Surgery Day

You wake up early in the morning. It is still dark out and your body rebells at having to leave the comfort of your bed. You did not sleep well last night, you were too anxious. You and your husband decide not to have breakfast since you both are really too nervous to eat. You would probably throw up on the drive to the hospital any way. Eating at the hospital will provide a much needed distraction. The awfulness of the food will give you something to talk about besides the surgery.

Waking your child is no easy feat. He too rebells at getting up so early. You all quickly walk out into the morning chill and put all the bags into the car. There is one for him, filled with special toys that you got especially for the surgery. The other one is for you. There is a change of clothing and also things for you to do while you wait. Today there will be a lot of waiting and you know that you will quickly tire of the many things in there. Your mind will be with your child in the operating room.

Traffic is light. You make it in plenty of time and have no trouble finding parking. In the waiting room your child proceeds to charm all the older people there. He is the only child and he milks all the attention that his youth and cuteness gets him. His name is called and you are taken back to a room where they prepare him for the surgery. Height weight and vitals are all taken. The anesthesiologist comes by to ask you if you have any questions. Your child's surgeon comes by to answer any last second questions.

Then you wait. Your child is getting cranky from the lack of sleep and hunger. You are told that the surgery is delayed due to an organ transplant. You try and keep your child entertained grateful that you have a little more time with him before the surgery, but you also would just like to get the whole thing over with. Too soon it is surgery time.

You are all taken to the OR. You wait in a tiny room while they are getting everything set up. Only one parent is allowed back to hold the child during the anesthesia induction. As the mother you claim that right and are given a zip up suit to wear along with a hair net looking hat. Your child starts to get anxious the instant you enter the OR. He remembers it somehow from the previous times that he has been in there. You try and comfort him as best you can while you lay him on the operating table. He cries as the mask is placed on his face but soon he gets sleepy and is limp. The nurses promise to update you and your child's surgeon pats your back telling you that he will do his best to give your child the best outcome possible. As you leave you take one last look, praying that you will get to hold your child again.

Gabe and Zoe are having heart surgery this week. Gabe's is May 15th and Zoe's is May16th. Please take a little time and say a little prayer for both the children and the parents. They need all the strength that they can get in this trying time.

Wooohoooo!!!

At long last we are finally home!! Surprisingly we were able to leave the hospital shortly before nine in the morning which is a record. Generally we have to wait until late afternoon to see the doctor and get the final send off.

This is a very good thing because I was becoming increasingly hostile. The night nurse Evan had last night got on my last nerve. She woke him up while taking vitals which is number one no no. Then she wondered is Evan normally had his temperature taken orally (umm no!!!! he is a toddler and would only chew on it at best. At worse he would end up with is jammed down his throat because he was squirming so much). Then it turned out that she had not brought all the equipment in with her that she needed so I was left to comfort a distraught and annoyed toddler. The final straw came when she wanted to change his diaper an hour before Evan normally woke up, just so she could chart his urine output (her words) before she left. There was no way in hell I was going to let her touch him that soon before he woke up. I knew that he would not go back to sleep and I would be the one that had to endure a cranky toddler. I was polite about it, but I was ready to tell her that if she touched him one more time she would die.

The pacemaker interrogation showed that nothing really had changed. That means Evan's pacemaker only has 3-8 months of battery life left. He is going to have to be closely watched to make sure it does not go out too soon. Evan's cardiologist is arranging for us to meet with a pacemaker specialist (who of course is not exactly near us) to discuss the possibility of a special kind of pacemaker that is supposed to be superior to what he has currently. I am still a tad fuzzy on the details but apparently this kind of pacemaker had been studied in kids that have single ventricles and transposed arteries like Evan.

It is good to be home but my homecoming certainly different than when my mother-in-law was over to help watch Harry. I know that my husband and sister did exactly one load of laundry because it was still sitting on the floor when I got home. There was no gleaming kitchen or picked up living room to greet me. At least now my husband can't claim that he keeps the house spotless all the time, I have proof that he is a worse housekeeper than me.

Another day

Today has been a day of sleep deprivation. Evan decided that 4:45 was a great time to wake up. Later in the day he decided that naps were for suckers. Now he is refusing to go to bed early despite the fact that he is obviously exhausted.

Good news is that his INR is down low enough that we will be able to go home. Another good thing was that we got a great phlebotomist who managed to get the blood with one stick. I thanked him for doing such a good job. One of the nurses on the floor that was helping me hold Evan said that he was very good and after the stick I believed her.

Today my sister and I took a nice long walk while Evan was pretending to nap. It was good to get out into the sunshine. Afterwords Evan gooed up my only clean shirt with cookie drool. I am so ready to go home and get some clean clothing. The last hurtle is the pacemaker interrogation in the morning.

Boring

Not much happened today. The weather was super nice out or so it seemed by looking out the window. We are both rather bored and tired of being in here. One nice thing about us being in here but not being sick is that the nurses don't harass us nearly as often for vital signs. Evan is actually starting to warm up to them and not be so skittish.

My sister is coming for a visit and I am hoping that I will be able to actually get out of the hospital for a nice long walk. I hadn't before because I was worried I would miss being able to talk to a doctor. I hate it when they talk to my husband because he is horrible at communicating what they say to me. He is a typical guy in that regard.

Tomorrow night Evan will be having a blood draw to check his INR. Please keep your fingers crossed that it will be low enough that we will be able to go home on Monday. I am also hopping that we don't get a digger because if one more person digs in Evan's veins I am going to throw a fit. He has the worst bruises on his poor arms because of digging. I know that they would not be doing that if Evan was an adult that could hit someone for vein digging.

Frustrations

Well all my hopes for us getting out of here today were dashed when the Cardiologist finally made it in to see Evan. She wants to keep him in the hospital because of his high INR. She also wanted to have Evan's pacemaker interrogated one more time before he left but can have the people come in during the weekend unless it is an emergency. Apparently me not wanting to still be in the hospital is not considered an emergency.

I am not horribly thrilled at this turn of events. I am really tired of being in here with a crazy bored toddler. I just want be at home where I can have my own space and not be at the mercy of other people's schedules. I am missing the Super Saturday that my ward is putting on. I really need a day of crafting and relaxation. I wanted the chance to get a bit of a jump start on my Christmas gift list. I also need a decent night of sleep. *sigh* Maybe I will not feel so grumpy and resentful tomorrow.

Limbo

We are still in limbo right now. I have no firm answers about what the final plans for things will be but it is looking like maybe they will not be replacing Evan's pacemaker just yet. All of the tests they did this morning turned out fine except for Evan's INR which was quite high. Apparently the steroid that they gave him interacted with it driving the number up way high (he is a 6 when he sohould be 2-3). The Holter monitor results were very late in coming in because the machine that they used to run the test was brand new so there were issues with getting the information downloaded off of it.

Evan's cardiologist has been super busy all day so we have not seen her yet and will not see her until tomorrow. We were assured that we would hear the final plan from her then. I can't help but be frustrated even though I know that she has many demands on her time. It is looking more and more like we probably should have not been admitted in the first place and that the cardiologist that admitted us (one who does not regularly follow up with Evan) was over reacting a bit.

On a lighter note we have enjoyed seeing glimpses of the Blue Angles practicing in the air, getting ready for Fleet Week. Evan oohs and ahhs when I get him to the window in time to see then fly over. He is also enjoying his Thomas the Train DVDs and will not watch anything else right now. I am not so thrilled with them and am going a bit mad because they are playing in my mind even on the rare occasions that the DVD player is off. I miss his Baby Einstein obsession because at least then all I would have running through my mind was pleasant classical music.

Update

Well, we were admitted today but to the hospital that me normally go to which is nice. The other hospital has it set up so you have to share, this one has it so that each kids gets their own room. Very posh. They put yet another Holter monitor on him and he is telemetry monitoring but at least we are not in the PICU. As we walked on to the pediatric floor one of the nurses asked us if our ears had been burning. Apparently moments before she had been talking about Evan and then bam there we were.

We have had a bit of a scramble trying to have Harry taken care of. My husband had taken off a lot of time for Evan's surgery so he is needed back at work. They have been pretty understanding but he still has a job that needs doing. My sister is flying out for a week and hopefully that is all the childcare that we will need.

There is a strong possibility that Evan will have to have his pacemaker replaced which is why we were admitted. They did not want to have it suddenly fail on us. It is already cranked up as high as it will go and was still missing beats. I guess I should not be too surprised about this sort of thing happening. Evan has a horrible post op curse. He ended up with the pacemaker when a day after his first surgery his heart rate plummeted. His stroke happened after his second surgery. Evan's cardiologist even told us when we were first talking about scheduling his surgery that she was not too worried about the actual surgery, it was the recovery that she was worried about. At least this was caught before things got too bad.

Argh!

I just got a call from the cardiologist and they want us to come back in today with the possibility of admission to Big Medial School Hospital where there is a specilist in this type of issue. ARGH!!!

Today

The appointment went well today. The steroids are working and his threshold is lower now. We will be keeping the already scheduled Cardiology appointment on Thursday for yet another recheck of his pacemaker. It is still going to have to be replaced sooner than anticipated but will probably not be as urgent as it would have been.

The photos from the hospital stay

Evan's newly pink little piggies

This was taken the morning of the surgery. He was having lots of fun playing with his trains while we were waiting for him to go into surgery.

This is Evan's anesthesiologist. He has been there for all of Evan's surgeries and heart catheterizations. He is a very nice guy and makes sure that we completely understand what is going on.

Evan playing with the PICU doctor. He is a very wonderful doctor and has always taken the time to make sure that I understood what was going on while Evan was under his care. He never made you feel like you were asking a silly question.

Evan's sweet ride. Evan's eyes lit up with excitement when he saw this wheel chair. Even after his leg was free he still wanted to ride around in this rather than walk.

The therapy dog that came by on Saturday. She sure did a great job because before the dog came by Evan was cranky and annoyed. After she left he was in a much better mood.


Evan's favorite video watching position. He seemed to have a strong need to put his feet up while kicking back and watching his train DVDs.

Evan's enormous collection of Thomas trains.

There he is chasing the front loader down the hall.

Here he is putting his trains into the scoop of the front loader. He would fill it up and then have me pull the lever so that the trains would come tumbling out so he could fill it back up.


Evan's stinker grin

Here he is scratching his head like a dog. He amazed everyone with his incredible flexibility.

Here he is all ready to go home.

We are home!!!!!

We are at home and free from the confines of the hospital. Evan is currently happily watching Wheel Of Fortune with his father.

Shortly after Evan woke up transport came to take us for his chest x-ray. I was rather surprised that they came so early but also pleased that we would get that over with so soon. Just as we got back from the x-ray the vampires arrived to draw Evan's blood. The same person came last time so Evan knew what was up and started crying when the woman entered the room. I felt kind of bad for her, it must be hard to have a job where kids sob at the sight of you.

Three of us ended up holding him down as he was struggling quite hard. The phlebotomist was having a tough time hitting a vein as all the ones in his arm were pretty well shot. She was digging and digging but not getting a thing. Evan's nurse finally had enough and could not stand watching the digging any more and offered to try and get some blood from his foot. She got out some syringes to pull the blood out rather than the vaccutainers that were being used. The vacuum can often collapse veins in little kids making it super hard to get any blood out. The stick went very smoothly and poor Evan was rescued from further torture.

The nurse later apologised for fumbling around thinking that it made her look unprofessional. I told her that I was just happy that she rescued Evan from further digging. Truth be told I had not anticipated that she would have such skill at drawing blood in the first place. The nurses on the peds floor have a tendency to rely more on the lab staff for blood draws so their skills can be quite rusty.

Soon Evan's surgeon came in with his nurse and removed the stitch that was holding the skin closed where the chest tube had been. It was a very joyous good bye. We were all happy that the hard part of the journey was over and that Evan was healing so well. I don't think that I can ever thank that man enough for giving Evan a chance at life.

We had to wait quite awhile for Evan's cardiologist to come and see him. She was the final person that had to see him before we left. She had a lot of patients to see so she was not able to come by until 2:30 in the afternoon. I had just put Evan down for a nap hoping that it would get her to come. Every time Evan went down for a nap a stream of people seemed to have a sudden need to come into the room. It worked like a charm.

It sure is nice being home. Harry missed me and has shown that by being ultra clingy all afternoon. Hopefully a good night's sleep will cure that.

Student nurses

I am not trying to be mean or anything but I am seriously getting annoyed with the student nurses that have come to the hospital. I know that they have to learn skills somewhere. I truly get that. I am just so tired of having to baby them along when all they are trying to do is something as simple as taking a set of vital signs.

Last night I had to show the student nurse how to use the machine that they use to take blood pressures. She has been using it on the infant setting instead of the child setting so she was not getting a correct reading. Then this morning we had student nurses come from a different school with very green students. It took forever for the one working with Evan's nurse to get his vitals and then right before it was Evan's nap time she wanted to start all over again. I just had to tell her no because getting Evan to sleep was more important than her assignment. Tonight we have the same student from last night but by now Evan is in rebellion mode so it took some heavy duty distraction to get a reading.

I actually like educating the nurses, telling them all the nuances of Evan's heart defect and the surgeries that he has been through. I also gave a lesson on child development to one student that was assigned to the play room. It is in my blood to educate. I just wish that they would not insist on following the letter of everything. There are times when with young kids that you just can't get vital signs the required number of times per shift.

They are also not equipped to know when things out of the norms are fine. After Evan's second surgery I spent a good half hour trying to keep Evan asleep while a student insisted on repeatedly taking Evan's temp. He was running a bit on the cool side so she kept wanting to do it until he read normal. Evan was squirming a lot making the under arm thermometer not read correctly. Finally one of the student's class mates rescued me by bringing in the tympanic thermometer. A quick swipe to the forehead showed that he had a normal temperature.

If you are a student nurse reading this I have a few words of advice for you. When it comes to kids please be prepared to have things not work out for you. If you have to do something more than twice go get help or wait until later. Enlist the parent's help, they can often help smooth things out with a fussy kid. Parents can be more knowledgeable than you suppose. Don't act surprised when they can tell you all sorts of detailed information about their child.

Inching ever closer

Evan is off of supplemental oxygen now! His cardiologist figured that since he was already used to a much lower saturation level that the ideal 95% was not a biggie at this point in time. He should eventually get to that but it will take some healing on his part and she didn't want him having to go home on oxygen. Apparently the bodies of kids like him can get lazy if they are on oxygen too long.

The blood tests that they did today were fine. The lady that drew him had some of her coworkers help hold him and I pretty much had to push one of them away because she was not properly holding him down. I guess she was not used to working with kids and was afraid to hurt him or something. All she had to do was hold his shoulder down and she was not putting enough pressure and he was able to squirm enough that the person drawing the blood almost missed the vein.

Evan got a special surprise today. The hospital has a program called Little Wishes for kids that have long hospital stays and chronic conditions. They give the kids presents so that they have something special to look forward to during their stay. Evan has received a number of wonderful gifts from them. Both of the nurses that run the program are very much in love with Evan so today he totally got spoiled. They gave him six Thomas wooden train figures, a fun car and a huge front loader. When they came to give him the presents Evan was in the middle of a freak out because he was having his blood pressure taken. The instant he saw the presents he calmed down and wanted his daddy (who was visiting) to open the packages . I am not sure that there will even be room on the train table for all the trains he now has.

We have a big day tomorrow. Evan has a chest x-ray and a blood draw before we will get to come home. I am excited about the possibility of a nice sleep in my own bed.

The progress continues

We spent a very long morning getting an echo cardiogram and yet another chest x-ray. These two things took forever because the people that are supposed to transfer patients to the testes they need took forever to take us from the echo to the x-ray. By the time we got back it was lunch and nap time.

Evan was not thrilled one bit with the echo despite it being a very noninvasive test. All it is is an ultrasound of the heart. I think he is really starting to feel the loss of control that being in the hospital entails. He just goes not realize right now that all these things are helping him heal. Despite his crankiness he is still managing to charm everyone that he meets.

Evan's surgeon came in the afternoon and removed the steri strips that were holding together his chest incision. Evan was also freed from being monitored by telemetry but will have to go on a Holter monitor to make sure that all rhythm problems are resolved. His supplemental oxygen was turned down a bit again today and he is still maintaining his saturation levels. Everything is still looking to be on track for leaving on Wednesday.

Somehow word got around the Ward that we were coming home today. The Relief Society president called to drop off dinner for us. My husband was rather surprised to get the call and wondered if I had told someone that we were home. I had not even called any one from the ward so the rumor seems to have been manufactured out of thin air. I know that my husband did not say anything. I called my friend A. who is on the ward council where this rumor was passed on and apparently it was the Bishop that told everyone that we had come home on Sunday. A. was quite surprised that they would let us go so soon and was happy to hear, when I told her otherwise, that we were not being pushed out of the hospital before Evan was ready. It is funny the things that get passed around. I hope that next time the Bishop will check his facts first.

The foot is free

My campaign to free Evan's foot was successful. The nurse tried flushing the IV this morning and it was not working. We had to wait for final approval from the cardiologist before removing it to see if he wanted to try and save it. luckily he was on the side of removing it so that he could walk and be more active. Evan was not thrilled with the removal process but soon he was excited about his improved mobility. His first steps were rather wobbly but he quickly became more steady as the day wore on.

We had another visit from Harry, my husband and my mother-in-law. I used their arrival as a chance to get out for a nice walk in the sunshine. I am very glad that this hospital is in a nice neighborhood. It makes getting out a more pleasant experience. I love looking at all of the old Victorian houses that line the streets.

Evan is having potassium level issues because of the diuretics he is on. He had to get it supplemented orally which sucked big time because it is a horrible tasting medicine. I gave Evan sips of water with it to help with the taste and then brushed his teeth after. That was one time that I wish he had not removed his g-tube. He will have to get his blood drawn later tonight to check his levels again.

Tomorrow Evan will have an echocardiogram to see how things are looking in his heart. After that will be more playing and healing. Things are looking to be on track for us leaving on Wednesday.

The coumadin nightmare

Last night I kept waiting and waiting for the expected does of Coumadin for Evan. He was getting tired and I wanted to give it to him before he went to bed. I talked to his nurse to see what was going on. Apparently it had been ordered as a one time dose. After assuring her that I knew for a fact that Evan was going back on his Coumadin the nurse went to talk to the night doctor. Apparently this doctor got a bit snippy with the nurse saying that Cardiology wrote it and so they obviously wanted it that way. The nurse fought the good fight and got the doctor to look into the issue.

Then Pharmacy decided to throws fits about it. They did not want to send it up because Evan had not recently had his anti coagulation levels checked. A call had to be made to Evan's surgeon about the issue and he finally got everything smoothed out and around midnight Evan finally got the dose of Coumadin that he was supposed to get at 8 p.m.

This sort of thing is pretty much par for the course when you get up to the pediatric floor of this hospital. Communication seemingly flys out the window. Before we even went up to the floor Evan's surgeon and cardiologist made sure that I was clear on what should be happening over the weekend. They are all too familiar with these sorts of goings on. I have noted this time and time again when I get the inevitable customer satisfaction survey. I have even talked to people on the phone about it and yet nothing seems to have changed. I shudder to think of what could be happening if I was not so vigilant and constantly there all the time. If his INR had dropped low enough Evan could have formed another blood clot which could also cause another stroke.

I have to say that while the PICU is super loud, I prefer it to having to deal with this crap all the time. I know all the nurses there. You get to spend more than five seconds talking to the doctor. I also have a good reputation there. They know that I am an involved parent that is willing to assist in my son's care. They will take into account the things I say and not treat me like I am a moron.

I actually got suggestions yesterday morning from one of the doctors on the peds floor about what to feed Evan so that he will not loose too much weight. Like I have not been doing that all his life. Like I don't know what he will eat and what he will turn his nose up at. Yeah, I had given him fruit for breakfast but I had wanted to give him something easy to digest for his first meal of solids. The doctor did not even think to ask me why I did what I did. I am counting down the days until we can get home.

Long day

It has been one loooong day. Evan had a chest x-ray and a blood draw this morning. Both looked great. Then a bunch of doctors paraded past each wanting to look and listen at how Evan's breathing and heart sounded. By the time lunch came around he was ultra cranky and any time that anyone came in to the room he would start crying. A nap and some food helped get rid of the crankies.

Evan got a visit from a therapy dog which thrilled him to no end. A lady with lots of stickers and other art supplies came around and Evan had so much fun coloring that he decided that paper was not the best place to display his artistic talent. He has a very colorful knee right now despite my attempts to scrub the art work off. A person also came by to read his some books and sing with him.

Evan's appetite is returning and he has stopped throwing up now that the anesthesia has finally cleared his system. Tomorrow looks to be a quiet day as he has no blood draws or other procedures scheduled. I am making it my mission to bug the doctors enough that they will remove the IV in his foot so that he can start walking again. They have a patio area so the kids can go outside but the door is such that he can't fit out there with his wheel chair. Once he can walk he can go outside and enjoy the sunshine and warm weather.

We are on the Pediactric floor!

We were released from the PICU late this afternoon and are now happily on the pediatric floor. Evan has been having some issues keeping down food so we are slowly letting him get back into the swing of things. The surgery and morphine given to him to help with his pain have a tendency to slow digestion down so this was not unexpected. He is keeping his meds down which is a very good thing. He is also very thirsty since he is on a fluid restricted diet. The fluid restrictions are to help keep him from getting fluid in his lungs and prevent the possibility that a chest tube would have to be replaced.

I am hanging in there. The PICU was an awful place to try and sleep but I managed to get some. I was pretty much cat napping all day yesterday. They were super slammed so there was a lot going on. There were three kids on vents which for that small of a unit is a lot. All that lead to a whole lot of noise. It was great seeing so many of the nurses that had taken care of Evan in the past. They were all so happy to see him doing so well and looking so pink.

After the surgery everyone was in a bit of a euphoria. I felt a little bad feeling so good because there are other mothers there that have kids that are even sicker than Evan. The evening of the surgery I was eating a quick dinner in the PICU family room and I was beaming. I then noticed that the other mother in there was quietly sobbing. Her daughter is in grave condition and it is touch and go every day for her.

On a lighter note I discovered that the family room for the pediatric floor now has a computer so I can resume blogging. The whole pediatric department seems flush with cash right now because there are a lot of new things. Evan got to take a ride in a car that is also a wheel chair. I will have to post pictures later, he was having the time of his life. Evan is still on a bit of oxygen so the car wheel chair made it easier on me to push him around with the heavy tank in tow.

There is some talk of us coming home on Monday but I have the feeling that Evan's Cardiologist will want to discharge him herself and she has clinics the next two days, so she will not be around to do that until Wednesday. Evan will also have to be on full feeds before he goes so I am not sure that Monday will work any way. I don't want to push him too soon. Well, I am off to enjoy my first shower for days.

He's Pink !

Evan will get his central line removed today and the plan is to send him to the regular Pediatric ward after that. Rumor has it that Dad, Harold the Destroyer and Grandma D. may come for a visit soon.

Removal

Evan had his chest tube and art line removed this morning. His sleeping was very light last night so A.M.'s was practically non existent. However the docs are content with his rate of healing, so we are all thankful. He has to be restrained a bit because he still has some IVs he wants to pull out. Such are the joys of a toddler in the hospital. They are still to young to reason with or bargain with. If something is uncomfortable they act to remove it! This is the time of waiting, waiting to heal, waiting to see how well the surgery worked. Yet I'm grateful to know that everything that can be done is being done. There are not many places in the world where that can be said with regards to medical care. I have been in Health care for nearly 30 years and I have seen great advances. Yet when all is said and done, we still must rely on God's help in times like this.