Thread: Hunter's story (exceptional kids)

part 2

After the tracheostomy our roller coaster slowed down and he stayed fairly healthy. By this time I had found a support group on line that dealt with Craniosynostosis through the wonderful ladies I met here, I contacted Dr. Ben Carson in Baltimore MD, who agreed to see hunter, In May of 2005 Hunter had surgery to put tubes in his ears, then we flew with angel flights to Baltimore to meet Dr. Carson, It was such a relief, as soon as he walked in the office and listen to what I had to say he completely agreed with me and agreed to do his Craniosynostosis surgery but first he needed to have his Chiari malformation decompressed. We drove up to Baltimore in June 2005 just prior to Hunters second birthday and he had his chiari decompression surgery and also had his cleft lip finally repaired. We went home for hunter to heal before his Craniosynostosis surgery. In August 2005 we returned to Baltimore and Hunter finally had his craniosynostosis surgery at 25 months old. He flew through the surgery with flying colors, was up in his bed playing like nothing ever happened on the third day, he was discharged on the 5th day. On our way home the following day hunter started running a fever and becoming cranky. By the time we got home the next day his swelling was continuing and the incision was oozing. We took him to our ER in our town, they gave him an antibiotic and sent us home, but something wasn’t right so the next night I traveled to a nearby town with a children’s hospital and took him to their ER, He was admitted and diagnosed with Staph infection, and the worst kind of staph there is MRSA staph. He went into surgery the next day to insert a broviac central line because he would now be on IV antibiotics for at least 6 weeks. A few days later he went into surgery with a pediatric neurosurgeon, part of his dura (the lining of the brain) had a small hole in it due to a knick during surgery so he was oozing spinal fluid as well as the infection, the doctor fixed the hole and took out his reconstructed brow bone because it looked infected, then sent it off to pathology and it came back with the MRSA staph and salmonella, so he was then started on a second antibiotic for the salmonella, all the time praying that the staph and salmonella infections didn't go to his brain due to the knick in the dura. he continued to ooze fluid so he went back into surgery and they took out all the rest of the reconstructed bone, so he now had no bone in his forehead region. All was well for about a week then his wound began to leak again, this time it was due to his hydrocephalus it was popping open the stitched up area of his dura, so he went back into surgery and had a shunt placed for his hydrocephalus. (This is now his 12th surgery since he was born). He went home on IV antibiotics, after about 2-2 ½ months of antibiotics he was able to stop them, 5 days later he started having a fever again, he was admitted to the hospital with pneumonia. He had an echocardiogram to check his heart and his ejection fraction (the measurement of the squeezing) of his heart was in the 20’s (ideal measurement is 50-60) so he was now in congestive heart failure. They put him on a ventilator so his heart wouldn’t have to work as hard, and put him on the absolute maximum amount of medication they could give him and his heart function continued to decline it went down to 17, they prepared me for him not to make it because there was nothing left that they could do. (Just to add that this time in our life was when I met the wonderful ladies from Yada and they were tons of support) They started him on a morphine drip and kept him sedated so that he wouldn’t be in any pain. He slowly leveled out at around 22 (keep in mind that through all this he doesn’t look or act sick at all) So they discharged him home on November 22, 2005 on the maximum amount of heart drugs and on a ventilator. He continued to go for echocardiograms without much change it got up to 33 at one echo. Then he went for his next echo in May 2006 and his ejection fraction had dropped down into the 20’s again, It was then that they told me that his heart condition will be life limiting, meaning that they don’t know how long he will live but he will eventually die from this without a miracle. He was admitted to the hospital for 3 days to receive a drug that “tunes up” his heart. In July we went on a make a wish trip to Disney world, just prior to going his echo had his heart measurements at around 50, The last Echo he had in August his ejection fraction was 39-54 which is really good, he goes back for another one on November 8th. At the beginning of October he was allowed to come off of the ventilator during the day and he started prek at a special needs school. He seems to love it, October also brought another milestone for hunter it has been one year since Hunter has had surgery!
. Hunter learned how to sit up at 18 mths old, he learned how to get to a sitting position on his own shortly prior to his 3rd birthday, he is now pulling up, cruising furniture, and taking steps with assistance. As all of you with special needs kids know, he is a joy to our lives. 2006 was a great year for Hunter he was able to stay off of oxygen, he was only admitted to the hospital for 8 days of the year!!! he was surgery free which is monumental, he started prek and is loving it.

Wow! You are such a strong woman! i hope everything continues going well!

Huge hugs! What a special little boy! You're so strong! I hope that his heart continues to be strong!!!!

HUGS!

Wow went through so much in so little time I am glad he is thriving that's wonderful

Oh my gosh!! I had no clue you had gone through so much with Hunter! He's is a strong little guy and his parent's have got to be even stronger to go through so much in so little time!

All I can say is "Wow". What an amazing little fighter you have and what a journey you've been on. I cannot even imagine going through the roller coaster that you have been on. For all that I've dealt with with Andrew, I've never had to worry about his health.

I really and truly believe that God gives us these kids for a reason. And I don't think it's because he knows that we will love them, fight for them, and use our last breath to help them. I think he knows that somehow, we need them because they make us better people for having had the opportunity to be their parents. I know that having Andrew was the single, most influential milestone in my life.

I have a link at work to the site of a woman who has a child with autism. She writes the most amazing poetry. I'll look for it on Monday and post it. Her stuff really applies to all special needs kids.

Thank you so much for sharing Hunter's story. I have to go fix my makeup now so that I can take a van load of kids to a birthday party and your story made me cry.

Shannon

Thank you so much for sharing Hunter's story with us. You are so strong and so is Hunter. Your story really touched me. I will keep you in my prayers. Please keep us updated on Hunter.

I can't even imagine the stress and anxiety of all those surgeries. He is such a fighter. My neice has a 1 chromosome abnormality and has had some tough stuff to go through also and I know first hand what kind of strain (financial and emotional) that can put on a family. I think he is the cutest little boy.

I dont know what to say except you have an amazing family and WTG Hunter for being such a trooper!

My goodness lady, you are one heckuva strong woman. Congratulations on making it a year without surgeries, I had no idea how huge that was for you.
Thank you so much for sharing your story!

Angela ~ what a trial. What a special little angel Hunter is though. I know you've said before how hard and stressful it's been, but he is so worth it. He's a little fighter He was sent to you because you could handle all of this.

I guess you do what you have to do, but I just can't see myself being strong enough to get through all that!

This must have put such a strain on your entire life, your marriage, everything, not to mention Erin! And to wonder how much longer you'll have with him, I just can't imagine. Take care of yourself.

Thanks ladies, it is hard at times, as anything like this would be but the results are worth it, to anyone who says they couldn't do it, yes you could when faced with something that you have no choice but to do it any good mother would and could step up to bat KWIM. it has not been easy, but through it all our marriage has not suffered and our oldest daughter has not suffered, just the other day my supervisor was telling me that she can't believe how well behaved and confident Erin is with all that she has dealt with and I don't know either but We must have done something right LOL.

let me share a little story about Erin, Her and Hunter are very close they would be lost without each other, when he was so sick last year and the doctors told me he probably wouldn't make it, I had to prepare her for that, so they let her come into the PICU to see him (kids aren't allowed in there except for cases like ours) so I told her before going in that Hunter was very sick and he might not come back home this time (since she is so used to him going away to the hospital but still coming home eventually) I told her that he could die. She looked me right in the face and told me no he won't he'll get better. And he did. I don't dwell on the fact that he could die some day, I enjoy every moment I have with him. This is what we have had to deal with since he was 6 months old, unfortunately this is normal life for us now LOL.

Wow...you are such an incredible woman and mother, and Hunter is such an incredible little boy. Your story is so inspiring, it gives me something to think about when I think I can't do it anymore. If you can get thru that, I can get thru this. Thank you so much for sharing.

I am just now reading Hunter's story, not knowing the full extent of what your family has gone through.... hun you are the strongest woman I know and your family has been truly blessed... please hug that lil man for me, Your story made me bawl like a lil baby!! I just had to say, I am so blessed to have met you on here and gotten to read his story, I know I will remember it for the rest of my life! Enjoy your angel, I know God must miss him terribly!

Thank you! Prayers mean so much and are very much accountable for why Hunter is still with us today.

Angela, I don't think I've ever heard Hunter's story before What a truely remarkable little boy! He is such a blessing to not only your family, but to all of us & everyone he meets! You are such a wonderful & amazing Mom! Always doing what's best for Hunter! God Bless!

Awe thanks! to what everyone has said, I am thankful for Hunter and have now learned to focus on his individual goals and no longer group him into typical development and wonder why isn't he doing this. it is amazing the things that a special needs child teaches a person and though it has been very difficult it is also very rewarding, I am glad that he touches so many peoples hearts he has a big fan base LOL.

What a strong little man and family. I admire you all with every ounce of admiration you deserve - and he must be such a joy to your family. I can't relate, but I know that children are children and they have so much love to give and receive, a joy no matter what! He sounds like a sweet special little boy!

Hunter is such a strong boy. When you have time I would love to hear an update.

What an amazing story. You are very much in my thoughts.

thank you. a little update since the original posts. Hunter started walking just prior to his 4th birthday he now gets around all over the place with no problems whatsoever, he blew out the candle on his 5th birthday cake for the first time all by himself. He has had a total of 18 surgeries at this point and has done well. He does still have surgeries ahead of him, another skull surgery and surgery to fix his teeth if nothing else, His ejection fraction of is heart (the squeeze function) is still about half of what it should be but it has been stable at that level for over 2 years now. He is now learning how to jump and his newest adventure is being a big brother and I think he is loving that. thanks to all of you who follow his story. ((((HUGS))))