"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Saturday, August 29, 2009

Itchy and Getting Sore, But Moving Forward

Connie is still itching and scratching, despite the benadryl. Good news is he's not needed anything other than tylenol and his morphine drip is down to 20. Tomorrow it will go to 10. Hopefully getting less of it will improve the itching. He got a bath and even got his hair washed!!!! and after that I got to hold him. He fell sound asleep and we went to move him back to bed. That woke him up and all the jostling around got him pretty sore around his chest tubes. He laid back down and avoided needing any PRN IV morphine. He's since gotten up once to eat a few more bites and drink a few sips. He's getting sleepy again and we're hoping for a restful night since it will probably be our last night in the ICU.

Video of Progress!

Still Doing Great

Connie has had a whole carton of chocolate milk, over 150cc's of orange juice and several saltines. He fell asleep waiting on his food from "room service". His biggest issue today has been an itchy face. He's been sitting up to eat and drink and been very responsive to our requests like asking if we can give his monkey a kiss. He's enjoying watching Max and Ruby and Wall-E in between napping. We'll start weaning the morphine drip this afternoon after that dex wears off completely so we can see what his baseline is for pain. He just got his benadryl and is snoozing again. It's so nice to have him back!

Great Night

Connie had a great night. He settled down with one dose of Ativan and had nothing after that. He's now on room air as he d/c'd the nasal cannula himself! The plan for today is to go down on his morphine drip, get off the dex, decrease lasix to Q12 from Q6 b/c he's putting out more than what his going in, and watch his crit. He's a little borderline, so if he needs volume, it will probably be blood. They want to get him eating today and they are splitting the mediastinal chest tubes so that they can tell if either one has slowed down enough to come out. That decision will probably be made tomorrow. They're keeping the arterial line in for today, but I will still be able to hold him. He's been such a good boy. Greg stayed with him through the night and when he came back to the room he said that Connie did some cute things but I was so tired I can't remember what they were. I'll ask him later after he naps.
One thing they are watching are some arrhythmias. I'm not sure what exactly, b/c it was during the night, but he's having extra atrial beats, and quite frequently. The night nurse felt it might be due to the way his pacer was programmed in the OR, but on rounds they discounted that and said it was fine and the ventricle was sensing the beat and responding appropriately or something to that effect.

Friday, August 28, 2009

Still holding his own

No More ET tube!

Still intubated and a little puffier

With Grandma Marybelle

With Uncle Geoff

I love Daddy

Connie's had more blood gases and they still look great, despite a few incidents and being pretty uncomfortable. He got suctioned and was not happy with that and dropped his sats and pressure and RR and HR went up. This lasted a few minutes before slowly creeping back up. The nurse says we're no where near reintubating yet so not to get too alarmed. He's needed a second dose of the breathing treatment for stridor and some ativan b/c he doesn't seem in pain, but is definitely quite anxious and more aware of his unusual surroundings. He is asking for his "pod" (iPod), to eat, for help (which means he wants help down off the bed) and saying and signing "all done". He also asked for more when the first episode of Max and Ruby ended. He was definitely paying attention, even though his eyes were closed.

Good Gases

Connie's blood gas an hour after extubation looks great, showing that he's tolerating breathing on his own. He's still working a little hard, but hopefully that treatment for the stridor will be effective. Keep praying for a smooth night. We had to give some versed to calm him down but we walk a fine line here. We want him calm and not working too hard to breathe, but we don't want him so calm he is too tired to breathe. It's kind of a balancing act.


Connie just got extubated. The chest tube placement was great as it relieved over 200 cc's of fluid from around the left side of his heart. He started getting a little too sleepy and not breathing over the vent so they went down on the morphine drip so that he could wake up enough to breathe in anticipation for extubation. He sprinted for an hour and was completely restless the whole time, taking two of us holding him. Wouldn't you know he's been clear sounding all day until it's time to extubate and then you can feel the junk in his chest and hear it when he was sprinting. They extubated and he's really working hard so they are calling it stridor and treating him for it. He's had it before and two treatments did the trick in the past. Once he proves he can breathe on his own, we can give him some more sedation to calm him down, but he has to prove it first. So right now is hard watching him be upset and then that makes it that much harder to breathe. Pray that he gets rid of this stridor (upper airway blockage) and settles down. Probably no holding any time soon, at least not yet. They want him off the dopamine and maybe with less lines. Of course, if he is really unhappy, they may let me as a last resort to calm him down. He's such a momma's boy.

Chest Tube In

Connie just received his new left chest tube and the procedure went very well and we should be allowed to see him in about 15 more minutes. Pray that this is the final hurdle and he now moves in the right direction. He's getting a little harder to settle, needing the morphine and ativan together rather than one or the other. They haven't yet gone up on his dex because we're hoping to extubate later afternoon or night and it wouldn't really kick in until then anyway so they're trying to hold off on upping his drips any. He's arching his back some and crying when he wakes up. Poor baby. It will be so much better when he gets that ET tube out and loses his LA line. Then he can have some more freedom.

Plan for the Day

Connie's bleeding slowed down, but his crit continued to drop some, indicating that the bleeding was still going on, just that the chest tube had clotted. He has been given a total of 4 units since coming up to the ICU and has orders for more today. His numbers all look great except for his crit, but the x-ray was very telling this morning. His left side looks terrible so they ordered a left chest tube to be put in and he will be having a fogerty (sp?) procedure done to try to unclot the mediastinal chest tube. The surgical resident feels like this will be the help he needs to get moving in the right direction. Once he relieves some of his pressure on the left side, his bp should come back down (it's been slowly creeping up all night). They are keeping his minimal pressure support (dopa at 6) until he's proven himself after the procedure. Sedation-wise, he's stayed relatively stable overnight. He's had PRN's of morphine and ativan and had to have a little versed during x-ray and weighing and rounds due to being messed with so much. He started arching his back and looked like he was crying. Of course you can't hear anything when he's intubated. It only lasted 10 or 15 seconds and then he was restful again after the versed. He seems to like the dex. I'm so glad we found something he does well with instead of a constant battle to keep him settled. At least with him settled, we can focus on the bleeding and drainage. He's been given so much fluid that his feet especially are starting to balloon so they will start Lasix today Q6.

So, if he can get his pressure down a bit after they insert that left chest tube and unclog the middle one, they may try some sprints off the vent and eventually extubate later today. It really depends on what happens with this bleeding.

One new bit of information I learned during rounds was that during his TEE yesterday (the echo they do in the OR after the operation) they noted that he has LV function is "severely depressed". What?! Why did I not know that before. The resident on this morning explained that they think it is just an issue due to all the "monkeying around in there" yesterday and thinks that if they were to do one even now they would see that improved. He said Connie is not acting like a kid with a severely depressed LV and he's showing them he's fine through his numbers and the minimal amount of support he's on. That's somewhat reassuring, but I don't think I'll really feel better until I hear words like we did on Monday telling me that his LV function had been preserved and looked great.

Prayer focus for today needs to continue to ask God to help with this fluid issue, mainly blood loss, and that his LV will kick back in and recover fully from this operation. Also, please ask God to give me patience as I'm in such a rush to extubate him so that he can start waking up and show us that he's okay.

We've had great nurses and are so thankful for all their help. They really do a great job taking care of the sickest kids in the world. There are 21 PCTU patients right now and only 15 beds. They have kids in PICU and NICU and all over the place b/c they just don't have room for all the cardiac kids in one place. Tawnya, it was Kelli V. and yesterday was her last day. She's moving to Cali to go to NP school and be with her boyfriend, the CT surgeon. There's been some turnover here, but most everyone remembers us and that has been comforting.

Thursday, August 27, 2009

Needing more blood

Conway is being given another unit of blood. This makes the third unit since getting up into ICU. They don't have in their notes how much he got in the OR, but they said it was a lot because as soon as they opened him, he lost a lot. He's being given cryo and had platelets and plasma too. His gases look excellent from a respiratory standpoint, and his numbers on the monitors are fabulous. The bleeding is even starting to slow down again from the chest tubes (it has been kind of yo-yoing all night). The only thing troubling the staff is that his crit has dropped, indicating that he is still bleeding. If he's clotting in the tubes and still bleeding around the heart that is a bad thing. It sounds like they are not in a hurry to rush back to the OR to do "chest exploration", but that is a possibility. They say that they are hoping after this blood and a few more hours he will settle out and his crit will come back up. On a good note, he is quite sleepy. We've been talking and he is doing what the nurse calls, "waking up appropriately". Not too soon, and not too long. He moves a limb, opens his eyes and goes back to sleep. I was planning on going to sleep tonight so as to give him no stimulation or reason to want to get up and fight the sedation, but now I think I'll stay unless I absolutely can't manage anymore. I just don't feel good not knowing for sure that he's going to stop this rollercoaster with the bleeding. Please pray for his bleeding to once and for all subside or get to an acceptable level. The nurse's fingers are about ready to fall off after "milking" the chest tubes so much. It's almost constant. She can stop for five mintues to get a little charting done or give a med and then it's back to working those tubes.

On our toes

Well, during that hour or so that we had to leave, somebody woke up and decided he wanted to get out of bed. He reached for Kelli and was wide awake wanting to be held. She knew when he saw me he'd really go nuts. She asked immediately for some sedation. Morphine and Ativan were useless. Then they starts dex and went up on morphine drip. Still climbing out of the bed and rolling over. Dr. Bocks ordered him paralyzed until they can safely sedate him. All his yellow lines on the vent (him breathing on his own) are gone and it is doing all the work for him. He's added two more drips to his med tree now. This paralytic is supposed to last 2-4 hours and he's already waking up. Please pray he settles out and calms down u til morning.

Stable, but no rush

Connie's bleeding has significantly slowed, but they want to take the cautious approach and really keep an eye on his pressures through the night before attempting to extubate. He received blood, plasma and platelets. He's doing well, scratching the heck out of his face b/c of the morphine. Just got a little dose of benadryl and his arms in restraints b/c we had to leave for them to do a sterile procedure on the kid in his room. Those of you who have been to Mott will appreciate this. He's not even in the bay!!!!! I thought all kids went to the bay after surgery--especially a "level 9" surgery. When Kelly came out to get me and she walked me back to him, we turned right instead of left toward the bay and that's when I knew he was going to be alright. He lost over 220cc's in 30 minutes. His chest drain was like a red snake. He has two chest tubes directly in the center of his chest. Another odd fact, he got pacer wires again, even though he has a pacemaker!! Just a general precaution since his pacer could malfunction or there could have been damage to it or the leads or something. Okay-the procedure is on hold for awhile so I'm going back in. Take that back. They said it actually is a go for now so we are stuck waiting for an hour. The bad thing about having to keep him intubated overnight is that he will be unhappy and have to be given a lot more sedation. You fight a battle between keeping him calm and happy on the vent and too sedated to do the work to breathe. Kind of a viscious cycle so we're hoping he will definitely be in shape to be extubated in the AM. Another plus is he's only on three meds. He's getting IV morphine, milrinone and dopamine. I bet some of those start decreasing tomorrow if he stays on this track.

Good news re:bleeding

Hi everyone. This is dad. Looks like the bleeding is under control. He lost 230ml the 1st hour, but has only lost 90ml the 2nd hour (I could be wrong on the units of measure, but you get the picture that the bleeding is way down). Conway is awake and coherent and he WANTS THAT TUBE OUT OF HIS THROAT!! Erin is with him, comforting him right now. I can't tell you what a relief it is that Conway is angry. This beats the hell (pardon my French) out of him being catatonic for 3 weeks like last time!

They're even talking about ex-tubating him tonight!!


Bleeding Issues

The fellow who assisted Dr. Bove happened to stroll through the parent lounge to get a cup of coffee. I stopped him and asked when I would be able to see Connie. He said that he is stable, but he is draining quite a bit from his chest tubes and they are giving him "products" (blood and such) right now to try to get this bleeding under control. They want it to slow down a lot within the next hour or so and if it hasn't they will "make a decision". I asked if that meant they might have to go back in and he said yes, but right now they are hoping to get it under control up here. Please pray for his bleeding to get under control. It will probably be at least another hour before we can see him. On an unimportant note, his nurse is Kelly.

Spoke with Dr. Bove

who apologized for not meeting up with us this morning. He looked for us in the pre-op b/c he had been told we were discharged last night. He didn't know we were inpatient either!! Anyway. . .
He was able to repair the mitral valve using a procedure called annuloplasty where they place a ring or band around the valve to help it hold it's shape. It has a mild residual leak, which is what we were expecting. The aortic valve only leaks mildly and he's not sure what all the fuss is about that. He was able to successfully ablate the areas Dr. Bradley pointed him to near the inferior vena cava. Time will tell if that will be enough ablation. He did not need to replace the conduit at this time and is hoping to wait until Connie could handle an adult sized conduit, which, get this, would be the last one he would need!!!! That's something I wasn't aware of. Apparently, because he still has his own valve there and just has a gortex piece, he won't need it changed throughout his whole life, just a bigger one placed when he grows. That is maybe the best news of all of this. He is closed and is on his way up to the PCTU and we'll be able to see him probably within the hour or so. Oh, and he was only on bypass for 85 minutes!! He's such a rockstar. From the sound of things, it couldn't have gone more smoothly. He said he's going to try to get him off the vent as soon as possible, hopefully start sprinting him tonight and extubate in the morning. Thank you God for this success!

They're Done!!!! He's off bypass

The NP just came back in to say they are done. It looks like they repaired the mitral with a ring??? and they are doing his echo now. Dr. Bove will be the next one we will see and he'll give us the full report of what he did/how it went. This must be a good sign that he's done so quickly. She said it will probably be in the next hour that they get done with the echo and close him and then move him up here to the ICU. Once he's in ICU, it will be another hour or so to get him settled and stable enough for us to visit. Praise God!

2nd Surgery Update

The NP, Deborah, just came back in and said that he's still stable and doing well and when she was in there it looked like he was "putting the valve in". To me that sounded like a valve REPLACEMENT so I asked if he had to get the mechanical valve. She said that it didn't look like a mechanical valve, it looked more like a ring. She asked me if Dr. Bove had mentioned that to me and I said I'd never heard of it so she was going to go back down and clarify and let me know for sure in the next update an hour from now. She said that a ringed valve doesn't require coumadin!!!! Woo hoo!

1st Surgery Update

The Nurse Practitioner came in at 10:45 to say they just "got started". I guess it did take a while to get safely back into his chest. We'll hear more in another hour. Things should go a bit more quickly now, but they also don't like to give updates unless something is accomplished.

In Surgery

Conway was taken back to the OR around 8:40 eastern time. They said it could take quite a while to get through the scar tissue from the previous surgery so not to expect an update for a few hours.

He slept great all night. Woke up at 7am asking to "eat". They were supposed to take him down at 7:30am for pre-op but no one came. I asked at the desk and they said that downstairs would call when they were ready for him. 25 minutes later I asked again and they called downstairs and the people downstairs were waiting for us. They apparently had not been told that he was inpatient so didn't send up transport or orders for him to come down. They thought we'd just report down there at 7:30. Then Dr. Bove's assistant who was getting consent wanted to remind me about the large possibility of Connie getting heart block and needing a pacemaker after this surgery. I said, "You mean like the one he already has?" That made me feel great that he had really done his homework on my boy (note sarcasm). I must say, though, the anesthesiologists have really been on their A game here. They all have his entire history memorized. The one today is from the UK and has worked with CT surgeons like Marcus Hall and Bill Brawn. He's phenomenal. He said were in one of the top two places in the world for this and Connie couldn't be in better hands. We were joking about how it seems that Connie has a rather high tolerance and he said that the good thing about his profession is that they "always win", meaning that the anesthesiologist has the final say since they just add more or whatever. It was cute. We didn't get a chance to talk with Dr. Bove before hand and were a bit bummed by that, but to tell the truth, I didn't think we would anyway.

They tell us that on a scale of 1-10, this surgery is on the level of a 9. So, I guess that means we need to intensify our prayers!

Connie was such a good boy. He got some versed in his IV and still was a bit unhappy (hungry) but they wheeled him away in a red wagon without any crying or anything. He took the iPod, his monkey lovey and his bag of blessed things into the OR with him.

Wednesday, August 26, 2009


The doctors are finished. The ablation went well. I'll let Erin explain it in more depth on her next post as she's so much better at it than I am. Surgery is on for 7:30 am CST tomorrow. Dr. Bove will finish up a few loose ends regarding the ablation, but it will add very little to the time Conway's on bypass, which is GREAT. Erin is now with Conway as he recovers. Pray for a good night's rest before the big day tomorrow. God bless all of you, the support we've received has been nothing less than remarkable!

First Cath Update

Well, he was taken late partly because the case in front was running late so they had to set up an entirely different room, but even then, they had to wait for an anesthesia team to become available. Dr. Lewis (who has a killer accent, by the way) is the anesthesiologist who will be on the case. He said he did his homework for this case and is ready for what Connie will bring. Apparently it takes quite a bit to keep that boy down. Just learned today that he woke up in the cath lab on Monday and had to be given more drugs! No wonder he slept through the whole night!

Brynn called some time ago to tell us that things were going well and the next update would be from Dr. Bradley himself when they were finishing up. She also said that Dr. Bove did get in touch with them and apologized for not having spoken with us directly before now but that he would talk with us in the morning. He's had mulitple OR cases today. He has had a chance to review the information and says, yes, he still feels surgery is the best, most appropriate option at this point. Since Conway will be admitted again tonight, they will just take him down to the OR around 7:30am Eastern time and the surgery will start at 8:30 eastern. Time to turn those prayers up a notch! If they aren't able to ablate him tonight in the cath lab, they will try to pace him out of the flutter (which has never worked in the past) or use the catheters to get it to stop. If that doesn't work, then they'll have to cardiovert him again. This scares me. That would be a lot for his little heart right before tomorrow's surgery. Brynn says the risks aren't so much increased doing back-to-back procedures heart wise, but it's more that they don't like to use so much anesthesia so close together. He will be out all evening and then early in the morning get it again. That's a lot for a little body. Pray that he can handle it all.

Running late

The case before Conway ran late, so they've just taken him back for the cath. Erin said he has all his blessed trinkets and she also doused him with some Lourdes water. Uncle Tim & Terry arrived and got to see Conway before they whisked him away, so that's good. Will post when I know more. Greg

Prayers are working

because he fell asleep about 12:30ET and has been sleeping since. Hopefull he'll sleep close to the time they take him.

Forgot to mention a funny story earlier. So we've loaded up three loads of laundry and headed out with him, the stroller, the hamper and detergent. On our way to 5E to do some loads. No sooner do we leave our room at the Med Inn, does the fire alarm go off. I'm thinking you have to be kidding me! Aunt Barb carries the clothes and I carry the stroller from the 5th floor to the ground down the stairs since you can't use elevators during fires, right? We get down the the lobby to hear an announcement saying they are doing a fire drill in the Med Inn. Lovely. I'm glad I didn't trip down the stairs with the stroller! No fire, just a drill. Now I know how the kindergartners feel that first time in school. I felt like crying too!

Pray for patience

for all of us. Connie is asking to eat and obviously is not allowed to. He has two more minutes to drink apple juice and then that's off limits too. We're up on the 8th floor trying to keep him busy, but it's raining hard out so the playdeck is closed and there's not a lot more we can do to distract him. We are to report downstairs at 1:30 and then they are planning to take him to the cath lab at 2:30.

Conway is in flutter

Hi everyone. this is dad writing. Just spoke to mom. Conway was acting strangely the past few hours so mom asked if they could test him. They did and he is in flutter. So: a cath is scheduled for 2:30pm eastern time so they can map the heart and perhaps perform an ablation. This is a double edged sword. On one hand, we're glad he's in flutter so they can map his heart, on the other hand, we hate to see him so unhappy when his heart is not working right.

I'll post as soon as I know more. It sounds like Dr. Bove is going to recommend we move forward with open heart surgery to repair the mitral valve, and the ablation will either be performed this afternoon or perhaps during the open heart surgery. We're thankful his little heart is "telling them" where it needs to be fixed, but we're also very scared. Please keep praying, I promise to update as soon as I know more...


Tuesday, August 25, 2009

Evening Update

Still haven't heard from the team or Dr. Bove himself. Echo was finished up about 3:45 or so. Dr. Ensing, the cardiologist that read yesterday's echo, did it himself today. He even did some on the 3D imaging. He thinks he got some good information today for Dr. Bove to be able to make the decision about what to do. We went to the gift shop and bought some bubbles and went out to the meditation garden and blew bubbles. We sat in the lobby for a bit watching the iPod and then he wanted to take another nap so at 5:30 he fell asleep for the third nap of the day.

Echo Update

I hate how these always post in reverse chronological order. . .
Here he is back at the MedInn

With Dr. Bradley this morning

Sleeping this morning with his own blanket and pillowcase!

Getting moved to the floor

In recovery

Construction of new hospital progress

Killing time on playground before cath

Sight seeing in Ann Arbor

Posing with Big Bird near the front entrance

Dr. Bradley (EP) called and gave us a bit of a status update. The main guy that is reading the echo from yesterday evening says that he wants a better view of the mitral valve, meaning they need to repeat the echo. The saw the valve in the cath lab, but the best view of it is actually on echo. So, we are waiting on a call from him to tell us when to go back over to the hospital and have that done. He didn't say whether or not they'd be sedating Connie, but he didn't tell us not to feed him either, so my guess is he'll just cry through it. He's usually such a good boy for all his testing, but he knows something is up and doesn't feel good so he's not having any of this. We had to wake him up a little before 8 am to go down and get another EKG, pacemaker interrogation and hook him up to a 24 hour holter monitor. He'll wear the monitor until tomorrow morning. He's had no bleeding from his cath sites (on both groins) and all seems okay. Just some tylenol for pain. He fell asleep about an hour ago and is out like a light. While we were waiting for discharge he ate a little granola bar and some cheerios and chocolate milk. No nausea!!
Okay--quick echo today at 3. Guess we probably won't hear from Dr. Bove until after that.


Praise God Connie had a great night. He finally got in a room about 8:45. Despite his roommate's alarms and frequent door opening and closing he seemed comfortable and peaceful. He was agitated and fussy around 5am so they gave him some tylenol and within 20 minutes he was back to sleep.

Dr. Dick (EP) was just in and went over some of yesterday's events and asked what Dr. Aiyagari found. I told him all of it and he said, "Let me tell you a little secret. Whenever you can avoid an operation, do it." Maybe this is all for a reason. Who knows. Maybe they'll say surgery is a no go. He thinks he looks healthy and then asked what meds he was on. When I told him, he said, "Well, he's on all of them already so we'll just have to wait and see what they (Dr.Bove) say." He said he was glad it wasn't him having to make the decision.

Monday, August 24, 2009

4th Cath Update--Disappointment

Ugh. Dr. Bradley was unable to induce a single extra beat. He couldn't get Connie into atrial flutter at all so therefore they could not get a map and could not attempt ablation. No mapping means no information for Dr. Bove either. He said he does think there are a couple of places that he is pretty sure are causing some problems, and that Dr. Bove could possibly still try to freeze those areas during surgery on Thursday, but now they are not so sure that he will even want to go ahead with surgery give the total picture. We are in limbo right now. Dr. Bradley is calling Dr. Bove now and said they all need to put their heads together and come up with a plan. I asked if those discussions could involve Dr. Bromberg and he said he is certainly going to get him in on this. After they all talk, Dr. Bove will talk with us and we will decide together what to do. He may go ahead with surgery and send him home on amiodarone for another year and then try again at that time to do an EP/ablation or he may say send him home now and manage the leaky valves for longer. I would love to avoid surgery, but I don't think I can deal with Connie for another year or more with his current level of decreased activity and increased neediness! We'll see what they say. He should be leaving the cath lab in the next few minutes and heading up to recovery. They'll call me when he's there and I can come be with him. They are going to watch him overnight, especially his blood levels. They are keeping his arterial line in so I don't even know if I'll be able to hold him with that in. Hopefully I can. He's much happier that way. They said they think they replaced all the blood he lost, but that he might have been a bit low to begin with and they wrote orders for him to get more through the night if needed to bring his levels up to prime if he is indeed to have surgery on Thursday.

Dr. Bradley said his lovely nurse who prepped everything that would be needed for today was so let down by this. She put so much work into this case and she told him it was like she prepared a huge Thanksgiving Dinner only to have the dog eat the turkey! I did laugh when he said that, but I can't help being disappointed. We wanted so badly to get EVERYTHING fixed while we were here and now it looks like there's the potential to get nothing repaired, just go home as is and wait. Pray now that Connie will be okay when he wakes up and not nauseous or too fussy. Pray that he has a good roommate and can get some rest tonight while he's inpatient and that he feels "all better" tomorrow and can get out of the hospital for a couple of days.

2nd/3rd Cath Update

Dr. Aiyagari just called. Connie is doing well. He is receiving a blood transfusion now because he lost a lot of blood when an arterial line decided to "work it's way out". Other than that, it sounds like fabulous news to us. In the doctor's words, things look better than expected in most areas. His left ventricle function is better than expected and there is no LV dilation! The aortic valve is leaking a "mild to moderate" amount only, not necessarily even needing to be addressed surgically. The mitral valve is as expected and leaking a "substantial" amount. That fits with what Dr. Bove told us his plan would be anyway--to attempt to repair that mitral as best as possible in hopes that it will take some of the pressure off of the aortic too. So, all is looking in a positive direction. The doctor says his conduit looks small for him which is understandable since it was placed when he was only 5+ months old. It looks like that will be replaced during surgery, but that will be Dr. Bove's call. He still has stenosis in his right pulmonary artery and branch arteries, but the left is wide open. Dr. Bradley is working now on the electrical portion, trying to get Connie into atrial flutter so they can map it out and possibly ablate it. Please pray that this part goes smoothly and Connie cooperates. It is possible that they won't be able to get him into flutter, meaning they would have less information to give Dr. Bove to use during surgery. Pray that they get him into flutter and can ablate it in the cath lab.

Dr. Aiygari said that there still is quite a bit to do and that he'll be in there for some time. This is not a short process. We'll update when we hear more. Thanks for your prayers.

p.s. Greg and Mary Kathleen will be arriving at Applebee's on MidRivers Mall Drive around 5pm tonight for the Care4Conway benefit to help offset the cost of the trip and insurance premiums. They'd love to see you and get a hug from you!

1st Cath Update

Connie is doing fine. They just got all the lines and catheters in and now are about ready to start Dr. Bradley's part, the EP study. This will be the longest part of the procedure. He told his wife not to have dinner ready for him! They had no trouble getting access. Some kids have occluded veins and arteries so it can be challenging getting in. Not with our boy. We might just get that "best case scenario" yet! Dr. Ayagari (sp?) said all the stars will have to be aligned, etc. We know our God put those stars in their places so He can give us that outcome. Keep praying!

In the Cath Lab

Connie is now in the cath lab. As of 1pm Eastern they took him back and gave him the gas. He did not like the NP that was testing him. He never fusses for pacemaker checks and this one was quite long and he cried through the whole thing. We were also told that they would be getting all his blood and echo done after he was asleep but they wouldn't start the procedure without an INR level so he had to get a toe poke/squeeze anyway. He also didn't like the versed in the nose, but it did the trick of making him loopy. By 1pm he was quite hungry and tired and fussy with being messed with so even with the pre-med on board he was still quite agitated. We should get another update around 2:30 eastern time so I'll try to post then what is happening. Dr. Bradley and Dr. Ayagari(sp) are doing the cath and EP. We remember Dr. A from the last time we were here. He took care of Connie in the ICU for part of the time. He said he would be surprised if Dr. Bove didn't replace the conduit because the mitral valve is actually behind the conduit. It would be incredibly difficult to get in there to repair it without cutting out that conduit first. I asked Dr. Bradley about how many successful ablations have been done here on kids with Connie's anatomy, meaning, kids who have had a senning procedure. He said Connie would be the youngest (smallest) ever. Here's to making U of M history! Hail, Hail Michigan!!! Okay, Aunt Barb and I are starving so we are going to grab a bite before the next update. Since he couldn't eat, neither could we!

Oh, a note to the O'Leary kids: Your mom's phone charger is dead. She still has some battery, but has turned her phone off. You can call my cell # if you need her.

Crazy Night

Guess who woke up at 1am and didn't go back to sleep until 4am? That's right, Connie (and therefore me too). At 2:30, he asked to eat, and knowing he wasn't allowed anything after 6am, I gave in to that request. We went down to the lobby and had 1/2 a twinkie and some apple juice. When he woke again at 7:50, the first thing out of his mouth was "eat". This is going to be a long morning! Pray that we are able to keep him busy and keep his mind off of eating.

Sunday, August 23, 2009

Ready for the big day...well, one of them

Connie did take a great nap. Even slept through the room change! When he woke up it was raining so that blew our plans to go to the petting zoo, but we did hang out awhile at the hotel and then it cleared up enough to go walking the main drag in Ann Arbor. We went in a few shops and bought some Michigan t-shirts and then went out to dinner. We even were walking through the quad area and they were shooting a movie. Who knows, maybe we'll be movie stars! We got back and video conferenced with the family back home and now he's in his booster chair eating goldfish, mandarin oranges, M&M's and water while he watches his Max & Ruby on the iPod. He must know that he has to go without breakfast and lunch tomorrow.

We will try to keep him as happy as possible until his appointments starting at 10:30. They are scheduled to take him into the cath lab under a general anesthesia around noon. We shall see if that is the case. I'm sure going to push for them to put him out as close to that time as possible since he will be STARVING and probably a bear to deal with. Please pray tonight that he is cooperative and not too fearful tomorrow and that he is easily distracted in the morning while we wait for noon to roll around.

Free Day

Today is a free day for us. Not a great night of sleep for any of us, but what can you expect? We went to Mass this morning and then out to a great spot for breakfast, Angelo's. Now we're back and trying to get Connie down for a nap and they come tell us they are moving us. So, we'll see if anyone gets a nap today. We're hoping he'll sleep for awhile and then this afternoon we can go to Domino's Petting Zoo. The weather is cool enough for a jacket! Isn't this August?! The sun hasn't peeked through too much the last two days. Not terribly ugly, just a little depressing. Of course, I'm already a bit predisposed to the blues given what we're here for!