moving up and hopefully OUT!

• Pictures:

• I'll take a nap and then I'll execute the rest of my escape plan.

I love my new hallway greeter job. My first nurse and girlfriend Megan made me this hat on my first day here! Hi Megan! No wagon rides post op....it reminds me of my ride to surgery! stroller rides are cool. I may try the wagon again soon.

• There's this really cool game...my opponent tries to use as much tape as possible to keep this light on my toe and I try to pull it and chew it off...I ALWAYS win!!
• Who knew eating could be so much fun?
  

Jerry moved to the 5th floor which a good move toward home. It is not so good space wise...we are really crammed in there with another family. Jerry has been getting back to his old self pretty much...especially today. Yesterday he had an echo (heart ultrasound) that showed his heart function was declining. So they had to return one of the IV meds they had taken off. They test his blood gasses too and those were bad but now improved a little so they took him off the IV meds and moved him to the 5th floor. They will redo the echo on Thursday. He is eating like crazy (compared to the 2 months prior) and it is so nice to see him eat without pain or upset. We have had a lot of freedom with being unplugged from the monitors and that is a great feeling too. The monitors are kind of pointless for JJ since he pulls everything off. The monitor always has question marks!

Friends Jen and Trish came to visit last night and brought a few things we needed. It was great to see them. They maybe got a smile or 2 from JJ but he was pretty crabby from not napping. HE has rearranged his schedule so that he naps from 4 to 6, goes to bed at midnight, and plays in bed from 4 to 6am.
Isaac Has been in Cleveland since Thursday. He had a fever the first few days there so That was hard (only for me!). But he is having a blast with his cousins now.

I am starting to think more about what we have been through and how amazing everything is. It is so scary to realize what danger we have been in over the last year. We are so thankful we got here in time . I may continue to worry more than before when he exhibits changes and will probably be more assertive about requesting echos more frequently if I am concerned. For a while, he will have them weekly and then monthly anyways. Thanks for all of your thoughts, prayers, and keeping up with the blog!

Yesterday and today

From left to right (Is it obvious that I have trouble with this photo program?)

You can leave me alone now....I take care of my own heart!

The nurses look much nicer when I am out of that bed!

Terri is coming to visit...I need a new blood pressure cuff (peeeuuuuu), a bath, and a comb through my crazy hair!

It was so fun to visit with Terri, I am so glad she came at Tylenol peak!

Yesterday, it was so awesome to see Jerry laugh a little and REALLY smile in his stroller. The day was full of ups and downs. We think he was in some pain still so he would be really awful when it was wearing off. He would just scream if someone came in the room. But when he was on the Tylenol he was pretty friendly and let his guard down a little.

During the night he spiked a fever again and when he felt good from the Tylenol w/codeine again, he played and laughed in bed....and pulled out his feeding tube so he could play with that! He was very impressed with himself. Then he drank 2 ounces...his first oral formula since surgery.

Today he is still on Tylenol w/coedine and the fever starts to go up when it is due. He is on antibiotics so he must just have another virus. He has been very happy and got a ride in the stroller in the halls. When he is in between happy and mad he tries so hard to hold his pouty lips together even though his laugh is trying to break through and eventually does! He is talking some again and pretty playful. Trying not to reinsert the feeding tube but he is reluctant to drink very much.

Doctors are surprised how well he and his heart are doing. The echos of his heart are showing improvement except for something with the septum looking "different" recently. Hopefully he will get on all oral meds by Monday (if the echo looks good) and then get ready to go home by Thursday or Friday. It seems like we have been here for months even though everyone here is wonderful.

Isaac went back to Cleveland last Thursday with his grandparents. He developed a fever that night but now seems to be getting better. We want him to come and be here with us as JJ makes his full recovery but are not sure how we can get him here. John's parents will probably not bring him back until after July 4th, which is a little long for us. I really miss him and know Jerry would be so happy to see him.

Smiles

The switch from morphine was huge. We've grown accustomed to his being mostly catatonic, but last night we noticed that that he had become interested in one of his many IV tubes. So we gave him a toy slinky and what happened next floored us. He began shaking it around and smiling. It may not seem like much but, in that moment, we unexpectedly saw our little boy again. For hours before that we had to stand by as Jerry desperately squirmed around in his bed with the discomfort of needing to cough and the fear of how painful it would be to do so. To this point he has barely cried because of how painful it would be for his little throat, but you could see it in his eyes as they darted back and forth from mom or dad, to the ceiling, to the wall... There was nothing we could do but maybe cry for him. But the new pain med changed everything. He cries now and he coughs when he needs to cough and he really wants his mommy. Our fussy baby is back. Who would have ever thought that would make us so happy?

Feeding Tube Returns

This is John. Jerry continues to progress, it seems that the pain may be less severe as he is more willing to move and roll to his side. He is also more responsive to our efforts to comfort him but still showing strong anxiety when anybody other than mom or dad are close to him. The nurses had to re-insert his feeding tube -- which didn't help his disdain for them much. The feeding tube became necessary because we weren't even close to coaxing him into taking any of his bottle or even a popsicle! So the next big hurdle is to get him to feed normally again, we suspect that, once his throat feels better from the breathing tube, he will be more willing to give it a try.

Sue here. It has been a tough day w/ NO sleep. So they took him off of the morphine and started Tylenol with codeine and he is on IV motrin. His cough is really bad and we can tell it hurts so bad to cough. He let me hold him against me with his head on my shoulder today...that was really nice, although still awkward with all the tubes. John has been trying hook up his computer and work from the McDonald House. I had to call him finally at 4 to give me a break. Still on the up road! We love your comments!

a few smiles but a little shell shock

We were able to hold Jerry today but it was bitter sweet. Very hard to get comfortable with all the tubes and wires. The transition is probably a little painful. He seems very frightened and it is hard on us that he has no idea what has happened to his world and we can't explain it to him. He smiled two times and we are thankful for that. The next steps are getting him to drink something and going off IV meds (a slow process). His mouth looks like it has a few sores in it and he is very guarded. He won't let anything close to his mouth and won't move his lips. We hope each day gets better.

Wednesday, A Rollercoaster of a Day

JJ is doing great! Top left picture "Can we take it out now?" Fevers had persisted the night before but not gotten as high. Jerry's team could not decide weather he could come off the vent or not. I was afraid for him to come off at first, then so excited. Then I was let down when they could not take him off and up again when they decided to go for it. I had confidence at that point as they had taken him off all the sedatives, he was waking up a lot, and his vent was set so that he was doing most of the work himself anyways. It was great! Dr. Raj did not want me in the room (good thing I really like him a lot!) but I watched everything from right at the doorway! It was so cool and such a relief. Dr. Raj (on his own...so sweet!) took this picture of my first minute with JJ after he was extubated.

Friends Karen and Sue came to visit and brought Isaac and John's parents (they have been watching Isaac). This was HUGE for us! It was so good to see my Isaac...I really miss him. And it was good to be able to thank John's parents in person for taking such good care of him. Isaac did come in to see Jerry and did such a good job understanding everything and loving his brother. Jerry's eyes welled up with tears when he saw Isaac.....ROUGH! Then he sang to him and JJ just relaxed like he always does when Isaac sings to him. Having trouble getting the video downloaded.

There was just one scary time since the tube came out. It looked like Jerry was having a really rough time breathing but his oxygen level was fine. It was decided that it was a pain issue. After all, he was 5 days post open heart and on NO pain meds! So a morphine drip was started and all was good through the night!

infection identified....redone

SUNNY DAYS AHEAD IN THE PICU!
Oops. While trying to change the photo, I accidentally deleted the entire post. If anyone has it anywhere somehow in their computer I would love for it to be recovered!! I believe I had said that one of the cultures showed some infection. This was a good thing because they they can treat and we can hope for the fevers to diminish. Jerry has gotten better and is still on antibiotics. I believe the other important thing that I wrote was that Terry Hannon, good friend and nurse practitioner (and OUR pediatrician) was coming to take Isaac to the pool. Can you believe it? Amazing how blessed we are with great friends and family!

fevers and skin sore

JJ had a rough afternoon. He is having high fevers that are very hard to get down and then his heart rate goes way up. They started some strong antibiotics in case it is an infection. He developed a sore under his armpit that is maybe looking a little worse so dermatology will be in tomorrow to look at that. On the bright side, Aunt Sandy came to visit from Cleveland and will make everything better! We are hanging in there and keeping things in perspective..hoping for an easier time tomorrow.

June 22, 2009...moving and weening

Jerry is doing GREAT!! He has not had any complications except for some fevers (maybe a virus or something) and a kind of skin infection that developed under his arm. He is off of the paralytic drug which is allowing him to move a bit. Sometimes he moves too much (cartwheels and such)and he is given more sedatives. His ventilator is being turned down a tiny bit at a time and he is taking a few breaths over it. These are all good signs that Jerry will be extubated with no problem. Likely this will be tomorrow. It is emotional for us when he cries (it is silent grimacing with tears) but we know it is normal and temporary. He is still very "out" and does not remember from one wakeful moment to the next. Big Brother Isaac is doing well. There are definately signs of adjustment but thanks to Grammy and Nonno he went to Prairie fest and also to a parade. Jerry sent him home a Scooby Doo balloon which brought big smiles! Thanks to everyone for their thoughts and prayers!

Surgery Day June 19, 2009

Last night was ROUGH. Jerry was active and temperamental and had a low grade fever on and off. He was pretty angry about the IVs and other attachments and even pulled out his IV from yanking and banging it. Handling him was exhausting and stressful. At 11 pm we woke him to feed him his last bottle before he was not allowed to have any more because of surgery. He drank some and then while laying on me started to shake...shiver uncontrollably. It was very scary. His heart rate sky rocketed and really...I thought I was losing him. He was crying as we tried to give meds and get an EKG set up. No one could figure out what was going on. Then I felt his body get hotter and hotter. He had spiked a fever which explained the shivering and the high heart rate. It was just a little strange how the fever came AFTER the shivers and high heart rate. His fever went down when treated and because of the urgency of his surgery it was to continue as planned.

Luckily, JJ slept well until right before the surgery team was ready for him. We pulled him in his favorite wagon down to the OR. He was a little fussy but surprisingly calm as the doctors took the wagon and wheeled him away. It broke our hearts and we had to keep the prize (a good heart for Jerry) in our minds.

We were kept informed about every hour about the progress of the surgery. Jerry did great!!! He got on and off the heart and lung machine with no problems and had absolutely no complications. We are feeling so relieved and thankful. We thank God for Dr. Carl Backer and his team. Jerry will be on a ventilator for several days, on a drug to keep him paralyzed, and heavily sedated. We are glad he is kept comfortable and safe.

Admitting on Wednesday, Play and wait on Thursday

Jerry was luckily very calm and happy through out most of the procedures as we settled him into his hospital bed. He loved the toys they found him and seemed to be ok with me standing back while he played with the nurses. All of the people that worked with us during that difficult transition were so kind, compassionate, and skilled. Our first nurses were Megan in the day and Kathleen at night. They are really sweet, patient, and so good at their job. A few other helpful people that were so kind to Jerry and I are Dr. Jason Kane and Carrie Gabrys, nurse practioner. We have felt from day one that EVERYONE here would care for JJ as if he were their own! Jerry has been active as usual and it is hard to contain him as we must. The music therapist played with him and he loved wagon rides around the unit...saying "hi" to everyone.

Just to answer a few questions - Our CCMH appt.

Things in the past year after Jerry's diagnosis were stressful and uncertain but stable. Jerry has been very active and happy, although he has had significant problems with eating and growth. Encouraged by our cardiologist, we decided to have a second opinion at Chicago Children's Memorial Hospital where many more kids with JJ's condition have been diagnosed and treated. We simply wanted to ask more questions about causes and possible future outcomes. A nice simple consultation.

Jerry's echo here was done as if he were brand new. Every part of his heart was thoroughly evaluated. Echos since his diagnosis had not been as thorough because he had already had a much more accurate evaluation of the heart with the cath procedure. Here comes the second nightmare... almost a repeat of the first at the same time of year. We waited and waited to see the doctor after JJ's testing. I was by myself with Jerry since John had to work and a good friend had offered to care for Isaac. Finally, the doctor showed up and slowly explained that he had been talking to the heart transplant team about Jerry and that is why he was late. My ears heard "very, very sick, not going home, and open heart surgery." I believe I begged to go home for a few days and yelled that it's not right, it's not true, and he's fine. I continued saying that we needed to go home and get Isaac. Obviously no common sense involved in my shock and panic. I gathered myself together and played with Jerry making his last hour or so before admitting as fun as possible and took pictures, knowing at this point, that he would soon look very different.

This echo showed that Jerry did indeed have ALCAPA...the anomaly completely ruled out during the heart cath procedure last year. Since Jerry's heart was formed in utero, it was receiving the wrong kind of blood (not oxygenated) since the left coronary artery was in the wrong place. The cath films from a year ago were quickly retrieved and DID show the ALCAPA. The surgeon who did the cath last year did not see it. Our cardiologist obviously and without fault based his care on the surgeons findings. Jerry would need open heart surgery as soon as possible to put the artery in the right place. His heart function had worsened tremendously in the past few months. Since the surgeons were busy doing a heart transplant, Jerry's surgery would wait until Friday June 19th. During this appointment and wait for a bed in PICU, we were so thankful for Dr. Jeffery Gossett, nurse Sherry, social worker Sandy Rubovits, nurse Linda, Dr. Kathleen Gambetta, echo tech Dale, and Dr. Elise Duffy. To all of you, thanks so much for your compassion and support at such a traumatic time.

JJ's history

Jerry John was born May 16, 2008 and named after his grandpa who since passed on May 9, 2009. Jerry was a little small, supposedly from IUGI, but otherwise healthy when he went home from the hospital. After a few weeks, Jerry started having some fast breathing episodes which were not too alarming and just seemed like funny new born breathing. However, it seemed to increase and intensify over the next few days, especially after drinking his bottle and out in the warmer temperatures. He still seemed very happy, alert, and active for his 2 1/2 weeks of age. He was having some noisy breathing at night, which we were watching for acid reflux or allergy. At our second appointment to the pediatrician on June 3rd I was anxious to ask about these symptoms but was sure it was nothing serious. Before I could mention it, our wonderful nurse practitioner Terri Hannon and pediatrician Dr. Chad Olsen asked if I had noticed him breathing this fast before. His heart rate was also fast and we were sent for some blood work and x-rays. I wanted to be a good mama and follow through but really thought this was unnecessary. We waited at the hospital for results which were inconclusive. His x-ray showed that he could have heart failure or it "could have been from how he was laying." The uncertainty concerned me as I watched his breathing more consistently become worrisome and thought about the possible effects of my lupus on his heart.

On June 5th we went to Edward Hospital to consult with an amazing cardiologist, Dr. Mehmet Gulecyuz. His first impression of JJ after a few tests and looking at him was that he was fine and we could do an echo of his heart the next week. I was a little anxious by this time and asked if we could just do it then to clear my mind. The nightmare started then as JJ was diagnosed with dilated cardiomyopathy and EFE. John and big brother Isaac came to the office from the Children's museum and we were escorted to the PICU. That was only the beginning of the surprises that Jerry had in store for us.

We spent one week at Edward and then transferred to Hope Advocate (an amazing hospital with the best nurses) for further treatments and procedures. Cardiomyopathy is so rare that everything seemed like guess work. We did not know if Jerry would need a heart transplant or if the experimental treatments would work. Also, the doctors were wavering on weather or not Jerry needed a heart cath procedure where they could look in his heart with cameras. There was one very rare anomaly mentioned that they were confident he did not have based on his heart ultrasound or echo, but still wanted to confirm with a cath. We reluctantly agreed to this invasive procedure because if there was any chance at all that he had this ALCAPA it could be fixed and maybe cure Jerry or at least prevent further damage to his heart. Results were negative and Jerry's original diagnosis of idiopathic cardiomyopathy (possibly due to lupus) was sustained.

Things in the past year after Jerry's dianosis were stressful and uncertain but mostly stable. Jerry has been very active and happy, although he has had significant problems with eathing and growth.