12/15/08
Maybe, because once again I see the frost on the windows, that I remember a very dreary day 5 years ago, staring out a frosty window with a heavy heart and a momentary loss of Faith. Madison had just had 4 defects in her strawberry sized heart repaired. She was only 4lbs and although the heart surgery went well she was having a bumpy ride on her road to recovery. On this particular night, I recall like it was yesterday, The American Red Cross announced it had noticed a foreign substance in the blood in the blood bank and they had to throw all the blood away.
Madison was getting blood and/or platelet infusions every 12 hours for days and so far, there was no end in sight. I thought they would recruit some new donors and all would be well, right? No. Madison's platelet count should have been 150-400 and she was at 20. A couple hours later she was at 10, by night fall she was at a count of only 4. The blood bank was called with every count and we heard the same thing, "There is nothing in the bank". I sat with Madison, who I was no longer allowed to touch for fear of her bleeding, and watched her sleep.
At times she woke, and although she was on life support, she would occasionally open her eyes and a tear or two would fall. I usually appreciated this because to me it meant she was still in there fighting, but that night was different. That night, her tears were crimson red. She was bleeding openly into her secretions and she was bleeding to death. We had overcome open heart surgery on our new born. We had over come sepsis, a life threatening infection, we had over come 3 months of being on life support and now she was going to bleed to death because no one was donating blood.
Blood-The very gift that sustains us all, that is free to give at will, that replenishes before you even leave the facility you donated at, that was going to save my daughters life, was no where to be found. I walked over to the frosted window behind Madison's bed and stared out to the campus of Emory University. I watched bundled up student run from class to class, professors strolling the sidewalk, joggers, bikers, there were people everywhere.
All of them had blood, but had "something else" to do that day. My daughter was going to die tomorrow, there was no doubt about it. Without an infusion she would bleed to death and no one was going to save her? I begged them to hook her up to me, for a direct donation, of course that is against the law, but I certainly thought it was worth the penalty, knowing the penalty wouldn't be life, and we were about to lose hers.
It was the next morning that a life flight helicopter brought in blood from another state. I don't know how many people died that day, but I am sure it was a lot. My daughter made it, I still don't know how, with blood in her tears and saliva, it was a true miracle. I saw the blood bag come into her room and cried, on my knees, I cried. I have never, ever in my whole life, to this day, ever felt the desperation that I felt that long day.
Blood-Something you have, I have, it is a gift that can be freely used to save the life of another, any time you choose. Someone, some where is waiting for you. On their knees, crying, pleading with God for a miracle. You can be that miracle anytime you chose. You can give something that costs you nothing, but is worth LIFE.
So, if anyone were to ask, "What do you want for Christmas?" I would want that baby to be saved, for that mother to get off her knees, for the cloud of desperation to be lifted.
PLEASE GIVE BLOOD THIS CHRISTMAS.
***UPDATE*** My Christmas has been MADE! I am overwhelmed and overjoyed at how many of you forwarded this onto friends, co-workers, church groups, etc. Let me tell you what WE did... There were people who literally got up from what they were doing and went to give blood. There were people who booked appointments for themselves AND for the extended family members they were having in town for the holidays to go give blood.
There was someone who worked (and achieved!) in getting a HUGE corporation to set up an ANNUAL blood drive starting this January. I am so happy that you all were touched enough by our story...No, maybe more like awakened to the urgent need, and the importance of giving blood. I am sorry that we had to endure what we did, but I wouldnt trade it for anything knowing that because of our trials, we were able to help so many, many more people.
One person, my Madison, went through hell, but from that hundreds, if not thousands of people have benefited because you all gave of yourselves in her honor. THANK YOU, THANK YOU, THANK YOU!!!
12/07/08
We had a very full week this week. If it isnt rescuing or recovering organs we are rehabilitating them! Maddy had an occupational therapy eval this week which was very insightful, I learned so much about why she is the way she is. Such as, why loud human noises bother her (screaming, clapping, babies crying) but not vacuming, hair dryers etc, and that is because of the pitch! I had no idea.
We also talked about the fact that she may not be potty training due to medical issues, not so much sensory issues, but at least now I know who to see about that to start ruling some things out. She also had a physical this week which went pretty well. I keep hearing the word Neurology pop up over and over, and I have to say I havent had very good experiences with them, but it looks like I will have to try one more time to see about her strange physical behaviors.
She has had a lot of tingling fingers, jumpy limbs, and seizure like facial expressions. Ugh. The worst part was she had to get 3 shots and a TB test which made her run a 102.5 temp all night, the best part was that she is 50% on height!!!! (We wont talk about the weight...) but at least she is growing!
Nope that isnt it! Monday she has IVIG infusion #2 of the season. Not for a minute do I feel more comfortable because #1 went well. The way it works is, your body build up an intolerance to it and so you are actually more likely to suffer a reaction the more infusions you receive. We will all pray that that DOESNT happen. There is that whole idea about being optimistic yet realistic.
So far we have put up a tree, decorated the house and attended a Christmas event for Kids, all without a problem. Hooray for that!!!
12/01/08
We had a beautiful thanksgiving at home last week. Maddy was feeling well and she ate and so enjoyed everyone being at her home. Hopefully she will remember that happiness and stay home for Christmas too! Overall she is still feeling better so we are on our "routine visit" to all her Doc's. Today we went to physical therapy at Childrens.
Her PT discovered several things to be concerned about...her hips indeed growing in the wrong direction, her shrinking tendons, and the neglect she places on her right leg-over stressing the other leg and the constant toe-walking. God willing, she will get PT approved for a couple months with medicaid and we can get some help before it is too late. Yes, it can be too late if she continues to grow with out help.
We go back on Friday to get the splints for her to sleep in to help stretch the leg muscles, that should be fun trying to sleep in those! We may also cast her Friday for AFO's which are leg braces that go up to her knees. Being winter, you never see them, but they help her a lot. Dan calls them "Gumpers" after Forrst Gump :)
Today we go to the dentist. I am sure all will be well there. We've always been really lucky with her teeth. Thank God. They are a HUGE worry since the mouth is so germy it can send bad germs to her heart and cause bacterial endocarditis. DiGeorge kids usually have terrible teeth because of lack of calcium and other nutrients.
Maddy is loving the Christmas season already. She has fallen head over heels in love with Snoopy and Woodstock (Peanuts Christmas movies) and loves to hear Jingle bells everywhere. Her IVIG is due again next week and we are much more prepared this time with a better place for her to lay and a DVD player!
We are home and enjoying every single day that we have here. Being in the hospital 4 out of 5 Decembers (yes, the whole month) make us really live for each and every single day!!!! HAPPY HOLIDAYS
11/21/08
It has been a Maddy roller coaster lately, so I haven't posted for a bit. Lets see, she went to Ortho again with concern for...well a lot of things! Her scoliosis has indeed gotten a smidgen worse, but still not time to do anything about.
Her "S" curve is much more obvious now, but there isn't a thing we can do about it. Her right leg has been diagnosed as a sort of displaced hip. He says it "almost" always will heal or straighten out on its own. If it doesn't, it will require surgery, but there is, once again, nothing we can do to encourage it to grow in the right direction.
She was casted again from the knees down for splints that she will wear while sleeping. She has been walking on her toes 90% of the day and now her tendons are shrinking and you guessed it....will require surgery if they get much shorter. So the splints will keep her feet flexed while she sleeps in hopes to lengthen them back out. Why she toe walks...I don't know.
GOOD NEWS...I think I've got her back in physical therapy at Children's Health Care of Atlanta!!! When we went there to get casted her PT said there were some loop holes that maybe we could get her back in. Lord, she needs it so bad with all that she has going on! Poor girl is so tight that she can not, and I mean "can not" sit Indian style at all. Since she cant put her leg in that position, she also cant put her shoes on.
Maddy was very very sick last week. I even made a Target run for new hospital jammies since it had been so long since she was admitted she grew out of all of hers. I was that sure she was going. I don't know what it was, or what happened, but it is over. We did labs and only her phosphorus came back abnormal, possibly from her hypo-parathyroidism, but she was clinically very sick with fever and all.
Thank God it is over and she is back to her self again. Today she was actually "bad", and it was a beautiful sight to see her have that spunk again. I took total joy in her behaving badly, knowing it makes her all the more normal. I've missed that, if you can even imagine :)
11/06/08
Maddy has finished her first infusion! She was very itchy and cranky as the medicine makes your joints cramp and skin feel like it is crawling. None the less, she did great! Unfortunately, her nurse saw quiet a change in her from her last visit a month ago, and after running a check list of her daily activities she said it was time to call cardiology again.
I can't say I disagree, I don't want to agree, but I can see it too. It is a very hard place to be, deciding weather or not to pursue another open-heart surgery. I'd like to keep my head in the sand and pretend I dont see what I do, but it keeps being brought up by everyone who works with her and I cant let her go without retested again.
It makes it easier to call knowing I have the nurse backing me, and knowing I HAVE to call because it is the right thing to do. So hard to take that next step knowing where it leads. I have to remember though, not to look short term, but to look straight on through to the very end of the tunnel, where she is repaired and playing and running outside again.
Today went well, she even got a new DVD player for her room so her next infusion can be given in bed where she will be most comfortable. Today went well, and thats awesome.
11/05/08
Tomorrow Maddy is having her IVIG infusion. Incase you are new to all this, IVIG is a plasma blood product that has been filtered to contain all the antibodies she needs to stay well. Sounds great, but you can have life threatening reactions to IVIG. Maddy has had reactions in the past and it is very scary because it happens very suddenly and you have to be prepared with drugs to restart her heart or clear her airway.
I have a fantastic nurse who has handled such emergencies with Madison before and I trust her, but being at home and having these things happen is scary. She is going on a product that she did well on a couple years ago, and we have everything in order to hopefully have a very successful infusion. Last year I did the sub-Q infusions myself and I fought to go back to having a nurse here with me doing the immunoglobin infusions into the surgically implanted Port in her chest.
Two years ago when we did the infusion it was supposed to run over 1 1/2 hours, but in reality it took almost 3 hours because Maddy has leg and back cramping if it infuses too fast. Because she is older, it is now set to run over 4 hours, so who knows how long it will take now! I prepared today by making her a palate on the floor so she can sleep (IV benedryl is part of the protocol), and gathered some workbooks for her to do when she wakes up.
We can also watch a movie and we can read some books. Four hours-plus is a LONG time to be hooked up to an IV pole when you are 5 years old.
Please say a small prayer that this goes well and that her body becomes strong and resistant to these nasty winter germs. This is also a small little reminder to PLEASE GIVE BLOOD whenever you can. It takes 20,000 donors to make 1 IVIG infusion.
Not a type-o...20,000! Twenty thousand people gave blood in order for Madison's immune system to become stronger. Isnt that profound??? Twenty thousand people gave of themselves to try to keep my daughter well this winter. Wow. What an amazing, heroic act, to give blood. Each dose costs approximately $2700.00 and she will get them monthly. Thank God for insurance!
As always, I am so very thankful for sending positive energy Madison's way.
10/26/08
Some good news! After stating me case to Immunology, they decided that we could try the IVIG again. That means I will not have to be the one to administer the medicine, or to have to stick her. She gets her Port flushed once per month anyway, so what I was going to do was have to stick her 4 more times per month!
Now, she will get the one Port access per month and get everything done at the same time. What a relief! You may or may not remember that Madison had several allergic reactions to IVIG last year, so we are switching brands to hope that helps. Heart wise she is still feeling poopy. No better way to explain it expect than she is a couch potato. When she eats, even a small bit now, she gets pale and has to lay down with covers because she is freezing too. Very scary for us.
She still goes for food, so I guess when that stops, then it will be time. Kinda like a grenade, you don't want to throw it too early or too late! I have no idea what I am doing...I am not afraid to say :) Just hanging out until it suddenly "hits me" that it must be time. They said I will "just know", so I am counting on that. Thats all for now. Hoping for a happy halloween, she is already to be Big Bird!
10/17/08
You can tell it is winter, as the updates get more and more frequent! Today we got a phone call from Maddy's immunologist and they have decided to restart her Sub-Q IG infusions. What is that, you say? It is a blood by product that has T and B cells to help fight infection. Her counts for tetanus and T and B cells were way too low.
Why does Mommy hate it so much? Because I have to administer it! I have to take her little belly, pinch an inch and then poke her with a needle that will remain there for an hour or two while the thick medicine is absorbed by her body. My last insurance wouldn't pay for a nurse to do it because I was "capable" to do it myself...funny thing is, I don't remember going to nursing school!
Honestly, I haven't got a problem doing the procedure, my problem is that my daughter runs from me, I have to catch her and then cause her pain. Then, for days she wont let me near her without showing her my hands first to make sure I am not going to cause her pain again. Mind you, this is a weekly thing, so by the time I have done it once and she gets over it...yup, time again.
This isn't like a diabetic stick, we've done those and it was no biggy to either of us. This is a pretty painful needle in the stomach! It makes me sick to cause her such stress over someone who is supposed to be her protector. You can imagine what the poor kid is thinking. I know I have to do what I have to do to keep her healthy and safe, but with her not understanding why I am doing this, it is in turn making me sick.
On a good note, and I am trying to find one, we are going to the mountains tomorrow for a picnic. We had to rethink the North Carolina trip because I couldn't get a 100% go ahead from anyone in cardiology that she wouldn't have a problem with the altitude. Although I think we might have attempted it, it wasn't worth trying for just a one day trip. Now we are going more local and we shouldn't have a problem at all.
Maddy is insanely looking forward to it! She has been counting down all week and can hardly wait. Rain or shine, here we come!
10/13/08
We are in a better frame of mind since the last time I updated. Terrible news, no matter how you slice it, but so it is, and so I let it be. Many people have asked when will the surgery be??? And the answer is, I have no idea. We wait for her symptoms to get worse and then we schedule a 4D MRI of her heart to get together a plan of action.
There are so many people involved in making all the decisions, honestly, the parents are a little left out, it is up to what the Cardiologist and the surgeons think is best after reviewing the EKG, ECHO and MRI. They will round table and then tell Dan and I the plan. It takes a team, and a team takes time. We are hoping to make it through the winter, but I cant say for sure.
The original plan was to stop her Immunoglobin infusions and send her to school to see how she'd do. Now all that has been retracted and we may have to do the infusions to keep her healthy and we still arent sure about school. We cant afford for her to need to go to the OR already sick, or have her really worn down and not be able to fight anything because her heart is weak. It is a very fine line and you have to rethink everything.
As I am writing this, they called to let me know her IG levels as of last week were 550 which is way below normal...that is her immune system. I suppose her Immunologist will call about that soon. In the mean time, we are planning a lot of family time! This weekend we are going to North Carolina to visit extended family, Maddy has never been to the mountains and has not stopped talking about it! We took Ben last year and he is STILL talking about it! She is really, really excited.
I called her Doc to see if the altitude will bother her, and they said that she has to live, if it bothers her, than it is time to come home and fix the problem, but that we couldnt live in a bubble. I dont plan on ever living in a bubble :) We will take her pulse ox machine and keep a check on her. We have also started taking pictures of all the people/places and things she loves so that when she is recovering she can look at the pictures and have warm fuzzy memories to fill her little heart and head.
That worked amazing last time. We called it her "Happy Book" and she flipped through those pages until it all but fell apart. I will also tape her teachers reading again so that she can listen to that while she lays in bed. It warmed her heart to hear familiar voices telling her stories. So much preparation to keep the experience as positive and as it can be.
In the meantime we will take her out to have as much fun as we can squeeze in while keeping her safe from as many winter germs as possible. I have started to tell her that her heart is tired again and that it is a little bit broken, that way she isnt caught off guard when it is time. Its so hard because if I tell her the whole truth I risk her the worrying and living cautiously, but yet, I have to tell her! Again, there was no parent handbook for this! So, look for us out and about having some fun and taking lots of pictures.
If you can think of anything that we could add to keep her positive and happy, I would LOVE suggestions!
10/03/08
Today was Madison's annual cardiology appointment. I had some concerns, like why she felt faint after eating and why her exercise level hasn't really picked up after the hernia repair, and mostly...why her heart made that rubber band snapping sound??? So he listened to her and did her EKG and thought everything was okay, except for that rubber band snapping sound. he wanted to see that on the ECHO, so we did one.
After the ECHO, he came back in to tell me that her pulmonary valve, the one we replaced almost 2 years ago, has a very significant leak. You scale the leaks "trace, mild, moderate, severe". Hers were all "trace" 8 months ago except for the pulmonary one, it was "trace-mild". It is now "moderate-plus" in his words. This was such a huge blow to me, as I wasn't expecting bad news today. I think he asked me 3 times if I was okay enough for him to go on.
I was/am devastated at the thought of having another open-heart surgery so soon. This one was supposed to last 5-10 years!!! We cant say when she will need to have the surgery, we just know it is coming, and at a much faster rate than anyone expected. My job now, is to watch her for symptoms, like last time. She will start sleeping a lot, stop talking so much, and lay around instead of playing, and be more irritable. It is gut wrenching to watch her deteriorate before your eyes KNOWING it is her heart slowly down and struggling that is causing her to be this way.
I am sorry this is such a sad email, there is no happy part, no good news, I am really, really broken hearted. I am not sure why we have to keep going through this???? We have become better people because of Madison's struggles and trials, what more good can come out of her suffering??? It is exhausting to stand at the bottom of this hill and look up, so I wont. Surgery isn't today or tomorrow and there it is a (pretty unrealistic) chance that she could stay at this "moderate-plus" level for some time.
So for today, I have her and she is smiling and well, that is what I will take and that is what I will focus on. The big picture is too much to deal with and too sad to think about. He did say that next time they will probably go with a different type valve knowing now that this one didn't hold up long enough. The other type presents a whole other ball of wax of problems, that is why we didn't choose it to begin with, but we will do the best we can with what we have.
So, what can YOU do? Pray for this valve to hold on for a bit. Pray for her to stay healthy this winter in case we need to go to the OR, pray for Dan and I to find some peace with this, and let me walk away on days like today when I cant talk to anybody face to face. Sorry to those of you I've had to cut short today...the tears just keep coming.
I'll be better tomorrow :) Thank you all for always supporting all of us.
09/28/08
Can you believe it??? TOMORROW will be Madison's first day of SCHOOL! We finally have everything in order and are attempting to send her Mon-Fri for 2 hours per day to a special needs class at the public school. She has waited so long for this and she is really excited. I am counting on there being bumps in the road, but thats okay, we will work it out and go as often as she can.
Her home-bound schooling will still be in place so if she has to be out for a bit she wont go without. the other day she was working with her speech therapist. The therapist was putting together words for her to sound out and instead of sounding them out, Madison just READ them! I about fell out of my chair! I had no idea she could read. She will get so much out of going to school, it is really exciting.
It is funny the way her mind works/dosent work. She read those words, and learned to read them all by herself, yet when asked "what is a cup" she can't answer you. It is very complex to teach a child like that. So bright in one area, and just blank in others.
PLEASE REMEMBER that Becca has started a group of runners (I think she has 19 now) to train to run their first marathon! They will be raising money for Maddy in trade for Becca's free training. Join them, or support them by donating to one of them, or help spread the word by making a purchase off of www.cafepress.com/madisonfaith. Becca is the truest definition of the word HERO. Follow her blog at www.milesformaddy.com.
I have been able to purchase some of the g-tube supplies that she needs on Ebay for very reasonable prices, thank God for that and for her fund! Hopefully we are working everything out with the secondary insurance and we will be back on track soon. Cardiology appointment is up coming to check about the fainting after eating, and so is the appointment to recheck the growth of her hip. The right leg still is very turned in and I cant imagine what they are going to do about that. Ugh.
Most important is school tomorrow!!! Tonight is Madison's very first "school night"...so exciting! I will be sure to post pictures on the photo album page asap. Thanks for checking in on us :) We appreciate the support always!!!!
09/16/08
Well, still no school so far. Lots of red tape and by the time we get in figured out, we will be into winter and well, I just dont have the energy to fight the battle right now. She still has her teacher coming to the house so we will leave it at that and wait to see what happens. The battle I AM fighting is with insurance over her g-tube feeds.
Her primary insurance will no longer pay for her g-tube feeds or supplies, a $950.00 expense. Her secondary insurance said they will "consider" the claim, but it may take them 60-120 days! In the mean time, I am responsible for the tab of $950.00 per month. I was lucky enough to be hooked up with a friend who can get the medical supplies wholesale, but it is like adding a car payment instead of a house payment to our list of debts for Madison.
Hard to believe what they expect you to do and what they expect you to be capable of! Who can afford that? Anyway, we will figure it out like we always do. Tomorrow Madison goes to GI for a new feeding tube button, that is always a very, very long day. She screams and fights the whole time, no fun, but something we have to do every 6 months or so.
Dan will be traveling from now until October, so we will pray that everything goes smooth the rest of the month. We have been lucky with him traveling so far, just praying she doesnt get admitted while he is gone. That will not be easy! We see cardiology soon to. She has been feeling faint after she eats and almost passes out after she eats a large meal. She grows pale and has to lay down and she kinda sleeps for a few minutes, then she will wake up and eat again!
So crazy, but what we learned is that the blood rushes to her GI tract when she eats and her heart needs every bit of it, so she kinda passes out! (She'll make a really entertaining dinner date someday...Hey, watch what I can do!) Hopefully she just has to eat small meals and we wont have to do anything else about it. We will find out next week. I sometimes feel like we are a dramatic t.v. mini-series :)
09/09/08
Tomorrow is already 1 week post-op! Can you believe it??? She is doing so well, it is really exciting. She has been walking everywhere, going up stairs and has finally even asked to ride her bike! She hasnt asked to ride in months, so I know she feels a lot better with those hernias fixed.
Today we went to the immunologist and we decided to let her try going to school now. If she is admitted for serious illness or generally cant stay well, she will have to pull out. I really dont want to have to do sub Q immunoglobin infusions in her belly again this year. It was horrible to have to stick her each week and it really made her distrust me.
So, I guess maybe by next week she will finally have her first day of school! We are soon off to cardiology to recheck that very weird sound in her heart and some other "changes" we have noticed. Hopefully everything will be well there too :) I Hope you took note of the new pictures in her photo album and the video on the home page.
09/03/08
4:00 Wow! We are home and eating and watching T.V already! Maddy pulled through really well from the surgery. She had 3 hernias repaired (2 inginal and 1 umbilical) and they left 3 on top because they were in front of her liver. If they repaired them, that would have been very serious and required several days in the hospital.
Because they arent painful, or dangerous, we opted to leave them. If later they become unsightly, we can reconsider. The one on her side he was unable to find with the laproscope. We will see what the future holds for that one...personally, I havent seen it in months, so I am not too worried.
I havent exactly breathed a sigh of relief because sometimes the stress of surgery sends her into a whirl wind of other problems. Give me 7-10 days and I'll relax :) Thank you for all the kind words, the prayers and well wishes. We have the worlds best support system and I am so very, very, very grateful!
I'll post again in a couple days barring nothing to exciting happens...we dont need any more excitement!
2:15 and we are on the way home!!!
12:50 They are done! They were able to fix 3 of the hernias, so she has 3 small incisions to recover from. Still asleep, but looks great!
It is 11:15 and Maddy was just taken to the or. She was high as a Kite when she went back and had us laughing. Pray for him to be able to fix everything he can.
08/31/08
This Wednesday Madison will be having her hernias repaired. She has 6 or 7 now, I am not sure how many he will go after to fix until he gets in there. She will have small incisions for each one, and the 3 more incisions for the laproscopic procedure to look for more.
It is supposed to be an out patient procedure, which I think it will be, but I worry more about the following days. Sometimes Maddy has something done and it kicks off all sorts of other things, hopefully not this time. It is a little different this time as she is well aware of what is going to happen so she is a bit apprehensive lately.The good thing is that Madison REALLY wants the boo-boo's repaired, so she is going in like a trooper. Every time something like this comes up, we deal with a roller coaster of emotions.
In church today, they described us as "spiritual beings having a human experience". Madison's spirit is a gift from God, it was, is and will always be a part of God. Her human experience is a hard one, that is for sure, but it is her spirit that makes her so amazing. Her spirit is astoundingly stronger, louder and brighter than anything on the human level. That is what makes her so amazing.
I am so glad I was taught this today, just 3 days before we under going yet another procedure. We are due at Egleston 7:30am 9/3, and she will go to the OR at 11:00am. I will post as soon as I can to let you know the update. Please check her web site update page.
Thank you for your prayers and love for her.
08/20/08
Septmeber 3rd is coming soon...thank GOD! She is just in terrible pain when she strains, we have to get those hernias repaired! Since I last wrote, she has developed the variety pack of hernias...2 inguinal, 1 umbilical, 1-3 incisional and the one that rhymes with spaghetti on the side of her abdomen.
Hopefully all that need to be repaired will rear their ugly heads before 9/3 and can all be fixed at the same time. They hurt bad enough that she asks me everyday to go to the hospital to fix her belly. Sad. She also developed a sinus infection last week.
Good news is that I think we finally are over it... without antibiotics! Bad news is she still hasnt started school! Now we are so close to surgery, I think we are just going to wait until after she recovers to send her. Cant risk her getting sick so close to the operation.
Maddy showed me yesterday that she can now tell me the first letter of every word! I say "CAT" and she says "C"! I thought maybe she had memorized popular words, but no! She even knew random words like pillow, blanket and lamp! She has to be looking at my mouth to do it which worries me a little, but what a HUGE thing for her! "S"...for smart!
08/09/08
Kids will do anything to get out of school, right??? Well, maddy pulled another good one this week and was admitted Thursday night for a couple days. Seems her lower 2 hernias were making her so uncomfortable that she decided to quit using the restroom :) That caused a chain reaction of events that lead her to the ER for a 2 step program, one of them being wound care because of the damage done to her bottom from with holding.
Anyway, she got some good drugs to help with the pain and anxiety of going, we got our business done in good time...amazing how cooperative she is drunk as a skunk, and we are home by Saturday. (yes, that is a record for us :) Hopefully she can deal with the pain until Sept 3 when she will have her hernias repaired, but if not I have some prescriptions I can fill to help.
Ben says she loves him more on Lortab, she would be one of those people in a bar that are always saying "I love you man!" while they drink. It is pretty funny, gotta find the humor in it all somewhere :) Pray we can make it until Sept 3rd, as her surgeon is out of town until then.
07/30/08
We enjoyed our quiet summer while it lasted! But now it seems like time to get back down to business and take care of some issues. Last week we saw Madison's Ortho Doctor because her right leg is turning in from the hip. Although he ruled out any immediate problems, there may be a growth plate issue in her hip that needs some attention.
We did x-ray's and will compare them when we go back in 5 weeks to see if her hip is growing in the right direction. I feel confident that it is, and that maybe her pain and "funny" walking are for some other reason. Today we saw a Pediatric surgeon and we scheduled hernia repairs for September 3rd. She has one in her belly button, two right above her girly parts (Inguinal) and one more that is very rare on the right side of her belly.
Her walking is even less than it used to be, she wont swim and she walks around with her hands tucked into her waist band like an old man. She says it hurts to cry and to jump...so, it is time to fix them all. Each one will require a small incision and God willing it will be outpatient surgery. I worry more about her cyclic vomiting that usually kicks in after each operation, but we will hope for the best!
Thank God we still have our hospital/homebound schooling, we are already planning on missing a week and we havent even started yet!
07/13/08
Madison has developed some more hernias over the past 2 or 3 weeks and is at the point where we probably have to do something about it. She cant jump without grabbing her belly and she is walking around like an old man with her hands tucked into her pants. Poor kid!
I spoke with the GI doc who feels like it is probably time to take action and we will be consulting with the surgeon this week. Because Maddy has low muscle tone she is pre-dispositioned for hernias. The situation is made worse with her GI system being so difficult. A mesh screen will be discussed, that is where they put a screen in from her ribs to her hips to prevent anymore hernias. Kind of a built in muscle tone, if you will.
NOT looking forward to this, but it is at the point where we have to move ahead and do something as it is really effecting her quality of life. At church today we were discussing that a "problem" is really an "opportunity" that we have to discover. I can see how Madison's many, many problems have become opportunities to us and to so many. We have had the opportunity to... meet a lot of friends, to help other families going through tough situations, to show how easy it is to make a difference in a person's life, to remind others to count daily blessings, to find our own inner strength, to learn to accept and not to react, and most important to me anyway...to just Let it Be.
What have you learned from Madison??? She was not put here with all of these medical issues because something went "wrong", she was put here as an OPPORTUNITY for us to learn something...have you? What have you learned? Care to share? I'd love to hear from you!!!! Wouldn't that be great for her to have a compiled list of what people have learned from her trials? How rewarding! You don't have to give a name, but please go ahead and leave feedback if you have gained something from her, let her know, it wasn't a "mistake" or a "problem", it was an opportunity!
07/03/08
Yesterday we went to the speech pathologist at Scottish Rite to discuss the progress with Madison's speech and language. He was over the MOON, thrilled with her progress since he last saw her 1 year ago! He really feels like at this point she has more of a "language" issue than a "speech" issue. In other words, she can make all the sounds, but the words themselves are out of order or hard to put together.
He said that he remembers back 2 years ago shaking his head, telling me that it just may never come. Now he says that he feels like she "has it" we just have to pull it out :) He said that in the next couple years she will speak as well as anyone else. Very cool! I do love getting good reports, they are sometimes to far and few, but yesterday was great.
As far as therapy goes, I think we have her back in ST, OT and PT full time again! Dan got another new job and the insurance is even worse for therapies, but MUCH MUCH MUCH better for the rest of the medical/dental/vision...we couldnt resist. This policy also has a 5 million cap instead of 3 mill which we could have blow through in no time. The new therapy center, Building Blocks, will accept medicaid so we are back in business!
The speech pathologist was very unhappy that she wasnt being seen in an out-patient center anymore, but understands I cant afford to pay for it. God willing, georgia will realize the mistake they are making by not allowing medicaid to be billed for out-patient rehab.
Okay, lets lower my blood pressure...on a FANTASTIC note, Madison has been getting periodic donations from the Real Estate agent who sold my home and helped me buy this one, all year. She told me last night that she has made many contacts through Maddy and that from now on, when ever she buys or sells a house from someone who came to her with Madison's name, at closing, Maddy will get a portion of her profit!
Just this year, without even trying, it has been almost $1,000.00! Julie has bought and sold for my family and friends for over 10 years, she is amazing at what she does and is really fun to work with. If you know anyone thinking of buying or selling, please forward them Julie's name and at least give her a opportunity to interview. Believe me, you will be impressed!
She has been featured in Jezebel magazine, and was a Top 10 agent in Atlanta magazine. THANK YOU and Remember to tell her Maddy sent you!
06/03/08
I liked leaving the last update up as long as possible since it was truly the best moment in her life, but we have to move on...
Two weeks ago we went to the orthopedic doctor and had some x-rays done. Her scoliosis has worsened yet again and is now at about 22 degrees. We finally heard the word "operation" and that was sickening. Sadly bracing the back doesnt really provide any help in delaying surgery as it might for some other kinds of scoliosis. When she progresses to a 50 degree curve we will have no other option than to put rods in her back. God willing, it will just stop getting worse, but I am realistic and accepting of what very well may happen. Hope for the best, prepare for the worst.
I know several people that have had rods put in, even but never anyone with immune issues. The rods could possibly attract germs, just like her heart repair, her port and her g-tube...it is a foreign body and germs like to sit there risking her further more for life threatening infections. I also worry about her back curving in such a way that her heart, which is way over sized, gets squished before we get to 50 degrees.A lot to worry about, but I am not taking that road. Today is good and thats all that matters. We go back in another 4 months to recheck.
In the good news department...we just got back from Charleston SC! Maddy and Ben had a great time. We swam in the ocean, took a horse and buggy ride around town and lived it up :) Of course, it didnt go off without a hitch, Maddy pulled her button out of her belly just hours before we were due to depart. This button had been threaded in the Operating room all the way down to her intestines! Dan and I were truly beside ourselves!!! Anyway, now we are expert jejunum button removers. Another 5 years off my life :)
05/18/08
Last night was Madison's first dance recital! See her pictures in the Photo Album page! She performed a tap dance and was truly the star of the show. She knew that routine inside and out and did the whole dance with a smile on her face. I was astonished at how much she knew considering how many classes she had to miss due to illness.
They started to learn this dance when she was in the ICU in renal failure! She performed, and I mean really "performed", beyond my wildest expectations. Considering her history, she maintained her balance as well as anyone else in the class and executed moves effortlessly. I am going to have to vote that maybe she quit walking everywhere and just dance from point A to B!
Sunday we were invited back to receive the 2008 Tap scholarship!!!! The director of Centre Stage said that she was taken with Madison's determination and drive. She said she never had a student (in 25 years!) over come more than she has. She said that Madison has such an all the time happiness and a love for dance that every week she is moved and inspired by her.
There wasnt a dry eye in the house. Maddy gracefully walked out onto the stage all by herself, kissed and hugged the director and they presented her with flowers and a Centre Stage Jacket with her name on it. The crowd was overwhelmed with emotion and Madison was so proud of herself. She takes the expression "Live to dance" to a whole new level.
How far we have come, who would have thought? What a fantastic weekend.
04/17/08
We had some good news yesterday! Immunology released her to go to school in August! Provided nothing changes dramically between now and then, she can go to school in Aug, Sept and October and then we will review how she is doing and if she can go in the winter, or be hospital/homebound until spring, and then she can go again.
I am really excited at the possibility of her going to school and having some time on her own, but I know in reality she will miss a lot of school due to illness. I guess we will just take it one day at a time and see how she does. Maddy has been suffering, and I dont usually use or like that term, but yes suffering, with leg cramps the past couple of weeks.
I thought it was her hypotonia (lack of mucscle), but it seems that it might be more of a hypoparathyroid issue. She had that at birth, and it had really resolved itself as long as we keep up the calcium levels. Now it seems that her hands and feet have been cramping and it might by her magnesium or potassium levels dropping.
I didnt realize her sudden onset of dry skin was also a symptom, as well as a couple other things. We are going to do blood work next time she has a "bad day" with it and see what her levels are. That would NOT be good news since it would involve more meds...we have her on only 3-5 meds a day now! It was also the cause of her seizures when she was younger, and I would hate for that to start up again.
We will just keep thinking positive thoughts and hope it resolves soon. Lastly, little miss Maddy learned to spell her name this week and she learned what her last name is...cant exactly "say" it, but she knows it! Smart girl :)
04/12/08
Sorry it has been a while since I last posted...Life has been "normal" so we have been living it up! Ben was on spring break this week and it was the first one I have been home for in years! We were really excited and went crazy spending time together. We took Maddy (in her wheelchair) with us to the mall (she had never been there), and to the Atlanta zoo! She was happy at the mall, and even did her own Build A Bear, but the zoo didnt go over so well.
It was a lot of sensory input and she had a hard time and mostly wanted to go home. Remember, she has a hard time seeing in bright light, she certainly isnt used to so many people, and it was a really warm day. She was on sensory overload! After a while she got a little better and was a bit happier but we only stayed 3 hours and called it a day.
She thinks it was a success and now that she is home she is really happy she went. I changed my mind about trying Disney this year though :) Maybe another year from now she will be more ready. I was excited because we ran into the wife of one of Madison's Cardiac ICU nurses, Kevin. He had been the one to give me some very, very bad news 5 years ago when Madison had sepsis and I was OVER JOYED to have him see her at the ZOO five years later. That was AWESOME, a true gift that actually brought me and his wife chills. I am so happy I had that moment.
This week some of Madison's bills have started to roll in from when we got the surprise that her insurance was dropped. There is nothing under $1000.00 a piece and it is all my responsibility. I am trying to use her fund, but to also reserve some money for up coming bills like the visit to the Pediatric Neurology Ophthalmology visit...even sounds expensive, huh?!?!
She doesnt have vision insurance and she really needs glasses. God willing they will be easy on me since I am self pay. We have coverage once again, thank God, and although it isnt what it was, it helps! Madison will start speech again this week with us paying about $40.00 per visit. Doesnt sound like a lot until you realize that she has about 4-5 co-pays per week. Now that adds up! Gotta do it though, she is at a very critical age for getting her speech better.
ANYWAY...enough complaining :) She is here, and she is happy, and she is progressing leaps and bounds. Nobody can take that away, WE WENT TO THE ZOO!!!!!
04/03/08
We were finally discharged from Egleston again last night. I wish I could tell you what was wrong with her, but even they had no idea. She had run 102-104 fevers for over a week non-stop so they admitted her to make sure it was just viral. I am guessing it was because IV antibiotics didnt help at all either. The last day we were there she woke up and was saying "Polka dots"...which I thought was weird.
So I went over to look at her and sure enough, she is COVERED in a horrible rash. Hardly polka dots, more like red camouflage! They said it could just be a viral rash, and it will go away. It could also be her developing another allergy to adheasive (more likely if you ask me), but in the meantime, she looks pretty horrific. Luck for her it doesnt itch too bad, and God willing it will go away soon.
We had a really hard admission this time. Small room and we were on isolation because she didnt have a diagnosis. Saturday through Wednesday night ALL BY OURSELVES! Nobody came in, and we never left. It was really hard to keep busy that long. Thank God it is over, and she is feeling better.
On Sunday we had the party for Becca! It was a HUGE success. Becca got so many nice gifts donated from so many nice people...THANK YOU! And Maddy even had several more donations, making Becca feel even better about having done all that hard work. We had a great time at Veranda in Roswell...Thank you VERANDA!!! and it was the perfect way to sum up this whole section of Marathon Miles for Maddy.
Remember, if you or anyone you know, likes to run and would like to run a marathon for Maddy, just let me know! Thanks for all the overwhelming support with the last 5 runs, we made a great amount of money for Maddys fund and I think we showed the world what is possible with a little effort from everyone :) THANK YOU!!!!!!!!!
03/29/08
As Becca finishes her LAST marathon for Maddy tomorrow we are sadly reminded why she started this all in the first place...yes, Madison is in the hospital yet again. The whole week she has been running 102-104 fevers with unknown origin.
They thought she had strep, but being sick this long should have her white count up and it isnt. That means her body isnt trying to fight it. She will start IV antibiotics tonight and we will take it from there. PLEASE wish Becca the best of luck tomorrow!
Oh yeah, she will once again be on Atlanta and company this coming Thursday with a follow up story on Marathon Miles for Maddy!
03/16/08
Well, it finally happened...we lost Madison's primary insurance. It was really a mixed blessing I guess. She was in and out of the hospital all winter, especially in Jan and Feb when she was in the ICU. Dan went to a regular doctor visit and was told he didnt have coverage and so he called me. I said we DO have coverage because they have been cashing COBRA payments and send pre-authorization approvals to the hospital as of last week!
Long story short, I got a little ahead of myself and paid the December COBRA payment before I actually go the bill, not realizing it would include the increased rate for January 08. The check was short and so they dropped us like a ton of bricks as of December 31 2007. I found all of this out the last week in February. Come to find that the right hand takes 2 MONTHS to learn what the left hand is doing in the insurance world. They will cover nothing from Jan or Feb, and medicaid (our secondary insurance) wont cover it because they didnt pre-approve anything. Hummmmm......
Where does this leave us??? We scrambled and got on Dan's company insurance, but it is not near as good as our last company. Madison will no longer be able to go to her normal physical therapist unless she has an acute need for physical therapy. Her speech therapy has been reduced to 20 visits per year, she used to have 52, and we cant go until we meet a $3000.00 deductible! Occupational and physical therapy are thrown together so she isnt getting that either. She has been able to resume her aqua therapy, so that is good.
She has been getting speech therapy from the school system which is great, but it is only 1 hour per week...she was getting 2 total. It has been very hard on her not seeing the therapists she has been with for 5 years, she asks for them every day, and we only hope that she will some how keep progressing. For Dan and I, we were already hit with a $50,000.00 MRI bill from January. What can you do??? It isnt like I have to decide how I can fit something like that into my budget!
We will work with the hospital and hope that they will be generous in understand our situation. At $200.00 per month it will take 20 years to pay!!! Thats freaking funny, is what that is...and that is only ONE of the bills we have received. Cant wait to see what the ICU bill looks like. What can we do? Nothing, and they have to know that.
Medically Maddy is doing pretty well. She looks really bad this week and I wonder if something is going on, but her labs from Thursday came back decent. Her kidney function isnt perfect, but it will do. Looks only slightly better than 2 weeks ago, so it may have leveled off, and this is where her kidney function will be from now on after taking such a bad hit. At the worst, her creatinine, which should be .4-.6 was 6! That is really bad. Thank GOD she has recovered so well.
We are so blessed to have that over with. Another hurdle jumped. Friday she went to her GI doc for her post hospital visit and he was truly thrilled with her progress. They talked about Thomas trains and hung out together for a bit. It was really nice for him to see her so "normal", I am glad he got that time with her, and her with him.
Thanks for following up with us, I'll post again soon :)
03/06/08
More of a blog, than an update really but...
Today is a beautiful day. It is sunny and 70 degrees and not a cloud in the sky. I took the opportunity today to open some windows and to sit outside and read for a bit. While I was reading, I came across a phrases that says "prayer isnt magic, it is applied consciousness". Reading that in the beautiful weather, reminded me of the week Madison was born.
It was January and unseasonably warm. She was homebound...nobody allowed in to see her and she wasnt allowed out. There were no "firsts" for her, nothing to experience being locked up, so I took her outside one day to give her something to experience. I had prayed and prayed for her to live. For God to give her a lifetime, and strength to live it. When we went outside, I remember putting her tiny feet into the grass so she could feel the earth under her.
I wrapped her little fist around a bud on the cherry tree. It was soft and furry and ready to burst with life. I placed her face over my shoulder and put her face to the sun so that she could feel the warmth, energy and power the sun had. That was the only day in her first 5 months of life that she was outside. I still to this day think that that day gave her life and the will to live.
She had experienced God, his warmth, his softness and his power all in nature. Everyday it is out there. Last week alone it was out there in a tornado and in a snow storm! I saw God that day in everything and I shared it with Madison who was to young to understand words and lessons of God, but she took notice by applied consciousness.
Almost by osmosis I gave her energy and strength and God. It is a day I will never forget in my whole life. I broke the rules by taking her out, but something bigger made me do it :) I applied my prayer for her to live by having her touch things that live by Gods grace alone. No doctors, no medicine, nobody feeding or tending to them, yet God provides for nature every single day.
Surely he could do the same for Maddy, right? AND HE DID. DiGeorge syndrome is a blessing I wouldnt wish on anyone, so many lessons I never could have learned without her. It is a beautiful day!
02/29/08
This has been a very crazy week. On Monday morning the storm came through and tore our neighborhood apart. We had 7 trees fall and 3 more that almost fell, luckily none fell through our home. It still managed to do over $4500.00 worth of damage to our patio furniture that got flattened, to our fence that got knocked over in 5 places and to the yard.
The next morning it snowed and we had to have 16 more trees taken down imediately because they were weakened by the storm the day before, and were likely to fall on the house. We now have NO pine trees on our lot! Seven neighbors werent so lucky and they had trees fall through the house. Luckily, we are all okay.
It was very traumatic to wake up to screams, and glass breaking and trees falling and I couldnt see a thing. I had to unplug Maddy from her tubes, in the dark, while screaming for Ben to wake up. One of the trees missed her window by only a few feet. Two days later, Ben and I sick with a GI bug. We are home chilling out after a very stressful week.
Poor kid still wont sleep alone after what happened Monday and now he feels bad too. WHat a week! Last Sunday i went to an amazing church to hear Deepak Chopra speak. It was awesome! I went back the next day with Ben and I think we found our new church home! It is a Unity church and I love the way they think about Jesus and how to pertain Him to our lives today.
I am really over the fear and guilt associated with Jesus, I truly dont think that God wanted us to live in fear and to feel guilt in relation to Him. This church truly made sense to me. I'll be back this week! I cant wait to feel even closer to God and to be able to feel good about it all.
02/22/08
Madison has made a HUGE recovery! She is eating a million times better than before she went into the hospital and has picked up almost all of her weight and strength again. She truly is Wonder Woman! She still complains off and on about stomach pain, which is to be expected, but for the most part she is off and running again.
I have to say, there were a strange chain of events that happened the day she got sick that probably saved her life. We saw a pediatrician that we do not regularly see, she may have seen Madison 2 or 3 times ever. She knew (without even seeing a blood work up) that Madison was sick in an not so ordinary way.
I remember when she looked in Maddys ear, that maddy cried out and she thought that it was strange that she was in "general pain" all over. She took so much time with her and really, really paid attention to everything Maddy said and did. She truly saved her life that day. The ER Doc was really on the ball too...sometimes you can get some flaky Doc who doesnt know her or her syndrome and just tries to make a call.
This guy went right to the source calling her 2 main specialists and worked with them until the problem was diagnosed. He never once played a know it all, and in fact took it as a learning experience! The next great thing was that my friend Trisha met us in the ER (she works in the OR, but used to be Maddys primary nurse in ICU) and has known Madison her whole life. She was able to point out things, like her purple color skin, that were really important and I was to nervous to notice.
She got us on the fast track to getting help (the ER was PACKED!!!!) and made sure we were stable before she had to leave. Thank God for her, since I was alone and freaking out. God was really on our side that day. I am so thankful that this is resolving everyday. I actually thought that night, "so this is what is going to take her". It was fast and furious, and I was scared as hell. She hasnt been that sick in so long.
Once again God heard our prayers and he sustained us all until she got better. Since I dont believe that God makes little ones sick, I believe that he sustains us and gives us strength and makes us resourceful in making her better. If I believed in him healing her...one day I would be let down, and I dont think that is the case.
God won't let me down, even when he takes her home one day. He will sustain me then too. Does that make sense? It is a hard reality to sort out why my baby hurts and why does she get better and what happens when she doesnt??? I have to really sort out that there is no blame...it is just the nature of it all.
I love God, and thank him for giving me my continued Faith, Peace and Love for my kids...every day that I have them!
02/15/08
What a turn of events! Today when the Doc's realized that we could do everything we were doing there at home, they let us go! She will have labs drawn here at home everyday until her kidney function is back to normal (God willing) and will be on a protein restricted diet.
She will also be hooked up to her g-tube feeds 24 hours per day for a while. She looks like a little bird. I cant remember her bring this tiny. Ben was thrilled we were here, it was a great night to come home. Renal failure was 5 days in ICU, three on the floor and out the door!
She is amazing and so blessed, and we are so thankful for all the prayers and well wishes. Once again we beat it!
02/14/08
Happy Congenital heart disease awareness day! Oh yeah, and Valentines day :)
You can see Maddy in The East Cobber paper with a small article about CHD and the symptoms to look for in both babies and kids. If you work with kids, or have kids...please check it out!!! (and pass it along)
We were told yesterday that Maddy could go home...next week! I about died because I was kind of thinking she was well enough to go home...um...yesterday! Turns out her kidney function levels are still not good, although getting better daily.
I pitched a small fit and convinced them to think about letting us go Friday. After reviewing a couple things last night I decided to quit playing Doctor, and let them decide. I hate being here, she hates being here, but we gotta do the time so she can get well.
Hopefully, God willing, it will be soon :) We have a Valentines party here at 3pm so today will be better than yesterday. Hope you all have a great day too!
02/13/08
Maddy is getting better and better everyday. her heart turned out to have a leak in every valve, but a little bit more of one in her pulmonary (the one we had replaced). It is okay though, they are all "trace" leaks meaning very, very small except for the pulmonary which is "mild"...a bit more than trace.
It is okay for now and it is expected to be changed out again one day, so I am not surprised. It is the strangest sound I have ever heard though...kinda like plucking a guitar string! Hopefully we will be home soon. her g-tube feeds are being increased everyday...still have some trouble giving her protein, and she wont eat by mouth, but nothing like I thought we would be fighting!
Your prayers saved us yet again!!!!
02/11/08
We are finally out of ICU! That is really great. She went for a very small walk today (Cindy, your going to have your work cut out for you) I guess because she hasnt eaten, she was so very weak. I can see progress just today already though.
Her speech is slurred, her muscles are weak, but her levels are back to almost normal, so that is really great, the rest will come! One of her levels is still pretty hight, and that is pretty much telling us that her kidneys took a hit, but we wont know for a couple days how bad. They started her g-tube feeds and so far, so good.
We will see over the next couple days if her kidneys matabolize okay. I also noticed today that her heart has a weird sound...hopefully it is just because she is so sick, but I have never in my life heard a heart do that! It sounds just like a rubber band! Cardiology will check it out tomorrow. We are also getting a surgical consult for the hernia.
Other than all that, we are well on our way to recovering from this ordeal :) Thanks for all the prayers, hopefully we will be outta here once again real soon!
02/10/08
Maddy is still in ICU. We were hoping to go to a floor yesterday, but she had some blood pressure issues again last night and needed some intervention, so everyone else who can go out is pretty much is going out before us. Maybe tomorrow.
Her spirits were much improved with visitors yesterday. Everyone has been so great to come see her and helping me plan in shifts since we can only have 2 people in at a time. She has really enjoyed the company. Today she is really grumpy (as she says) and I am hoping it isn't her levels being off that are making her that way. We will see what today brings!
Everything still seems like it is on the upswing. I was informed yesterday that it can take 1-2 YEARS for her kidneys to repair. Yikes! Hopefully she will start to eat and then we can see what she is metabolizing and then we can make a plan from there.
Like I said before, this is all new to me...one step at a time, right? Thanks for all the continued prayers, they are working :)
02/09/08
Madison seems much better this morning...still very sick, but not in crisis anymore. They gave her 300cc of fluid and her pressure came up a bit, still pretty low for her, but better! Ifshe can keep her blood pressure down all day by herself,this evening they will consider letting her go to the regular floor. That wouldbe great!
Although Ben came to visit today, her isnt allowed to see her and he doesnt like that. I think he thinks we are trying to pull something over on him by hiding her. A regular room wouldbe better for everyone, as long as she is safe enough to go.
On a personal note, I am VERY behind on thank you notes and such. Please know that everything everyone has done is appreciated more than I can say. I just wish I had the time to say it! We have the best support group I could ever ask for and we are thankful for each and everyone of you!!!!
Hoping for a better day today and every day :)
02/09/08
Yes, it is 3am, so that means things arent well. Madison is having a terrible time keeping her blood pressure up. Usually with renal failure her b/p should be high (not that Mads ever plays by the rule book) and hers sems to be dropping. Her last pressure read 67/38 so they gave her 150cc bolus and it came up to 88/64...better, but not good enough.
Luckily she woke up and was acting pretty much like herself (ticked off because she was woken), and that was good to see. They did do an echo yesterday and said her heart looked good, but I will be calling her cardiologist tomorrow to make sure that HE reads it and feels that way too. We do NOT need cardiac problems now.
The heart and kidneys work so close together it is very scary. I was really thinking today, the way she played with all the visitors, that maybe she was getting better. Now I am worried again. I am SOOOOOOOOO thankful we did not leave the ICU today. It would be me having the heart attack if we were on the regular floor with this happening. Pray for good things to happen.
I know that with any illness it is a roller coaster and that we will be on the upswing again soon. But no sleep tonight, thats for sure. Thank you for the prayers!
02/08/08
Well, there has been very little progress today, but there WAS progress, so I am thankful for that! Her toxic vanco levels came down to 38, which is where it should be right after she is given a dose of vanco...we havent given her a dose in 5 days! That is how slow her kidneys are dealing. Her GI doc came in today and told me that this will be a very long road and that he cant make any promises about what the end of the road will look like.
No idea if there will be permanant damage or restrictions, extra meds...etc. They have her on a gluten free, low sodium, low potassium, low protein diet...basicly all she can eat is the bed sheet. :) As her kidney function improves, so will her diet...Thank God! I cant even order a tray without 2 people to consult with first.
She had some vistors today (thank you guys!) and that really cheered her up. I actually even left and went to dinner while Mimi and Papa babysat in the ICU(they are very brave :) I thought maybe today we could move out of the ICU, but her primary doc said not a chance in he#$. I guess I am looking at a day or two more. It makes me nervous to see how scared they were/are. One Doc even said this was the sickest he has ever seen her.
I guess I am glad that I didnt realize at the time just how bad..just how close. Thank you for the prayers, they are working! hope to have more good news tomorrow!
02/07/08
She is still in the ICU, but seems to be a bit better this afternoon. her toxic levels came down from 68 to 58 and although we are happy that they dropped by 10, she is still 18 over the max. If she continues to progress we may escape dialysis :) Keep praying, she is a pretty sick little girl right now and even her Doc's are worried about what damage may have already been done...you dont see them worry too often.
02/06/08
Madison was admitted tonight into the Pediatric ICU for Renal failure. She had sudden loss of her kidney function due to the IV antibiotics and has basiclly had an over dose because the kidneys were not clearing the antibiotic.
Levels should be between 10-40...hers are 68 after 48 hours WITHOUT any more medicine. They are watching her very closly in the ICU tonight in hopes that her levels will come down a bit by morning. That will be a good indicator of how long she will be "sick".
If the levels do not move, they will look into dialysis to remove the toxic levels from the blood. PLEASE PRAY that the levels are lower by next blood draw. This can be very, very serious and she needs to get better! SHe became very sick very fast...she can get better very fast too!
PLease pray
01/30/08
I havent updated in a bit because I was honestly waiting for things to change. I guess they have a bit, Madison's TPN was reduced to every other night for 12 instead of 16 hours. Thats a help, I guess. To be honest, I am so tired and so over all this stuff I cant even begin to tell you.
So many times people say "I dont know how you do it" and I kinda laugh it off, because the running joke is...what choice do I have??? Now I catch myself considering my choices, which isnt good. I think, if I sleep one more hour would it REALLY be that bad if her meds were late? yeah, it would, so I get up and do it anyway.
You know the little angel and devil that sits on your shoulders fighting? Mine are at serious war with each other and I dont know who I am rooting for sometimes :) Just a small view into the life of Madison's medicine schedule...
- 6:00am hook up IV antibiotic
- 6:45 unhook G-tube feeds
- 7:00 dose 5 med's via g-tube
- 7:00 unhook IV antibiotic
- 7:30 hook up second IV antibiotic
- 8:00 unhook IV antibitoic
- noon unhook TPN
- 12:30 hook up IV antibiotic
- 1:30 unhook IV antibiotic
- 3:30 hook up IV antibiotic
- 4:00 unhook IV " "
- 6:00 hook up another IV ""
- 6:00 dose night time meds via g-tube
- 7:00 unhook IV ""
- 7:30 pm Hook up TPN for the night (takes at least 1/2 hour)
- 8pm hook up g-tube feeds
- 11:30 hook up IV anitbiotic
- mid-night unhook IV " "
- 12:30 hook up last dose
- 1:30am unhook last dose
See??? Remembering that all IV meds have to be hooked and unhooked with everything being sterile. Everything wiped with alcohol and nothing can be touched with bare hands or accidentally brushed with clothing. Not something that is easy to think about when you are half asleep.
Poor Benjamin has to deal with whatever is left of me. He tries to pick up the slack and he is so amazing about handling his responsibilities when he sees me so tired. He is truly the best Son anyone could ask for. Dan has been working like crazy...catching up from China and then being in the hospital with Mads, and he still picks up a few shifts hooking and unhooking when I just cant anymore. he is amazing too.
I guess I just wanted you to have some insight as to why you may find me curled up in a chair catching a cat nap (in public no less) or looking like the cat just drug me in. Although Maddy feels great right now, life is really really hard for Mom. Eleven more days I have this schedule...I think I can, I think I can, I think I can...Okay, I am done complaining now. Once a year or so I just have to stamp my feet, pound my fits and cry for a bit. I am done now :)
01/24/08
Madison is coming home today! She will be on 2 IV antibiotics and tpn, so it is going to be very hard on me, but at least we will all finally be under one roof! I have to spend 3 hours after midnight infusing meds and then start again at 6am. Still, I can do it in my jammies and try to make the best of it.
My vacation was amazing and I tried to really enjoy every second of it even with so much going on back home. It was just what I needed to be able to carry on with all that I do. Ready to dive back into my life!
01/22/08
As many of you know, this was supposed to be my vacation week! I am here in Cayman with a friend, but sadly Maddy got sick with a high fever the morning after I left and had to be admitted.
She has what we now know is a central line infection. They are pretty common with kids who have Ports and who have them accessed frequently, but can be very life threatening if not taken care of right away. Luckily, Dan took her to the ER right away and they started THREE IV antibiotics right then.
She looks and acts 100% better even the very next day. Thank God for medicine. She is on the GI team service there and will be very well taken care of between her Daddy and the team. They have been emailing me in Cayman giving me updates whenever there is a change. It wasnt what I hoped for, but I did know there was a 50/50 chance of her being sick while I was gone. I have had her on my mind 100% of the time, but have managed to still have a pretty relaxing time. Forcing myself to enjoy and live in the moment since I know what I am going back to.
I talk to her everyday and she is happy, so that helps a lot. Please keep her in your thoughts and prayers. We have had to be admitted for as long as 6 weeks to clear line infections and that stinks. We also risk surgery to replace the infected Port...dont want that either. Dan couldnt have caught it quicker, and that was huge. He has really stepped up and done an amazing job at the hospital, I dont think he even thought he could be such a great advocate for her. He is awesome!
I'll post again soon to keep you updated on her condition. If you need a little Maddy loving, she certainly is at the age that she loves the company :) I'll be home...er, at the hospital, wednesday night on.
01/02/08
MADISON IS FIVE YEARS OLD TODAY!!!! We are so excited...for so many reasons. We were told five years ago that if she could pass the five year mark, cardiac wise and immunology wise, that she would have a very decent chance at a normal life expectancy.
We were also told that DiGeorge kids were more prone to some very scary other life threatening issues prior to age five...we didnt get any of those!
We celebrated last night at home and she had such a great time. She understands that she is 5 not 4 now and that because of that she gets cake! She was all about the cake. Thanks to her Aunt Jen, she had 2 of the most delicious gluten free cakes ever.
She is still hooked up to the TPN for 16 hours per day, but last night we were able to feed her 5cc's (1 teaspoon) per hour via g-tube and it went without a problem, so tonight we try 10cc! She needs to get off the TPN because it causes liver damage...(if you are keeping up that is her only GOOD organ!)
God willing it is going to happen this month. Dan leaves for China next week and I am on my own for 2 weeks. We are still trying to get a nurse for 6 hours per day, but so far it averages only 2-3 days per week because of "staffing" issues.
Wishing you all a Happy, happy 2008!
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