The Glowing Doughnut

The glowing doughnut? Huh?? Well let me explain and do a quick medical update on Eli.


As always I'll start with my typical apology of taking forever to update and what not. Things have been going great and nothing really to report so I tend to forget about this blog. He had a cardiology check up back in June and another checkup in December. Everything looks great and his heart is doing a good job keeping up with his insane energy. He no longer naps and holy cow do I miss that quiet time. He is constantly moving or talking, literally he even moves and talks while he's sleeping. He loves school and enjoys seeing his teachers and friends daily. He does admit he has a hard time listening which I'm not the least bit surprised about. We have had some recent behavioral problems that we are trying to be proactive about and tackle. Unsure about how much of it is outside influences or just his own problems, its been a learning process for all of us.

So the glowing doughnut....

 We are in the process of Eli adjusting to sleeping in his own room in his big boy bed. He has co-slept his entire life so this has been a long and somewhat hard transition. Like most kids, he's scared of the dark but he's also scared of "the glowing doughnut". We aren't sure what that is and he has only given up a little bit of information. From what we can tell it's a small boy who is mean to him but also wants to play with him. He wants to build with Eli but always knocks things down. He says it first came to him in his crib and now he sees it in his room. We have said "well if it's a doughnut why don't you just eat it and it will go away." It has been about a week since he's mentioned him so maybe it is gone.(Side note..as I'm finishing up this blog he told my Uncle Jim about it. So bizarre, like he knew what I was typing about.)  My only other guess on where this is coming from is based on research I've done regarding cardiac kids or any kid who has been through traumatic surgeries or experiences. He could be suffering from Post-Traumatic Stress Disorder and the glowing doughnut is the large circular light that is in every single operating room that you see before anesthesia kicks in. He has had more surgeries than most so who knows if we will ever really know the answer.

 Also, Eli has been asking "why do kids have to die?" We  try and answer the best we can but where in the world does this come from. Without going into too much personal detail out of respect for someone close to me, there was a recent loss. On the night of my finding out about it I happened to be sleeping in the bed with Eli. He sat straight up in bed at 1 a.m. and blurted out "why do kids have to die?" I rubbed his legs and told him to go back to bed. He never once acknowledged I said anything or touched him. He laid back down and instantly was snoring, I don't believe he was awake when he said that. Needless to say it freaked me out to think what kind of connection he could possibly have with the afterlife. A few days after that while I was cooking, Eli walked right up to me and said
"(name withheld) has a sister". The person he was referring to is the one who just lost a future sibling. It is heartbreaking to me as well to think he could possibly be seeing things that could be hard for him to process and make him upset or sad.

 Over the past few months Eli has talked frequently about Grandpa and the conversations and activities they do. For anyone reading this that doesn't know, Grandpa (my dad) passed away in July of 2012. Eli was only 13 months old and while they had a very close bond, Eli really should be too young to have any memories of him.

Majority of the time Eli will just blurt out these things with little or no connection with whatever is currently going on. Before Thanksgiving he told me how Grandpa had helped him fix his cars, my dad was in the automotive world my entire life. On Thanksgiving night while the whole family was saying what they were thankful for Eli without hesitation said "I'm thankful for Grandpa". He also said Grandpa has helped him find his remotes and in particular his remote for one of his cars that we searched high and low for. The thing was missing for months and suddenly Eli found it.

 Last night while I was laying in bed with Eli he mentioned Grandpa again. After stories and songs he typically rolls over and he's asleep but last night he wanted to chat for a few minutes. He heard daddy cough downstairs and asked what that sound was so I told him. He then said "Grandpa had a throat problem and would cough. They gave him special medicine." My dad had throat cancer and because of all sorts of scar tissue from radiation my dad developed a horrible cough. Again, nothing Eli should remember or even know about.

I know I've read many times that kids have a special connection with spirits and loved ones on the other side. I'm very happy that Eli still has a special bond with Grandpa. My mom asked me to ask Eli if Grandpa seems happy and if he smiles, without thinking twice Eli responded yes. That makes my heart smile.

Big News and a little update!

Wow! It has been forever since I last updated this blog and I'm sure there is a ton to catch up on. I'll try to summarize the smaller stuff and then get to the big news and try to explain that in the best way possible.

Since August, Eli has done a great job recovering and thriving post op from stomach surgery. He has a really big scar horizontally across his stomach and in my opinion it just adds to the awesomeness of his journey. We have had no complications since then and everything cardiac wise has been going great.

He did have a rough winter as far as illness goes, I'm pretty sure he set some record for the number of times he had croup. Such a horrible feeling hearing that cough and sometimes fever that accompanied it. We had two emergency room visits since the year started, neither one of them cardiac related.

In February, he tripped and fell into the wood stairs at grandma's house. He hit at the right spot near his nose to set off a horrible bloody nose and we thought it had split open. Since he is on aspirin as a blood thinner there was more blood than we were comfortable with treating at home so off to the ER we went. We had a few xrays done to check for broken bones and a few hours later we were on our way home with just a bandage. The next few days he had a wonderful black eyes but he's a boy and I'm sure there are many more to come.

At the end of March, while we were on vacation in the smokey mountains, Eli had a really rough day of crabbiness with a slight cough. Rafe and I knew his behavior was not typical because he was just acting so horribly. The next morning around 3 am he woke up with a bad cough and was very restless for an hour or so. When I woke up around 8am I noticed Eli was bright red and just burning up. Because of Eli's cardiac condition, once he reaches a certain temperature it becomes an automatic ER visit to check for possible heart failure, etc. It was so bad that morning that Eli even asked to go see the doctor, poor baby! As we were walking out of the hotel Eli threw up all over Rafe. He ended up being diagnosed with bronchitis and an upper respiratory infection with possible signs of pneumonia. He really perked up after the ER so we were still able to enjoy our last day of vacation.

Moving on to the big news:

As many of you know, Eli receives three different therapies a week: physical, developmental, and occupational. Once he reaches the age of 3 he no longer qualifies to get treatment through the state via Early Intervention. At that point the school systems step in and determine if he is eligible to receive early education schooling. He has to have some sort of impairment that "affects his ability to learn". It is slightly different than early intervention because it really has to focus on the educational aspect of growing. While Eli is seemingly very smart and his vocabulary is amazing, he is still behind on fine and gross motor skills.

We had an evaluation meeting a few weeks ago where about 8 different therapists, teachers, nurse and psychologist all played and studied Eli's behaviors and responses to the different tests they put him through. He was a little better behaved than he typically is and I was worried they didn't get to see the true Eli. The one who gets mad and impatient when things don't go as planned the first time. When he resorts to tantrums and hitting when he is told No or asked to do something he doesn't want to do. I left the meeting pretty convinced he wasn't going to qualify for the school.

Yesterday we had the meeting where they went over all of their notes and discussed the plan for Eli. We are very happy to say he WILL be going to school in the fall! It will be 2.5 hours a day and a 4/5 day school weeks, rotating each week. He will be in a blended classroom where there will be some special ed kids and some "at risk" kids. He qualified based off of "other medical needs", meaning he isn't special ed and not necessarily at risk, but that his medical condition has set him far enough behind that they see the need to continue helping him in a structured setting. While at school he will continue to receive both physical and occupational therapy weekly, in the classroom.

We got to tour the classroom and he walked right in with a group of 5 year old kids and had a blast playing with them. I'm sure he will have a great time at school and love being around other kids his age. We look forward to seeing how much this will grow and expand his brain

My favorite little boy!!! 

What a difference a diaphragm makes...

We have been home from the hospital for just over a week now. I'll go over the whole hospital stay and the differences we've noticed post op.


Wednesday August 7th. Surgery scheduled for 3pm. We had already been pushed back once already on timing and we should have known we were in for an adventure. We were to arrive at the hospital at 1pm to start all of the paperwork and meet with the doctors. About 30 minutes after checking in we were informed the surgeon was running late and he continued to run late until Eli finally got into the operating room around 6:40 pm. The surgery was expected to take about 3 hours and he would get a room in the PSHU  (pediatric surgical heart unit) afterwards. The surgeon came out a little bit before 8pm and said everything went great and "it was just a big ole hernia that I pulled down". He also put a few stitches into his diaphragm to put it back in place.

Around 9pm we were finally able to go back into Eli's room and get the run down on all of his tubes and wires and find out his recovery status. This is when Dr. Sajan, the doctor running the PSHU that evening, told us the surgeon had drained 300 cc's of  "milky" fluid from Eli's chest cavity. Say what!?!?!? The surgeon made no mention of this to us and clearly didn't think it was a big deal because he didn't bother to save any of the fluid to send it to the lab to be tested. For those of you who don't know 300cc's is 10oz, the size of a typical baby bottle, just floating around in Eli. I was shocked and scared and not sure what to think. Fluid retention is a HUGE deal after this last heart surgery Eli had. We needed to find out why and where this was coming from.

Rafe and I had already secured a room at the Ronald McDonald house across the street from the hospital. We were just settling in for the night when Rafe's phone rang with Dr. Sajan on the other line. Trust me when I say you never want to see that phone number (we have it saved) show up on your caller id, especially at 10:40pm. Eli's left lung had collapsed and he had a huge air bubble in his chest. We verbally agreed to allow them to put a chest tube in Eli immediately so they can get that air and any possible remaining liquid out. We were warned the lung collapse was a possibility because of all of the fluid they had already drained and just the shock on his lung. His left lung had been drastically smaller than the right one since at least April.

We received another phone call from the PSHU about an hour later saying Eli's lung had popped back open and he was now "satting" at 100%. YAY!! Satting is what we call the oxygen saturation in his blood. Most people are about 97% or higher. Eli has always been around 80% up until his last surgery and he only bounced up a little after the Fontan.

Eli had a few rough days in the PSHU but not anything super major. Sunday afternoon we moved down to the second floor in Hope where it's general care. His chest tube remained in until Wednesday afternoon because it was still draining a good amount of fluid from his chest. They were checking to see if the "milky" fluid ever came back and thankfully it didn't. I guess if it did Eli's whole entire diet would have to be overhauled and everything would have to be fat free. Friday afternoon we were on our way home! No restrictions on food, crowds, lifting or anything!

The first few days Eli didn't really want to walk or move around which has been typical of him after surgery. He is now back to his normal self minus the amount of walking he does. He is very scared of falling and causing himself any pain. He now eats like a true boy and we couldn't be happier. He is now able to burp and throw up (yay?) since this surgery. The Nissin surgery he had done at 1 month old to prevent acid reflux had to of come undo. Eli isn't too thrilled with the feeling of a burp coming up but I'm sure he much prefers it over the rock hard stomach he would have until he was able to fart that air out.

Tomorrow morning we have 2 appointments at Hope and we have to get blood work and xrays done before hand. So we'll get to the hospital at 10:15, do the lab work and xrays, 11:15 post op appointment with the surgeon. That will be a quick 15 minute appointment. We'll have to go out to lunch or something because we don't have our next appointment until 2 and that's with cardiology. Those appointments we always figure will be at least 2 hours long and almost also include some sort of test. Wish us luck and tons of patience!

Surgery #5

We have a surgery date!!! Eli will be going in for his hiatal hernia/ paralyzed diaphragm surgery on Wednesday August 7th (yes like in a few days).

We had our 2nd surgery consultation yesterday morning at Hope and this time the surgeon, Dr. Lobe, was actually prepared and ready to talk surgery. He came in, looked over some papers and spit out the game plan at us. We agreed and we were on our way within minutes. The nurse was trying to schedule us for sometime in September for when the doctors next free day was and he insisted we get in next week. Something must have clicked with him and he realized that it was me who called the cardiac surgeon on him to get this ball rolling because he was very apologetic and actually placed importance on us. 

So let's talk medical......the surgery the doctor is doing has three possible approaches towards it, I'll explain the best I can. Due to Eli's obvious medical history and his freshly worked on beautiful heart of his, the doctor is going to try the least invasive way of surgery. He wants to mess with Eli as little as possible and put the least amount of strain on his heart. The technical name is thoracoscopy repair of a thoracic (hiatal) hernia. This means he will be going into the chest cavity around the rib cage with a tube and will try to expand his chest and fix everything that way. If that doesn't work he will try to do the surgery laparoscopic surgery which will be a few small incisions.  If that doesn't work Eli will be having his stomach opened for a second time, we are hoping it doesn't require that. I would bet that it ends up being the 2nd shot at it that really works. I did hear the doctor say to put him down for a 3 hour surgery. I asked about recovery time in the hospital and the doctor kinda was hesitant to say because we aren't sure how in depth this surgery is going to get. His answer was anywhere from a few days to a few weeks.

I will admit I'm pretty nervous about this surgery, as I am with any surgery but this seems to be a whole different area for me. Eli has had stomach surgery before when he was a month old and I didn't make a big deal about it then. I also didn't realize how big the scars were going to be and that his g-tube site would end up looking like a second belly button. I call this a stomach surgery but it's in fact in his chest cavity, but since they aren't cracking his chest open again its different. Does that make any sense? Maybe because I feel like this hernia has had a huge impact on his stomach i.e. his lack of weight gain since November, his small little appetite, the way his stomach gurgles like crazy as water is going in. Oh well I'm rambling now.

So Tuesday night I'll be getting a call about what time surgery will be and what time Eli has to stop eating and drinking (always a blast!). I'm hoping because his surgery seems pretty difficult compared to this doctors usual circumcision (I saw his schedule was loaded with them) etc surgeries that we'll be put in an early time slot. So wish us luck, send us prayers and good thoughts! My little man is a tough little cookie but he hates doctors and hospitals now and it breaks our hearts. I will update as soon as possible!


Diaphragm Drama

Let's catch up with the past months activities....

Peek a Boo I'm 2!

Eli turned 2 on June 9th!!!! Wow I still can't believe we have a 2 yr old. We decided not to do a party this year since he was just a month out from surgery and germs were still an issue then. Instead, we spent a nice family day at Lincoln Park Zoo and had fun viewing all of the animals. Eli picked Olive Garden for his birthday dinner with just a little influence from mommy, such a smart boy!

June was a pretty quiet month for us as we awaited his surgery consult appointment on the 28th with the general surgeon Dr. Lobes, to address the hernia problems. It was a pointless visit as the doctor was not prepared to talk surgery or actually spend any time checking into Eli's history. After we waited over 3 weeks for that appointment, he wanted us to come back in a month after he had a chance to talk to Eli's cardiologist and his cardiac surgeon. He wasn't sure the surgery was necessary because Eli didn't seem to be in pain or distress. I assured him that Dr. Ilbawi (cardiac surgeon) had told us on the night of Eli's fontan surgery that the hernia and diaphragm most definitely had to be addressed.

Needless to say we left that appointment more than upset because we both felt like we were being blown off. I got on the phone with Eli's cardiologist immediately and begged for them to please do something to speed this process up considering these heart doctors had already cleared him for this next surgery. Well being the amazing doctors that they are, two days later the general surgeon, Dr. Lobe's, nurse was calling and telling us to get a CT scan scheduled. Thank God someone listens to me! We would need to get into the pediatrician for a complete history and physical before they would sedate him. Because of his age and his fear of hospitals, Eli will be fully sedated for the scan. It's always scary for someone to be sedated but these babies sometimes have more issues than most. Thankfully Eli has never had a problem with anesthesia and we hope it continues that way.



Tomorrow morning at 6:30am we'll be loading into my car and heading for Hope. He has an appointment for 8:30 so hopefully we'll be heading home around noon. I honestly have no idea how long these things take because the only other time he's had a scan he was already in the hospital and he only had light oral sedation. They will be doing a chest and abdomen scan so "they can see exactly what they're dealing with".

We had already scheduled our month later retry at the surgery consult so hopefully we can get surgery scheduled then if they don't call earlier. I'm hoping with that little push from cardiology, they will take me more seriously. I will of course update before the surgery once we figure out the game plan. I just realized I haven't exactly said what this surgery is...duh! This surgery will be for his hiatal hernia that is causing his left diaphragm to be paralyzed. The diaphragm is causing his left lung to be tiny and could potentially put a lot of stress on his heart. Also because the diaphragm is up so high his stomach is also up higher than normal, which doesn't really do any bad things that we are aware of. 

On July 5th, Eli took a nice little fall into the edge of our coffee table. He got a deep but small length wise cut right near his left eye. We took him to Edwards hospital in Naperville because they have a really nice pediatric ER and Eli has been there twice before so they have his info on file already. They decided to glue shut the cut even though according to my doctor cousin they aren't supposed to use the glue that close to the eye because it can go into the eye. Gee guess what happened??? They ended up gluing part of his eye shut! They then had to open it back up and that was more traumatic for Eli than actually being glued shut.  The scab and glue have since fallen off and the scar looks horrible in my opinion. It still looks like it could use a stitch or 5. There goes my babies beautiful face :(

On to the not so medical side of Eli's life.....

On June 25th, Eli started his third type of therapy his receives. He now does Occupational therapy weekly with Suzy. We aren't sure how long he will need this therapy because it was originally suggested so we could address some sensory issues that his developmental therapist thought she was seeing. Eli's physical therapist has always disagreed with that diagnosis and it seems like Suzy does as well. We'll still keep doing it for awhile because any help we can get we'll take. So our schedule is now  Monday is developmental therapy with Lori, Tuesday is occupational therapy with Suzy, and Thursday is physical therapy with Meghan.

 July is a fun month for Eli because we have a lot of birthday parties (every weekend) so he gets to see a lot of kids. We have been trying to get out more and enjoy life now that Eli wants to walk more and be more mobile.

Thanks for keeping up with our little guy and all of his adventures. We ask that you keep him in your prayers for his CT scan and sedation tomorrow and his upcoming surgery. Thank you and I promise to update before the next surgery!

Fontan!

Once again I start my blog by apologizing for how horrible I am about getting around to actually writing. We don't have a computer so it is not easy to sit down and write these things out. Let's get started......


Monday May 6th, 2013

 Eli's third and hopefully final open heart surgery!!! We were to arrive at the hospital by 8:30 for the surgery. With a good amount of panic, crying and sedatives we were on our way for a 9:30 departure for the OR. I swear the hardest part is giving him a kiss goodbye and choking back the tears as you tell him you love him and send him on his way.  Rafe, my mom and I all smothered him in kisses and watched him be wheeled away. When he looks back at you through the bars on the crib and he realizes that you aren't following him, ugh the worst feeling ever.



  The surgery went very smoothly and quicker than we expected, about 3 hours. He has never had any problems going on or coming off of the heart lung machine (the thing that keeps the blood flowing through his body while they work on his heart). They were going to fix his paralyzed left diaphragm while doing the heart surgery and it would only require a few stitches to hold the diaphragm down in place. That ended up not happening because they discovered he has a hiatal hernia and that is the reason his diaphragm is so far up. They weren't able to do the hernia surgery then because they were worried Eli would bleed to death. It would be something we need to address in the near future though. The night of his surgery he ripped out one of his central IV's that is stitched into place in his groin and continuously ripped out his oxygen and NG tube.

  Eli spent two days in the pediatric surgical heart unit (PSHU) before being moved down to the second floor which is general care. I was more than unhappy with this decision and spoke to a few different people about it and unfortunately lost the battle. I was assured he would be well watched and if any point I was not happy I could always call the surgeon on duty with my problems. I am happy to say we felt he was given excellent care and attention. Now let me clarify, I'm not saying the 2nd floor is horrible it's just that the nurses typically have 4-5 patients where in the PSHU the nurse has 1-2 so the care and attention is definitely different. With Eli being 2 days post major heart surgery I felt it was a rushed move considering he still had 2 chest tubes in and an arterial IV stitched into his groin. There is high risk for infection with both of those things. Thankfully no problems with either.


Hanging out in the crib watching TV

He was heavily medicated for about 4 days and spent most of his time sleeping so he was able to rest and recover nicely. The biggest problem we had was trying to get him to take these horrible tasting medications by mouth. He ended up spitting out majority of them and it was holding us back from being discharged. We had tried putting them in food and his bottles but then it just turned him off from eating which isn't what we needed either. He ended up getting an NG tube (feeding tube through the nose) just strictly for medicine use. We got a few of the medicines switched over to pills so we could just crush them and put them in whatever he eats or drinks and thankfully he is none the wiser. He spent a total of 10 days in the hospital. We were also able to get into the Ronald McDonald house the night of his surgery, although daddy stayed with Eli for 8 of those 10 nights.

As of last night I removed the NG tube from his nose because he is no longer on any liquid meds so he didn't really need it and it was time for his oxygen tubes to be replaced anyways. He started back at physical therapy last week and he had developmental therapy this morning. Both therapists quickly noticed his weight loss (He weighs 23lbs) and that he had lost a lot of his strength. Thankfully these are things that can easily be gained once he's fully recovered. He will remain on oxygen until after this next surgery.

Strongest boy I know!

I am waiting to hear from the general surgeon's office so we can schedule the hernia/ diaphragm surgery. The cardiologist has cleared him for it and we both want it done as soon as possible. We are looking at about 2-3 weeks from now. I have no idea what the surgery and recovery time will be.  We hope to continue with our fairly smooth recovery and get our little adventurous boy back, full energy and strength.

Cardiac cath and such

Just a quick update about Eli's cardiac catheterization on Monday and what became of it.

Eli was scheduled for a routine cardiac cath to get ready for his next open heart surgery, the Fontan. We had scheduled it a month ago and it got cancelled the day before so we finally got in on Monday, April 15th. We got to the hospital at 6:30 for a 7:30 procedure. With Eli's new found hatred of all things and people medical he did require a small amount of sedation (Versed is the drug name) prior to going back into the procedure room.

 About an hour or so into the procedure we got an update that they had found collateral arteries that needed to be coiled. These are like little branches off of the heart that are useless to him and actually make his heart work harder because its pumping blood to a dead end artery. These are common in the heart babies as far as I know and is kind of no big deal. We also found out that the one of the stents he had placed last January had broken. It will need to be watched in the future.

Since he had to have a coil its an automatic overnight stay in the hospital for observation. We did a routine EKG, Echocardiogram and Xray just to make sure everything is good to go. During the xray they discovered he has a paralyzed left diaphragm!!! We then had to go back downstairs to radiology and have a "live action" xray just to see it in action. Rafe and I were able to stand right next to him and the doctor explained everything we were seeing on the xray. I was surprised to see just how drastic the difference was between the right and left side.

The doctor who did his cardiac cath was just as shocked to see this because he has no idea when it happened or how considering he didn't mess around on the left side of Eli's body. (There is a nerve on the left side that if messed with during surgery or procedure could trigger paralysis.) The doctor then wanted to do a CT scan which required some more sedation just to get him to be still. Again Rafe and I were able to hold his hand through it all and help ease some of the fear. Radiation for all of us!!
Dr. Javois was not comfortable with sending us home just yet and wanted us to stay for a 48 hour observation. He wanted to make sure this doesn't mess with his breathing and heart. As usual Eli is perfectly fine and showed no signs of distress or discomfort. We are now home!

I am happy to say both Rafe and I were happy with Eli's ability to adjust to nurses and doctors constantly coming in to check on him. He still doesn't like to have the stethoscope on him or his temperature taken but he will give you about a 20 second window to get your vitals done. He learned many words and the doctors and nurses loved the many kisses and goodbyes they received.

At this point surgery is good to go. He will more than likely require an additional surgery to tighten the diaphragm and we were told it can be done during his next heart surgery. We now wait to hear from the heart surgeons nurse so we can get a date set. We are hoping to get it done and over with as soon as possible.

I think there may be some details I've let out but my brain is pretty fried at this point and I'm desperately looking forward to sleeping in my own bed tonight. Three nights on a pulled out bed hurts!