukee Children's.
At 3 pm I get a call from Johanna at GHC insurance. She is assigned our case for complex care management. Praise God I know Johanna - our kids played baseball together and she lives in Evansville. She recognizes the last name and calls me as a courtesy. She says that she is expediting Nathans insurance coverage request and that Milwaukee Children's is on the approved list of hospitals for pediatric cardiology surgery. I am giddy with delight. Lovin' the progress.
Now, before I tell you what happens at 5 pm I want to tell you that we have prayed for healing on Nathan many times (just our family together) but 2 specific times this last week as a church group.
First with our small group on Thursday past. We prayed for healing and respite from the screaming fit nights Nathan was having. (well and our uncertainty if it was related to his heart condition)
RESULT: Nathan slept thru the night 2 nights in a row and in 2 days mom
got sleep. PRAISE GOD!
Second, last Sunday we stood before the congregation and had the elders lay on hands and anoint Nathan with oil. We prayed specifically that Nathan would not need surgery at all.
Ok now what happened at 5 pm:
I get a call back from Dr Ralphe, pediatric cardiologist. He informs me that after reviewing all 3 of Nathans heart echo cardiograms and conferring with his 3 colleges and superior that they have changed his mind and they want to do: NOTHING.
Ok so here is when it begins to DOWNPOUR on me. (for a temporary moment of insanity I had forgotten that I had prayed for rain and was holding my umbrella) I do what any child would do. I cry. WHAT!!!!! 12 days ago your words were - "this isn't something that can wait." AT 11 am I was going to take him to Milwaukee next week and now he needs - uhm - nothing? (there is way more to this conversation)
What am I suppose to tells John's work - We just told them Nathan needed heart surgery - they are going to think I am a head case!
I just got insurance coverage figured out! AAAAUUUUUGGGGGGHHHHH!!
Ok I admit I have a temper tantrum after hanging up with Dr Ralphe . I asked him to call John and tell him the same thing because I did not want to explain that. I was trying to figure it out myself!
So for approx 1 hour I sit and get poured on. Then I decide - wait a minute - I am going to open that umbrella -
HELLO - THIS IS WHAT YOU PRAYED FOR! Who cares how it came about.
( I am still working thru the angry emotions - I feel a little like I got to the alter to marry someone I did not want to marry -and the THEY said no and left ME jilted. Umm great - because I did not want to marry you anyway - but hey I didn't want you to back out on me!)
The pediatric cardiologist conferred with his colleges and superiors and they concluded Surgery was not needed at this time. You just got medical confirmation that Nathan doesn't need surgery - Hello - This is your answer to prayer. Just because it came wrapped in a green box with a red bow and you were expecting a red box with a white bow - don't miss the gift girl.
It is now 4 hours past and I have had time to digest - some - I will have you know I am under the umbrella opening my green box with a red bow and liking very much the present inside.
Yesterday, I contacted my primary care Dr and requested she put some extra pressure on the Pediatric Cardiologist.
At 11 am today I got a call from Dr Ralphe. At the end of the conversation we knew that Nathan would be going to Milwaukee Children's to see a surgeon there and that it would be next week. FINALLY SOME PROGRESS!!!!!!!!
Wait it gets better.
He tells me he will call me before leaving the office today with the date. More progress.
I call the insurance co. and my primary Dr. My primary Dr. agrees to get the FMLA paper work done ASAP (instead of sending it to the Cardiology staff - who are clearly overworked - smile) She also begins immediately the referral request for insurance coverage to have us go to Milwaukee Children's.
At 3 pm I get a call from Johanna at GHC insurance. She is assigned our case for complex care management. Praise God I know Johanna - our kids played baseball together and she lives in Evansville. She recognizes the last name and calls me as a courtesy. She says that she is expediting Nathans insurance coverage request and that Milwaukee Children's is on the approved list of hospitals for pediatric cardiology surgery. I am giddy with delight. Lovin' the progress.
Now, before I tell you what happens at 5 pm I want to tell you that we have prayed for healing on Nathan many times (just our family together) but 2 specific times this last week as a church group.
First with our small group on Thursday past. We prayed for healing and respite from the screaming fit nights Nathan was having. (well and our uncertainty if it was related to his heart condition)
RESULT: Nathan slept thru the night 2 nights in a row and in 2 days mom
got sleep. PRAISE GOD!
Second, last Sunday we stood before the congregation and had the elders lay on hands and anoint Nathan with oil. We prayed specifically that Nathan would not need surgery at all.
Ok now what happened at 5 pm:
I get a call back from Dr Ralphe, pediatric cardiologist. He informs me that after reviewing all 3 of Nathans heart echo cardiograms and conferring with his 3 colleges and superior that they have changed his mind and they want to do: NOTHING.
Ok so here is when it begins to DOWNPOUR on me. (for a temporary moment of insanity I had forgotten that I had prayed for rain and was holding my umbrella) I do what any child would do. I cry. WHAT!!!!! 12 days ago your words were - "this isn't something that can wait." AT 11 am I was going to take him to Milwaukee next week and now he needs - uhm - nothing? (there is way more to this conversation)
What am I suppose to tells John's work - We just told them Nathan needed heart surgery - they are going to think I am a head case!
I just got insurance coverage figured out! AAAAUUUUUGGGGGGHHHHH!!
Ok I admit I have a temper tantrum after hanging up with Dr Ralphe . I asked him to call John and tell him the same thing because I did not want to explain that. I was trying to figure it out myself!
So for approx 1 hour I sit and get poured on. Then I decide - wait a minute - I am going to open that umbrella -
HELLO - THIS IS WHAT YOU PRAYED FOR! Who cares how it came about.
( I am still working thru the angry emotions - I feel a little like I got to the alter to marry someone I did not want to marry -and the THEY said no and left ME jilted. Umm great - because I did not want to marry you anyway - but hey I didn't want you to back out on me!)
The pediatric cardiologist conferred with his colleges and superiors and they concluded Surgery was not needed at this time. You just got medical confirmation that Nathan doesn't need surgery - Hello - This is your answer to prayer. Just because it came wrapped in a green box with a red bow and you were expecting a red box with a white bow - don't miss the gift girl.
It is now 4 hours past and I have had time to digest - some - I will have you know I am under the umbrella opening my green box with a red bow and liking very much the present inside.
Friday, February 6, 2009
Still Waiting
It has been one week since the sedated Echo and we still have not heard of a surgical date for Nathan. We were told by Dr Ralphe that we would get a call on Wednesday. So we called and left a message on Wednesday when we did not hear anything. We called and left a message on Thursday when we did not get a return call. Then today I called again and explained that I needed the staff to call me back today to at least acknowledge my messages and give me an update as to the progress on securing a surgical appointment for Nathan.
I did indeed get a call back from Susan, Dr Ralphe's nurse indicating that we would not have any concrete dates until at least Monday. When I pressed further she stated the person she needed to talk to regarding Nathan was already gone for the day, leading me to believe that NOTHING was done for getting Nathan to his next step until probably 1 pm today (the time I left a rather strong message of my intent to become a very difficult problem in their side until they did what they said they were going to do!) For goodness sake people. I pressed farther asking if Dr Ralphe was comfortable continuing to wait since it seemed as though he was quite concerned last Friday and he himself told me that we would not wait more than 2 - 3 weeks. I was assured by his nurse that he was indeed comfortable waiting. So now I sit with my hands tied and wait out yet another weekend of not knowing who, what and where is next. Now of course 1 week has gone by already and here we sit with no further progress. I could just implode with anger over this.
My computer laptop died this week too, to top it all off. I will however make a diligent effort to get this blog updated as soon as we get any resolution for our little man.
I did indeed get a call back from Susan, Dr Ralphe's nurse indicating that we would not have any concrete dates until at least Monday. When I pressed further she stated the person she needed to talk to regarding Nathan was already gone for the day, leading me to believe that NOTHING was done for getting Nathan to his next step until probably 1 pm today (the time I left a rather strong message of my intent to become a very difficult problem in their side until they did what they said they were going to do!) For goodness sake people. I pressed farther asking if Dr Ralphe was comfortable continuing to wait since it seemed as though he was quite concerned last Friday and he himself told me that we would not wait more than 2 - 3 weeks. I was assured by his nurse that he was indeed comfortable waiting. So now I sit with my hands tied and wait out yet another weekend of not knowing who, what and where is next. Now of course 1 week has gone by already and here we sit with no further progress. I could just implode with anger over this.
My computer laptop died this week too, to top it all off. I will however make a diligent effort to get this blog updated as soon as we get any resolution for our little man.
Friday, January 30, 2009
Results of Nathan's Sedated Echocardiogram
It was a long and disappointing day, so I will keep this brief. I need to go to bed.
Nathan's Sedated Echo showed his levels were indeed critical. Today's appointment not only confirmed the 70-80 readings of 2 weeks ago - but while sedated Nathan had peak gradients of 110 mmhg. Yes, 110, that was not a typo folks.
Nathan's pediatric cardiologist will be having a consult with 2 surgeons this coming week and we will be scheduling him for a valvuloplasty in the next 2-3 weeks, as soon as we can get in. (not positive where this will take place yet - depends on the consulting Dr recommendation and if the surgeon agrees Nathan can have the balloon valvuloplasty and not the scalpel valvuloplasty)
Nathan's Sedated Echo showed his levels were indeed critical. Today's appointment not only confirmed the 70-80 readings of 2 weeks ago - but while sedated Nathan had peak gradients of 110 mmhg. Yes, 110, that was not a typo folks.
Nathan's pediatric cardiologist will be having a consult with 2 surgeons this coming week and we will be scheduling him for a valvuloplasty in the next 2-3 weeks, as soon as we can get in. (not positive where this will take place yet - depends on the consulting Dr recommendation and if the surgeon agrees Nathan can have the balloon valvuloplasty and not the scalpel valvuloplasty)
Thursday, January 22, 2009
Nathan's Sedated Echo
Nathan is scheduled for his sedated Echo in 1 week, Friday 1/30/09 8 am. Good thing to because his cardiology referral approval from our insurance runs out on 2/1/09.
We squeaked that out!
When speaking with the clinic staff, I was asked about Nathan's "Red Flagged" chart. Since he has allergies his chart needed even more additional consult approval in order in ensure his allergies would not interact negatively with his sedation. While on the phone with the staff they ask me about Nathan's snoring and sleep apnea. UHHMMM - I reply "Do you have the right chart - Nathan Baierl - B-A-I-E-R-L? Because uhmmm, he doesn't have sleep apnea or snore? "
I become alarmed - "Do you have his allergies listed there, because I would assume that is why his chart is "Red Flagged"
ARE YOU KIDDING ME? They either incorrectly had his chart labeled or had the wrong chart, and these people are going to work on my infants heart! AAAAAAHHHHHHHHHHH!
Must be because we have such a common last name (Smith, Jones, Baierl) - happens all the time you know: Dr offices pulling the wrong Nathan Baierl chart - such an ordeal to have a name like that - wish there weren't so many Baierls out there, then I wouldn't have to keep making sure they had the right one. Jeepers people.
We squeaked that out!
When speaking with the clinic staff, I was asked about Nathan's "Red Flagged" chart. Since he has allergies his chart needed even more additional consult approval in order in ensure his allergies would not interact negatively with his sedation. While on the phone with the staff they ask me about Nathan's snoring and sleep apnea. UHHMMM - I reply "Do you have the right chart - Nathan Baierl - B-A-I-E-R-L? Because uhmmm, he doesn't have sleep apnea or snore? "
I become alarmed - "Do you have his allergies listed there, because I would assume that is why his chart is "Red Flagged"
ARE YOU KIDDING ME? They either incorrectly had his chart labeled or had the wrong chart, and these people are going to work on my infants heart! AAAAAAHHHHHHHHHHH!
Must be because we have such a common last name (Smith, Jones, Baierl) - happens all the time you know: Dr offices pulling the wrong Nathan Baierl chart - such an ordeal to have a name like that - wish there weren't so many Baierls out there, then I wouldn't have to keep making sure they had the right one. Jeepers people.
To Sleep or Not to Sleep
I have given up on the idea of ever sleeping.
I have filed the idea away in my mental filing cabinet as something that only dads do.
I am not awake because I am worrying. Unlike most mothers, I actually don't do this much. This is a lesson God walked me thru long ago when David was a baby. Plus, I am not a problem fixer/thinker by nature. I am more the martyr type -not an attractive trait.
I am awake because one of my children is being very unlovable. Too bad ears don't have an off switch. I find myself calculating how many hours it will be before the next episode. hmm what will be next - peed bed?,scary dream?, early snow plow?, police at my neighbors? Why bother. I need the caffeine patch. Have you seen the movie Meet the Robinson's? The scientist mom wears a caffeine patch. She doesn't sleep for 8 days - no side effects just untimely and uncontrollable screams - no one would ever suspect anything.
I have filed the idea away in my mental filing cabinet as something that only dads do.
I am not awake because I am worrying. Unlike most mothers, I actually don't do this much. This is a lesson God walked me thru long ago when David was a baby. Plus, I am not a problem fixer/thinker by nature. I am more the martyr type -not an attractive trait.
I am awake because one of my children is being very unlovable. Too bad ears don't have an off switch. I find myself calculating how many hours it will be before the next episode. hmm what will be next - peed bed?,scary dream?, early snow plow?, police at my neighbors? Why bother. I need the caffeine patch. Have you seen the movie Meet the Robinson's? The scientist mom wears a caffeine patch. She doesn't sleep for 8 days - no side effects just untimely and uncontrollable screams - no one would ever suspect anything.
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