Video Clips from Hospitalization

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Going home!

We've been released! Will post more later when we get settled in.

Sent from my iPod

Greg Beckemeier
CandyCartons.com
(314) 488-2613
www.candycartons.com

ETA: We're getting settled. Unpacking and starting in on the mounds of laundry. Mookie and Greg took a time out to go splash in puddles and go on a rain walk. Connie didn't touch his lunch, but begged for tostitos so he had a plateful of chips and 1/2 cup of "nog nog."

He's wobbly and falls a lot, being pretty weak from 7 days in bed. We're watching the falling closely since he's on coumadin and that's not a good combination! We are making calls to set up appointments and calling pharmacies and trying to get back to normal a bit. We are ready for a week-long nap!

Thanks again for your prayers and support!

Night

Docs are getting ready to round here in a minute. I left last night around 6:30 and Greg stayed the night with him. I have gotten smart enough to realize when I've reached my limit so in order to provide the best care for Connie, I had to take a break. Plus, my little MookieRoo is missing her mommy. She and I went to Wendy's for dinner and a frosty and then home to let Belle out and go to bed. I got a shower in my own shower and even got to dry my hair this time! We got up bright and early, stopped for a donut on the way in and got here by time for morning rounds at 6:30. She and Greg are snuggling on the parent couch thingy in the room and Connie is snoozing away. He had a great night. His new little roommate is very quiet. Nary a peep out of him. He was wired again so he didn't fall asleep until 11:15. He did get a spongebath and clean sheets and pajamas so that was nice. The big news about the overnight is that his respiratory rate has been down where it was even on the Milrinone, meaning he's not showing signs of slipping back into the severe cardiomyopathy (failure) like he did last time we stopped milrinone. Dr. Checchia told me last night that they didn't anticipate him having difficulty with it this time because his rhythms are normal now, where they weren't the last time he was taken off. The "shelf life" of that drug is like 3-6 hours they say, so if we were going to see him decline and the failure worsen, we would have seen it by now.

We'll update again after we get the plan for the day.

Evening Rounds

Dr's just left his bedspace and they kind of skipped him because his little roommate is having some trouble with keeping his heart rate up all of a sudden.

Dr. Checchia did come in and say that if he does fine overnight, he'd be moved to the floor in the morning. Floor status means he might get a little more freedom to get out of bed and such. Maybe even a wagon ride would be in his future. I asked how long we should expect him to be there and he said maybe a day. He said they might even be able to be convinced to send him home in the morning and skip the step of going to the floor altogether. That's my vote, but I want to make sure he's stable and won't throw us any surprises once we're home. I'd also like to see Dr. Bromberg again before going home.

Looks like they are moving the roommate back to the CICU. He was on CICU status, just like we are, but they can keep a better eye on him and they have more room to intervene if they should need to. This might mean that there is some hope of being alone tonight and getting a better night's rest. If the poor little guys alarms weren't sounding, he was inconsolable. Connie kept saying, "Uh oh" when he would hear him start up again. Like a concerned older brother or something. It was cute. This annex business is for the birds. They need a bigger CICU if they have too many kids that are CICU status and not enough room. I don't see how putting a kid in CICU status in a room that is equipped to be a regular hospital room is in the best interest of the patient.

Settling in again

We are moved. They decided not to wait until he woke up because the other little patient our nurse had was moved earlier and she was pretty spread out trying to keep up with both of them all the way across the unit so we wheeled him quietly around to his new space. Problem was, his bed wouldn't fit. It was quite the ordeal, with four or five nurses trying to get him in the room. Of course he woke up during all of this. After some rocking he decided to be in a good mood and is now mowing on lucky charms and raisin bran (dry) while we wait on his lunch order to arrive along with a bedside table so we can keep the crumbs out of his lap and sheets! Wouldn't you know, our roommate is a teeny newborn who has been quiet all day until we arrived. It's also one more set of monitors that beep and alarm constantly. He doesn't have any parent with him. The nurse said a grandparent is here, but he must have stepped out for a bit. Poor guy. We did get the window space, for those of you who recommended it, thank you! It is quite a small room. I think it is smaller than the one he was in and that only had one kid! I think they may let me use a phone in here and possibly even eat in here so that is one bonus, I guess. The fellow on the unit said that she hasn't totally evaluated it, but at first glance, his echo from this AM looks like the LV function has improved. That's good news. He's still on milrinone and they haven't ordered it stopped just yet. The nurse said they may decide tonight on rounds when to do that. He's not getting Lasix anymore and the fellow said unless he's not peeing enough or starts getting puffy, that he won't get any. I asked the nurse if the plan from here was to get off the milrinone and see how he was 24 hours out and then go mhome and she acted like home wasn't even in the discussion yet :(

Moving again

Connie is moving to 7W. He is only moving there b/c they have more critical kids that need his bedspace. Maybe a post op kid or something. He is still going to have the same nurse and will not be considered "floor status." He will still be Cardiac Intensive Care Status and on the monitors and all. Bummer is he will be in a shared room :(

His echo is finished. He did great. Watched Max and Ruby and ate starbursts! I asked if it was a full blown one or just a quicky to check function and he said they wanted the whole one done on him since he's never had one here. There were three docs in here for it and they said he does have a unique anatomy! That's an understatement. It takes those looking at him for the first time a little while to figure out what is what in there.

I'll post again after we're all moved. They may wait until after his nap, if he ever does nap!

Rounds are Complete

The team of docs just finished rounding. Connie was awakened at 6am for his blood draw. The flabotomist (sp?) did a fabulous job. She found a vein right away in his arm, not hand where it is more painful. It took all of 30 seconds. Then they called x-ray back up to get a picture of his chest and he was just about to drift back off to sleep when they came to round on him. The plan for the day is to check his labs before restarting/deciding the coumadin dose, restarting the dig and enalapril today, coming off milrinone and watching function. He's due for an echo later this morning. Once he's off the milrinone there is no reason for him to be in this "fishbowl" (CICU) according to Dr. Van Hare, so he will likely move out to the floor later today. No timeline has been given on how long we can expect to be there.

He's watching Bob the Builder, playing an alphabet game on Greg's iPod and thinking about drifting back off to sleep.

As far as the hyperactivity we saw last night, Dr. Checchia said, "Well, we did give him an electric shock," which is rather stimulating! And Dr. Van Hare added that a lot of times the drugs they use to induce sleep for procedures for them to sleep half the day end up keeping them up half the night.

I will say, it was pretty quiet around here last night. I decided not to ask for a new nurse and it all worked out just fine. She even advocated for him a few times, once when they came for x-ray around 5 and she knew he had labs scheduled for 6 so she asked x-ray to come back later so he could sleep. Also, when I had questions about whether or not he would be getting his dig or coumadin before bed she went and got an answer right away. Our experience in Michigan was that sometimes you had to wait quite awhile for nurses to ask MD's things, so that was a nice surprise.

Yes, still up

It's 1:10am and Connie's still awake! He just had a bowel movement though, so now maybe he can settle down a bit. First he was extremely silly and wound up. Now he's quiet, but wiggly. His numbers look great on the monitors though so I'm not too worried. Maybe it's just the super-long, drug induced nap he had today. The most difficult thing is to keep him from constantly entangling himself in the wires and pulling off leads. The nurse just came in and said they are going to draw labs around 6am. He'll get a grand total of 4 1/2 hours of sleep, assuming he falls asleep anytime soon. Are you kidding me? The custodian just came in the room with a new, noisy trash bag! Do they seriously empty the trash at this time of night in occupied rooms? What are they thinking?

Rounds are prompt at 6:30 am and since he's in bed 12, he'll be the first one they discuss. Guess I better try to grab some shut eye once he dozes off.

Looking a little better

As Greg mentioned, Connie woke up peacefully--and just in time for a visit from his pediatrician who was here visiting a patient who was born a couple of days ago with TGA. He confirmed that the way I perceive the staff's perception of us is probably pretty accurate. For one, we left town for his "big surgery". This makes them think we think they are inferior. Number two, we went to St. John's initially then had to be transferred here. I just have a feeling that they are a little territorial, but that may just be me making more out of it. Dr. Davis said there probably is a bit of that going on actually. Oh well. They can get over it. I'm a little concerned though because the night nurses just came on a little while ago and Connie's nurse for the next 12 hours is one that was mentioned recently in an email from another heart mom in the area who's son just had OHS here as a nurse to avoid because of mistakes! Great. Now I have the added pressure of asking for a nursing change, which will make them like us all the more, I'm sure. I'll pray about it and since he's not super critical right now and she's not set to give him any meds or anything, I'll probably give her the benefit for a little while. Ugh. I hate this.

ConBon asked for a drink and has had some sips of chocolate milk and we ordered him a tray and he has had, you guessed it, saltine crackers! Although, he did eat most of a chocolate chip cookie as well, so that's some improvement. He also had about 8 or 10 bites of chicken noodle soup. He got all his wires untangled and even drew with a pen on some paper and his legs! He's pretty cooperative so far. Let's cross our fingers that he continues to feel better and more alert and active.

The next step is an echo in the morning. I heard Dr. Van Hale tell the rest of the team during rounds, when asked by Dr. Ghandi about the potential for ablation, say that the youngest he'd done ablation on a kid with a senning procedure was four years of age. The doctor for overnight asked him what to do if he went into flutter again and he said, "He won't. If he does, call the director of the unit. We're not starting him on amiodarone without talking first." It seems that he's a bit of an unusual case, even for here. We expected St. John's to be a bit freaked out by his anatomy, but it was funny how on the way here, the doctor that came to pick him up didn't even know what a Senning procedure was. When they were getting his history, all 17 times, they were very impressed by the information I gave them. A couple even asked if I had a medical background. I told them no, I'm a kindergarten teacher, actually. That made me feel like Supermommy!

Dad posting

Hi everyone, Dad here... I stink at writing so I'll make this short.

THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU for saying prayers for my boy!!!!!

He's been awake for 45 minutes, and he actually woke up HAPPY and PEACEFULLY. He looked right at me and said "monk" while handing me his monkey-luvee. I actually burst into tears unexpectedly. I was deathly afraid of a Michigan repeat where it took him weeks to wake up. The joy in my heart right now is indescribable.

There's still an uncertain road ahead, but I think I'll stay in the moment for now.

Mary Kathleen is staying with grandma Marybelle tonight and Celeste is at swimming lessons. I was dying to get Celeste up here to see her brother before the cardioversion but it didn't work out. If you're reading this Celeste, your little brother is doing great and will be jumping on your stomach again in no time!

Love and eternal gratitude from the Beckemeiers!!

Dad

Here's the deal

We're at Children's now. We've been kicked out while he gets his TEE. The experience here so far has gotten my irish up a notch. We're dealing with a fussy, over-tired, hungry baby and have had all the fun of saying the same thing fifty-eight times since this is a teaching hospital. Real fun. He especially enjoyed mommy being distracted and not be able to attend to him fully. Not. They have all been told of his anxiety over medical personnel. He's even a little freaked out by Greg right now. He senses Greg's worry and is very difficult to console. I finally got him to sleep a little after 3 I guess and had him laying peacefully in the bed. This was quite a feat. They come in to start the procedure and are prepping, etc. and I repeat that it would be best to get some sedation on board before doing anything to him or "going at him" with any equipment. I remind them that he is just sleeping and not sedated. I am assured that this will be the case and then sure enough, somebody orders the Respiratory therapist to shove a nasal cannula in his nose! He immediately awakens and starts getting hysterical. There was some debate about what to give him and when. One lady who I don't want to ever come near my son again kept wanting to wait and the fellow kept saying give him something. It was ridiculous. Meanwhile, his little mental issue with hospitals is exploding. They ended up having to give him three drugs before he would settle down and sleep. Greg said earlier that he was to be given a general anesthesia. That was not the case. He was given versed and fentanyl which he "laughed at" according to them. The brought a full dose of something bigger (can't remember right now) on board and he immediately de-satted down to 80! This is a kid who never goes below 97. The lady I don't like wants the cannula placed at that time to help him out and the nurse hadn't yet noticed him desatting so she said she wanted to give him a minute to get fully asleep. That's when the fellow urgently said to get the mask and mask him. Slowly he climbed back up. It was the scariest, most disorganized, lack of communication cluster I have ever witnessed. It took awhile for me to calm down.

Dr. Van Hare just came out to talk to us and we went back to see our boy. Dr. Van Hare is very close with Dr. Bromberg and has been here for 9 months. He spent 10 years at Stanford working with Dr. Hanley and is very good. Those that work with the elite guys are good. That helps. He is also an electrophysiologist so he would be involved even if he weren't the cardiologist on call, like he is this weekend. Everything went well and they did the TEE. No clots were visible. He tried to convert him like Dr. Bromberg did, also unsuccessful. Then he went ahead with the cardioversion (shock) and it took on the first try. He changed the settings on his pacer and if he goes into flutter again it should pick it up right away. There is some talk and some debate about what to watch for when we leave, but they are thinking they want to watch his LV function over the next couple of days and then hopefully go home to fully recover. Most, not all, people who are in chronic Atrial Flutter, like Connie, fully regain ventricular function. That is our hope and our goal. We also have to look at controlling the flutter and it's recurrence. Dr. Van Hare said that, while it would be difficult, he thinks Connie actually needs an ablation done. This is the procedure that is done in the cath lab where they go in the leg and find and destroy the electrical circuits that are causing the flutter. Dr. Bromberg had told us that this would be better to do when Connie was 8 or 9, that it is next to impossible to do it in very small hearts. We'll wait and see what the frequency will be for this to recur and go from there. Dr. Van Hare said that there is some promising stuff going on here at Wash U where they are using magnets to guide the catheter to where they need it, but he hasn't actually done one on a kid who's had a Senning or a Mustard. Senning is the name for part of the surgery that Connie had and the reason that he has this complication called Atrial Flutter.

So, now we are waiting for Bon Bon to wake up. He'll be groggy for awhile. Then we'll want to start backing off the milrinone soon and see how he does, keeping an eye on the function. Then we'll tweak meds and come home in a few days probably. It could take two weeks to two months (knowing Connie maybe even longer) for him to fully recover his heart function, that is, the ability his heart has to squeeze.

At Children's, they don't allow phones in the CVICU and no computer access either. One parent is allowed to stay bedside overnight and one in the parent lounge. Greg will probably go let the dog out and get some stuff and then come back tonight. We'll try to update again after Connie is awake to let you know how he's handling all this. He's been so brave. The updates and phone calls can only be made if two of us are here and one can stay with him while one goes out to update. So just know that we want to keep you all informed on the latest, but it is difficult right now. We don't want to leave him. They are very strict on visitation policies here so for now we'll have to keep everyone updated via email/phone.

Thanks for the prayers. The big picture and blessing is that God is working to heal Connie's heart. The frustration and communication problems are pretty small in comparison.

Echo

He's getting the transesophogeal echo now to check for clots, then if
all looks good they'll to the cardioversion. We're in the waiting room
and will post as soon as someone comes in to update us.

Sent from my iPod

Greg

Still waiting

Connie is now very fussy. We're praying they begin soon. On the plus
side, his room here is huge, and the anesthesia, echo, and
cardioversion will all be done in the room.

Did someone just pray for connie to settle down? He did!

Sent from my iPod

Greg Beckemeier

We've arrived at Children's

Just waiting. Conway loved looking around at all the decorations.
We're in the Cardiac ICU. Will post more as soon as we know anything.
Conway is a bit fussy, perhaps hungry. No food for him though since
he'll be going under general anesthesia prior to the cardiovert.

Sent from my iPod

Greg Beckemeier

Waiting...

For the ambulance to get here. Conway's watching Elmo. Mom gets to
ride with Conway to Children's. Woop! They're here!!

Sent from my iPod

Greg Beckemeier
CandyCartons.com
(314) 488-2613
www.candycartons.com

Going to Children's for cardioversion today

Dr. Bromberg came in and after consulting with the electrophysiologist at Children's and hearing what a rough night he had, decided to send him down for a transesophogeal echo and cardioversion today. Once his heart is in normal rhythm we'll try to get a better handle on the heart failure and go from there. He has to be NPO for 6 hours so by the time we get there and they get set up we will proceed. Conway is pretty miserable right now. Dad's getting everything packed up for the move. Mom will hopefully get to ride in the ambulance with Conway.

We're scared but also relieved to be moving forward to restoring normal heart rhythm, so keep praying!

May as well post. . .

because everyone is awake and has been since 2:15am. I finally got him to sleep last night around 11:30 and the nurse came in just after 2 saying he was not settling back down. We rocked, sang, everything. He just can't get comfortable enough or relax. I hate seeing him like this. She said yesterday his respirations were in the 20's and by the evening they were in the 40's. He kicks his legs and feet constantly. Maybe Ritalin is the drug we're missing!?(haha). He wants to sit on my lap, but moves and squirms incessantly so there's no napping for either of us. Nurse Beth needed labs done on him before her shift ended so she went ahead and applied the numbing cream at 3:30 and at 4:30 he got blood drawn. Well, it was more like 5 by the time it ended because he had to get stuck 3 TIMES! She could see the vein with the red light, just couldn't get in it. We tried to distract him with an Elmo movie, but he was still pretty upset. We snuggled a little more in the chair afterward until Elmo was over and now it's 5:40 and I've put him in bed. He looks like he has no intention of sleeping. I don't get it.

Backsliding

I left the PICU for a bit to see if me leaving the room would help him fall asleep and realize it was not time to play. When I came back in to check on him I ran into Dr. Bromberg. He asked how he was and I told him he seemed restless and told him about the two bouts of diarrhea he's had tonight and the rash spreading on his chest and trunk. I also mentioned that his breathing seems more like what he sounded like when we came to the hospital and that he's coughing and sounds a little wet when he's laying down flat. He followed me in the room and sure enough, little man wasn't asleep yet. Dr. Bromberg said he thinks he's backsliding. His feet are cold, his liver is bigger and his lungs sound wet. He's putting him back on the Milrinone tonight and going to rethink tonight about the timing for the cardioversion and make a decision. He doesn't want him on the milrinone much longer because he said it's not very good for the heart either.

So, back to square one.

Hopefully once the meds are restarted, he'll get some sleep. . .and momma too.

Say an extra prayer tonight for wisdom for Dr. Bromberg. This decision is a big one.

Evening Update

Connie is supposed to be going to bed, was tired, but is now acting silly and goofy and keeps getting up and getting tangled in his plethora of wiring and tubing. Okay, now he's reaching through the slats and trying to reprogram the IV pump!

He had a nice visit with Grandma and Grandpa George before they left town and is looking forward to getting out of this place tomorrow! He ate more chips and OJ. Not a fan of the apple crisp, fresh fruit, ham or cheese.

Dr. Bromberg came in again and checked things over. He increased the Enalapril to 2.6 ml's 2X/day. He said he would have thought if things were going to go south after stopping the milrinone we might have started to see the symptoms back after 3-6 hours or so. No sign yet other than one case of hiccups and his respirations seem a bit high. We'll keep a close eye on him tonight and go from there.

Wow. . .

I stepped out to go to the cafeteria while he napped and his nurse left for her break right afterward (someone covered for her, obviously). Apparently, while we were gone, the tech came in to do his ECG or EKG, I can't remember which, and he didn't even fuss! He's such a good boy. Dr. Bromberg will look at it tonight but he mainly wanted it to have a history so that the next time this happens we have something to compare it to. By the time I got back up to the room he was back asleep! Amazing child, he is. What this really means is that he's getting too used to being bothered. You know, desensitized! Like watching too much violence on tv or something, only it's having too many procedures in a hospital setting. Sad, really.

I have to say thank you to everyone who has been praying for Connie, calling, emailing, posting messages on his blog, or even just reading the updates. We've got old friends and new coming out of the woodwork offering whatever they can. . .ideas on getting him to eat from his old dietician and OT, babysitting for Mary Kathleen, letting out the dog, arranging subs for me at school, etc. I especially want to thank Lisa, a fellow heart mom, for coming up the past two days to chat and for the special goodies she brought Connie. She has a little boy six months younger than Connie with the same heart condition.

Great Morning

Connie has had a great morning and has had NO EXTRA NAPS! He's been up since about 7:35am and had a visit from Dr. Bromberg right after breakfast. He thinks he looks more active and given the fact that it is noon and he's just now ready for a nap I'd say that his endurance is definitely greater. They decreased the milrinone this AM and right about now are scheduled to turn off the drip entirely. I even convinced Dr. Bromberg to write that if his line should become occluded somehow, they are not to place another IV! As long as he keeps eating and drinking it would be okay to go without IV fluids until tomorrow midday so hopefully we can avoid any more pokes than absolutely necessary. We know he'll be getting his INR level checked tomorrow and again on Friday. We'll be seeing Dr. Bromberg in the office on Thursday and possibly on Monday, but he says I can just call and tell him how he's doing and then we'll be set for cardioversion procedure on Tuesday. This is all IF he tolerates being off the milrinone for at least 24 hours! We know our little boy likes to throw a monkey wrench in our plans most times, so we're not placing any bets. That is just what we'd like to see happen.

In Mommy news, I got offered a massage today and I took them up on it! I got about 15 minutes of peace and Connie sat and played nicely with Nurse Molly while I was gone. What a relief that was. I also received Communion and prayed with the chaplain for Connie's appetite and tolerance to the reduction in meds. This evening Dr. Bromberg is going to increase his Enalapril again to a higher dose than what he was on at home before all this started. His hope is that this will be enough and we won't need Milrinone again.

For breakfast he had a few bites of scrambled eggs and 4 oz of OJ, only because I forced it. All he really wanted was the fritos leftover from last night. Same for lunch. He did drink almost 7 oz of OJ, and ate almost a whole bag of baked lays chips! What is it with the chips?!

I take back the nap thing. He changed his mind.

The milrinone just got turned off. Start praying!

Edited to add: I forgot to mention that Dr. Bromberg also ordered a 12-lead ECG to have on record so that the next time this happens he will have something to compare this episode to. We are going to be looking for a stethoscope for at home to start regularly monitoring his heart rate .

Couldn't Sleep. . .me that is

Connie had a great night. He did wake a few times when Nurse Maureen "Mo" would bother him, but she said he wasn't panicked that I was down the hall. He sat up a few times and even had a few sips of juice and then once, when she patted him for a minute, he covered his face with Monkers to kind of play hide-and-seek with her:)

I had the chance to look up more info on Cardioversion, the name of the procedure that we think he will be getting around the middle of next week. Click on the word to find out more. I'll also post the link on the right side of the page with the other informational links. There are some good illustrations showing what atrial flutter and fibrillation look like.

Six Flags, Anyone?

I feel as if I have a season pass there because this is one heck of a roller coaster. Dr. Bromberg came by this evening and asked about his day. He had generally the same amount of awake/asleep time but did eat a bit more. He said that the function on the echo looks better than Saturday, and frankly, doesn't see a difference between his echo in October and his echo today. He emphasized how hard he's been looking at his records side by side and how he really feels he knows now what is going on with Connie. He says he thinks this is the atrial flutter and knowing how sick he was when he came back from Michigan and how long it took him to recover, he just thinks we're kind of facing the reality that he takes longer to bounce back. He thinks this is going to take some time. His INR levels came back saying he's already in the target range meaning he's on too much coumadin and we cut his dose in half. We'll check levels again soon to see how he is doing. He thinks that we can manage this and keep him out of the hospital with lasix, coumadin, digoxin and raising his enalapril considerably. He's going to try to turn off the milrinone tomorrow and if he goes 24 hours with no milrinone and is able to eat enough without vomiting and staying awake a bit more then we will be looking at maybe getting out of here on Wednesday some time! We'd then be looking at outpatient labs on Friday and going into the office to be checked out and then again to the office on Monday and scheduling the cardioinversion for Tuesday of next week. It's kind of a balance between doctor schedules and where Connie is clinically. His blood is already in the thinned target range so that lowers the risk of there being a clot. Dr. Bromberg said the timing of it is a matter of him weighing the risks and benefits. We talked some time about the possibility of pacing both chambers since presently he is only being V-paced. He said that it wouldn't prevent this from happening again. He already has a lead on his atrium and Dr. Bromberg could turn it on. Right now it is only set to beat if his rate dips below 80. He said it wouldn't matter if the beat was generated from his atrium or from the pacemaker. The problem is when the signal hits scar tissue and goes haywire.
I did get teary when I told him I was scared to death he was going to make us drop an NG tube. He said just keep trying to sneak what we can in him. We are literally aggravating him to death with offers of food and drink. I pretty much stand there with a cup in his face while he plays or watches a movie, but I guess that is what it's going to take for awhile.

So, it was a good visit and we are hopeful for another day of med tweaking rather than surgery prepping.

Keep the prayers coming. Pray specifically for Connie to regain some appetite and tolerate eating. Also pray that his heart tolerates losing the assistance of the milrinone tomorrow.

Dr. has been in

and he is a big believer in what the liver can tell you. Conway's liver is still very full of blood, indicating blood backing up into the heart (heart failure indicator). He is not pleased with his intake and output either so he's ordered the echo for today, is restarting him on Enalapril, the blood pressure med he was on at home, has ordered oral lasix on an ongoing basis and now demands a calorie count. Here's the part I don't like. If his actual intake is considerably lower than it should be (which it is right now), they may place an NG tube and basically force feed him. I can't believe we're talking about NG tubes. I'm so dreading that. They also want another line in him so this afternoon he will get another IV and tomorrow he has to get a lot more labs done. They want another INR along with other stuff. His potassium is too high so he's been switched to an IV fluid that doesn't have potassium in it. We now have to write down every bite of food he takes in and count the calories. I have been pretty good about remembering it all anyway, it's just the pressure of it all now.

So, Dr. Bromberg has made some changes and said that he just doesn't want to draw this out any longer than necessary. He is trying to be conservative, but all indications are pointing to this not resolving without surgical intervention so he's touching base with Dr. Balzer today about setting up a cath for later this week at Children's. Now the concern is that he'll be a bleeding risk since he's been started on coumadin so we may have to discontinue the coumadin for a period before we can go in for that. We'll see what Dr. Balzer says.

This is not the news we were looking for, but I am tremendously relieved that Conway is content. That's the most important thing to me and makes this whole thing a lot easier to bear. When he lays there miserable, like he was before we started the Milrinone, it's just so much harder to take. At least now he's enjoying some things and showing some sort of personality. He even covered his eyes and tried to count to play hide and seek with Dr. Bromberg. What a trooper. I know that is God giving him some peace. That's what I've been praying for and He's answering our prayers.

Will post when I know more. . .like after the echo. . .if he lets me.

Take 2

Well, he never fell asleep at 8. He acted again like he needed to poop but was having trouble. It's so hard to get the timing right on everything. We wanted to give him a suppository, but then we don't want him to poop on the cotton balls in his diaper that he hasn't peed on yet. They want to collect the pee (doesn't have to be sterile) to do cultures. No fever or anything, just standard. So, we have to wait for the suppository. Then he was due for his digoxin but she's afraid to give it and then do his needle stick because we don't want him to throw it up. He was acting tired again so I said let's just go ahead and do the stick and then give the dig and then let him sleep. So that's what we did. We sat him up and hung his leg over the side of the bed and she got blood pretty easily from his toe. He cried, but not constantly and not as hard as the times in the past. I think he likes Nurse Molly:) He was so brave he got a basketball sticker and stuck it right on his gown. Now he's watching an Elmo video in bed and thinking about a nap.

Recap of the morning

Connie fell asleep about 11:15 last night. He just lay peacefully in his bed for about an hour before finally falling asleep. I went to the courtesy room to rest and the nurse came in about 6:15 to tell me she needed to draw blood before her shift was over. The test they were doing required a venous stick and not just a finger prick. So she woke him up putting a warmer on his foot and one on his hand. I held him and she got a vein on the first stick. He cried and cried but was brave. He finally settled down for some crackers and juice and Max and Ruby when she came in to tell me that the cap wasn't on right or something and the blood leaked in the bag on the way to the lab. Needs more blood. Ugh! Now he's eaten and is likely to vomit if he gets that upset again so we're waiting to restick him. He ate a little cheerios, some crackers and about 1/4 donut. He also had about five bites of scrambled eggs and one bite of a nutrigrain bar. A few sips of milk and then he was ready for bed again by 8am.

After he wakes up we'll try for more blood and then that should be it on the procedures for the day. There was some talk of Dr. Bromberg wanting another echo today and I'm pretty sure if the milrinone is to be stopped, he'll want to see the LV function on echo first. Haven't heard from him yet today.

Will update when we know more.

Ahhhhh!

I'm sure Connie feels just as good after getting cleaned up as I did after my long awaited shower this evening. Nurse Judy hooked him to a portable monitor and we carried him over to the sink to wash his hair and then he got a wipe down and smells like lavender. If Dr. Bromberg okays it tomorrow to take the leads off he may get to splash around in a little rubbermaid bucket. You should have seen him tonight when I asked him if he wanted a bath. He agreed with his whole body. I don't think he had the same thing in mind as what actually happened. He kind of freaked out having his head under the running water. Probably thought it was some new kind of torture. He cried through the whole thing but settled quickly and is now drifting off to sleep with the music of the hospital calm sounding music channel. What a big day.

He ate more crackers and drank more than a whole serving of orange juice. I can't believe with everything that's been offered to him he prefers saltines, but whatever. Dr. Samples said that kids this age have a way of self-regulating with diet and his body knows what he can handle or what he needs and is taking that in and nothing more. He wouldn't even consider eating one of those smiley faced tater tot things with ketchup.

I just can't explain the relief I feel watching him eat crackers and comment to the TV while he watches Max and Ruby.

Smiling

We got Connie's first smiles this afternoon! Grandpa Beckemeier was unable to visit because he's had a cold recently, but he sent up four balloons from the gift shop along with some toy cars. When they were delivered to the room, Connie's face lit up. He LOVED his "melmo" balloon and thoroughly enjoyed bouncing the balloon off of my face. We snapped a couple pictures and I'll get those on as soon as I can. He was awake a good part of the afternoon and enjoyed seeing some visitors briefly. He fell back asleep around 6pm or so.

While we were sharing stories about cute things he does at home, he picked up on that and started re-enacting or just 'showing off' a bit. I'm no doctor, but I'd say that means he's feeling better. . .The other great news is he ate an entire bag of Baked Lays sour cream and onion chips that he saw sitting on the bedside table! Not exactly my choice or what I have been ordering him, but at this point, we'll take whatever works!

His Lasix worked again today as he had a major soaker diaper. Went through his pajamas and even required a bedding change.

Mid-day update

Dr. Bromberg has been in and reset the pacemaker to 100 bpm. He was hesitant to turn it too far down, too fast yesterday. He was happy to hear that he had a restful night and kept down some crackers and cheerios. He and Dr. Samples would like to see him awake a little more and not so lethargic, but more playful and eating better. He said he probably shouldn't have made any promises yesterday about turning this failure around just by lowering the rate. With Connie coming into it with a couple of strikes already, meaning that he already didn't have normal function due to the leaky valves and somewhat stiff LV, that it was unrealistic to think that he'd bounce back very overnight. He said it may be more of a four or five day thing. He's hoping he is better clinically and that he can stop the milrinone soon. Ideally it is a 24-72 hour fix. If he doesn't tolerate coming off of it or doesn't improve drastically from where he's at now in the next four or five days, he thinks it may be time to take a look at the valves (via cath) and talk about whether it's time to repair or replace a/some valves.

Overall, he's pleased with the progress. His lungs sound better than yesterday. He's going to give him more Lasix today though which should get rid of some more of that fluid and make him feel better. He'll get a venous blood draw tomorrow to check his INR levels for the coumadin and probably get that again on Friday.

Say a special prayer for Cece today. In about 45 minutes she is set to receive her First Holy Communion. The chaplain came in today to offer prayer and communion and I told her about Celeste and we said a special prayer for her.

Will update more if anything changes. . .

A little video and some pics to make you feel better

We took some video of Connie last night and this AM after the milrinone was started so you could see him doing better. He ate some cheerios and watched some Max and Ruby this morning and now he's napping again. I found liquid on the floor near his pump and turns out that his Milrinone was unhooked and dripping onto the floor! The night nurse admitted her mistake to the Intensive Care doc who is on now and she said it couldn't have been unhooked for more than an hour or so. She had unhooked him to detangle the wires and then forgot to hook him back up. The doctor said it shouldn't make a critical difference being off of it for a bit.

Photo and video editing at www.OneTrueMedia.com

He soooo needed that

Connie had a great night. He hasn't been this peaceful in over a week! St. John's offered us a hospitality room right down the hall so Greg stayed in the room and I went and slept from about 10:30pm-5:30am. I only woke up once! I panicked, thinking I missed the 5am blood draw but the nurse told Greg she'd wait until 6 because she knew I wanted to be there and since he was sleeping so well. Even though I don't want him to need it right now, I'm so glad the Milrinone is giving him some peace and the ability to rest. I'm anxious to see what his demeanor is like after getting some much needed sleep and now that his heart has been relieved a little.

I guess we all have a lot to be thankful for and a lot to talk to God about this morning at Church.

I looked up amioradone (sp?) and found the side effects. Let's just say I will stop getting ahead of ourselves and just keep praying that these flutter episodes happen infrequently enough to stay off of it!