Sunday, January 30, 2011

January 30, 2011

I am a bad mom. I still haven't taken any pictures. I have done loads of laundry and changed Caleb about 20 times, but still no pictures.

Caleb is still throwing up. We have found that he will keep his milk down when we feed him asleep. My suspicion is that he is nauseated by the morphine withdrawal. It is not bad enough to wake him up to throw up, but when he is awake, his stomach is unsettled. We have been moving his feedings around to take place when he is asleep and it seems to be working ok. Luckily, he still sleeps a lot.

The visiting nurse came yesterday and Caleb weighed 11 pounds, 12.5 ounces. This is a little bit more than what he weighed at the hospital, so we aren't too worried about him being dehydrated. His oxygen saturation was 80% and his heart rate was good.

The funny thing is that Caleb is still quite happy. You can tell he is going to throw up because he gets a little fussy, spews and then smiles again. If he hasn't eaten, he has been smiling and friendly. I think he likes seeing the Big Three again.

Because Caleb is eating while sleeping, we have not been working on the bottle feedings. Right now, we are just happy when he keeps his food down! We will hopefully get started on getting him caught back up in the next couple of weeks.

Thursday, January 27, 2011

Thursday, January 27, 2011

Caleb made it home today! I didn't get a picture, but we made it home.

Caleb had a good night last night and today was a busy day. Caleb had blood drawn to check his sodium level. It was just a little low, so we will give him salty milk twice a day. We have found another benefit of the NG tube! Caleb also had a chest x-ray and things still look great. He had his chest tube stitch removed, his IV removed and got his RSV shot. I found out that the RSV vaccine is a passive vaccine - it contains antibodies, not like an active vaccine that contains the virus itself and causes your body to produce antibodies. Because it is passive, the vaccine is given monthly throughout the cold and flu season. It is also susceptible to destruction when your blood is run through the heart/lung bypass machine. I am very glad that we are back up to full protection.

We were discharged around 1:00 pm. On our way out, several of Caleb's nurses from last time stopped to tell us how surprised they were with his success this time. The one nice thing about being in the hospital for longer than expected the first time is that you know the people and know the lay of the land. We have met a lot of wonderful people in Ann Arbor that really care about their patients.

We had to go back to the Ronald McDonald House to check out of the room. Caleb ate and slept while I finished up my cleaning and we went to check out. He threw up on both of us twice as we were heading out. He has also thrown up a couple of times since we got home. Hopefully, this will stop as the effects of the morphine leave his system.

The Big Three were surprised when we got home. We got to eat dinner together and we played Bingo before dinner. Life is back to how it is supposed to be!

I will now go back to Sunday posts and I promise to include some pictures this week.

Wednesday, January 26, 2011

I'm sorry that there is no picture today. Hopefully we will have a "Going Home" picture tomorrow.

Caleb had another good day. He had a good night last night. He did wake up, but luckily the nurses now know that all you have to do is play with him for a while and he will be happy and will eventually go back to sleep.

Caleb had his discharge echocardiogram and EKG this morning. The cardiologist said everything looked fine. Caleb's surgeon stopped in later in the day to say that he was happy with how things looked, that he was happy that Caleb got his act together this time and that we would see him in a year. I have a sneaky suspicion that year is going to fly by!

Caleb's morphine was turned off this morning. Caleb spit-up a couple of times, but he is not agitated at all and shows no signs of withdrawal other than the fact that he doesn't usually spit up. So far, no one seems worried. Caleb did not throw up from his 10:00 pm feeding. I decided I would stay with him until 11:00 pm to make sure we didn't have a problem. Sometimes little problems get bigger when there is no parent there to explain. At 11:00 pm as I was putting my coat on to leave, Caleb woke up and was ready to play. This has never happened at home. When he goes to bed, he sleeps all night. I finally got him back to sleep at 12:15 am.

I think the reason that he was up is that he already has more energy than he did before the surgery. You would think that he would be whipped with all that has happened in the last week, but I think the new circulation is working very well for him. He still hasn't taken anything from a bottle (we have been trying though), but I am pretty sure he has more stamina.

Tomorrow, Caleb will get a chest x-ray, an RSV shot and the stitch removed from the wound where his chest tube was removed. Hopefully, everything moves along and we can be home before the Big Three get home from school. We did not tell them we would be home tomorrow in case something changes, we just told them that we should be home for the weekend. It would be a nice surprise to be waiting at home for them.

Thank you again for all of your prayers and support. It means so much to all of us!

Tuesday, January 25, 2011

Tuesday, January 25, 2011

There is no way that Caleb has a Hemi-Fontan headache. He is MUCH too happy to be suffering from even a tiny headache. Today, we took a stroll down the hall and he smiled and cooed at everyone that would look at him. You would think he was running for mayor.

Caleb's morphine wean from 20 to 10 went well today. He had one spit-up this morning and some really messy diapers (both possible signs of withdrawal), but that was it. The plan is to go off the morphine tomorrow to see what happens.

Tomorrow morning, Caleb has his discharge echo and EKG. He will be sedated, so he won't care.

If everthing goes well tomorrow, they are thinking that Thursday should be our day to go home. I couldn't be more excited.

It seems that the Hemi-Fontan surgery either goes really well or really bad. Baby Aubrey came in for her Hemi-Fontan in early December and is really struggling. She is still on the ventilator and if things don't go well, they are going to take down her Hemi-Fontan and replace her shunt. This is not a situation anyone wants. Please pray for her and pray for strength for her mom.

Monday, January 24, 2011

Monday, January 24, 2011

Today, Caleb learned that he has feet. He spent several minutes investigating them today. He is going to very disappointed in a few days when his foot no longer has a oxygen sensor and does not glow red.

Caleb had an excellent day today. He had a chest x-ray this morning and it looked great. As I have mentioned before, getting a chest x-ray involves being strapped to a device that looks like something out of a medieval torture chamber. Today, Caleb did not cry at all. He flirted with the x-ray technician and sat there with a resigned look on his face during the x-ray. When it was over, he went back to flirting.

With the exception of being kind of sore, Caleb seems back to his normal flirty, happy self. I am having a hard time believing that a little body can go through so much and can come out so happy.

The nurse practioner decided to try Caleb's morphine wean again today. We went back to 20 from 30 at about 9:00 am. As of 10:30 pm, he was still showing no ill effects of the wean.

Today, Caleb was started back on 22 calorie breastmilk. That also seems to be going well so far. He did have one little spit-up, but that could have been because I put the pacifier in his mouth when he wasn't quite ready and gagged him. Bad mom.

His blood pressure, oxygen saturations and diuretics are all still looking fine, so I think that all we have left is the rest of the morphine wean and 24 calorie breastmilk. We will also have to do a discharge echocardiogram and EKG. We will see what new things are in store for tomorrow!

Sunday, January 23, 2011

Sunday, January 23, 2011

We can hold Caleb again! His lines in his heart were removed today, as well as his arterial line and his chest tube. He was even moved from the PCTU to the floor. Today was a good day.

Today, most of Caleb's stuff went well. His diuretics switch is going ok and his blood pressure is staying under control with the oral medications. His breathing is still comfortable and his oxygen saturations are good.

Caleb did throw up several more times throughout the night. They stopped feeding him for a time until they could figure out what was going on. Phil, the nurses and the nurse practioner spent the day playing detective to pin down the cause of the problem. The first thing they tried was feeding Caleb like we feed him at home. Here, they were feeding him about four times faster than we do at home and they didn't flush the feeding set like we do. Caleb still threw up with the modified feeding method. Next, they tried giving him some Ativan to see if he was having withdrawls from that. Caleb still threw up. Next, they tried putting his morphine dose back where it was yesterday and the throwing up stopped. Imagine Caleb having a hard time weaning off morphine! This was not something that surprised me at all.

Now, Caleb is back taking 80 mL of normal breastmilk and has eaten three times with no problems. Tomorrow, the clinical pharmacist will be back and she is the one that got him weaned off last time, so we are not worried. It may just take some time. We made a lot of progress today and it is not surprising that Caleb might need a day to catch back up.

I am guessing that tomorrow we will start getting an idea of what the game plan will be for getting us home. We still have to get his feedings back up to 24 calorie breastmilk (with a 22 calorie step in between) and wean off the morphine. We also have to get his electrolytes to stay stable. They don't have to be right, they just have to be stable so we can keep them right with oral medications. We also have to avoid infections.

Caleb must be feeling better because he was smiling today! He is getting back to his happy, flirty self. It is nice, because all of the nurses that took care of him last time are stopping in to see him and he smiles at them instead of screaming bloody murder.

Saturday, January 22, 2011

Look, no nasal cannula!

I was wrong yesterday. I thought that we would limp along to the point where we could remove the lines in Caleb's heart. Caleb and his medical crew thought otherwise. We aren't limping, we are sprinting! Today was another great day.

Caleb's lungs were still looking better, so they weaned the high flow air down again and removed the nasal cannula entirely by 1:00 pm. As of 10:00 pm, he was still off all respiratory assistance and his oxygen saturations were higher than they were with help.

Caleb's blood pressure has not been creeping as high, so they increased his oral blood pressure medicine and eliminated his IV medication to lower is blood pressure. One less continuous drip to worry about.

Caleb's morphine wean last night went well, so they eliminated his sedative today. He was a little jumpy, but was always able to be consoled when he got wound up. Considering we still can't hold him, this is huge. Another continuous drip eliminated.

Caleb has been peeing like a champ, so they eliminated one of his IV diuretic doses. Cutting down on the diuretic doses helps his electrolytes - especially his potassium - to stay in better balance. This means fewer intermittent IV medications.

Caleb is more alert and recognizes Phil and I. There is always a concern for damage with the large amounts of abuse their bodies take from the bypass, lower oxygen saturations, heavy drugs, etc. We think that Caleb's neurological function is fine.

Caleb is up to full volume for feeding. He is actually getting 10 mL more milk per feeding than he was at home. He seems to be tolerating it well. He did spit up some tonight, but it could just be that he is getting fed faster than he is used to or it could be that he is a baby and sometimes babies spit up.

Tonight, Caleb's morphine will be weaned again - from 30 to 20. The nurses all know that he had problems weaning before, so they are being extra vigilant with his pain control. They are using the tylenol and oxycodone so hopefully we can avoid the additional doses of morphine that he got last time. So far, this has been going very well.

The plan for tomorrow is to switch his IV diuretics over to oral and start adding the extra formula to his milk to increase it from 20 calories per ounce to 22 calories per ounce.

If things look good tomorrow - if he is not too agitated from the morphine wean, if his diuretics switch is working, if his electrolyte imbalances can be controlled with oral methods and his blood pressure stays where they want it - they may remove the lines in his heart tomorrow. This will also allow them to remove his chest tubes if the lines in his heart come out without causing bleeding. Tomorrow could be a very interesting day. Maybe you can get better at having heart surgery with practice!

Friday, January 21, 2011

Friday, January 21, 2011

Today was another good day. One of Caleb's sedatives was weaned this morning and his morphine will be weaned tonight. As fas as I can tell, we have at least three more days of morphine weans - assuming Caleb is not "dependent" and doesn't require a complex wean like last time.

Caleb's blood pressure is still higher, but he did not have to go back on the second blood pressure medicine. We are now in the process of converting his IV medication to the correct dose of the oral medication.

One of Caleb's diuretics was discontinued and an oral diuretic was added. Now we are on only one IV diuretic.

Caleb is still doing well off the ventilator. When I got to the hospital this morning, I was ready for CPAP or even the ventilator, but Caleb is doing great. Over the course of the day, he was weaned down to 21% oxygen (room air) at a volume of 3 liters. This is a reduction from 35% oxygen at 6 liters. His left lung is looking even better today than it was yesterday.

Caleb slept a good portion of the day, but he was awake and not screaming for a while. He did throw a couple of big fits, but I think he is mad and sore. I would throw a fit too. He is still really out of it, but hopefully that will change as the sedative and morphine levels are reduced. I don't think his head is pounding nearly as bad as it was before, so hopefully when the morphine is reduced, he won't be miserable. They have been able to use tylenol and oxycodone to control his pain - no extra doses of morphine like last time.

We got moved to a different bed today. This bed is usually a "double", two babies for one nurse. This means Caleb is getting better and easier to take care of. If it weren't for his lines directly into his heart, we would go out to Moderate Care tomorrow. As far as I can tell, if we don't hit any major snags, we are just going to limp along and avoid putting in a new line through his liver. Hopefully he keeps moving along well and stays happy, because we still can't hold him.

Phil and the kids came to Ann Arbor tonight. Caleb is still pretty boring to the kids because he is asleep and they can't hold him. Phil got to spend some time with him after supper tonight and catch up with their boy bonding time.

Thursday, January 20, 2011

Thursday, January 20, 2011

When I got to the hospital this morning, I found out that Caleb's blood pressure had increased overnight and he was on a new medicine for high blood pressure. The medicine worked, but it required some tweaking throughout the night. By this afternoon, they were able to wean him off the medicine.

Caleb's chest x-ray looked much better and he was finishing up his second sprint when I got there. The bloody secretions have also stopped. At rounds, it was decided to sprint him one more time and if everything looked good, they would extubate this afternoon. Caleb passed with flying colors and was extubated around 1:00 pm. They put him right on high flow because of his past history. I had no problem with that because the bottom lobe of his left lung had not fully inflated and the high flow should help reduce the potential for further collapse.

Because he is off the ventilator, they were able to start feeding him tonight. He had his first breastmilk at 7:00 pm. They will give him 25 mL feedings every three hours to start. If this goes well, they will increase his feedings by 16 mL every two feedings. If there are no hiccups, he should be to full feedings by Saturday morning. Based on our past history and his family history, full feedings should make him much happier.

Caleb threw a major fit when the nurse put in his NG tube and he required some supplemental oxygen. He turned a bright blue/purple color and went back to his breath holding trick. He did not lose his cry from the ventilator. He is only at about 50% volume, but he is at 100% anger. Once he settled back down, his oxygen saturations went back to acceptable levels.

The diuretics are working well and we have not had to work nearly as hard as last time to get him to pee. They removed his catheter today, so now we are one line down. Like last time, he has required a lot of potassium to replace what he is losing. At least when his potassium is low, it is not causing weird heart rhythms.

Our problem now is access for medications. Because they were unable to get a central line started during his surgery, we cannot remove the lines through his chest that go directly into his heart. While these lines are in, we cannot hold him or leave the PCTU and move to the floor. I also think the chest tubes have to stay in. The great debate is whether to find another way to get access (possibly going through his liver) or to wait it out and hope we can wean off enough stuff in the next couple of days so we don't need as much access.

Tonight when I went back after supper, Caleb was still doing well on the high flow, but he was agitated and his blood pressure was back up. They may have to start the blood pressure medicine again. The oxygen saturation in the high flow was weaned from 50% to 25% and he has tolerated that well. They are not planning on weaning the volume until tomorrow to make sure he can handle it.

We will see what tomorrow brings. I am very nervous because huge backslides in the respiratory department are so common - especially for Caleb. Maybe he will surprise me and still be on high flow when I go in. It is a good thing that nothing regarding Caleb's care is dependent on my blood pressure when I go back each morning!

Thank you for your prayers. They are working and we are making some real progress.

Wednesday, January 19, 2011

Wednesday, January 19, 2011

Caleb is still up to his old tricks. When I got to the hospital this morning, he was still on the ventilator, his oxygen saturations were in the upper 60's and he was agitated.

They tried sprinting him early this morning to see if he could be extubated. He had a chest x-ray at 2:00 am and it looked great. He did well for his first sprint so they started his second sprint around 5:00 am. His oxygen levels dropped and he got so wound up it took three nurses to hold him down and calm him. They gave him morphine, Versed and Ativan. I am pretty sure that the amount of drugs that it has taken to calm him down would leave me in a drooling pile on the floor. They quit the sprint, turned the ventilator back up and took another chest x-ray and found that his left lung had collapsed.

They think that his lung may have collapsed because there was some fluid around it and his breathing may have been shallower, not allowing the lungs to fully expand. Whatever the reason, they were not overly concerned and increased the ventilator pressure to try to reinflate the lung.

Caleb's blood levels were low, so he got a blood transfusion. He was also low on magnesium and potassium, so he got some more of each of those. They decided to start his diuretics back up to get him to pee off some of the excess fluid. His weight was not up much, but they think that he needs to be drier to breathe better.

He required a decent amount of sedation today to keep him comfortable and they are suctioning a moderate amount of junk from his lungs. This junk is somewhat bloody and they are not sure why. His oxygen saturations ranged from 65 to 77 while I was watching.

At evening rounds, everyone seemed pretty happy with where he was at and I think they feel that the lung may have reinflated. The plan tonight is to keep an eye on him and if it looks like he can be sprinted again, they will take another chest x-ray to see how his lungs look. I am not holding my breath however. When I went back after supper, he was still agitated and his sats were in the upper 60's again.

Caleb may also have the mother of all headaches. Because the surgery changed his blood flow so substantially, his head has much more blood pressure than it did before. This is causing some of the puffiness in his face and sometimes causes a severe headache. When you put your hand on his head, you can feel his pulse in his entire head. It is no wonder he is uncomfortable and agitated.

We will see what tomorrow morning brings. Everyone seemed hopeful that we are on the right path and that things really do look good. The overall impression that I get is that this is not an unexpected bump in the road and it will just take a little more time.

Tuesday, January 18, 2011

Tuesday, January 18, 2011 - Update 4

Before surgery

After surgery

Today has been a busy day. Phil got to Ann Arbor around 12:30 this morning. Because the weather was getting nasty, he decided to head over after he got the kids put back to bed at home.

We got to the hospital at 6:15 this morning. Caleb was awake and in a good mood. After they weighed and measured him, I put a hospital gown on him and the nurse gave me a heated blanket to keep him warm. Within one minute of wrapping him in the blanket and snuggling him onto my lap, he was asleep. We filled out paperwork and met with the surgeon. The anaesthetist that came to get Caleb to take him to surgery was a woman and she carried Caleb in her arms instead of putting him in a crib and wheeling him out. Caleb smiled at her and was perfectly fine with this. Phil and I were so relieved that he left without being scared or screaming. I didn't even cry! This set the tone for our whole day. I felt a peace that I had not felt with the other surgeries. Caleb has gained so much strength in the past couple of months and now we know just how tough he is.

There was a young couple also sending their baby off for heart surgery and they were very anxious. We all headed up to the waiting area and Phil and I tried to make small talk with them. They weren't very talkative, so we dropped it. We finished our paperwork and went to the cafeteria for our usual "Caleb is off to surgery" breakfast. Unfortunately, we now have a surgery routine.

When we settled back in the waiting room and got our first report, the young couple realized we also had a baby in for heart surgery. They explained that they didn't talk to us this morning because they assumed we were social workers or something because we were so calm. Phil and I thought this was funny - we have been in their situation four times before and now know the drill so we weren't as scared. We had a long chat with them after they realized that we understood what they were going through.

We got to go back to see Caleb around 2:15. Phil didn't recognize him and walked right past his bed. His head is quite swollen and he looked like the hospital Caleb, not the home Caleb. Caleb's body is now adjusting to the new method of sending blood to his lungs. This will cause his head to swell some and it may turn bluish until everything settles out. He will also probably get a very nasty headache for several days. Luckily, the headache is so common that everyone is on the lookout for it and will work to manage his pain.

Caleb was slightly agitated when he got back for recovery and his blood pressure was higher than they like it. They increased his morphine to control his pain and gave him a drug that is very similar to the one that he took at home for his blood pressure. His morphine dose is quite high, but they think that he has a drug tolerance built up as a result of his previous surgeries. No one is particularly concerned.

Caleb recieved some blood because his hematocrit level wwa low. He also got some potassium because his electrolytes were a little bit off. Other than that, everything is right where it is supposed to be.

When the doctors rounded tonight, they discussed Caleb's breathing. Right now, he is on the ventilator from the surgery. He was doing so well, they started to reduce his breathing support. So far, he has tolerated this well. They will keep trying to wean his support to a point where they can allow him to try to breathe on his own. If he passes his breathing tests, he can be extubated. The understanding I am getting is that they would not be surprised if he got extubated tomorrow. They think that he will be a happier camper without the breathing tube if he can handle it.

Everyone has been very happy with how today went for Caleb. Maybe you can get better at heart surgery with practice!

Phil and I would like to thank everyone for their prayers and words of support. We are so lucky to have such a network of people praying for and pulling for Caleb.

January 18, 2011 - Update 3

We just talked to the surgeon and he was very happy with the repair. They waited for a little while for some bleeding to stop before they closed him up. The bleeding is not uncommon and stopped just fine, so he should be heading to recovery shortly.

He told us that he had never seen a diaphragm need to be re-plicated, but he said that with Caleb, nothing surprised him. At least he knows Caleb!

I will post again tonight after I get to sit with him.

Tuesday, January 18, 2011 - Update 2

They are now done with Caleb's heart repairs and things went very smoothly. He is off bypass and his heart started right back up with very little medication. His pulmonary pressures are normal - not low normal, not high normal, just normal. They are very happy with how things went.

The only problem was that they couldn't get a central line in so they had to put a line in through his chest directly into his heart. This might slow down our release from the PCTU and move back our holding possibilities. It will not slow us down from anything else though. It is not surprising that they couldn't get the central line in because the vessels in his legs have been messed with so many times already.

We are now waiting to meet with the surgeon.

Tuesday, January 18, 2011

We got our first report. The nurse practioner that brought us our news was our favorite NP Louise - so we will consider that a good sign!

From the chest x-ray, the cardiologists noticed that Caleb's left lung had raised so they ended up putting some more stitches in to hold it down while they are in there. He is on bypass now and they have not started work on his heart.

Louise did say that Dr. Ohye was very happy with what he has seen of the heart and pulmonary arteries. We should get another report shortly.

Monday, January 17, 2011

Monday, January 17, 2011

Everything went very well today.

When we got to the hospital, Caleb got a chest x-ray. Luckily, we have done that before because it is a horrible thing to watch if you aren't ready for it. They strap the babies with their arms above their heads and velcro them to a harness that looks like some kind of torture device. Needless to say, Caleb did not find it amusing.

Next, we met with the Pediatric Cardiology Fellow. He took Caleb's history since we left the hospital and asked all kinds of questions that have been asked several times before.

We then went for his sedated echocardiogram. The nurse gave him a drug through his NG tube - no pokes - and he was asleep within minutes. In case I haven't explained before, an echocardiogram is like a fancy ultrasound of the heart. There is no pain involved, but the little guys don't like to lay on their backs and be covered in ultrasound gel while someone runs a probe all over their chests. As soon as they finished and were cleaning him up, he woke up. The nurse warned us that some babies are crabby and some are fine. She compared it to the way adults get when drunk. Come to find out, Caleb is a really happy drunk and finds himself to be quite the ladies' man. He flirted and babbled with the nurses for a good ten minutes while they did his EKG. The EKG is also painless, unless you count taking off the stickers.

We met the Pediatric Cardiologist that is in charge on the floor for the next two weeks and went over the findings. Caleb's heart structure looks fine and the good side is working properly. We discussed what they will be doing tomorrow in more detail. I asked about the possibility of damaging the nerve that controls the right side of his diaphragm and he said that is is very remote. I was very happy to hear that, because if that is damaged, it would likely require him to be on a ventilator for life.

Next, we met with the anaesthesiologist to fill out paperwork and go over when to stop Caleb's medications and feedings for tomorrow. Luckily, he can eat until 3:15 am. He should not be terribly hungry tomorrow morning when he goes in.

Our last stop was to have blood drawn. Caleb screamed like a banshee, but they got him on the first poke with no problems.

We spent the rest of the day at the Ronald McDonald House hanging out. Caleb talked to everyone we met and was in a really good mood. Hopefully, in a week or two from now, he will be back in a good mood and ready to head home.

We have to be at the hospital at 6:15 tomorrow morning and Caleb is the first case scheduled for surgery. I will try to post something as soon as we get news. Thank you for all of your prayers!

Sunday, January 16, 2011

Sunday, January 16, 2011

Asleep in the playpen at the Ronald McDonald House in Ann Arbor

Getting my diaper changed by Aunt Beth

We made it safely back to Ann Arbor. Phil is home with the Big Three and Phil's sister Beth came to Ann Arbor with Caleb and I. Beth is helping me out with all of the logistics of trying to get moved in with a baby that hates to be left in his car seat and that turns a funny shade of blue when left crying for very long. Considering I needed to make four trips to the van to bring all of our stuff in, I really needed her. Thank goodness for family once again.

Caleb has still been doing well if you ignore the blue part. His oxygen saturation was 74% on Friday when the visiting nurse checked him out. As long as he is calm, happy and not wiggling too much, he can still get good numbers. His weight was 11 pounds, 8 ounces. Everything else looked fine.

Caleb did take 8 cc's of milk from the bottle on Saturday, so we still might be in a good place for bottle feeding after the surgery. That was a huge relief for me. We will deal with it if he never gets the bottle feeding, but it will be much more pleasant if he does get the hang of it.

I will post the results of tomorrow's marathon of doctor's appointments. Hopefully all goes well and we will still be on track for surgery on Tuesday. As much as I dread him having the surgery, at least it will be over and we can start moving forward.

Sunday, January 9, 2011

Sunday, January 9, 2010

Caleb's NG tube is out because he finally got some professional pictures today. We got some pictures with the tube in because that is who he is right now, but we also wanted some without the tube so we could see his handsome face. I will have some great photos to post soon!

Caleb got his second RSV shot on Friday from his visiting nurse. She is a great lady that always feels bad giving him shots. She apologized and gave him a kiss before she left.

Caleb's blood oxygen saturation levels were lower again this week. It is definitely time for the next surgery. He ranged from 59% to 76% - not quite the 70% to 80% we want. He is still growing. This week he weighed 11 pounds, 2 ounces. We have broken the 11 pound mark!

Right now, Caleb has absolutely no interest in taking a bottle. I am a little nervous that he is developing an oral aversion as a result of his reflux. We have decided not to push the bottle and wait until after the surgery. Hopefully, with the increased energy he should have after the surgery, he will be more successful with the bottle and realize it is a good way to eat. Right now, we are kind of in a Catch 22 situation. He has reflux because of the NG tube, but is not interested in the bottle because of the reflux, requiring us to keep the NG tube.

Next week at this time (as long as Caleb doesn't get sick), Caleb and I will be in Ann Arbor. We have to be at the hospital at 6:45 am on Monday, so we will travel over on Sunday. On Monday, he will have an echocardiogram, an EKG, bloodwork, and will meet with the cardiologist. Luckily, nothing he has on Monday will be very invasive, so I will get to stay with him all day and he will come back to the hotel or Ronald McDonald house with me on Monday night. We will head over to the hospital at 6:15 am on Tuesday for his surgery. He is the first case on Tuesday.

I will try my best to post next Sunday, but depending on the weather and Caleb's ability to settle in, it may not happen.

Sunday, January 2, 2011

Sunday, January 2, 2011

Caleb "exercising" in his new seat - Caleb has to hold up his head and use his head, neck and core muscles to sit in this seat. Hopefully this will strengthen some of his muscles that have been slow in developing.

Things are still the same with Caleb. His nurse's appointment will be this coming Friday so he can get his next RSV vaccine. He is still bothered by the reflux, but we can work around it by laying him on his tummy on our chests while he eats. Another benefit of the NG tube!

As the new year begins, we would like to say thank you to everyone that has followed and prayed for Caleb. We have been so blessed with the support we have received from our friends, families and the new friends we have met (or never met for that matter). Phil and I can never thank you enough for helping us through the low spots and celebrating the good things that have happened.

I have been asked what this next surgery will entail. The abridged version is that they will disconnect the Superior Vena Cava from his heart and dump it into his pulmonary artery and remove his shunt. This will send the blood from the top part of his body directly to his lungs, bypassing his heart all together. Following is a link to the U of M informational page for Caleb's condition - Tricuspid Atresia. If you scroll down to "How is the problem treated", Caleb had the Blalock-Taussig shunt as his first stage surgery and will be having the Hemi-Fontan on January 18th.

Tricuspid Atresia Explained