Day 10

The doctors came by this morning and said they would give the chest tube 24 more hours for drainage to stay where it’s at or lessen. If it does they will take the tube and pacemaker out tomorrow. If all goes well tomorrow with the EKG, echo and chest x-ray… Gavin will be discharged to the hotel on Saturday. Then we wait a week at the hotel and return for an appointment. If all goes well, we could be heading home in a week and a half to two weeks! Woo hoo!!!

Gavin threw up a little bit this morning before breakfast. He threw up again this afternoon when we took him to the playroom. Gavin has not wanted much to eat today, so I am thinking it is the meds on a empty stomach that causes him to throw up. We are waiting to hear what the doctor thinks about it. He is less energetic today then he was yesterday... not wanting to get up and play or eat much. His potassium levels are going up so that is great news.

I will update again when I hear from the doctors this afternoon. Keep up the prayers, we are so ready to get discharged... even if it's only to the hotel. I hate hospitals!!!

Pictures from yesterday

Day 8

Faith here- sorry for the late update. Today I have been very busy with a more active two year old. Gavin did not vomit over night or today during the day. The drs are allowing him to have banana, rice, applesauce and toast. He had bites of each and kept it down all day. He still has a lot of drainage coming out of his tube and still no bowel movement. After blood work, they discovered Gavin's potassium levels are very low-which is not good for his heart at all-so they started him on a potassium drip. It wasn't any better tonight so they had to give him an oral boost. Guess what? He vomited it all up! They really don't think the vomiting will continue, its just the amount he had to have along with his other nightly oral meds. Adam said he is still a happy guy. He was in the best mood today, chatting it up with me. We took a ride in the wagon again and played in the playroom for about 10 minutes before he was ready to go back "nite nite". Today he looked down at his chest and said "Dr. Peter fix me, I fine." Totally made me cry. Please pray that we all stay well, there was a line out to the street from the ER tonight. Everyone was wearing masks. It is all over the news here about the swine flu. I am off to bed, will post more pictures tomorrow.

This is the sign going into the cafeteria...

So this is how we are doing breakfast and lunch. Dr. Peter was giving 16 hours from this afternoon to poop and get better (vomiting) or he was going to plan B. Gavin needs your prayers. Thank you for your encouragement. We will let you know how it plays out tomorrow! Mitzi

Monday 4/27 Update

Faith here- So yesterday was a bad day... I finally hit my breaking point and lost it. Let me fill you in on what happened. Gavin has a team of doctors, all different, with all different opinions and techniques for how they care for the patient. All day yesterday a new doctor would come in with their opinion. One would say "let's get him up and walking today"... another "let's keep him resting". "Give him fluids", "don't give him fluids", "give him zofran", "why is he on zofran?", "he needs a CT scan", "he doesn't need a CT"... I think you get the drift now.

Gavin ended up having a CT scan yesterday to r/o hydrocephalus. Gavin has a history of seizures and enlarged ventricles in the brain. Gavin slept ALL day yesterday and only woke up to vomit or cry with irritability. So basically they wanted to rule out the unknown. Praise God there is no hydrocephalus, just mild enlarged ventricles.

Dr. P said the main concerns now are for Gavin to have a bowel movement, to urinate on his own (they have plans to remove the catheter today), to get the chest tube to quit draining- he drained over 500 mls during the day shift yesterday, which is a lot. He has already put out a 100 this morning. They also want the vomiting to stop, for Gavin's blood pressure to come down and for Gavin to have more energy. They are starting him on a new blood pressure medicine today to see if that helps with the vomiting issue also. It's so important for Gavin to absorb his medicines, especially his seizure meds, we do not want him to have a seizure.

Once they allow Gavin to start eating he will be on a low fat diet. We met with a dietitian yesterday and she gave us all the rules. He will be on the diet for 6 more weeks after we come home. There was a lot to digest yesterday and I became very frustrated with Gavin's situation. I hate seeing him so miserable. I think we all got our hopes up with him doing so well the day after surgery and now that he is regressing it's a real bummer.

To add to the stress the hospital is on lock down now for who knows how long. There are four known cases of the swine flu here and they want to keep the patients healthy. They are swabbing the patients daily to check for more cases. I completely understand the reasoning but it's hard to not have the help and support of our family now. Adam is at the hotel sleeping and will come up here tonight to stay again. This shift seems to be working out the best because I get so nauseous (from the pregnancy) at night. So it's just me and Gavin (who is currently sound asleep- see the picture?) for the day.

Again, we are humbled by your prayers and support. Thanks for all of the cards, emails and gifts for Gavin.

Thank you for your prayers!!! Things are better. Dr. Peter came to the hospital and checked everything out. Gavin is resting and Adam is staying all night at the hospital again. We took Faith to eat and she is going to sleep now and go back early in the morning. We will give details tomorrow but it was a stressful day and we really needed the extra prayers!!! Faith and Adam thank you and love and appreciate you! Mitzi

Please pray

Faith and Adam could really use your prayers right now. Gavin has still been vomiting. I'm not going into a lot of detail because I don't want to get anything wrong but I do ask for your prayers for some answers and for peace for Faith and Adam. Faith is very upset right now and needs some peace. Mitzi

Sunday Morning Update

Faith here- Gavin is still having some vomiting today. The doctors were concerned that he was not absorbing his seizure medicine and got neurology involved to keep an eye on him. Gavin has slept most of the last two days. Specific prayers are for more bowel movements, vomiting to stop, and more energy! His chest tube is also still draining a lot of fluid. Dr. Peter reassures us that this is all a part of the process and Gavin will get better with time. Thanks for the continued support!

Correction

I am sorry...I made a mistake about the IV. They stopped the IV fluids for the day...Gavin still has the central line in. Thanks! Mitzi

Poop Parade

Faith and Adam told Gavin that if he went to the bathroom they would give him a ride in the wagon. Well, as you read earlier he went. Then he went again. You can ask Faith for the details! Gavin is still vomiting but the Dr.'s keep assuring her that he is doing well. They took the IV out today. Wendy (Dr. Peter's wife) came to the hospital again today and is a great source of support for Faith and Adam. Hopefully tomorrow Gavin will start holding down liquids. He already looks so much better tonight. I will try to give better updates tomorrow. It's been a really busy day !!!! Thank you for your support! Mitzi

Gavin finally had a little bowel movement. Praise God! But it was just a little one. Faith said he screamed like he was giving birth. I'm sure the poor guy was in a lot of pain. They took him off of the IV and are going to give him milk of magnesia. He's still vomiting and is very irritable. Hopefully he will have some more poop this afternoon! Thanks for all of your comments and prayers. Mitzi

A picture is worth a 1,000 words...

This picture pretty much sums up how Gavin feels this morning. Still no bowel movement. Last night Dr. Peter came back up to the hospital (he was not on call) and spent some time with Faith and Adam. He explained to them that he still feels that Gavin is doing well. The intestinal issues are not uncommon. Dr. Peter and his wife have given Faith their cell phone numbers and have told her to call them at any time. I feel sure that Dr. Peter will be back up here before the day is over. Gavin still has fluid draining and had dry heaves last night. They have given him something for nausea so we are hoping that will pass soon. Gavin is asking for milk, water or juice. He can't have anything to drink right now. Continue to pray for the obvious and also for family members here with Faith and Adam. Thank you for your support of this precious little guy! Mitzi

Thank You!

Gavin wants to give a big thanks to his daddy's boss MK (and family), and co-workers. He loves his new elephant, monkey, hippo and safari toys. Definitely brightened his day. Also, thank you to his heart buddy Daric for his new monkey with banana, spider man balloon, and coloring book. Look Aunt Patti, I am cuddling up to the Cars blanket you made me!


Thank you everyone... it means a lot that you care so much about our son!

Frogs jumping in the water

I just got back to the waiting room after being in Gavin's room for a while. The cardiologist on call for the weekend came in and seemed extremely nice and assured Faith that everything seemed "normal" for someone having MAJOR surgery 2 days ago. He still has not had a bowel movement. Since they have put the cath in he has had a lot of urine. His eyes were swollen earlier today and they already have gone down some. His fever is a little lower. They keep telling us that after he poops he will be a new guy. Kristen and Kate came in while I was in Gavin's room and asked him what he had been dreaming about. Gavin said "frogs jumping in water". He seems to dream about frogs a lot! Pray that he will get a good nights rest and that he will poop. I hope this is the last time that I have to blog about it. Thank you for your prayers and kind words. Faith and Adam feel extremely blessed and send their love to all of you! Mitzi

This was taken a few minutes ago

Also today

Gavin's room #318

Last night a volunteer who plays the harp for patients. He was actually very good!

Yesterday in the waiting room

Yesterday when Gavin went on his 2nd walk. If you look closely you might be able to make him out at the end of the hall

Another update

Faith just came to the waiting room and said that Gavin had thrown up again and it had blood in it. They have called Dr. Peter. He also has developed a fever. Still no bowel movement. The catheter relieved his bladder. Will update soon. Mitzi

Update

Gavin is in the process of having an xray to see what's going on with his intenstines. After that they will be putting a cath in. I will let you know what's going on as soon as I know. Mitzi

We need your prayers

Gavin is having some problems with his intestines. If he doesn't urinate within the next hour he will have to get a catheter. If he doesn't have a bowel movement within the next hour they will do an xray to rule out a blockage. He is really miserable right now. We believe in the power of prayer and know our prayer warriors are going to take care of this! Thank you!!!! Mitzi

Rough day...

Gavin is having a rough morning so far. He is in a lot of pain. The doctors are on top of it so we are feeling confident that this is just a little bump in the road. This picture is from this morning. Gavin really could use your prayers this morning!!! Thank you. Mitzi

Morning update-Prayers for poop

Gavin was moved to the intermediate floor last night. Adam stayed at the hospital and let Faith get a good nights sleep at the hotel. Joe is in the process of taking Faith to the hospital and bringing Adam back. The girls got here last night and Aunt Tara was soooo nice and sent homemade sugar cookies in the shape of a heart!!!! Thanks Aunt Tara!!!! We have been craving your delicious cookies. We (anyone other than Faith and Adam) are not allowed into the room before 8 am so we will be there right at 8. Kristen and Kate can't wait to see Gavin.

We need prayers for poop!!! Adam said that they were going to catheter Gavin if he had not urinated by 3 am. Thank goodness he did pee pee before then. But...Gavin needs to have a bowel movement. He has been vomiting too. They did a chest xray this mornin and he has a little fluid in his left lung. Please pray hard today that Gavin will get over this little bump. Emotions are up and down. Thank you for your prayers!!! Mitzi

Marathon Man

Gavin took a long nap after his walk. We all got to take turns watching him nap. Trenna and I were with him when he woke up and he drank a carton of milk and we read a book to him. His mommy and daddy came in and they got him up and he walked twice as far as he did earlier. Did you get that?!? HE WALKED THE FLOOR AGAIN! He was just moved to the intermediate floor. He still needs to poop! Your prayers are working so please keep them up!!! Thank you! Mitzi

Pictures from Gavin's walk

Afternoon update

There have not been a lot of changes today. They took Gavin's chest tube out. He needs to eat something and have an increase in his urine. He also needs to have a bowel movement. So...for all of you prayer warriors you know what you need to do! Adam just left to go take a nap at the hotel. He will be staying all night. Faith and Trenna are in Gavin's room. I plan on taking Trenna's place soon!!! Faith is excited because Kristen (Faith's sister) and Kate (my daughter) are flying in tonight. Gavin loves both of them and we have already been telling him that they will be here tomorrow. Adam and Faith can really use your prayers as well. I can tell that they are feeling the strain. Especially Faith since she is pregnant. She is being a good patient for all of us mothers and eating 3 meals and getting some rest too. For all of you at home we feel your presence and prayers. We know you would be here if you could. Thank you for y0ur support!

Just as I was getting ready to finish this blog Trenna came to the waiting room and told us to come look down the hall. Gavin WALKED to the end of the hallway to say hi!!! Can you believe that! Barely 24 hours after open heart surgery! We are praising God!! Thank you God!!! Mitzi


P.S. The nurses said that they have NEVER had a patient in PICU get up and walk while they were in there!!

Sponge Bath

Sweet feet

I finally got to see Gavin and Faith was feeding him popsicle from a cup. He really enjoyed that! He wanted a green popsicle but they only had orange. The nurse decided to give him a sponge bath...every guy's dream! But when she started it he got upset and tried to get to Faith. He started shaking (Faith said he does that when he's in pain) and reaching for her. She was able to comfort him and the nurse gave him some pain medication. They have taken some of his tubes out and he seems to be doing really well. Really well for having open heart surgery yesterday. Adam just came to the waiting room and said that Faith is holding him now. A big aawwww erupted from the croud! Keep him in your prayers. Lots of hurdles to cross. More to come later Mitzi

Eating popsicle

Helping the nurse make bubbles

Humbled

Faith here... what can I say? I am amazed by all of the outpouring of love and support we have received in the last few days. I am shocked every time I get on the blog to find a comment from a complete stranger. I definitely wanted to thank you all for your sweet, sweet comments. And to all of you out there who left comments about your own children that are going through this... know that they are in our prayers too. When things settle down I will try to get back to all of you and fill you in on how great Gavin is doing.

Dr. Peter made his rounds this morning. Gavin is still doing well. He did throw up this morning, but they are not to concerned. They really want Gavin to rest and he seems to get more agitated when we are in the room with him, especially me. He wants to be held and he really wants his water!!! He is finally asleep now and we are in the waiting room. Gavin is on three medications now and IV fluids. His catheter, arterial line, & access line were removed when I got here this morning. THIS IS HUGE!!! One of his chest drainage tubes is still draining quite a bit, but Dr. Peter said they would just keep an eye on it and Dr. Peter has "definitely seen worse". We expect to be in ICU for the next few days. We really appreciate your prayers and ask that you keep them coming!

Good Morning!

Good morning from California! Gavin had a great night. He was watching a movie this morning! He is down to 3 medications and has been drinking water and juice. He wants MORE juice or water but they are limiting it because they do not want him to retain fluids. That is one of the major concerns at this point, especially Gavin getting fluid in his lungs. The nurse is amazed at how well he is doing. She said that they were going to get him in a cardiac chair today. He will still be in PICU for a couple of more days. We are so relieved and thankful that he is doing so well. However, we know that there could still be bumps in the road. Please keep the prayers going because they are definitely working!! Thank you and I will keep everyone updated and put more pictures on here! Mitzi

God is good!

Gavin is doing extremely well! He is resting well. The care has been fantastic! Words cannot express the deep gratitude for all of your prayers and nice words. I will update as soon as I know something new. Here are a few more pictures from today. After Gavin's vent came out

The ventilator is out!!!!

The ventilator is out!!!! This is great! He asked for his mommy right away. He is asking for Faith to "hold me" and for his "bite you" (pacifier). He is still at the top of his class. It is unusual for patients to get the vent out this early. We are so excited!!! His pacemaker has been taken off and his heart rhythm is better. Adam just came in the waiting room to tell us that Dr. Peter came in the room and Adam said to Gavin "Dr. Peter is here". Gavin opened his eyes and said "hey". Dr. Peter was rubbing Gavin's head and Gavin opened his eyes again and said "Charlie bit me"!!! For those of you who know the story this is great! Dr. Peter asked Adam what he said and Adam had to fill him in. I will update new information as I receive it. I will also put more pictures up from the last 2 days. Please forgive the jumbled order. This blog thing is new to me. Love to all of you! Mitzi

He Looks SO Good!

I just got back from visiting Gavin and he looks so good! I've seen him after all of his surgeries and he looks better than he's ever looked! They had to hook up an external pacemaker to try to get the heartbeat regulated. One of the cardiologists came in while I was there and said that he was at the top of his class!! Just what we want to hear. Now, with that being said, he is still in critical condition and needs every one's prayers. Please keep them up! It is very touching to Faith and Adam and they are checking the comments on the blog every few hours. We are all feeling your prayers. Thank you!!! Mitzi

Gavin in the PICU

They are getting Gavin stabilized in the PICU. The grandparents just got back from seeing him. They had to put the "no no bands" on his arms because he was trying to move his arms. They don't want him to pull anything out. They are working on getting the ventilator off. Gavin has had an "extra" heartbeat and they are working on getting that stabilized. I will keep you updated as the evening progresses. Thank you once again for your prayers! Mitzi

This picture shows all of the equipment in Gavin's room.

He is in PICU and looks so pink!

Gavin is in PICU. Faith and Adam are back there right now. He looked so good! Very pink!! We only got a quick look at him as he went by. Dr. Peter came in the waiting room and told us that everything went well and he looked good. Dr. Peter is always cautious though. The next 24-48 hours are very critical. Please keep praying for Gavin. Also for Faith and Adam because they will be the only ones that will be allowed in the PICU after 8 pm. Unless we get them to change the rules...and I am working on that!!! I don't think they realize that we are special!! Here are the pictures of Gavin being wheeled to the PICU. Thank you for your prayers. We have felt them!!

He's Out of Surgery!!

We just got a call that he is off the bypass machine and Dr. Peter wanted the nurse to let us know that everything went perfectly and there were no complications! Praise God! He will be in his PICU room in about an hour. We will get to see them roll him by in about 45 minutes. We will get to go back to his room (2 at a time) after they get him settled in. They said that will take about an hour. Please continue to pray...especially the next 24 hours. It is a critical time. I will update after I see him. Mitzi

Pictures from the cafeteria before we found out Gavin was out of surgery.

Update 2

It is 10:10 here and we just got an update...he is on the heart bypass machine and is doing well. They are ready to proceed with the surgery. Keep the prayers going...they are working!

More pictures...
Getting sleepy...

Gavin right before surgery, one happy boy!

Update 1

Gavin is back in surgery. They have not started yet but are getting him ready. Anesthesia, ventilator, etc. We saw Dr. Peter in the cafeteria a few minutes ago. He looked good and said he was ready. We told him that we are praying for him. We got to see Gavin right before they took him back. They had given him some medication to relax him and he was VERY happy. It was a great way to go to surgery! We are in a waiting room by the intensive care unit. I will update as soon as we receive them. Pray Pray Pray!!!! Mitzi

I can't figure out how to insert words between the pictures but the first pic is at the hotel room this morning. 1 & 2. Gavin with his heart bear. 3. Faith, Adam and Gavin before we left hotel 4. Last night eating pizza!!