Just Kidding about the Hernias going away!

So most of you know the troubles we have been having lately but I need to do a quick summary of it all anyway. Let's go back to the Hernia Operation/NON-Operation! 


Jake's little and I do emphasize little lungs are extremely sick (some of the worst lungs Dr. Day, a heart surgeon, of Primary Children's said he has ever seen in his career! But he also said he rarely ever sees 400 gram babies live so that is probably why Jake's chronic lung disease is so bad!) Chronic lung disease is the result of being so premature, and being on the ventilator for such a long period of time. But the good news of CLD is that Jake will eventually outgrow it. Lungs produce a new alveoli every 3 seconds, and these alveoli branch off little bubble things and as Jake gets bigger these NEW alveoli should be healthy and as he grows the newer ones should be more numerous than the sick alveoli and eventually take over the lungs. This could take years but it should happen.


Jake has enormous inguinal hernias. The Hernia is actually just the hole that opens up into Jake's scrotum. What has happened is that all of Jake's intestines have fallen through this hole and his scrotum has stretched out like a balloon all the way down to about his ankles. Jake's tummy cavity has formed with NO intestines in it. This has allowed the lungs to take up some of the space normally allotted to the intestines. Also the Liver has transferred over to a spot that it is not normally located. But we were desperately hoping that all would work out during the surgery and everything would be able to be put back together with the help of a silo bag.


A silo bag is basically a fake belly add-on. They would cut open Jake's tummy, sew in this bag that would be an open wound for up to 10 days and would enclose the intestines while the hernia's healed and then slowly introduce the bowels back into the tummy, allowing the lungs to only be squished a little at a time and not all at once. After 10 days then the silo bag would be take out and the tummy could be sewn back up. Sounds like a great plan.... UNTIL.... Jake actually got onto the operation table. Everything went down hill from there.


What happened during the hernia surgery is...The Dr.'s wanted to test out "What can the lungs handle BEFORE we even cut open his tummy?" and the results were horrible. They found that his sick little lungs couldn't work when the intestines got put back into his body. The first attempt was a huge disappointment in that the lungs just simply didn't work and collapsed. The second attempt they switched the ventilator over to the oscilator, which has the function of keeping the lungs open, and when they did this his lungs didn't collapse but they required way too much oxygen to keep his blood oxygenated and too much oxygen causes babies to go blind (and we are already in trouble for that) so this wouldn't work. The third try they used Nitric Oxide which opens up the veins and arteries allowing more blood and oxygen to pass through but this was unsuccessful as well. SO...


Their thoughts were, "even if we put in a silo bag, it will take way longer then 10 days to successfully introduce all the intestines back into the body, and having an open wound silo bag for more then 10 days is extremely dangerous and breeds infection. And babies who have chronic lung disease who contract an infection, 7 out of 10 die." SO... they ultimately canceled the surgery on the operation table and have decided that the best plan is (even though it has never been done before with hernias this big) They want me to bring Jakey home with the hernias. This is extremely dangerous as the intestines could get twisted or poked or strangled at any time and that would be a 911 call immediately with no warning signs. But having this disability on his bado for a couple years also means he can not sit, he can not ride in a normal car seat, or a swing, or crawl or walk. Everything will have to be altered as far as clothing and diapers and things that most people would never have to worry about, but welcome to our life! We took a few days to get used to this idea, but when push comes to shove, there is nothing rory and I could do about it so there is no point to lay and cry about it anymore, and we actually were excited to be closer to moving back to Utah Valley, closer to home, closer to my kids and everything else. And just for a bit we could see a little light at the end of the "Primary Childrens Tunnel!"


I am learning that just when I think life might get back to normal, somebody slams on the breaks and we start moving in reverse! 


The plan after the operation/non-operation... the Dr.'s decided once and for all they needed to know what is up in jake's heart and lungs. They are much too sick to not know them inside and out. So a heart cath was scheduled. A heart cath is a less invasive heart surgery than an open heart surgery but a surgery none the less. What they did was insert a probe into his vein and thread the probe down into the lungs. From there they can inject different medications to see how the heart and lungs react and from that they could pick which meds work best to fix the chronic lung disease and start him on those. Also this surgery measures the exact Pulmonary Hypertention (high blood pressure) in the lungs and the pulmonary arteries (that are actually veins) and could tell how severe they really were. The third thing they were checking for was Jake has a (not normal) 5th pulmonary vessel transferring blood from the lungs to the right ventricle which causes the heart to over pump and send extra blood to the lungs which is a never ending cycle. The Dr.'s needed to decide if this vessel needed to be clogged, transferred, or taken out. 


First the surgery was supposed to be Monday, then it turned into it would happen on Tuesday. Then we were told, oh the Dr.'s wont be here until next Wednesday! What a roller coaster because we knew that if everything went well during this heart cath we were on our way back to Utah valley (barring a few releases from surgeons.) So needless to say we were continuously disappointed after all the cancellations. But then... there was a cancellation on the surgery schedule and they felt it was possible to fit Jake in on Thursday. He got the cath last minute that day and it turned out the best thing Jake's lungs liked was Nitric Oxide, and Digoxine, a heart medication that helps the heart pump more successfully. Also he needed to stay on Sildenifil (which is actually viagra) to help with the pulmonary hypertension! We were set, we knew what he needed and all we needed was to get through till wednesday with no big hiccups and we could be transported back!


Well you know what the saying is, "TAKE TWO STEPS FORWARD AND FIVE STEPS BACK!!!


Jake has decided that he has had enough with the vent tube down his throat. And leave it to him to surprise everybody once again. Tuesday morning, one day before the eye surgeon was supposed to give us the ok to leave, Jake felt the need to take matters into his own hands/tongue and HE took out his own ventilator tube himself... WITH HIS TONGUE! The problem that happened was his heart stopped due to lack of oxygen because his throat and lungs closed up and spasmed  and they couldn't get his tube back down his throat. They gave Jake CPR for 12 minutes, with chest compressions, rescue breathing, the defibulator, and in the end it took a big shot of epinephrine in his IV to open up the airway and get the tube down. 


He almost died. We got called about 15 minutes after they got him back to pink at 3:30 in the morning. Let me tell you how scary it is to hear your phone ringing that early in the morning. IT SUCKS!!! This was also Brookies first day of preschool so there was just so much on my mind that this just was too much to handle. 


Having this happened has changed everything!!! I wasn't able to get to the hospital until after getting brooke home from school, over to her IEP test at the speech room, and to the babysitters. When I got their oh boy did the Dr.'s throw me a curve ball!!!


Tracheostemy. When Dr. Knoll said that word I about fell over out of my chair. I then about bit the head off of everyone in that room for even mentioning that word. A trach tube!!! Why would my little baby need a trach tube??? I said no, I didn't want that, I want to try different things first and I wanted the opinions from Dr. Gerday, Minton and Mark at Utah Valley. To my surprise... when I called them they were EXCITED that Jake could get a trach tube. They thought his quality of life will dramatically improve. He could suck a binky, drink a bottle, smile, interact with facial expression, etc...! 


After calming down, thinking about the positives I went back to Dr. Knoll and told him that if these people said it was ok and rory and I feel better about it, let's do it. I am scared of it, I never thought I would be bringing Jake home on a vent, but maybe if it would let me bring him home, I could get used to it. 


Dr. Knoll said that he would like to try a steriods first to see if we could just get jake off the vent all together and if this doesn't work in one week we would do the tracheostemy. 


So we are on day 2 of this, waiting to see how his lungs react with this decadron steroid. 


One more thing... yesterday Jake had another surgery that I am actually excited about. Every day jake gets poked by needles of all kinds, and his little body just can't take it anymore. I counted 13 different iv lines and blood transfusion lines the other day not including twice a day he get's his heels poked for lab tests. So what they did was put a Broviac catheter into his chest and neck. This was sewn into his body and thread through his skin and veins into his heart area. From this ONE line they can put all his meds, blood transfusions, anesthetics, AND they can draw blood from it so NO MORE heel pokes. Right now every time someone touches his feet he flinches cuz he knows that pain is coming. So I am sooo happy about this line even though it looks really scary coming out of his chest!


Well I have tried to get everyone updated the best I can. His eyes have controversial results. The one eye Dr. said the right looks great but the left needs surgery, the other Dr. said they both look good so we are still waiting on that. And other then that we are still driving up to primary's every day waiting for the results of the steroids! 


I will try to post more on Saturday, I should know the results by then. I know posting is very important and I am very glad I do it because it is my journal of all the events, but it is becoming very hard to find time for everything with the amount of time it take to spend with Jake each day and not to mention Brookie, Cayden and Rory! But I will keep doing my best!


Thanks for the support! Please don't stop emailing me and sending notes of encouragement. I may not be able to respond to everyone, but I appreciate and need each one... especially on weeks like these!