Death Stare

Matt will not let any doctors or his nurse in his room without staring them down. Most of the day he spends watching the Disney channel. He has a ball to play with that he keeps by his side, cuffed under his arm. When someone comes in the room he will stare at them until they leave, never taking his eyes off of them. One of the nurses nicked named the stare the 'death stare', because he looks like he'd like to kick them.

A Step Back

Matt was put on high flow O2 after I left last night. His upper left lung collapsed. A set back but the doctors will be trying to ween him off the high flow later today. He also throw-up on Philip. No more breast milk and back on IV feeds.
Matt has an echo cardiogram going on right now to look at his heart function. He is still on the Milrinone (heart med). The doctors are still happy with his progress and hopefully we will step down on Sunday to the surgical floor. On the surg. floor their is a bed so we can sleep in Matt's room and room service. Last night Philip slept on a couch on a different floor and out in the open. He slept horrible.
I went home last night and slept till 9am this morning. I plan on sleeping here tonight and make Philip go home to sleep.
I talked to Lillian this morning while her Papa was doing her hair. HA HA. I told her to tell Papa to braid it. HA HA. Marissa went to seminar with my Mom and had a good time. All the kids thought she was so cute and she felt like a big kid. A win win situation.
Thanks for your prayers. Don't stop. We would love to be home for Matt's b-day Dec. 6.

Thursday Night

Matt has been going up and down on his oxygen all day. When I left he was at 2.5 liters. Not great. The good news is that he was able to nurse since he would not take a bottle, cup or straw. That isn't easy on me. Philip is spending the night tonight and will see if Matt gets hungry enough to take a bottle from his Dad. If Matt doesn't take the bottle I'll be sleeping up at the hospital also. Matt is only on one IV med which is melrone. Melrone helps the heart pump stronger and then helps it relax. Matt is on .5 and he will be weened off of it hopefully tomorrow morning. Currently, if things keep progressing well, we will be home early next week.

Thursday afternoon

Talk about grumpy. Matt is not happy. They have pulled all three chest tubes and his breathing tube. He slept after all of that for an hour. The poor guy started not to breath enough breathes (around 8 per minute) so they took him off the fentynal and lowered the parsadex. Matt is now breathing better but not comfortable and not sleeping. He just lays there and moans. I tried holding him earlier in the day but he just got anxious. I held him again around 3:45 pm. At first he cried and wiggled but after settling down he went to sleep. I couldn't move a muscle without waking him up so that only lasted half an hour. I feel bad. Matt looks at me and seems to say 'get me out of here'. I, of course, just rub his forehead and tell him that I love him and tomorrow will be better.

Day 2 post op

Matt is about to have his breathing tube taken out this morning along with some chest tubes! He is trying to roll onto his sides and kick his covers off. The nurses are trying to get him comfortable on his back. Matt is getting his head rubbed to relax him. For you nurses: pulse 125, blood pressure 108/75, cvp 12, resp 21, O2 in the low 90s.

Day1 Post op

Well it is Wed. morning but it still hasn't been 24 hours since Matt has come out of surgery. He looks great and is doing fantastic. A lot of swelling has decreased. He is off the epi and Nipri for all you nurses and his vents down to 30%. The re-profusion to is lungs that we were all worried about hasn't seemed to happen. His x-rays look unbelievable! Matt is a bit squirmy and they are trying not to give him a paralyzing drug, but they had to give a little. So today is more weening off the vent (breathing machine) and trying to keep him still. Good luck to those nurse and doctors. Matt is a difficult one to keep still. Thanks for all of your responses and prayers. H

Numbers

Pulse 144, Blood pressure 120/73, Cvp 14, rep 26, O2 99, He is getting platelets, cell saver, and a few others. peep 5, o2 50%. Overall, he looks large, white and puffy. He is peeing well, but they expect him to retain more fluid with his re-profusion in his lungs.

Matt is out!

268 minutes on by-pass. That is about 4 1/2 hours. Dr. K did a new re-focalization of Matt's pulmonary arteries. He said that was one of the most extensive surgeries that he has preformed. He basically slit the pulmonary arteries length wise, as far as he could, and put a patch to make those vessels larger. The patch will enable the pulmonary arteries to still expand on their own, unlike stents. Matt has collaterals, as well as the pulmonary arteries, going to the lungs. Those collaterals were also split and patched. A new pulmonary valve was put in. The valve is a aortic valve that is 15mm. Philip and I are relieved and will be able to see Matt in 30 minutes. Dr. K said that he expects that Matt will have some re-profusion (new, higher amounts blood) into his lungs that will make recovery a bit longer. All in all the surgery went smoothly.

Almost Done?

The surgeon, Dr. Kouretas, thinks Matt might be done. They have done an echo cardiogram and have measured the pressure in Matt's right ventricle. The pressure has went from 75% to 50%. It is good that the pressure has gone down, but under 30% is ideal. The surgeon is now going to try to close Matt up. They are worried about bleeding. I was told by Bonnie, that if Dr. Kouretas isn't out in an hour to talk to us, that it is due to bleeding. During the next few days, the nurses and doctors will try to pull more fluid off of Matt and hopefully that will bring his pressures down further.

No end in sight

Bonnie, the cardiac surgical nurse practitioner, said that Matt is having the pulmonary valve worked on now. She said that Matt is going to have some bleeding issues due to the scar tissue. Like the title said their 'is no end in sight'.

The work is just starting

Matt went on the by pass machine about 12:15. The surgeon is replacing the pulmonary valve and then will work on the pulmonary arteries. If the pressures still remain too high, he will need to put a hole in the patch between the right and left ventricles. This means that they'll need to stop Matt's heart. So start praying...

It will be a long day

Matt went in at 8am as planned. 10:15 the nurse came out and told us that the lines had just been placed. 11:15 the doctors are still working their way through the scar tissue. The surgery should last most of the day. Philip and I didn't sleep last night.

Are you sure?

Surgery is now Tuesday for Matt. I feel exhausted. The girls are still going to California tomorrow. I will miss them so much. With RSV season just starting it is probably best to go to Cali. If the girls stayed here we would have to keep them quarantined. That wouldn't be fun for any on us. The doctors can't give the senergine shot to Matt that would keep him from getting RSV until after the surgery.

A new twist

Yes, the drama continues! Dr. Kouretas called this morning, letting me know that their are no available beds in the ICU for Matt. Soooo surgery Monday???

Praying to the wrong God

Kim called at 3:30am this morning to let me know that she be more then willing to make the trip this morning to San Diego but.....she has been bowing down to the toilet god every 20 min. I am not going to ask her what God she has been praying too. I think we have all been in that situation. Kids go out Wed. morning instead. Hopefully, with Kim. If not Kim then Philip will go.

Surgery on November 21

This is crazy! I was called at 10:45am by our surgeon, Dr. Kouretas. The crazy doc. wanted to re-do the pulmonary valve tomorrow. He went over the stent results this morning with Dr. Day and that was both their opinions. I told him to call Philip. The short end of the story is Matt needed to go in to surgery by Monday of next week at the very latest. The surgery is on Wed. for 2 reasons;
First: Philip and I didn't want Lillian to miss too much school (they are flying to San Diego tomorrow morning at 6am to stay with Nana and Papa)
Second: The thought of Matt going back into open heart surgery literally makes Philip and I sick. Better to get the surgery over with, then think about it for a week. Anyone who knows us, knows that we are both high strung people. As is, I don't think either of us will sleep for the next two nights.
A great BIG kiss for my sister Kim, who is flying with the girls.

Back to the hospital

Matt's cardio. cath. appointment turned out to be a long day. Matt was not supposed to eat after midnight the night before and only clear liquids till 9:30am. His appt. was at 12:30pm, check in at 11:00am, but it was delayed till 2pm. Poor Matt was so hungry. He got out around 4:30pm and stayed in recovery till 8pm.
The cath. showed that Matt's right atrium has pressures that are too high. A third surgery will be shortly after Thanksgiving. Dr. Kouretas, the surgeon, told me when Matt checked out of the hospital that he didn't think he could do anything more for Matt. The stent doctors are concerned about ballooning the pulmonary arteries so soon after surgery. The PAs were patched in a certain area during the last surgery. Dr. Day said that surgery would be best and soon before the scare tissue forms and makes the procedure more difficult. Another 'hash out' over who will be doing the procedure (surgery with a patch or cath lab/ surgery with stents) is supposed to take place on Wed. Let's see if everyone shows up this time. If everyone shows up and if they can come to a consensus, I should know by 9am Wed.
Meanwhile, Philip and I are concerned about the doctors inability to agree on a plan of action. Philip wants to take Matt's records to Stanford for another opinion. Those who know about when we did this last time (when Matt was born), know that we bruised a few doctors' egos here at Children's.
So tell me what you all think. Should we basically tick off the doctors here by sending Matt's records to Stanford? Keep in mind that the chance that another doctor will take Matt's case is not likely. No doctor wants a bad situation, or death on his record. OR should we see what the doctors here have to say first and if it all makes sense?
Oh yeah, we are all better and over the flu. Philip and I just suffer from fried nerves.

Busy, busy

I received a call last night from Matt's cardiologist, Dr. Day. Dr. Day wants to do a heart cath this Friday. That's right, tomorrow. They are going in to measure the heart's right atrium pressures. If the pressures are in a safe area then he will come home that night. If the pressures are to high, the doctors will keep Matt in the hospital. I don't quite understand why he would be kept in the hospital, but I'm sure we will find out if he stays. The doctors want to eventualy balloon Matt's pulmonary arteries. The PAs are just to fresh out of surgery to do it right now.
Meanwhile, Matt is over the flu and so is Marissa. Lillian and I have the flu now. I am taking it easy. Lillian is watching re-runs of Hannah Montana. Nana is leaving tomorrow night. I am praying that we are all better by tomorrow.

Matt caught the girls stomach bug. I have been covered in throw-up more times then I would like to count. Matt is feeling better today and has kept down saltines and apple juice. He slept well through the night, not waking up till 7am. At times, I would wake up during the night and hope that he was doing OK. I didn't check because Matt is such a light sleeper. If I opened the door to his room he would wake up.
Nana would like to leave soon to get back to her routine in San Diego. I told her she can't go for a few days.
Life is a difficult adjustment for everyone. The girls and Matt are needy and I am still sleep deprived. The girls climbed into bed with me last night and were squirming around all night. Philip went to the girls room and slept.

Home

Is their a better thought then home when you have been in the hospital? Matt is home. He hasn't caught up on much sleep. He took an almost two hour nap. Nana said he kept waking up and looking around and then he would fall back asleep, happy that he was still at home.

Day 12 post op

MATT IS COMING HOME TODAY!!! HE HAS HIS O2 DOWN TO HALF A LITER. Poor Matt has not slept all night. I think he could feel that something was going on and didn't want to miss a thing. Got to go!

Day 11 Post op

Matt is happy! He spends every moment in the wagon. Lets face it, nothing bad can happen in a wagon. I talked to Dr. Kouretas and his lung flow is un-even. His left lung is doing 30% and his right is doing 70%. So the week of Thanksgiving, the doctors want to put in a stent into the left artery. But the good news...his will probably been coming home tomorrow!!! As long as his chest ex-ray is looking clear. So happy day!
Lillian has her Primary Program at church today so Kim will be sitting with Matt. The nurses said that she doesn't have to come. They adore him.

Day 10 Post op

Matt is doing excellent. His O2 is down to 1 liter and his sats are in the high 90s. We still haven't been told when we'll be able to bring Matt home and if he'll come home on oxygen.
Meanwhile, Marissa is running a fever and throwing-up. Lillian says she doesn't feel well but has no temp. I was up till 3am this morning cleaning it up and doing laundry. Thank goodness Nana is here to watch the girls so I could sleep in. I would say "can anything else be put on our plate", but I know all to well that life could be worse. Thanks for your prayers and calls. H

Day 9 Post op

Matt was finally moved out of the ICU today into the surgical unit. He had a great night sleep and was ready to play. We went for a wagon ride and he smiled and waved to people like he was on a float in a parade. We then went to the Forever Young playroom and he had a great time. He loved watching the other kids and playing with the little people house and with some cars. After an hour or so he was tired. We went back to his room and he fell asleep in the wagon. The nurse said it was OK to leave him in the wagon! The surgical unit is great. They have room service. That's right, anytime between 7am and 7:30pm the hospital will bring your child just about anything they want to eat. Matt is eating chicken nuggets, strawberry yogurt, french fries and loving it! Matt's iv lines are out and he is hooked up too 2 litters of O2, a sat monitor and EKG wires. The docs still want to do a heart cath in a week. I am hoping that they let us come home soon. We can come back for the heart cath! Plus, I have a sat monitor and O2 at home.

Day 8 Post op

Matt had another difficult day yesterday. His heart rate is high due to his left lung collapsing Monday. He has been coughing alot trying to clear the secretions and being suctioned regularly. This morning he is doing alot better. He used to sound very wet when he coughed. Today he sounds like he has Asama (dry cough).
Yesterday, Matt had a ct scan of his lungs and pulmonary arteries. Dr. Day saw the ct and said that his pulmonary arteries are still really small (maybe 3mm). Dr. Kouretas will not review the scan until today. Yesterday, Dr. Kouretas did the first artificial heart transplant here at the hospital and was a little pre-occupied to review the results. It is a little frustrating that Matt's arteries are still so small, but we will wait for Dr. Kouretas opinion. After all, Dr. Kouretas saw the pulmonary arteries in surgery.
The plan for today is be patient. For those who do know us, that does not come easily. Matt was weened off the high flow O2 early this morning and is currently on 2 liters O2 with a regular nasal canal. He is not on any iv feeds. He is eating crackers, nursing and taking a bottle. For the most part, Matt is happy. When he gets uncomfortable they give him adivan and loratab.
His stats are as follows: heart rate mid 140s, resting in the 130s, blood pressure 104/73, O2 in the mid 90s and resp 35.
I'll try to post pics of Matt later today. He looks fantastic with color back in his little body!

Day 6 Post op

Matt had a high flow nasal canal put on last night at about 10:30. He slept well through the night. This morning, after his adivan, his was talking to the tv for about an hour and playing with his feet. The doctors are still concerned about possible narrowing of his pulmonary arteries. They are thinking about doing a ct scan later today. This is a set back. Hopefully, he will be home next week. Numbers are has follows: high flow 4 liters 35%, heart rate 140s-150s. Matt is on iv feeds. We will try breast feeding again later today.

Day 5 post op

Matt has had a trying night and the today hasn't been much better. Matt through-up 7 times through the night old blood and breast milk. His stomach is easily irritated so he is getting feed via iv.
During today he had two x-rays, an echo, and a ultrasound done. All to see how his lungs an heart are functioning. He doesn't want to be touch, moved, etc. Currently, he has adivan for his anxiety, when needed, morphine for pain, lasix and aldacton to take the water off. Matt has gone off all of his heavy iv medications. He will hopefully go to med-surg floor tomorrow pending that his chest x-rays look clearer in the morning.
His heart rate is higher then I'd like...176. That is the highest it has been all day. His blood pressure is 109/78, O2 93 on 1 litter of O2, and resp 23. He has an art line in his wrist, a main iv in his neck an one in his foot. He pulled off his nasal canal this afternoon and smiled at his nurse. This was the first smile since his surgery. It was so cute that we let him keep it off for a while and just had the mask near him for blow-by.
Right now he is watching the Disney channel....loves his Hannah Montana.

Day 4 afternoon

Matt is still doing great. He has not taken his any food orally. Matt does have an NG tube and his feedings are 30ml /hour. The doctors are trying to ween him off the NO, but are having a difficult time. Matt got down to .1 NO and the doctors took it off completely and then had to turn it back on at 1.1. The NO is their to help the pulmonary hypertension. Matt's blood flow from his heart to his lungs has undergone a huge change. His pulmonary arteries and heart need to adjust to the new flow. The numbers are: 2 litters O2, 1 litter of NO, pulse 108, Blood pressure 106/80, O2 98, resp 22. He is on .8 dexmedetomidine, .5 milrinone and off and on nitroprusside for his blood pressure. Matt has a line going in his neck, one hand and one foot. The line in his neck will be taken out when he goes off the dex., mil., and nitro (cross your finger for tomorrow).

Day 4 Post op

Matt is doing so well. The doctors took out the 3rd chest tube. He is now chest tube free! He will be taking his feeds oral now and we are excited to see Matt looking like his cute self. The girls came up this morning with me and loved seeing Matt.
On a different note. Those who know my girls know that they can be self sufficient. Last night I was going to switch the washing over from the washer to dryer. When I opened the dryer it was full of liquid tide HE detergent and some clothes. Lillian has confessed to trying to help me with the laundry. My mom and I cleaned the dryer out and I think it will still work. It was sweet of Lillian to try to help with the laundry and I think I will be teaching her the correct way in the near future.

Day 3 Post op afternoon

Matt just had his breathing tube taken out. He is doing excellent. If you compare day 2 and day 3 pictures you can see that his coloring is better and his face is thinner. It may not be too optimistic to say that he could be home this same time next week!!! Yea!!! For you numbers people; the cvp line has been removed. Heart rate 113, Blood pressure 94/67, O2 92 , resp 26. He is on 2 litters of O2 thru a nasal canal with 3.1 NO. Still a little wet on the right lung but the doctors think with a day or two with Lasix he should be good.

Day 3 Post-op

Matt had 2 of his 3 chest tubes taken out this morning. It is a great start to the day and means that Matt is doing really well. The doctors are weening him off the vent and No. They are going to re-evaluate him at 2pm this afternoon to see if they will be able to take out the breathing tube. Philip and I still think it is too soon but I guess time will tell. His chest x-ray got worst on the right lung. The lung is still pretty wet so the chest tube around that area is still in. More later. H

Day 2 Post-op

Matt is doing well today. His chest x-ray shows that his lungs are clearing up. During surgery the lungs get traumatized and fill with blood. The clearer his x-ray the better. For you numbers people his info is: pulse 141, blood pressure 78/55, cvp 12, SpO2 94, resp 22. His O2 is at 33 , NO 14. His is currently on Fentanyl for pain, Versed for anxiety, Milrione to help his heart pump better. The doctors are also starting Matt on breast milk via a NG tube thru his nose. That is the yellow line going in his nose in the picture. The doctors in charge want to try and take the breathing tube out tomorrow. Philip and I are a little worried that the doctors are too aggressive. Matt failed ext abating in his previous surgery and it was quite traumatic to watch as a parent.
Matt is moving alot in bed. He rubs his eyes but does not open them. He gets agitated if you touch him or sometime when we talk to him. If he moves too much the doctors paralyze him so that he does not hurt himself.
The girls are mixed on how they are coping with this all. Marissa slept with me last night and cryed alot for her dad. Lillian has been exstremly needy. She slept with me too last night. Both girls made it almost impossible for me to sleep.
Philip is doing well. He is worn out. He stayed with Matt until 2am before going to sleep. I am tryingto talk him into spending tonight with the girls. Take them to dinner and put them to bed. More tomorrow. H

Almost Out

Dr. Kouretas just came out to let us know that Matt did well in surgery. They were able to accomplish the pulmonary valve, the vsd patch and a patch on the pulmonary artery. The doctor said we would be able to see Matt in 45 min., that Matt was pretty sick and that recovery time may be longer then expected. In other words, Matt was on the heart and lung machine a long time. The walls on the right side of his heart have thickened and the pressure of blood flowing thru that area is difficult to pump. Dr. Kouretas thinks that the walls will relax and the pressure should relieve itself in a week or so. If not, they will put a hole between the right and left side of his heart allowing some mixed blood (a heart murmur). Another surgery would be needed then. All in all Philip and I are hanging in there. The girls are doing great and I'll be seeing them tonight. Philip will stay at the hospital at night and I'll return in the morning to relieve him so he can goto work. Is that really a relief? Anyways, thanks for your letters, emails and comments letting us know that your praying for him. H

Coming thru

Matt has been taken off the heart and lung machine and his echo looks great. They are closing him up and pending any bleeding problems, should be out in 90 minutes or so. Yeh. It will be probably be 2-3 hours before we get to see him.

Trucking Along

Bonnie, our surgical nurse, has told us that they have completed the pulmonary artery patch and have closed the vsd. They are currently putting in the new heart valve and warming his body up so that he can come off the heart and lung machine.

It's just the beginning...

The operating nurse came out to talk to us. Matt has just went on the by-pass machine. The surgery looks like it will be a couple of hours longer then expected.

Today is Surgery

Matt woke up this morning at 4am. He and I watched the Disney channel until 5am when I had to get ready to leave for the hospital. Check in time was 6am. The surgery started at 7:30. The surgery should last 6 hours or so. The surgen will first put a patch on the pulmonary artery, then close the vsd and finally put in the valve between the heart and pulmonary artery. The pulmonary valve will hopfully last a couple of years and then have to be replaced.