Friday, May 8, 2009
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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!
We'll update again after we get the plan for the day.
Thursday, May 7, 2009
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.
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!
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.
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.
Wednesday, May 6, 2009
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!
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!!
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.
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
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
We're scared but also relieved to be moving forward to restoring normal heart rhythm, so keep praying!
Tuesday, May 5, 2009
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.
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.
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.
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 .
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.
Monday, May 4, 2009
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.
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.
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.
Sunday, May 3, 2009
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.
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.
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. . .
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!