Thursday, September 30, 2010

Thursday, September 30, 2010

Today was another good day. When I got to the hospital this morning, Caleb's heart rate was 115. I had to ask the nurse if this was ok, this was the lowest I had ever seen it. They said that it was very good. We are moving closer to the "happy place".

We are still working on the night/day switch. I wake him up a few times a day to remind him he is not nocturnal. We hung out for quite a while and he was alert and not crabby.

They weaned his air from 4 liters to 3 liters. They were going to eliminate one dose of diuretic, but decided against it because no one likes to make more than one change to him a day.

We are tentatively planning on a heart catheterization on Monday. They are hoping that this can also serve as the heart catheterization he will require before his second surgery. Every hypoplastic baby needs a heart catheterization before the second surgery. Luckily, he had dinked around long enough that we are close enough to the next surgery to make it work. If everything looks good, that means one less major procedure. We will keep our fingers crossed.

Wednesday, September 29, 2010

Wednesday, September 29, 2010

Long and skinny with a chest full of scars

Today was a good day. Caleb's x-rays looked good this morning and everyone believes his intestines are fine. They will probably not x-ray them again unless something else shows up.

The nurse was going to give Caleb his bath this morning and asked if I wanted to help. Of course I was not going to pass up the opportunity to see my perfect little boy naked (you never really get to see the entire baby here, just pieces and parts) and do a regular mom job.

Before his bath, his NG tube was removed to give his nose a break. The tube was no longer needed because they didn't need to remove all the contents of his stomach. This was a good thing because the tape holding the tube on his face was irritating his skin. Tape irritation seems to be a common thing with Caleb.

I got to remove the leads on his chest and his oxygen saturation sensor, so when he had his bath, he only had his nasal cannula and the IV lines in his legs. After his bath, I got to hold a clean, fresh smelling little boy with only a few lines. It was absolutely wonderful!

After all the excitement of his bath, Caleb and I snuggled and he fell asleep. It seems that Caleb has his days and nights kind of mixed up. He is very fussy for the nurses at night, but is pretty calm (usually asleep) for me during the days. Today I made an effort to keep him awake so we can see if he is just spoiled by his mom or if something is wrong at night. This afternoon, he was awake, calm and alert for about two hours straight. We talked and hung out. Hopefully, we got him tired enough to sleep tonight, but not so tired that he had to work too hard. Like everything else with Caleb, sleeping and being awake is a balancing act.

Being in Moderate Care is an eye-opening experience. In the PCTU, nearly all of the kids had a heart defect where surgery was necessary, but would provide a decent quality of life after recovery. In Moderate Care, you see a lot of kids with serious defects that surgery cannot fix. I have met parents that had to decide if open heart surgery would improve the quality of life for a child that was not expected to live into her teens. We are in the fortunate position that if the surgeries go well, Caleb can live a good quality life. The obstacles that we are facing are much easier than what other people here are dealing with. While we still have a way to go, we are counting our blessings and very thankful for our wonderful family!

Tuesday, September 28, 2010

Tuesday, September 28, 2010

Sleeping Peacefully

Today, Caleb turned six weeks old. He spent nearly the whole day sleeping peacefully. He was much less fussy and crabby today. The nurses and nurse practioners think that he has probably been uncomfortable due to the intestinal issues.

Everyone seems to think that the intestinal problem was caught in time and no harm was done. That is great news. They think that perhaps his intestines were not getting adequate oxygen as a result of the large amount of blood going through the shunt.

There is not a lot of optimism for Caleb coming home before his second surgery. Right now, the plan is to rest and grow. He will stay on the high flow air, IV blood pressure medicine and maybe the IV diuretics. The nurse practioner thinks that with this support, we can keep him in his "happy place". In his "happy place", the high flow air forces some of the extra blood from his big shunt out of his lungs and makes it easier for him to breathe. When it is easier for him to breathe, his heart does not have to work so hard. When his body does not have to fight so hard just to breathe and pump his blood, the calories that he was previously using just to survive can now be used to grow.

Luckily, the TPN and lipids (the nutrition he is receiving until next week) are sufficient to allow growth. So although he is not on breast milk right now, he can hopefully start growing and we are not wasting this week waiting.

For now, Caleb and I (or Phil) hang out when he is awake. We talk, sing, read stories and watch Jeopardy. We are trying to give him the stimulation that he would have if he were a healthy baby. We are also trying to enjoy his baby time so we don't miss out. If we have to do this in Ann Arbor for a while longer, we will do it. Hopefully, in a couple of months, we have have a "healthy" baby at home, thriving with the love of his family and going cross-eyed from a brother and two sisters in his face all of the time. Thoughts of his first months will be a reminder of how lucky we are to have him!

Monday, September 27, 2010

Monday, September 27, 2010

Today was a bad day. There were no critical backslides, just a whole lot of medium backslides.

We called the hospital this morning and found out that Caleb had been crabby through the night, but there were no changes made. When I got to the hospital, I found out that his diuretics had to be switched back to IV. They were hoping that would solve some of the crabbiness and get the right amount of fluid away from his lungs.

Yesterday, they thought there might have been some blood in Caleb's diaper. This morning, they did an abdominal x-ray with his chest x-ray. His lungs looked better and there was no glaring problems with the abdominal x-ray.

I talked to the nurse practioner and after consultation with the cardiologists and surgeon, it was decided to do another heart catheterization to see if they can determine if the shunt really is too big. The doctors can determine the pressures leaving the heart, both out to the body and out to the lungs. This would give them much more information than we have now. While it is scary to intubate him again, at least we would hopefully get some answers.

I asked the nurse practioner why Caleb has not gained any weight. The reason is that they are pulling off as much fluid as he is consuming. If they let the fluid stay, it goes around his lungs and causes problems. Part of the reason for the heart catheterization is that for now, we are stuck. He has to grow to have the next surgery and get rid of the shunt. He can't grow because we think the shunt may be flooding his lungs with blood.

I changed a diaper this afternoon and it had more blood in it. To protect his bowels, they removed all of his feedings and switched him to the TPN. TPN is the nutrition that goes directly to his blood. They put in an NG tube to remove all of the contents of his stomach. By doing these things, his bowels are no longer required to digest anything. All blood going to his bowels can now be used to keep them healthy. They also put him on antibiotics in case they was any damage to the bowels that may cause infection. The pediatric surgery people will be keeping an eye on him to make sure there are no problems. As of right now, they think he will be off of regular feedings for a week to 10 days. When they resume his feedings, they will start very slow (3 mL per hour versus his previous 20 mL per hour) and monitor him to make sure there are no problems.

Because of the concern about his bowels, Caleb will probably not be able to have his heart catheterization until next week. So for now, we are just waiting things out. On the bright side, nothing that has happened has caused any damage to his body. These things are just taking time, but not hurting him. If we are going to be here until his next surgery, this week is just one part of our waiting game and is not extending our stay. There is also the chance that with the heart catheterization, we may be able to find out what the problem is. If we find something that can be fixed, it may allow us to get home before the second surgery. That is something that we are definitely hoping for!

Sunday, September 26, 2010

Sunday, September 26, 2010

Caleb had another chest x-ray this morning. His lungs were reinflated, but there is more fluid around them. Today, they kept him on the 4 liters of air and increased his diuretics to try to get rid of some of the additional fluid. His white blood cell count is fine, so it doesn't look like he is fighting anything.

He was fussy most of the day. His numbers were fine, but whenever he was awake, he was crabby and whiny. He was pleasant when he was asleep however!

Hopefully, this week, we can figure out why he is crabby and if there is anything we can do to get him to move forward!

Saturday, September 25, 2010

Saturday, September 25, 2010

Today, Phil and I got to go out to breakfast together in Ann Arbor and go sit with Caleb. My brother and sisters took the Big Three to the Susan G. Komen Race for the Cure this morning. We have participated in the walk for the past eleven years in honor of our mom who passed away ten years ago from breast cancer. The kids wanted to go to the walk and Phil and I got to spend some time together alone.

Caleb's chest x-ray looked worse today, so they put him back on high flow air at 4 liters. About ten minutes after we got to the hospital, Caleb threw up all over me. I am concerned that he might have the cold that everyone seems to have right now. He has a cough (the fact that he can cough is good though) and the stuff he threw up was mucus, not milk.

Even with the cloudiness in his lung, his oxygen saturation levels were very good. He slept most of the day and seemed to be quite comfortable with no more major spit up episodes.

They are going to do another chest x-ray tomorrow and see how that looks. They are continuing the thumping on his chest to keep his lungs as healthy as possible. They will draw blood again tomorrow and see if his white blood cells are increasing, signaling that his body is trying to fight off something. Hopefully, tomorrow morning, we will have a much better feel for what is going on.

The nurse practioner said that they will be checking in with the surgeon the beginning of the week to see if he has any idea of why we are unable to come off the air. It is quite strange. Caleb doesn't need any supplemental oxygen. Until now, he has only needed a marginal amount of air blowing up his nose to keep his lungs healthy. Half the time, the nasal cannula is not even in his nose, but blowing somewhere around his face. If he needed more support, it would make more sense. We have been joking that maybe it is a security thing and that next time they try to take him off, we should tape the nasal cannula to his cheek so he can still hear and feel it. At this point, I wouldn't be surprised if they try it!

As you may have guessed by the previous posts and the amount of time that I have been able to stay in Ann Arbor, we have gotten a ton of help from our family and friends. Phil and I are both blessed to come from great families with parents and siblings that have gone above and beyond to help us out. We have received help and encouragement from the wonderful people in our community. To all of our family and friends - we would like to let you know that there is no way we could have done this without you. You have no idea how important it is to us to be able to be with Caleb in Ann Arbor and with Ella, Sam and Maeve in Alto. THANK YOU!

Friday, September 24, 2010

Friday, September 24, 2010

... then we rest.

When I got to the hospital this morning, Caleb was back on the high flow air. He ended up going back on around 1:00 this morning. Each time, we have made it around 10 hours off all of the support before needing to go back on.

He was very fussy this morning. Even with his methadone and pain medicine, he was crabby and mad. I was able to get him settled back down and he fell asleep. I talked to the nurse practioner and she reassured me that we will try again tomorrow. She said that she feels like a broken record telling me that we will give him a day to rest and try again.

This afternoon, he took a good sound nap from 2:00 to 4:00. When he woke up, he was much more friendly and his numbers were much better. He settled down quickly when we made him mad.

Right now, we are beating on his chest every two hours or so. He will have another chest x-ray tomorrow morning and if things look good, we will give coming off the air a third try. Hopefully, it will work this time.

Yesterday, his umbilical stump finally fell off (only about three weeks late) and today, they removed the wires from his chest for the external pacemaker. Removing the pacemaker wires is a nice step, showing they are not real worried about dangerous heart rhythms. Other than being really scarred up, his chest looks almost normal now. Each day, we make at least a little progress!

Thursday, September 23, 2010

Thursday, September 23, 2010

... and one step back.

This morning when I got to the hospital, Caleb was back on the high flow air at 1 liter. This is the level we weaned off of yesterday. He started dropping around 1:00 am and they put him back on the flow at 2:00 am. I had called the hospital at 11:30 last night to check on him because I was worried that he might backslide. At least my lack of confidence was well-founded!

His chest x-ray looked fine this morning, his diuretics are still working well and his blood pressure is still fine. There was no heart or lung reason that they could pinpoint causing our problem. After a lengthy consultation between the nurse practioner and cardiologists, the nurse practioner recommended Caleb get a breathing treatment with steroids (basically the same treatment people with asthma have). He had two treatments and was taken off the high flow air again at 2:00 pm to see if things worked.

After his first treatment, his heart rate was down, his respiration rate was down and his oxygen saturation was up - all good things. The nurse practioner was excited, the treatments were making it easier for him to breathe. If this works, the problem may be in his throat or trachea due to the irritation from all of the intubations. When I left the hospital at 8:30, he was still looking great. The treatments will continue and we'll see how he is doing tomorrow morning. Walking into his hospital room each morning adds at least ten gray hairs to my head!

Today was another information gathering day for me. Questions just build up and then I need to spend some time with the nurse practioner to get my head on straight. Todays questions and answers are:

Question: Based on the information I am hearing, Caleb is not progressing as well as should be expected for a "normal" baby with this problem. Is this true?

Answer: Yes. The problems we are having getting him fine tuned and off high flow air are probably a result of his body not liking the size of the shunt. Caleb has Goldilocks Syndrome. The first shunt was too small, the second too big. His body is struggling to deal with it.

Question: How do we fix it?

Answer: Caleb will probably have the second surgery as soon as his body is strong enough to tolerate it well. It is anticipated that it will be when he is around three months old. Normally, the second surgery is performed between four and six months of age, when the baby grows out of the shunt. Caleb doesn't seem to deal with the shunt well at all, so it is not anticipated that he will grow into it. When the second surgery is performed, the blood from his superior vena cava (the vein carrying blood from the top part of his body) will be rerouted to go to his pulmonary artery, right to his lungs, bypassing the right side of his heart altogether. The shunt will be taken out of service at this point. This greatly reduces the load on his heart and provides a stable supply of blood to his lungs.

Question: What happens if we can't get off the high flow air?

Answer: We stay in the hospital until the next surgery.

Everyone here wants to get us home and they are working very hard to get it to work. The nurse practioner said that the babies do much better at home than in the hospital and they realize the strain that being in the hospital puts on the rest of the family. I was very glad to hear this is their thinking.

If Caleb does have to stay in the hospital, it is comforting to know that we are nearly halfway there now. As it is, we are only looking at probably six to eight weeks at home if they can do the surgery at three months of age. We will proceed one day at a time and deal with whatever comes our way!

Wednesday, September 22, 2010

Wednesday, September 22, 2010

No Respiratory Support!

Today, Caleb was breathing on his own for the first time in 34 days! As you may guess, today was another good day.

Caleb had a good night with no problems. This afternoon around 4:30 pm, he was taken off the high flow air. When I left the hospital around 7:00 pm, he was still doing great. He will have another chest x-ray and bloodwork tomorrow to see how his body is tolerating breathing all on his own. It was so nice not to have to fight with the nasal cannula (we spend half our time trying to get it in his nose) and the associated tubing. If he tolerates this well, we are passing a huge milestone!

This afternoon, I didn't think we were going to get anywhere near this point. Caleb's alarms were going off because his oxygen saturations were reading in the 50 to 65% range. He is supposed to be in the 70 to 80% range. I figured that we were back sliding again, like we usually do when we try to wean him off his respiratory support. Luckily, the wonderful nurse we had today was suspicious and changed the oxygen sensor. With the new sensor, he was right where he was supposed to be. I had gotten quite concerned - we have gone down this road at least at six other times, but this time, it was not due to Caleb. Needless to say, I was very excited about the sensor failure!

Because Caleb's kidneys are working better, they changed the formula they fortify the breastmilk with from the special stuff to regular Enfamil. They think that the phosphorous build up they were seeing previously should be taken care of now and regular formula will work. This change now should allow us to take the formula out of the picture when we begin working on feeding changes.

Most heart babies are on what is called a "complex feeding protocol". It is a standard of building them up to normal size and spaced feedings. The nutritionist said that the first step would be to put Caleb's feeding tube into his stomach instead of his small intestine and feed him with continuous feeding for 8 hours. The nurse practioner said that Caleb will be staying on continuous feeding for 24 hours or as we call it "Caleb's ultra complex feeding protocol". I think the nurse practioner has him figured out!

If things go well tonight, Caleb could move forward on the feeding changes and may be able to move out of Moderate Care as soon as tomorrow. The nurse practioner said that the feeding changes will take us through the weekend. If things go well, we can discuss the "d" and "h" words - discharge and home. We have now heard these words two days in a row. We MAY be nearing the end of our first hospital stay! Please pray for strong lungs and a cast-iron stomach!

Tuesday, September 21, 2010

Tuesday, September 21, 2010

Caleb is five weeks old today. I am glad we didn't know that we would be here for over five weeks when we started, because it would have overwhelmed us. When you take it day by day, it is definitely manageable. Time here is like taffy. It stretches and twists, snaps and pops. It seems like Caleb was born a long time ago, but it seems like we have only had a baby for a short time. The 23 days in the PCTU seem like forever ago and seem like they flew by. We have been in Moderate Care for nearly two weeks now, but when we were told we might be here for three weeks, it didn't seem possible.

Caleb had another good day. His last dose of diuretic was switched yesterday, but the effects didn't show up until today - hence my confusion yesterday. He seems to have tolerated it very well. His lungs were looking much better this morning. They reduced his air flow volume to 1 liter this morning and he seems to be doing fine. His blood pressure medication dose has been reduced and they seem to be happy with that. He is being slowly weaned off the methadone and is requiring very little pain medication. In the twelve hours I was at the hospital, he had one dose of regular Tylenol.

The nurse practioner is still very happy with his progress. Depending on how things go tonight, they might try to go to 0.5 liters on his air or go off completely. I am not sure if we go to low flow air at that point or if we are OFF. We will see.

Once we are set on the air, we will move to feeding changes. They are thinking we may start around Thursday if things go well. When we go to tweaking just feeding, Caleb may get moved out of Moderate Care.

The nurse practioner said that when we are to that point, we could do his discharge echocardiogram. I was excited to hear the "d" word. While we don't have an idea how long it will be - it sounds as if the next few days may be very exciting.

Monday, September 20, 2010

Monday, September 20, 2010

Caleb hanging out

Caleb without his gown

Normal baby clothes for the first time

Today was another good day. I put a normal sleeper on Caleb and finally took real baby pictures. He was well behaved!

Caleb is still on 2 liters of high flow regular air. They are going to keep that constant as we take the last diuretic dose to oral. I thought they were going to do that today, but it will be tomorrow.

Today, Caleb had a little more collapse in his left lung. I talked to the nurse practioner and she said that this is normal in babies post-surgery. They make adults cough and blow into the funny lung-exerciser things to avoid it. For babies, they beat on their chests with funky cups. Caleb gets "exercised" - or beaten - every two hours. He doesn't like it when they do the front of his chest and he seems to enjoy it when they do his back. The nurse listened to his lungs this afternoon and thinks that it is working.

The nurse practioner said that Caleb's kidneys are functioning much better and are nearing normal function. He is still losing electrolytes in his blood, but this is something that is expected and that can be fixed.

Caleb got blood again yesterday, but he was able to go 8 days between transfusions. That is his longest stretch yet. Between him getting stronger and fewer blood tests, he is keeping up much better.

The nurse practioner seemed to be very happy with the progress that Caleb is making. It sounds like we will be making some changes with his feedings next - after we wait out the last diuretic change and the lung issue. As every parent of a baby here says about ten times each day - "So far, so good".

Sunday, September 19, 2010

Sunday, September 19, 2010

Today Phil was on duty in Ann Arbor. Caleb had a good night and seems to be doing well with the changes that were made on Friday. Today, he was moved onto regular oxygen content air. Tomorrow, if things go well tonight, they will try switching his last diuretic dose over to oral. These two changes, if they stick, will be a major milestone.

Caleb was fussy most of the day today. Phil held him for quite a while and was able to comfort him a couple of times. It is hard to know if there is a problem brewing or if Caleb just had a fussy day. It is sometimes hard to remember that he is a baby and sometimes they are crabby!

Saturday, September 18, 2010

Saturday, September 18, 2010

I switched Mom hats today and came home last night to be on duty for the Big Three. Today was the Alto Harvest Festival and Ella, Sam and Maeve had several activities they were participating in and they needed their mom.

I called this morning to check on Caleb and the nurse said that he had a good night. They had to raise his oxygen saturation in the nasal cannula a couple of times, but were able to lower it back down. Because both of the changes yesterday could affect his oxygen saturation in his blood, that was not a big surprise.

Phil went to Ann Arbor this afternoon. He got to snuggle Caleb and put him to bed tonight. He talked to the nurse and Caleb was still on 2 liter high flow and they left his diuretics the same. It is funny, everyone at the hospital is almost apologetic when we leave Caleb the same for a day. Phil and I look at a day of rest as a day not going backward! We never count on a change actually sticking, so waiting a day is a step forward. Right now, Caleb is on three different diuretic medications and only one dose of the nine or so is IV now.

It is nice to get Phil's opinion of how Caleb is doing - it helps me evaluate what I am thinking about his progress. Phil noticed how much calmer he is and how much more steady he is. He said that he feels that Caleb is much more our baby now, not some little time bomb ticking in your lap. No matter how well the other parent explains how Caleb is doing, seeing him is the only way to really know how much he has progressed. Hopefully, we can both see his progress in the same zip code one of these days!

Friday, September 17, 2010

Today, Caleb is one month old!

Today was another good day. Caleb was being good enough to try two changes today. They changed his second dose of diuretic over to oral today. They also dropped his oxygen volume down to 2 liters. The nurse practioner said we were going to "push him a little" and see what happens. Caleb and I had a chat and I reminded him that he needs to tolerate changes or we will be in Ann Arbor even longer.

Caleb got his stitches for his chest closure removed today. His scar is healing nicely. He was mad when they were removing them, but he did not drop his oxygen levels. Later in the afternoon, I asked the nurse practioner if I was just looking for positive signs that weren't there or if it seems like he doesn't bottom out when he gets mad like he used to. She said that he does seem to be regulating himself better. I will consider that more good news!

This afternoon, when Caleb woke up from his nap and they took his afternoon vitals, he had a seriouse, full purple-faced, breath holding meltdown. As soon as the nurse was finished, I picked Caleb up and put him over my shoulder. He calmed right down. I nearly cried I was so happy. I can soothe him now and he knows that I am Mom. I'm pretty sure methadone is still better than Mom, but I can live with that for now!

Thursday, September 16, 2010

Thursday, September 16, 2010

Caleb in Bed

Caleb had a good night last night and a good day today. Today was a rest/settle out day and he did a good job. We rocked and snuggled for a good portion of the afternoon.

Today, I had a nice long talk with the nurse practioner. She spent about 45 minutes patiently answering all of my questions. Following are some of the high points.

Question: Why are Caleb's blood electrolytes always out of whack and why does he keep needing blood transfusions? Is there a problem with his blood?

Answer: His electrolytes are out of whack because of the diuretics. He is getting rid of more fluid than a normal baby would and the diuretics take some of the important substances out as well. He is needing transfusions because his body can't keep up with the amount of blood they are drawing to check his electrolytes. No problems that can't be fine tuned.

Question: Are his lungs and diaphragm functioning properly?

Answer: The diaphragm is functioning like they had hoped. The left side is staying down and the right side is moving properly. He has some fluid in his lungs, but not a level they are worried about.

Question: How is his heart functioning?

Answer: The left ventricle is squeezing properly. There are a few valves with small leaks, but nothing that is terribly worrisome. The shunt looks good.

Question: Where are we going now?

Answer: We are currently tweaking diuretics and blood pressure medications. His heart works better when his body is "dry". His kidneys like his body "wet" so they hold onto fluid. We have to find the balance where his kidneys and heart are both happy. We also have to find the proper dosage for switching his diuretics from IV to oral. Oral medications are absorbed by the body less effectively, so we are switching one dose to oral and waiting a day or two to see the effects. We are making only very small changes to his respiratory support and no changes to his feeding so we can better identify the effects of changing the diuretics and heart medications.

The nurse practioner was very open and honest with me. She said that because Caleb likes to make a bid deal out of small changes, we are moving cautiously ahead. She said that he may make up his mind that he wants to go home when his diuretics are balanced and shoot forward or he may get out of balance and send us back to the PCTU. I have seen more than one baby come back to the PCTU, so I knew that was a possibility. The shooting forward part was kind of surprising to me and a delightful possibility. I am certainly not counting on it, but knowing it is a possibility made me feel great.

Because all of our progress is in Caleb's court, no one has any idea how long it will take. I hope he does not think that he will be able to single-handedly control the actions of our entire family forever.

Wednesday, September 15, 2010

Wednesday, September 15, 2010

Caleb had a rough early morning. He was very agitated and could not be calmed. The nurse tried his pain medication and that had no effect. They tried rocking him and snuggling him and that did not work. They gave him a dose of morphine and he settled down. He ended up sleeping peacefully from 7 am to 11 am. They are wondering if he is having some withdrawl from his morphine/methadone so they are going to work on weaning him more slowly. It made me feel really good that they tried rocking and snuggling!

I held Caleb from when he woke up to when I had to leave the hospital. I came home this afternoon to help Phil out. He has been really busy this week, so I came home for the afternoon and will head back to Ann Arbor tomorrow morning.

Caleb was having trouble keeping the nasal cannula where it belonged again, so when they weaned from 4 liters to 3 liters this morning, he didn't change a bit. It does make it easier to wean when you don't use your support properly.

The Nurse Practioner called me this afternoon to give me an update on Caleb before she left the hospital. Caleb had another SVT episode (where his heart rate goes very high) this afternoon, but he got himself out of it without any assistance. Hopefully, he is content with just one episode.

They are going to put Caleb on another medication to help his heart pump more effectively with each contraction. They said that this is pretty common for single ventricle patients.

I spoke with the Pediatric Cardiologist today and he said that Caleb is a "difficult case". I am still working on figuring out the exact issues and what will and won't affect his future health. I think I need to sit down with the cardiologist or nurse practioner and make sure I understand. We still have not had any real discussions of time until we go home or time until the second surgery. For now, we will take it one day at a time!

Tuesday, September 14, 2010

Tuesday, September 14, 2010

Today, Caleb got his PICC line. A PICC line is a peripherally inserted central catheter. Basically, it is a line that runs under his skin in his leg for about 1.5 inches, enters the large vein in his leg and goes almost to his heart. When they came to get me to sign the consent form, they went over all of the possible risks - the worst of course is death. They do approximately 750 of these each year, with very few problems. When they did his two open heart surgeries, we never went over any of the risks. The most life threatening surgery consent was no big deal and the routine procedure required ten minutes of discussion. I thought the irony was great!

The PICC line insertion went well. Caleb did not require intubation and had no weird heart issues. They gave him the normal sedation, and he was still agitated. They then gave him something they described "like PCP". That seemed to work and Caleb was basically stoned the rest of the afternoon. He slept until 5:00 pm, but he was very calm and comfortable!

They are making small changes to move Caleb to an oral diuretic. One more step toward home medication. Woo hoo! There were no other major changes today because they wanted him to settle in from his PICC line insertion.

I had a nice chat with the Nurse Practioner. When she saw me in the hallway, she grabbed my arm and said "He looks great today!" She is very animated, caring and takes all the time you need to answer questions. I asked if she thought Caleb was progressing well enough that he will survive to go home. She said that she was pretty sure of it now. You never know for sure around here. They deal with so many really sick kids that not many other hospitals would touch.

I had been wondering how sick he really was after his first surgery. As I had expected, she said they were very worried during the first 48 hours and it was a big risk putting him on bypass again for the second surgery. The stuff we are dealing with now is nothing compared to what Caleb has already fought through.

I also asked her at what point the major mortality is involved in the series of surgeries. She said that if you can make it through the first surgery and the first winter, you have cleared the major hurdle. The second and third surgeries are easier on the babies and they are much stronger.

Now the tricky part is finding the right balance of protecting Caleb from colds and flu and keeping a "normal" family life. The Nurse Practioner said that we would need to wash hands obsessively, but that we still had to live life with three siblings in school. She said to "use your heads and realize that the rest is in God's hands". You can see why a person could get very comfortable with the medical care and advice you get here!

Today, Caleb is four weeks old. We have been here long enough that I had to trim his fingernails. Hopefully, he won't need his first haircut before we leave!

Monday, September 13, 2010

Monday, September 13, 2010

I was glad to get back to Caleb this morning. Yesterday was the first day I had not been with him in ten months. I really missed him!

Caleb is doing well today. They are working on tweaking his Captopril (the medicine that helps to reduce his blood pressure) and his diuretics right now. His oxygen saturation levels in his blood are good today and he seems to be quite comfortable. They might look at reducing his oxygen flow level tomorrow. His is now on room air at a flow rate of 4. He will be getting his PICC line on Wednesday now. The Catheterization Lab was busy today and the Nurse Practioner did not want him to have to go without food for very long waiting for an opening. They want him to get as much nutrition as possible to gain strength.

The Nurse Practioner seems worried that we are going to get impatient with the small amounts of progress that we are going to see now. Tweaking and fine tuning will probably be very tedious, but if we make progress over the course of the week, we will take it!

As you may guess, the updates are probably going to be short and boring for the next couple of weeks. They might deal with more common baby stuff. Today, I got to hold him after his bath. The nurse had taken his leads off to clean his chest, so all he had was the oxygen and the NG tube. I held him while I was standing up and it felt so normal. He settles down alot of the time when Phil and I hold him. I try to lay him down when he is getting sleepy so he is not totally spoiled when we get him home. However, I am absolutely willing to risk spoiled at this point!

Sunday, September 12, 2010

Sunday, September 12, 2010

Today was Caleb's day of rest. No major changes were made in medication or ventilation. He hung out and was held by his Dad for a good portion of the day.

Phil talked to the Nurse Practioner today. He found out that they were actually quite worried about Caleb yesterday afternoon. He was really struggling to breathe and it wasn't until last evening that he began to improve. The NP called back later in the night to check on him because when she left his situation "gave her an upset stomach". Whether it was the pain medication or not, we are glad that he evened out!

Tomorrow, Caleb is going to get a new line for access, a PICC line. It will require another trip to the Catheterization Lab, but they told us it shouldn't be too difficult to get in. This line is better for longer term and is much less likely to cause an infection in his blood.

The next step is to get the proper amount of blood and blood pressure in Caleb's lungs. Right now, they think that his shunt may be too large and it is getting too much blood to his lungs. They can control it with his medication. The problem is that getting everything tweaked takes time. The blood pressure, oxygen saturation, feeding protocol, heartrate and respiration rate all need to be balanced and in the proper range to keep his heart and lungs healthy enough for everything to work, both now and in the future. The NP told Phil not to be surprised if we spent as much time in Moderate Care as we did in the PCTU.

Of course we weren't excited about the possibility of three more weeks in the hospital, but we can deal with the situation. We want to bring Caleb home as healthy as possible and give him the best possible chance of being a healthy kid. While our family is not able to be in the same place, we are able to split up and keep the other kids in a normal school routine and we are able to do most of what we would be doing with Caleb if he was home. We get to change some diapers, hold him, talk and sing to him - do most of the normal baby stuff. We are not missing out on his baby time, we are just doing it in Ann Arbor.

Saturday, September 11, 2010

Saturday, September 11, 2010

Ella, Sam and Maeve got to hold Caleb for the first time today. There is a wonderful family program at U of M to support not only patients, but siblings and parents. Each of the kids got to make a picture button of Caleb to show off their baby brother.

Today was a "step back" day. When we got to the hospital this morning, we found out that they had to put Caleb back on high flow oxygen. His left lung was "hazy" looking and had some collapse. He doesn't need a high oxygen concentration, but the higher volume helps to keep his lung inflated. The thinking is that as he gets stronger, he can take deeper and stronger breaths to keep the lung inflated.

Caleb threw up a few times, but nothing terrible. Maeve disagrees as she is officially the first family member he threw up on. I assured her that she won't be the last.

I brought the kids home tonight. When given the chance to stay in Ann Arbor or come home and have a normal Sunday (Church, lunch at Dougherty's, supper at Wieland's), they chose normal. The worst part was that they assumed Dad would be here too and were very disappointed when they found out he was staying with Caleb. This has been hard on them, but they are being very strong.

When Phil got back to the hospital, Caleb had slipped further. They had to increase his oxygen to keep him at acceptable levels. Phil noticed that Caleb looked like he was in pain, so he asked the nurse about his medication. Caleb had not had pain medication in 17 hours. He is not on a schedule, he is given medicine when pain is noticed. We had left the hospital this afternoon to hang out with the kids and the nurse had not noticed his pain. Phil talked to the nurse and the nurse practioner. If he was in alot of pain from his surgery last Friday (something everyone thinks is very likely), it would be hard to take deep breaths. After his medication, his blood pressure, heart rate and breathing rate decreased. With this, his oxygen levels increased some. We don't know for sure if it was pain that caused the evening backslide, but it makes sense. Now that we know what to look for and have talked to the nurse and nurse practioner, hopefully, we can better control his pain and do what we can to keep him moving forward.

Although today we had a couple of steps back, Caleb is still moving forward overall. He is definitely getting stronger each day!

Friday, September 10, 2010

Friday, September 10, 2010

Today I got to learn more about Moderate Care. Here, the Nurse Practioners run the show. There are Pediatric Cardiologists around, but if the heart is working ok, you don't see them. I had seen the Nurse Practioners in the PCTU, but they just listened and typed on laptops during rounds. It is nice to know that they know all of Caleb's history, not just what he is doing right now.

From now on, the plan is to get the diuretics and oxygen to an acceptable level, work on feeding and get everything else to stay the same. In the PCTU, you are constantly trying to change things. In Moderate Care and on the floor, you are trying to get things to stay the same.

Caleb needed more blood today. The Nurse Practioner (NP) said that it may be because they are always drawing blood from him. The last time he had blood was on Sunday, so at least we are getting further and further between infusions. If you give blood, please pat yourself on the back. You are helping little babies get better! Caleb still needs a newborn blood screen to determine if he has any of the disorders that can be found in this screen (metabolic disorders, etc). His first screen was taken before his first surgery, but somehow it got mislabeled. He has to wait for seven days after a blood transfusion so they are actually checking his blood, not someone else's and he has never gone that long. Maybe this time.

The NP warned me that after the PCTU, progress seems slow because the goal is now steady, not changing. We measure progress over days, not day to day. They do seem happy with his progress, but she is aware of the "Caleb Factor" and has taken that into account.

He is throwing up some of his breastmilk, but they think that it is because of the large amount of change yesterday. He was doing much better today, but still not 100%. They think he just needs some time to settle. Right now, he gets 40 mL of fortified breast milk, every two hours, over a one hour period through his NG tube. Basically, it is eat for an hour, off for an hour. His final goal is 65 mL every three hours, preferably over a shorter period. If he still needs an hour, we will have to take a pump home.

He is still not weaned off the oxygen. He is at 1/8 of a liter. They think that he probably doesn't need the oxygen as much as he needs the pressure to keep his lungs inflated. Hopefully, he just needs time to get stronger and take deeper breaths. He is close, just not quite there.

I asked the NP about the big picture and whether we are looking at one week or six weeks to go home. She is thinking a couple of weeks. Hopefully, she considered Caleb's aversion to change. We can deal with a couple of weeks. Maybe he will surprise us in a good way!

Thursday, September 9, 2010

Thursday, September 9, 2010

Moving Day - 800 pounds of bed and materials for a baby weighing less than 8 pounds

Today Caleb was moved out of the PCTU and into a Moderate Care room! This is a big step, he has moved out of intensive care after 23 days. Now, I am starting to learn what to do when he comes home. Today, I learned how to measure, place and use an NG tube (the tube through his nose to his stomach for food and medication). I haven't inserted the tube yet, but that is coming.

They are still working on weaning him off oxygen altogether, but he is on a very low flow right now and his oxygen saturation levels are still great. They have reduced his diuretics and pain medications.

Now that he has his NG tube, they are working on getting his feedings up to where they belong. Right now he gets fed 20 mL every hour. They will work on increasing the amount of milk and decreasing the frequency to a point where he is eating more like a regular baby.

He is looking and being treated more like a regular baby each day. Today, he wore clothes for the first time and sat in a baby seat. He has a music box in his bed to keep him occupied. I can hold him whenever I want now, and now that most of his lines and tubes are removed, I can get him in and out of his crib now by myself. I can change his diaper now too. While these are both little things, they are huge accomplishments for us.

Wednesday, September 8, 2010

Wednesday, September 8, 2010

Today was another good day. Caleb's medications are all being switched over to oral medicines. That means that we are actually thinking about him going home at some point! He is down to two different diuretics, aspirin, two pain medications and one blood pressure medicine.

Caleb is now down to three different pumps (down from the 13+ we had at one point) and the associated tubes. It is getting almost easy to hold him now. I got to hold him twice today and Grandpa and Grandma Dougherty got to hold him tonight. He is throwing fewer and fewer fits and his oxygen levels do not drop like they used to. It is not nearly as scary to hold him! He is still on the high flow oxygen, but if you look closely at the picture, the prongs of the nasal cannula are never in his nose. It shouldn't be too hard to wean down to low flow oxygen when you aren't using the high flow!

Today, Caleb got moved to a new room in the PCTU. They wanted to double up two patients with one nurse. The attending cardiologist said that Caleb was one of the two healthiest kids in the PCTU, so he got a more traditional room and one roommate. The room has a door so the two babies can have a little more peace and quiet - they actually have sleep/wake times instead of being out cold from sedation.

It is amazing the progress that Caleb has made in the last three days. He is awake more and more. His oxygen levels are staying at a good place, even with reduced support. He is gaining strength, holding my finger tightly when I hold him. I know that we will have some setbacks, but we seem to be moving forward now!

Tuesday, September 7, 2010

Tuesday, September 7, 2010

Ella, Sam and Maeve's First Day of School

Caleb Watching Mom

We called Caleb's nurse this morning to check in on what happened overnight. He was well behaved and they had no problems.

Ella, Sam and Maeve all had a good day at school. We had backwards dinner (dessert first at the Ice Cream Caboose) and discussed their day. It was fun and very normal.

Grandpa and Grandma Wieland came to Ann Arbor to hang out with Caleb today. They had to wait around for several hours until all of the procedures were completed on Caleb's neighbors, but they each got to hold him. Holding Caleb is a four person project, one person to hold him and three nurses to get all of the junk settled. He was better behaved today, did not turn purple with fits and did not drop his oxygen saturations.

Caleb had his umbilical line removed today and had his arterial line replaced with a venous line. Now we are down one line and the associated tube to keep it flowing. Two less things to fight with to hold him.

I got back to Ann Arbor around 10:00 pm and stopped to check on Caleb. He is still doing excellent on the high flow oxygen. He did not have any weird heart issues when they removed and replaced his lines. He was awake and looking around when I got there. They are weaning him off the IV medication to control his blood pressure and moving him to an oral medication. They are trying to wean him off the IV diuretics, but when I left, they weren't sure if that was going to work yet. If he doesn't keep peeing when he needs to, his fluids will build up and it may make it harder for him to breathe.

It sounds like we are making real progress so far this week. Tomorrow, I hope to figure out what the next step is after breathing on your own!

Monday, September 6, 2010

Monday, September 6, 2010

Caleb had another good day today. Phil got to hold him this afternoon. He was doing well so they took him off the CPAP and put him back on the high flow oxygen. It is much quieter and looks much more comfortable. One nurse described the CPAP as "putting your head out the window of your car going down the freeway at 70 miles per hour".

Phil and I are both home tonight to get the kids off to school tomorrow. It seems strange to be in our house at the same time. It has been one day short of three weeks since the last time.

Today, Caleb was weaned off his morphine drip. He has been on it since he was two days old. Now, he gets pain and sedation medicine when he needs it. It is nice to wean him off, but now everyone needs to be on alert to see if he is in pain. Sometimes he gets really cranky and it is hard to know if it is his temper or if he is really hurting.

We just called the nurse and Caleb was still doing great. That makes 5 hours on the high flow oxygen. Hopefully he keeps it up!

Sunday, September 5, 2010

Sunday, September 5, 2010

Caleb in Mom's Arms

I GOT TO HOLD CALEB TODAY! Bold and all caps does not come even close to how momentous this is! I have not held him since Thursday, August 19th when he was two days old.

Each time he has come off the ventilator, there has been talk of me getting to hold him, but it has not happened yet. Phil went to the hospital this morning and I went at lunch time. On the board next to Caleb's bed, the nurse's notes for the day included "Cuddle with Mom and Dad". Based on our past experience, I wasn't holding out much hope. I was pretty down when I got to the hospital, worrying about what would happen if Caleb isn't strong enough to breathe on his own. One of the other babies in the PCTU just got a tracheostomy because he wasn't able to breathe properly.

I got to hold him for about an hour. I smiled the entire time (and cried happy tears 3/4 of the time). I went through at least 1/2 a box of Kleenex. The secretary for the PCTU came over and asked if it was the first time I had held him. I guess the tears in my eyes and the smile on my face were a dead giveaway! Any concern about how we would deal with breathing problems were forgotten. If we get to bring him home, we can deal with anything!

Caleb got his chest tube out today. His incision site looks good and the bleeding has slowed substantially. He is tolerating the CPAP well and his numbers are looking better after this morning. The doctors are going to let him work on his breathing for another day and if his levels stay good, they will switch him back to the nasal cannula. He has an OJ tube (oral-jejunum) that runs from his mouth to his jejunum (part of his small intestine) so he is still on breast milk. The tube needs to go into his intestine because the CPAP blows too much air into his stomach. The nurse we had today, in addition to being a saint, is a huge proponent of breast feeding and went out of her way to convince the doctors that she could get the OJ tube in and that breast milk was best for Caleb to get stronger. I heartily agree!

Getting to hold Caleb was exactly what I needed today. I am ready to face another week!

Saturday, September 4, 2010

Saturday, September 4, 2010

Caleb was taken off the ventilator again today. Everyone was pretty positive, so when they took him off, they put him on a nasal cannula with high flow oxygen instead of the CPAP. He was pretty testy today, either from being hungry or from the pain of the surgery. I guess the surgery he had yesterday is more painful than the open heart surgery because they have to cut through muscle and then when you breathe, you are using the muscles that have been cut.

Phil and the kids were here, so Phil sat with Caleb and I hung out with the kids. Caleb was doing quite well and his levels were all where they belonged. Phil came back to the hotel to eat supper with us and after supper, I headed to the hospital.

When I got to the hospital, Caleb's oxygen levels were too low and they could not get them back up. They think that there might be some collapse in the left lung again. They were ordering a chest x-ray to determine the extent of the collapse. They were going to put him back on the CPAP and see if that would help reinflate his lung. They are going to try everything they can to avoid intubating him again.

The nurse caught me in the middle of a small meltdown and reassured me that he is doing much better than the first time they extubated. He just might need a little inflation on the left lung and some "tweaking". She told me to call her before I go to sleep to check on him. The nurses and doctors here are wonderful.

I just need to remember that Caleb always takes one day longer than he should and he WILL NOT be rushed. I also need to remember that even though we have small steps backward, we are still moving forward and he is getting better.

Friday, September 3, 2010

Friday, September 3, 2010

Caleb's surgery went well today. The only backsliding was that they had to put in a new chest tube and increase his morphine. He had one SVT episode (the one where his heart rate goes sky high) around the time of the surgery. They gave him some medication and it quit.

His oxygen saturation on the ventilator is down to 25% and he is at 24 breaths per minute. They might try "sprinting" him sometime tomorrow morning. We won't know if the surgery worked until they take him off the ventilator and let him breathe on his own for a while. They might try as soon as tomorrow.

I'm not sure what the next step is because we have been focused on getting Caleb off the ventilator for a week and have discussed nothing else. Hopefully, we will be successful this time and can see what is in store for him next!

Thursday, September 2, 2010

Thursday, September 2, 2010

Hopefully, the third time is the charm! Caleb should be having surgery tomorrow to tack down the left side of his diaphragm. The decision was made in rounds this morning to go ahead, with no dissension. He was still off the ventilator when I got to the hospital this morning, but he was fighting mightily to breathe.

They wanted to drop the oxygen saturation in the CPAP, but Caleb did not agree. His blood oxygen saturations dropped into the 50% range for a while and they had to bump the levels back up. The decision was made to intubate him again and let him rest. They had done another chest x-ray and his left lung was pretty much collapsed. Because they would have had to intubate him tomorrow for the surgery, doing it today didn't cost us anything, will re-inflate his lung and gave Caleb a peaceful afternoon and evening.

The surgery will involve an incision in his side with some stitches placed in the left portion of his diaphragm to keep it in the position it would normally be in when he has taken a breath. The right side will be allowed to rise and fall normally. With the left side down, the right side should draw air into both lungs and allow him to oxygenate his blood. They don't have any real concerns about long term effects from the surgery. Because he was having such a tough time breathing, the surgery will not really cause us any lost time, only speed up his ability to get off respiratory support later.

He is still on breast milk and is still tolerating it well. The oozy spot on his sternum seems to be getting better. His heart is working well. He is still struggling to pee consistently, but they are working on that.

Another big day tomorrow, but hopefully this will be his last surgery this time around!

Wednesday, September 1, 2010

Wednesday, September 1, 2010

I forgot to post that yesterday was Caleb's two week birthday. We are now starting week three in the hospital.

Today, they took Caleb off the ventilator. When I left this evening, he was still off. He is maintaining an oxygen saturation of between 70% and 75%. This is at the minimum of what they want, but he seems to be holding his own so far. His is back on the CPAP and seems to be tolerating it pretty well. He is easily irritated and sucked on a pacifier most of the day to calm him down. He is sucking, so hopefully that bodes well for feeding him with a bottle in the near future.

I am still not convinced that he will not need surgery. He is at the minimum acceptable oxygen levels with 35% oxygen on a system that forces air into his nose. I know that doing another surgery will set us back, but I can't help but think the setback will be minimal compared to waiting for him to get strong enough to breathe without assistance (or waiting him out and having to do the surgery anyway). I think this will be the major topic of discussion tomorrow during rounds.

I talked to the hematologist tonight and he had good news. Because Caleb has required so many blood transfusions, they were concerned he might have some kind of problem. They checked his blood to see if his red blood cells are breaking down and they are not. They checked to see if he is producing good, new red blood cells and he is. He is also producing "nice, fat platelets". There is no known bleeding - no blood in his urine or stool. As far as they are concerned, he just took a beating from the two surgeries in eight days and needed some time to catch back up. Now I guess we can count the circulatory system on board.

After about 10 hours off feeding for the extubation, Caleb went back on breast milk again this evening and everything seems to be working well. His is finally releasing his extra fluid and has not required any additional diuretics. He is still on minimal pain medications and seems to be comfortable most of the time.

Other than the breathing issue, we are pushing forward. He looks good and with the exception of having a pretty hot temper, he is behaving well!

Thanks again for your prayers and support. Hopefully, the next couple of days will give us a better idea of what we are looking at next.