Madden Update: They switched his ventilator settings to CPAP, which means he is breathing on his own now with the number of breaths he is taking (he still has the tube, but isn't getting an extra number of breaths from the machine). He does still require extra pressure to make his breaths big enough, but this is definitely a huge step in the right direction. We just hope his blood gas shows that he is tolerating this change. His next gas is at 8 tonight, so we just wait and see... I now know more about ventilators than I have EVER wanted to know! UGH!! :) All of my critical care nursing friends, my hat is off to you all!!
Madden Update: We apologize for the delay in posting an update. Today was just one of those roller coaster tough days in the ICU. Madden is ok, but some issues have crept up. 1.) His left lung doesn't look great on the xray. It looks a little collapsed and junky. He is still oxygenating ok on the vent, but has had a ton of secretions from his vent. This probably means his cold or aspiration might be a problem. We will see what the x-ray at 4am shows. 2.) We are still weaning his vent settings, hoping he can work off from more of the support. We think we pushed him a little too fast today because his blood gases looked awful this afternoon. They improved this evening after we upped some of the ventilator support, so we are repeating the blood gas again at midnight to see if we need to change any additional settings on his vent. 3.) Our little drug addict is experiencing a little withdrawal since we stopped his oxy yesterday. I told him this had NEVER happen when he is older. He is better tonight after we added some of his meds back.... Druggie :) So, as I told Tiffany today, he will have cool scars and an addiction... chicks will REALLY dig him now... (I'm really trying to find humor in all of this). We are hoping we can wean down some of his meds over the next few days to get past this. 4.)Madden was just very uncomfortable today and required a lot of sedation *different meds than the withdrawal* so he had to be sedated most of the day, he started acting more like himself this afternoon and we finally got some play time in. So, today was a tough day emotionally because we are scared. We just hope the next time we try to get him off the vent will be successful... Our poor guy has some work to do to get to that point still. Thank you to everyone who asked how he was today. We were still trying to process a challenging day before posting... Thank you for the support.
Thank you all for your continued support. For those not on facebook, I wanted to send an update on Madden. He is doing amazingly well after his surgery. We should be moved out of the ICU today (assuming a room is open on the pulmonary floor). Madden has been so strong and is already moving his neck well and holding his head up without pain. Also, he hasn't needed strong pain meds since yesterday morning. He is the strongest little boy I've ever known. I am so proud of him every single day. The plan moving forward is to allow Madden time to recover from this surgery and hopefully have significant weight gain before his chest expansion surgery. The doctors have not given us a definitive date of his VEPTR surgery, but the plan is to have the surgery in 4 short weeks. Thank you all again, we couldn't do all of this without your support. Thank you.
Madden update: Tomorrow morning Madden is having surgery on his neck and the base of his skull. We are absolutely terrified. Please keep our sweet boy in your thoughts and prayers tomorrow as tomorrow will be a very hard day for him and for us.
HAPPY HALLOWEEN! I wanted a Super Man costume for my little super hero for his first halloween, but since we are here in the hospital that will have to wait. Instead my little pumpkin gets to wear his pumpkin jammies to celebrate!
Madden Update: We were moved out of the PICU yesterday afternoon to the pulmonary floor (that's right an entire floor just for kids with lung issues... Did I mention I love this place?!?!). The pulmonologist is great also and I can't get over that he knows Jeunes so well!!
We met with the neurosurgeons yesterday and Madden needs neck surgery. The issue he has is called spinal canal stenosis, where the bone off his first vertebrate is putting pressure on his spinal cord. This is a very sensitive region of the spinal cord and this surgery could actually have positive impacts on his respiratory rate if everything goes well. I am so scared of him having such a major surgery, but it is necessary because if it wouldn't have been found it could have led to paralysis. The surgery is scheduled for Friday.
Until then, we are working with the pulmonologist. He has ideas for how madden can gain weight easier. Madden takes in enough food/calories but hasn't been gaining weight well, so we are trying CPAP at night. He says in his Jeunes patients this has really helped them gain weight because even though he maintains all of his vitals great all of his energy and calories go to maintaining that, so we will see! Yet another reason we are so happy to be here. Each specialist we see looks at Madden in his entirety and thinks of other things that could influence his care!
Thank you all again for your tremendous support. We have been in Philly since Friday and things are moving along. We are so happy to be here. The doctors in Florida recommended a major GI surgery for Madden, which is why we sought a second option. We are very glad we did because the doctors here have been able to "fix" Madden's GI issues with changing his feedings with his current g-tube and with medication. We hope this continues to work for him.
Today was a very sobering day as it was finally confirmed that Madden does in fact have Jeune's syndrome. We met with the specialist and be confirmed the suspected diagnosis. Even though you have mentally prepared for something hearing it from an expert really shatters your world.
But, like everything, we must move forward. Madden is being transferred within the hospital to the orthopaedic floor tomorrow where we will begin extensive testing in preparation for the VEPTR (chest expansion) surgery. The specialist here said this surgery is a "life saving surgery". Very hard to face when looking at your almost 5 month old little guy...
So, we will know more in the coming days/week. Thank you all again for your love and support. We are grateful for our wonderful friends, family and the kindness of strangers whom we have never met but are helping to support the Madman! Thank you.
Woo hoo!! Today's the day! We just got our room assignment so we're headed to CHOP!! ACH is assembling their flight crew and then we will go. Thank you to everyone!!! We are looking forward to being in a place that can help Madden, it is a really great feeling!!! Thank you again!
Madden Update: I was just told that hings are FINALLY moving forward. CHOP has been completely full this week so we haven't been able to go there, so we have just waited at all children's, but tomorrow we will fly there! He has a room guaranteed!!!!! It's been a long week full of a lot of frustration, but things are finally progressing. We were starting to get very nervous because along with his GI issues that will immediately be addressed, he has a HUGE pulmonary function test next wednesday and knew we couldn't miss that test. After that test we will know what percentage of "normal" his lung function is. We are hoping for good results from that test and like I said its a big deal to finally be able to have this test! Please keep madden in your thoughts/prayers tomorrow as I am so scared how he will do flying because of the altitude and pressurization changes affecting his breathing...
Just a little update: Wevare still at All Children's Hospital. The hospital is in the process of coordinating everything with CHOP. We think things are moving forward and we should leave tomorrow at noon. The hospital is just waiting on insurance approval for the transfer. Madden is doing good, but needs to see the specialists so we can start to move forward. We have spent a full week in limbo trying to get things finalized for the transfer. It's very frustrating because I want to fix it all and so much is out of my control. Please keep madden in your thoughts and prayers tomorrow for the flight. We are very scared with how he will do with the change in pressure and altitude and how all of it combined will affect his breathing. Thankgoodness the experts from ACH will be on the flight able to take care of him should he pull any stunts. Please madden be a very good boy tomorrow!!!
When Bailey was little I celebrated her milestones and was filled with joy each time those were met. With Madden, some milestones have been a little more difficult, but on Thursday this crazy kid continued to prove the doctors wrong when he rolled over!!! Having a kid with special needs who has been delayed physically is tough and when he rolled over ON TIME it was something to celebrate!!! This kid amazes me!!! Who says he needs physical therapy?!?! Go Madman Go!!!
I am humbled by all of the support we have received. Thank you all.
Madden Update: Great things are coming his way!! Madden is heading to CHOP either Monday or Tuesday (depending on the medical flight)!! We couldn't be more excited for our strong guy!! There he will get the best medical care this country has to offer!!! Go madman go!!! Never take no for an answer!!!
Our miracle Madden came into this world crying and screaming, which is normal for most babies, but this is something we were told Madden would never do. Just like his brother Jake, we were told Madden would not live long after he was born because of a very rare genetic condition. Well, Madden has a way of proving doctors wrong and on May 25th, did just that. Madden has a rare condition called Jeunes Syndrome http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/jeune-syndrome/ and due to its rarity the doctors are unable to treat him at our local hospital. He likely needs multiple chest expansion surgeries called the VEPTR procedure. The specialist that has agreed to see him is located at Children's Hospital of Philadelphia (CHOP) and we will be traveling there very soon so he can finally be evaluated by the experts. The costs associated with having a child with special needs are extraordinary. Many people have asked how they can help and for now this is the best way to help Madden and our family get to the doctors who can help him. We appreciate all of the amazing support we have received from friends and family. Thank you so much in advance for helping our little guy get the help he needs to continue the fight!
Your donations will be used for Madden's medical expenses and travel costs associated with the trips to and from Philadelphia for the family.
Thank you again. Love, The Sheridan Family