Jadyn Pechan
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This is my daughter, Jadyn. She is my 2nd child and was born January 28, 2003. She has a brother, Anthony, who is almost 4 and who absolutely adores his little sister. We live in Madison, WI. Right now Jadyn is almost 5 months old and finally home from the hospital for the first time.
The past 5 months have been quite a ride with so many ups and downs, as I'm sure a lot of you can relate to. Jadyn was full-term and there we anticipated everything being fine, until she was born. She had a pretty traumatic birth experience, with the cord left around her neck far too long in an obstetrician's attempt to teach a nervous resident how to remove it. She was too scared to move, and as a result Jadyn went from flailing her arms and legs as she just was delivered, to being limp. My mother grabbed the doctor's arm after this, which prompted him to do something. Jadyn was placed in my arms limp and not breathing. They took her from me right away, and resucitated her for quite a long time to the side of me. She was taken to the NICU, and they referred to her as "a sluggish breather", but when she was intubated at 3 days old, I knew it was more than that. Everyone says they really don't think the birth experience had anything to do with her issues now, but it'd be quite a coincidence to me if it didn't. Over the past 5 months, so much has happened. At first, a neurologist told us that Jadyn could not see, would never eat on her own, walk, talk, and that she would have severe epilepsy. She told us it was a good possibility that she would never even breathe on her own. She said her brain was very underdeveloped and was just not telling her to do these things. She suggested we remove her from the ventilator. 24 hrs., later a neurosurgeon said that he thought putting a shunt in Jadyn's brain may help some of her symptoms, since she was now developing hydrocephalus. He pointed out a hemorrhage within one of her ventricles on her CT scans to me. It's never really been explained to me very well why she could have had a hemorrhage, or why she acquired hydrocephalus within the week after her birth, if this all supposedly happened before birth. Throughout her whole first few months, many professionals spent their time trying to tell me why I shouldn't put Jadyn through this or that... including the surgery to place her shunt and her tracheostomy surgery. I chose to have both done, and looking back I don't know if it was out of selfishness or if I really did believe she'd be okay one day. After the shunt was placed, it wasn't a huge change, but she did begin breathing more and more on her own. She got to the point where they were going to extubate her and she failed miserably. After a few more attempts, and unclear reasoning as to why this was happening even after a couple bronchoscopies, we went ahead with a tracheostomy. A couple days later she was a new baby! She became so alert, started to smile, and started to take some feedings through a bottle. She's mostly progressed since that time, with a few setbacks. She's had one shunt revision, and went back through the ICU on a ventilator for awhile. There was a time that we were told there'd probably never come a day where she was okay to GO HOME, but after we were trained in trach care and felt confident with it, she came home. She was transferred to another hospital for us to get trach trained, and because of this she got a whole new team of doctors I absolutely LOVE. Her new neurologist tells us what he thinks, but he is very quick to point out that he does not KNOW what her future holds. It is obvious now that she does see, she has been taken off her seizure meds and as of yet, has had no seizures ever in her life, she takes some feedings orally but is still supplemented through g-tube feedings, and she is developing new skills every day. Jadyn's primary diagnosis is cortical atrophy, along with acquired hydrocephalus. They think the reason for needing the trach is subglottic edema due to being intubated for so long. We're looking at doing a bronch sometime toward the end of the summer to see if there's a possibility of her being decannulated.
I am so glad that I found this page! It's been so informative and helpful and it's SO great to talk to parents in similar situations. I don't feel so different from everyone else when I talk to some of the people I have met through this website. If there is anyone reading this that is in my area, feel free to e-mail me at AmandaRae999@aol.com.
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Update, October 7, 2003: Jadyn is now 8 1/2 months old. She just recently got another bronchoscopy because they thought it would be easy to do while she was being sedated anyway for double inguinal hernia surgery. We found out a few new things about the reasons she has a trach. They confirmed the fact that she had a great deal of subglottic edema (swelling of the airway), and that there was a lot of scar tissue. He said the fact that she has reflux is not helping this out at all, and that if it wasn't resolved by the time she was a year old that they would do a Nissen. We also found out that she has a lot of cysts in her airway and on her larynx, which we don't know the cause of. Also, he said it definitely looks like she has tracheomalacia (floppy airway). We did find out, though, that her vocal cords are both moving fine. Her ENT said that maybe when she gets bigger they'd talk about removing the cysts, and grafting some cartiledge from her ribs to use in her airway to "open it up", but that we won't know for sure what is needed until she is older, and that he wouldn't think about doing a surgery like that until she was older anyway. A VERY positive thing also, is that this is the first time Jadyn has been sedated where she has not come back on a ventilator. She hasn't really breathed well under anesthesia in the past, so I really did expect her to come back on a ventilator. Not only did they not have to put her on a vent, she also never had her oxygen turned up (which is at 30% while she sleeps due to apneic spells and shallow breathing). She was in and out after a one night stay, which we were very pleased with. Overall, she is doing wonderful. She is an extremely happy baby, and is smiling all the time. She is starting to try to roll over, she is reaching for things, and is so cute when she just lays there and can entertain herself with a toy. It seems like every day she is doing something new.
Update November 2003: I took Jadyn to a doctor appointment with her pulmonologist in mid October, and we discussed the results of a sleep study she had a couple weeks earlier. During the day, on the artificial nose with no oxygen, she is fine and her O2 sats are in the upper 90's most of the time. The sleep study showed that when she sleeps, she had several apnea spells, and when she was breathing it was very shallow. She desatted to the upper 60's a few times, and never saturated higher than 85 without oxygen or ventilatory support. That day, they admitted her to the hospital to configure some ventilator settings, and train us on how to use the ventilator at home because we didn't have one before. She stayed in the hospital for a week, and she is now at home with an LTV 950 ventilator. She is on a breath rate of 25 while she is asleep, but she is able to take spontaneous breaths whenever she wants. It seems to be helping a lot, she seems to be a lot more rested. While she sleeps, she lets the ventilator do all the work, and rarely breathes spontaneously. When she wakes up, she usually attempts to pull the vent off, because she doesn't like the feeling. She is still fine just on the artificial nose or trach mask with no O2 as long as she is awake.
The other day she decannulated herself accidentally for the 1st time. She had woken up and tried to pull the ventilator off, and the trach came out with it. We got another trach in without any real problems, but she gave me a scare. Jadyn also has a lot of problems with her tummy and has since birth. She is extremely distended and it keeps getting worse. We have tried a lot of different remedies, but none have helped. We found out from a scan that her intestines are swollen and she may have Hirschprung's disease, or something else. She will be getting an endoscopy and rectal biopsy towards the end of November.
Update, February 2004: Jadyn's belly has been deflated! I just wanted to send in an update explaining what has been happening recently. Jadyn has had serious issues with her belly getting larger and larger since she was a couple months old, and no doctors had been able to explain why. They treated her everything from possible allergies, to constipation/gas, without any positive results. Recently, she had stopped having wet diapers and having many BMs. Her spine had started to curve, and her breathing was being affected. Last week, I called her pulmonologist because she is the only doctor who takes my concerns seriously. Her neurologist, gastroenterolist, and pediatric surgeon had all shrugged her problems off. We had a routine appointment with Jadyn's pulmonologist. When she saw how much bigger Jadyn's belly had gotten, she got a pediatric surgeon to come look at her, who again suggested laxatives, enemas, and putting in another g-tube (which she just had taken out because she doesn't use it anymore and because it was forever infected due to the stretching of the skin on her stomach) to vent air. I was adamant about the fact that it was NOT air, and that it was NOT constipation causing her distension. I was so frustrated that no one would listen. I insisted that she get a CT scan, which no one had ever given her of her abdomen. Her pulmonologist (anyone else see anything wrong with a LUNG doctor having to do all this?) ordered an abdominal CT. I insisted on this because I KNEW they would find something other than air in there. I went with her for her scan, which she did not have to be sedated for because she was fine about laying still for it. Immediately after the CT was completed, her pulmonologist came out and said, "It's ALL fluid!" Jadyn has a shunt for hydrocephalus that ran from the ventricles inside her brain to her stomach to drain blocked cerebrospinal fluid. Her body was then supposed to absorb it, but wasn't. We knew this a LONG time ago, but the neurosurgeon was sure it was AIR and not fluid. Come to find out, it was TONS of fluid. Right after that, the pulmonologist called the neurosurgeon, who was "shocked" that it was, indeed, cerebrospinal fluid that had been accumulating in her stomach since she was two months old. He said that to fix the problem, he would have to switch the shunt she had draining into her abdomen (VP shunt) to a shunt that drains into the atrium of her heart (VA shunt). The fluid would then be circulated and absorbed throughout her bloodstream. This type of shunt is a bit more involved, obviously, because it involves the heart. In general, it needs to be revised more often, and has a higher risk of associated problems, such as more serious infections, and heart and lung problems. She was admitted to the hospital on a Friday night, and taken to O.R. early Saturday morning for the surgery. It took a bit longer than was expected, but everything went as it should. They again shaved a small part of her head, she has an incision on her belly, and one on her neck. The one on her neck is a great potential for infection because of her trach being right there. They had me clean her with a surgical scrub a couple times a day, and use these plastic drape like things over the area to prevent any secretions from her trach from getting into the wound. That Friday, Jadyn was 22 lbs. and some odd ounces. On Saturday afternoon she was 20 lbs. At her last appointment, she was 18 lbs. Her stomach is SO much smaller. The rest of her continues to grow. They told me that by looking at her CT scan, they found that her lower bowel had been compressed, and that her urethra had been compressed, making it difficult for her to urinate or have BMs without straining, explaining the lack of wet or dirty diapers. NOT
constipation or a UTI. Since the surgery, she's been having so many wet diapers, I forget to change her because I never had to this often before! Also, they said the weight of her abdomen was probably cutting off blood flow to her legs, which is why they were always so cold and purplish-blue. And why her feet have hardly grown since birth. They also said that this was probably the reason for her double inguinal hernias a few months back. I got to take her home the day after surgery, because I let it be known that I felt I could take better care of her at home than anyone else could in the hospital. Since the surgery she has been 10 times happier, she went from a size 5 diaper to a size 3, went from wearing a 2T to wearing mostly 9-12 mo., lost 4 lbs., and basically EVERY pressing issue she has had recently is resolved.
Jadyn also recently celebrated her FIRST birthday on January 28! It was wonderful. She got lots of presents and LOVED eating and making a mess of the cake and ice cream!
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Update February 2005: Jadyn turned 2 on January 28, 2005! She had a big party with family and a few friends, and loved digging into a ton of cake and ice cream. For the most part, the past year has been more calm than what we've experienced in the past, but the last few months have been a bit "up and down" again. She made it through last winter with nothing more than a slight cold from time to time, but this winter she's gotten pretty sick a few times, once needing to be hospitalized for a week. That time she had Influenza and Strep. She hasn't been taking these "little colds" as well this year, and usually ends up needing quite a bit of time on the ventilator and oxygen when she gets them. We also found out that she has a subdural hematoma, due to the shunt for her hydrocephalus and her ventricles going down. Her head is continuing to grow at a pretty fast rate lately, so we are having to travel to Milwaukee Children's Hospital more frequently for CT scans and neurosurgery follow ups. We're not sure what is causing this yet, or if she'll need another revision, or to have this hematoma drained anytime soon.
On the plus side, she is growing like crazy lately. She loves to eat. Anything that she doesn't have to work too hard to chew, and that tastes pretty good, she'll eat. She went a long time without gaining much weight, but since she's been drinking Pediasure/Kindercal she's grown so much. She is starting to look more like a little girl to me, and not so much like a baby anymore! She is also ALWAYS smiling. She is always SO happy, and I couldn't be more thankful for this! If she's not smiling, you know that she either needs something to eat, a diaper change, or she is getting sick. She rolls everywhere she needs to get. She has mastered rolling! Whatever she is unable to do physically, she finds a way to modify. It's so cute! If she sees the TINIEST piece of something 10 ft. away that looks like it might be fun to chew on, you can bet she'll roll over there within 5 seconds. She doesn't sit or bear weight or anything yet, but I think that she'll master these tasks eventually also. If not, that's fine too, of course! What is most important to me is that she is happy, and of course that she is at home and healthy as much as possible!
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Poetry Page Poems by Jadyn's Mom Amanda
