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!
Sunday, August 25, 2013
Saturday, August 3, 2013
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!
Tuesday, July 16, 2013
Diaphragm Drama
Let's catch up with the past months activities....
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".
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!
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| Peek a Boo I'm 2! |
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.
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!
Monday, June 3, 2013
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.
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.
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.
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.
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.
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| 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.
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| Strongest boy I know! |
Thursday, April 18, 2013
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!
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!
Thursday, March 14, 2013
Cardiac Cath is coming
Long time, no blog! Finally have access to an actual computer instead of a tablet or kindle which I despise doing any length of typing on. However I'll only be doing a very short update because I'm running low on time.
We have hopefully finished our last round of synagis shots for this RSV season. Eli immediately flips out as soon as the nurse calls us back into the room so it will be nice to not have to go back monthly until November. We will have plenty of needles and pokes in the next few months with both the cardiac catherization and next open heart surgery quickly approaching.
Eli will have his cardiac cath on Tuesday April 9th and we will need to be at Hope by 6:30am. That means a 4:30am wake up call for mommy, boo to that! They will do all the initial stats of him and then after meeting with the doctor and antheisologist they will take him back into the procedure room. For those of you who don't know what a cardiac catherization is, I have cut and pasted a quick description. "A long, thin, flexible tube called a catheter is put into a blood vessel in your arm, groin (upper thigh), or neck and threaded to your heart. Through the catheter, your doctor can do diagnostic tests and treatments on your heart." (you can also click those words and it will take you to a website).
Currently Eli has 2 stents placed in his right pulmonary artery that he got last January during his last cath. They will ensure that those are still working properly and if not will expand them as needed. They do the cardiac cath to check the pressure in the chambers of his heart. This helps determine when surgery will done and what type of condition exactly his heart is in. If his stents need expanding we will need to spend the night in the hospital and have tests done in the morning to make sure it is all working as planned. If they don't need to do anything we should be going home by 3pm that day.
Typically within a month of cardiac cath they will perform his next open heart surgery. They don't like to wait any longer because of the possibility of the pressures changing too drastically since their last results. The Fontan surgery is considered the 2nd most intense surgery of the 3 stage surgeries. So he's already gone through the hardest and the easiest so that's pretty comforting. I won't go into details about that surgery yet. I will update after the cath and when we have a surgery date.
Physical therapy wise he's still in the semi walking stage. He is fully capable of walking but is just being a stubborn little billy goat (as I like to call him). Developmental therapy is very pleased with his expansive vocabulary and I swear he adds a new word everyday. He is currently at about just under 50 words and loves to talk your ear off. We are still waiting to hear back from our service coordinator about who will be our occupational therapist.
Ok, time has run out! Please keep us in your prayers these next few months, we will definitely need them!
We have hopefully finished our last round of synagis shots for this RSV season. Eli immediately flips out as soon as the nurse calls us back into the room so it will be nice to not have to go back monthly until November. We will have plenty of needles and pokes in the next few months with both the cardiac catherization and next open heart surgery quickly approaching.
Eli will have his cardiac cath on Tuesday April 9th and we will need to be at Hope by 6:30am. That means a 4:30am wake up call for mommy, boo to that! They will do all the initial stats of him and then after meeting with the doctor and antheisologist they will take him back into the procedure room. For those of you who don't know what a cardiac catherization is, I have cut and pasted a quick description. "A long, thin, flexible tube called a catheter is put into a blood vessel in your arm, groin (upper thigh), or neck and threaded to your heart. Through the catheter, your doctor can do diagnostic tests and treatments on your heart." (you can also click those words and it will take you to a website).
Currently Eli has 2 stents placed in his right pulmonary artery that he got last January during his last cath. They will ensure that those are still working properly and if not will expand them as needed. They do the cardiac cath to check the pressure in the chambers of his heart. This helps determine when surgery will done and what type of condition exactly his heart is in. If his stents need expanding we will need to spend the night in the hospital and have tests done in the morning to make sure it is all working as planned. If they don't need to do anything we should be going home by 3pm that day.
Typically within a month of cardiac cath they will perform his next open heart surgery. They don't like to wait any longer because of the possibility of the pressures changing too drastically since their last results. The Fontan surgery is considered the 2nd most intense surgery of the 3 stage surgeries. So he's already gone through the hardest and the easiest so that's pretty comforting. I won't go into details about that surgery yet. I will update after the cath and when we have a surgery date.
Physical therapy wise he's still in the semi walking stage. He is fully capable of walking but is just being a stubborn little billy goat (as I like to call him). Developmental therapy is very pleased with his expansive vocabulary and I swear he adds a new word everyday. He is currently at about just under 50 words and loves to talk your ear off. We are still waiting to hear back from our service coordinator about who will be our occupational therapist.
Ok, time has run out! Please keep us in your prayers these next few months, we will definitely need them!
Friday, February 1, 2013
The start of 2013
I know it's been already a month since the new year started but in my defense we haven't had a computer since two days after Christmas so I haven't had a chance to update my blog. So here goes......I'll start with January since nothing major happened after my post in December.
We are smack dab in the middle of RSV season which means synagis shots for my little man. I've mentioned synagis MANY times and how costly they are, but I may have never explained how much of a pain in the butt they are to get. I'll quickly remind you these shots are now $4,400 for 1 single dose and Eli is supposed to get 5 a year. Well as we all know Jan 1st starts new insurance deductibles and copays (boo!). We have BCBS who has been great to us through everything albeit sometimes slow but still never denied a single thing. Eli was scheduled for his monthly synagis shot on Jan. 16th, so a few days before that Walgreens specialty pharmacy called to set up delivery and talk copay. In order for Eli's next dose to be delivered we would need to pay $1,486 SAY WHAT!!!!
Side note: Last year since Eli had a cardiac cath and two stents placed within the first few days of the new year we had met our max out of pocket within 6 days of the year starting. We never had to pay for these shots last year so I was in complete shock when they told us this.
After a few seconds of silence on the phone the Walgreens rep asked what I had wanted to do as far as setting up payment goes. I told her there was no way we could come up with that money before the dose needed to be shipped the following day. She sympathised with me and said herself she wouldn't be able to either. I was choking back the tears when she told me about this assistance foundation that might be able to help us. She was such a sweetheart to offer this to me and gave me the phone number so I could call to see if we're eligible. Before I called the foundation I called Rafe and cried my eyes out to him, stressed out beyond belief because our baby needed these shots and we don't have the money for them. I then called my mom panic stricken, she told me to calm down and don't get all worked up before I've called this foundation and figured things out.
I called up PAN foundation and explained my problems to them. A few simple questions later and we were qualified for assistance! Thank God I was so happy to hear that. We just had to wait for the doctors office to fax information back to them (why Eli really needs these shots, etc) and we would be on our way to synagis.
Now I know his February does is coming up in less than 2 weeks and I know Walgreens will be calling me again for payment. This months shot will cost $994 so I'm not really sure if I have to call PAN again and ask for assistance or if Walgreens knows what to do with it. We did receive a plastic prescription card for Eli so I'm not really sure. I guess we will cross that bridge in a week or two.
While we were at the doctors office for the shots the pediatrician wanted to check his ears. Eli has developed a complete and utter fear of this doctor and flips out when she walks into the room. It takes two of us to restrain Eli just so she can look into his ears. The doctor keeps saying they look red and irritated inside but never gets a good solid look at them. She has requested we see an Ear Nose and Throat (ENT) doctor so he can get a better look. Guess who she asked us to see!?! The same doctor who wanted to give Eli a tracheotomy at a month old. He is the only ENT doctor that Hope works with and in case Eli needs to be admitted we have to see this doctor. Mind you Dr. Marra has been good to us since but I may never forgive him for the trach drama. Grandma, Eli, and I will be headed to see our good friend Dr. Marra on the 7th and hopefully get some good news from him. The following week is synagis shots, woohoo.
On another note, Eli is still not walking. He has been stuck in this stage for months now, aggravating. He has taken a few steps for us in physical therapy and at home but we just think he is scared. He will get there when he gets there.
Sorry no pictures for this blog. I'm not on my own computer so I don't know how to upload them lol
We are smack dab in the middle of RSV season which means synagis shots for my little man. I've mentioned synagis MANY times and how costly they are, but I may have never explained how much of a pain in the butt they are to get. I'll quickly remind you these shots are now $4,400 for 1 single dose and Eli is supposed to get 5 a year. Well as we all know Jan 1st starts new insurance deductibles and copays (boo!). We have BCBS who has been great to us through everything albeit sometimes slow but still never denied a single thing. Eli was scheduled for his monthly synagis shot on Jan. 16th, so a few days before that Walgreens specialty pharmacy called to set up delivery and talk copay. In order for Eli's next dose to be delivered we would need to pay $1,486 SAY WHAT!!!!
Side note: Last year since Eli had a cardiac cath and two stents placed within the first few days of the new year we had met our max out of pocket within 6 days of the year starting. We never had to pay for these shots last year so I was in complete shock when they told us this.
After a few seconds of silence on the phone the Walgreens rep asked what I had wanted to do as far as setting up payment goes. I told her there was no way we could come up with that money before the dose needed to be shipped the following day. She sympathised with me and said herself she wouldn't be able to either. I was choking back the tears when she told me about this assistance foundation that might be able to help us. She was such a sweetheart to offer this to me and gave me the phone number so I could call to see if we're eligible. Before I called the foundation I called Rafe and cried my eyes out to him, stressed out beyond belief because our baby needed these shots and we don't have the money for them. I then called my mom panic stricken, she told me to calm down and don't get all worked up before I've called this foundation and figured things out.
I called up PAN foundation and explained my problems to them. A few simple questions later and we were qualified for assistance! Thank God I was so happy to hear that. We just had to wait for the doctors office to fax information back to them (why Eli really needs these shots, etc) and we would be on our way to synagis.
Now I know his February does is coming up in less than 2 weeks and I know Walgreens will be calling me again for payment. This months shot will cost $994 so I'm not really sure if I have to call PAN again and ask for assistance or if Walgreens knows what to do with it. We did receive a plastic prescription card for Eli so I'm not really sure. I guess we will cross that bridge in a week or two.
While we were at the doctors office for the shots the pediatrician wanted to check his ears. Eli has developed a complete and utter fear of this doctor and flips out when she walks into the room. It takes two of us to restrain Eli just so she can look into his ears. The doctor keeps saying they look red and irritated inside but never gets a good solid look at them. She has requested we see an Ear Nose and Throat (ENT) doctor so he can get a better look. Guess who she asked us to see!?! The same doctor who wanted to give Eli a tracheotomy at a month old. He is the only ENT doctor that Hope works with and in case Eli needs to be admitted we have to see this doctor. Mind you Dr. Marra has been good to us since but I may never forgive him for the trach drama. Grandma, Eli, and I will be headed to see our good friend Dr. Marra on the 7th and hopefully get some good news from him. The following week is synagis shots, woohoo.
On another note, Eli is still not walking. He has been stuck in this stage for months now, aggravating. He has taken a few steps for us in physical therapy and at home but we just think he is scared. He will get there when he gets there.
Sorry no pictures for this blog. I'm not on my own computer so I don't know how to upload them lol
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