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Gage video

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All though he started celebrating Thanksgiving at 4:00 this morning.... He was very happy when I told him it was turkey day and he could eat as much as he wanted without being called fat!!! I'm so thankful that I get to wake up to this big smile everyday!!!
*Beth*

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Gage fell asleep under the Christmas tree!!
*Beth*

Update......10.11.2010Hello From the Ronald McDonald room at Duke hospital. A few of you are surprised and some already knew, but I will update on what has gone on in the last couple of days.  My Aunt Lois passed away and she was a very very sweet woman who tried to see the good in everyone.  Mama, Lisa, Larry and myself were at Aunt Lois visitation on Saturday night when I get a frantic phone call from Beth stating Gage is having seizures back to back and they are on the way to the Emergency Room. Well, we are torn until we get a second call that tells us that East Care out of Greenville is coming to fly him to Duke; and they cannot get an IV so they have to drill a hole just below his knee to obtain IV access, and then they will put him on a ventilator.  Well, they cannot do this so we leave and race back to Washington County (mom kept saying this is taking too long), and Lisa kept telling me to go faster, and Beth would call and I would call her call and tell her to tell them NOT to drill the hole until the guys on the helicopter tried.  Then to prevent him from being intubated and put on a ventilator I called back and said remember he has to take fiber optics to be intubated and I feel sure Washington Co will not take this on.  The next thing I do is call Jay Hardison and ask him to start praying and start our pray chain. Lisa does the same, and I laughingly to break the tension tell Lisa to pray b/c I am driving and closing my eyes would not be a good thing. She said she has been praying the whole time, so all of us in the truck are praying out loud that the Lord will guide the MD/nurses to find an IV and Gage will stop having seizures, and will not have to be intubated.  We arrived at the hospital and Gage is pitiful but praise be to the LORD the nurse found a tiny IV in his left foot. The MD has agreed to hold off and let the helicopter personnel decide about intubation. It NEVER fails to HUMBLE and bring me to my knees to see Gage laid on a stretcher. I mean he is 2 1/2 years old and he has flown on East Care and Duke Flight, and he is struggling with these seizures that they think were triggered by the Suprax. But Aunt Kim will deal with that later. We watch the team arrive, as my family and good friends-Dawn, Zach, Beth, and Sandra are waiting in the hall with us. Gage comes out and they decide after it seems forever NOT to intubate at this moment. But they will Annie if he continues to desat or have a lot of seizures. They strap him down and he is exhausted and resting like an angel and he is soooo little, and soooo precious and I tell the team that they carry precious cargo and God Speed. We all kiss his forehead or little hands, and then as we stand on the sidewalk in the dark they take him away from us BUT, BUT you and I both know that another person got on that helicopter-THE LORD. As the wind blew in our faces, we all shed tears and Aunt Kim prayed for the Lord's will to be done. Afterwards when we could no longer see the lights it felt as though a part of you heart was taken, and I couldn't help but think of Aunt Lois. She was on her flight to Heaven too. Gage had wings and Aunt Lois did too. ML and Beth came up to Duke that night and Gage was admitted to PICU directly he had over 50 seizures and they continued to threaten the IV in his knee all night.  Aunt Kim got a call around 430 am and when I got to Duke Gage decided he better straighten up (HAHA). He was shortly transferred out of PICU to the 5th floor step down. They have continued to threaten the knee IV until about one hour ago around 10am.  Gage has not had any seizures since 6am Sunday am. We are changing meds, We upped his VNS device and magnet a little while ago. We have to stay another night. Beth slept in a recliner that does not recline; Aunt Kim slept in a hard straight chair and I am sleeping in the bathtub tonight. Gage was wired and had his times mixed up so at 230am he was up and playing and he has an awful cough that requires a lot of suctioning.  The nurses so far have been OK.  Beth and I were giving Gage a bath and turned the whole tub of water over in his crib. I was worried he was going to be electrocuted b/c they have him on heart/pulse ox/IV/GT. Even his dogs got soaked he could have drown. Gage smiled and we put him in his stroller while I mopped water.  But we have to stay another day because they are going to make sure that he does not start seizing again.  If he doesn't then we will be released in the am.  God is good. and I know he kept Gage from being intubated, and needing an IV drilled into his bone below his knee. I am blessed. God puts us thru these trials to make us better people, more forgiving, more loving, more tolerant.  All of you think of me in the bathtub tonight and thank you for loving me and loving Gage.  Aunt Kim 
*Beth*

Update......10.08.2010Frustrated, disillusioned, and looking towards heaven for guidance and peace of mind. (Also to keep Aunt kim from going over to Winterville and knocking some Pediatricians into next week).  My Aunt Lois died last night but she is in heaven with Uncle Buck, and  I am sure they have a lot to talk about. God Bless Eddie and his family. I talked to my Dad who was to take Gage to the MD today if he needed to go, but at 8am he had not heard anything, so I was thinking "no news is good news". Right? Wrong!  Gage decided that he wanted to add just a little extra stress to the mix this am by having 4 grand mal seizures  and turning blue.  Beth called upset and Gage had to have Diastat-Valium. Beth looked up the antibiotic-samples we were given by the Pediatrician in the office Wed and they have a contraindication with one of Gage's seizure meds and they are known to make seizures worse. HELLO.......First of all I feel terrible I didn't check it and now I am wanting to go beat up the medical staff b/c they prescribed it.  I mean some things you just take for granted but time and time again we learn that we have to check everything. Aunt Kim called Wombles and spoke with Carrie the Pharmacist who is wonderful and she confirmed that antibiotic does cause seizures but did not see the interaction with the seizure medication that Beth had found on the internet.  The medication has been given already today and will be in Gage's system 4 hours-until 2pm at peak time. This is the kicker:::: when Beth called the Pediatrician's office which I remind you I have a problem with already (my name is flagged on Gage's chart as Crazy Aunt Kim Nurse) they said that they were calling his neurologist.  However, the neurologist they told Beth-Gage has not seen in over 2 years. Kind of scary huh??? Especially since we send them a copy of everything that is performed on Gage. They had no clue who he is seeing.  Ok then to add insult to injury---she says " keep taking the medicine until you call Duke and they tell you to stop".   HELLO.  He has had 4 grand mal, turned blue, and you spoke with a pharmacist who says yes it can increase seizures but keep giving him the medicine!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Can I say STUPID.....Not going to happen chickadee......She even said 'well isn't 4 grand mals pretty normal for him?" In 2-3 hours???? What medical school did you go to???? It kills my heart to walk in and know what he has gone thru, and to know that if Gage was NORMAL he would be flown via East Care to Duke right now. But we handle it. Just like lots of others handle it, deal with it, and you know we do it with the Lord's help. As we look to Heaven to pray to keep our cool, and to pray for some relief for Gage, and pray for some intelligence to come to those "Professionals". It is ONLY thru the Lord that we are sustained. That we put one foot in front of the other and keep going. Because as I look at how groggy Gage is and realize the fight physically he has put up this week I am humbled AGAIN. He is my hero. I Pray. God bless those children and keep them in your care, and watch over them when nothing on this earth seems to be working you are working in ways we cant see.  Lord we know you are with Gage and we pray that he and Beth and ML get some relief from whatever it is that is causing his pain and seizures. Be with Eddie and his family. Praise be to the Lord and the blessings he has given us this day.  Oh, PS...Keep me from thinking really bad thoughts about people who are not as smart as I think i am. ha ha.........Love,  Aunt Kim.... 
*Beth*

Update......10.07.2010Can you believe it is October? Well, we missed our October 1 appt at Duke due to the flooding.  Beth, Gage and Aunt Kim were all headed to Duke and we call home and they are evacuating the animals, the water was at Beth's back door and they needed Uncle Chuck to come cut the power off the water/ house due to pump house was under water.  Beth and I looked at each other and said "No Way let's go home and help move things if it comes to that". So we rescheduled all our appts to Oct 12 and did a U-turn and came home. Gage slept the whole time.   Today, October 7 and the last few days have been AWFUL for Gage. He has cried literally non stop and his voice his shrill and hoarse.  Beth and Aunt kim loaded him up and took him to the Pediatrician yesterday after we had tried everything at home.  We changed him over to Pedialyte, we did suppositories for his bowels, gas drops, checked his g-tube, did hurricane gel on his gums, his lungs clear, secretions clear, bowel sounds are very active.  We put him in warm water to relax his buttock, rectal temps for stimulation, ginger ale, massages, you name it and we did it....He cried (Gage does not cry) all the way there 1 hour, the whole visit, and 1 hour home. The MD said negative strep throat; and one of his ears was a little red but she did not think that was the problem; she gave us sample antibiotic, and soy milk to mix with the pedialyte to go in his g-tube.  The office staff and MD kept saying "You really don't feel good do you buddy". What was their first clue?? OK, after we leave we have to mix this soy/pedialyte solution so I stop at HESS station and buy a Vitamin Water. Beth drinks a couple swallows and we dump the rest out and then we mix the drink in the parking lot. We also mix the antibiotic and take the syringes out and administer the meds into his tube as Gage is crying.  DEA could have busted us for a lab on wheels we had all kinds of things laid out mixing.   Anyway, I called Beth this morning and Gage had a little bit of stool very loose but not a lot. The MD wants to see them Friday am if he is not any better and then I suppose they will do an x ray of his abdomen i would imagine. He is miserable, Beth is miserable. We all cried.  I know I have said this before but i wish that it worked that you could trade out and take this sickness onto myself and let him be well.   He is such a sweet kid and he goes thru so much EVERY day, why does he have to have it so rough? Another lesson i suppose. Another reason to lean on the Lord and have him pull us thru it b/c believe me i am no saint and I question why Gage and why cant it be me instead. Put it on me Lord. I would gladly take it for him. But again me being human and weak I am not meant to know why things happen the way they do. I have to accept, believe, and have faith that this is how it is supposed to be. TRUST in the LORD to know. Be there for my little sugar plum. It is just so hard being a nurse and not being able to do ONE thing to take away his pain. Humbling to say the least to a person like myself who likes control of her world, but who the Lord is teaching that I have no control except that which he gives me.  All I know is that every day is a blessing with this little guy. I have a cousin, Eddie, and his mother is dying.  Eddie got her to take her to medications the other night by reminding her that she always promised him that she would do anything for him if he asked.  She swallowed her pills for him as he was on his knees by her bedside holding the cup for her to drink. Every moment is a blessing for Eddie and his family right now with Aunt Lois. Every moment is a blessing with Gage. Family and Good Friends are so important remember to tell them you love them. Love, Aunt Kim   
*Beth*

Goin Huntin....

*Beth*

GREAT NEWS!!

Gage and I traveled go Greenville yesterday for his cardiology check up, and I was very releaved when his Dr. informed me that he NO LONGER has to see her!!! What a great feeling it is to finally hear some good news!!!
Dr. Lurito saw Gage on the first day he was born, and explained to us the MANY issues that Gage had with his heart, and now 2 1/2 yrs later through many ups and downs has released him from her care!!!
Isnt God amazing... he was able to heal Gages heart and no surgery was required!! I truely believe that God puts you in the place that you need to be and having Dr. Lurito has been a true blessing! She did far more for Gage than just her duty as a Cardiologist and for that I will be forever greatfull!!
So... Its one Dr. scratched off our very long list.... and I couldnt be happier!!!
*BETH*