Healing

From Bambini4

Nico is healing well despite having had anther cold for the duration. This weekend Barbara scheduled play dates every day despite my reservations, but with our friends kids that are the same age. It would have been fun to do more Easter things with them, but the risk of infection from older kids is significantly higher.

Nico needs 6 weeks to heal. If this goes well, he will never have to deal with this again. If an infection sets in, the complications could have him back in surgery at least 3 more times. We have read many stories like this which is why we put so much effort into finding the right surgeon and taking every possible precaution to reduce the risk of anything that might interfere with his healing.

All the Doctors admitted that the real magic of the surgery is not the knife, but the bodies ability to heal itself after such trauma.

Barbara has been obsessive about getting food into him. Sometimes we prepare three different dishes because his taste changes like the wind direction. If he had his way, he would eat carb's like bread all the time.

Some foods he refuses to eat unless he is on papa's lap. That's the magic spot where the good stuff happens like cool video's and exciting restaurants. I have been successful recently in getting him to eat grapefruit this way. It is very difficult to get raw fruit into him, but this is especially important for Vitamin C while is fighting the cold.

The healing is going well and he is not so sensitive in the area. With the help of benedcite, our Dulla, I took the Catheter out this weekend which is not pleasant but he was very good. I have read that it causes a lot of discomfort so I am sure he is feeling better now. Three of us held him on the changing table while I snipped the suture and gently removed the long tube.

The doctor said it would come out easily, but that's like the workshop manual that uses phrase like "undo retaining bolt and remove ball joint". In reality you need a large ball peen hammer and 20 minutes of heavy pounding to get it loose. I was terrified that it would be stuck and I would pull the repair apart while blood gushed everywhere.

It went very smoothly, but I had a knot in my stomach all day and I am sure Nico could feel my fear when I did it.

This has been the most psychologically un-nerving experience. When combined with lack of sleep, you have to have a strong resolve and great confidence in your decisions otherwise it can be very difficult to navigate.

The Doctor had very little bedside manner but I could tell that he was razor sharp. When I walked over to the main hospital with his administrator, she mentioned that some parents complain about this. I told her that it didn't bother me but i could understand how parents that need reassuring would come up short with this doctor.

So far everything is going great. We have another 5 weeks to go.

Happy Easter to all of you and thank you for all your emails.

Return

We flew back to San Francisco yesterday. At my insistence we booked the return for a Tuesday, one of the slowest air travel days of the week, and at around lunchtime (the babies nap time). This worked out really well

It worked perfectly. They were excited to run around the waiting lounge jumping on the chairs and playing peek a boo around the columns, finishing with a duet of high pitched screaming - their latest discovery.

We elected to get on the plane last to minimize the time we would have to entertain them, and we had the bottles and blankies ready to go when we took off. The swallowing helps clear their ears and the milk puts them to sleep. This worked perfectly and this time they slept all the way home.

The flight was four hours (an hour longer than on the way out due to the jetstream) and we had to keep the babies on our laps. If you have ever had to sit in one position without moving for four hours, you will know all about parts of your body going to sleep and the torture of not being able to move. Its like the endurance tests on the TV show Survivor.

There were a couple of other toddlers on the flight and one of them was super bored and not afraid to share it. As I listened to that parent try to entertain, the body pains seemed a much better alternative.

I was worried that Nico would not sleep as he got another head cold from Luca a couple of days after the operation. He was rubbing his forehead and face a lot indicating that he had the congestion and headaches that go with it.

Maria Del Carmen met us at the airport. She came out to drive us home. I had decided to take our famous car seats with us on the trip because the rental car seats were a complete unknown. When I asked the rental agent about them in Dallas, she said she "would not put her child in them" and they had complaints about them.

Aside from that, they wanted $10/day each plus tax. By the end of our trip, the car seats paid for themselves 2x because the airline lets you check them in free. The only problem was carrying them. We had a large suitcase with all the baby stuff, I had a roll on carry aboard case plus a laptop, and we had the stroller and daiper backpack.

Even with the babies in the stroller, we did not have enough hands. I found a cart in all but one instance where I resorted to looping the long back belt of the car seat through both of them and dragging them across the airport on the smooth floor behind the cases.

Each trip was a day long workout for me filled with many pieces that all had to negotiated with a baby under one arm. The trick turned out to be to stand the baby on the counter first. This stuns the baby as he takes in the people talking to him and buys enough time to dig out documents and pay for things. All the counter staff talk to him and he doesn't know what to make of all that.

When we finally got home, the boys were a little more settled. They like being in familiar surroundings and their own comfy beds. They both slept really well last night and seemed much more at ease.

This is the 6th day after the operation and Nico is doing much better. Feeding him for the last week has been an ordeal. Tonight he ate by himself and is running around like nothing happened.

The wound seems to be healing well although it is still bleeding a little, probably from all the activity. I took some pictures tonight and sent them to the Doc for his comment, but it looks good so far.

Recovery

Nico is healing but he is very needy. If I put him down or give him to Barbara for a second he crys. He wants to be in papa's lap watching his favorite music videos. He does not have much energy so he is not much interested in running around.

We went to the Zoo yesterday. It was a long day of carrying two 25lb babies around. They had the most fun in the gorilla watch tower running around playing peek a boo. THey seemed to enjoy the birds the most. The parrots were most interesting to Luca who was fascinated by their squaks.

Nico's original dressing has fallen off and exposed the wound. It is not small. He is very sensitive when you remove his daiper and screams. It is still weeping blood so we bought some gauze and vaseline impregnanted gauze that prevents the daiper of the regular gauze sticking to the wound.

The biggest risk to the success of this procedure at this point is infection. The Doc told us that we did not need to do anything, but he all wounds need the dressings changed so i called my Doctor friend who confirmed that a dressing change 3x a day is in order.

He also suggested washing the wound with water and not using any sponge or wipes directly on it. We bought some wound wash which is Ph neutral so it doesnt sting. He still hates it when we spray it on the wound, but it will help keep it clean from urine.

The biggest problem is getting him to eat. He is usually ppicky, but since the operation he refuses everything Baraba cooks him. We have been going out to dinner because they love to sit on our lap and eat our food. Last night the novelty of that had worn off and we were at our witts end trying to find something he would eat.

He will usually much on whole wheat bread, but he was pushing everything away from his face. We left the restaurant and went home and after an hour of musoc video's he took a bite of bread. Then I would tiny flakes of salmon on top and he gradually ate a decent amount of salmon and bread.

He had been holding onto his #2 because he was afraid it would mean more pain. After eating ha went and Barbara and I cahnged him without any extra prodding of the sensitive area.

Fionally there is bed time. This can be quite difficult and nico cannot go in the bath and needds two of us to change him and get him into night clothes. As soon as Luca is unattended and Nico starts screaming, Luca gets very clingy and starts crying too. It is very stressful.

They have not been falling asleep easily so I take them in the rented minivan down the freeway for 45 mins. This will put them to sleep for sure, but i can only do one at a time as I have to carry baby and carseat back into the room. The total weight is around 80lbs and I must negotiate three heavily sprung doors, two with card keys, and lock the van. My back is hurting.

Barbara has so much preparation to do wherever we go. The backpack needs snacks and juice and milk and water and clothes and on and on. When we get back she has to prepare food in no time flat all with a boo in one arm tuging at stuff.

On top of all that, she has to wake up all night every three hours and deal with Luca who wakes up at 5am. She has not had a good nights sleep since we got here. Every day ais 99mph and a lot of stress because we feel for Nico so much.

Operation

Nico Completed his operation yesterday and the Doc was happy with the results.

We flew to Dallas on Monday, a difficult three hour flight. I don't think there was a single passenger that hadn't said hello to them at least three times. we read books, walked up and down and played dvd's but they were still very restless. I could not wait to get off that plane.

By the time we got the minivan I rented then drove to the hotel and went grocery shopping it was midnight! They were cranky and tired. They did not sleep well. The next day we waited at the hospital for three hours to get the doc to see him prior to surgery. There was not much he could tell until he made the first incision.

They missed lunch and were an hour late for their nap so it took an hour to get them to sleep. I went back to the hospital and paid.

Yesteday the day went very well. The people are SO nice at Childrens medical center. Even the admitting staff go out of their way to please. So different from kaiser California. Nico was relaxed. I had found out what time the operation was scheduled and timed it so when we got there we went straight into the prep room I was not going to sit in another waiting room for two hours with a baby that had not eaten or drunk anything since the previous night!

That worked really well. Nico relaxed. They attached the pulse/Ox and he didn't like that. Then I sat with him on my lap and he started getting really sleepy. Then they gave him the pre-med and he went to sleep.

Not all babies take the pre-med. He drank it all. I sat with him for 30 min's while it took effect then we put him on the rolling bed and he went into into the O/R. Barbara was upset that he was on my lay not hers. I think she felt like she had let him down. The tongue lashing I got about this was just her way of relieving the obvious tension I think. They would not let us go with him, but he was very relaxed so i felt comfortable letting him go.

We went down to the Hostpital cafeteria which was wonderful. On the way Luca saw the model trains running all over the main entrance. He was a little freaked out, but after some lunch took a nice long nap. The restaurant background noise is great for putting babies to sleep.

After two hours they came down and told us the Doc wanted to see us so we went back up to a conference room (unlike Kaiser) where he went over the procedure in private with us. I gave him a second $100 bottle of wine I put on he credit card. I wanted him to be available post op if anything happened and with his personal email address I was "buying" a fast response

The operation went two hours which is about the minimum time for this procedure, so it obviously went well. There was nothing that he was concerned about. He was very confident in his work (and his results prove it).

Last month he was training 80 docs from all over the world. He is very precise and unemotional. He just knows what he is doing and does it well.

Next we went back to the recovery room. Nico was awake and vey out of it. We could not take Luca in with us so we switched out every 10 mins. Nico sucked down some apple juice and promptly threw it all up. The wretching hurt and he was not happy.

It took another hour for the medication to wear off and for them to remove the IV and the monitors. Then we took him back to the hotel.

The dressing is supposed to stay on for a day or so and then fall off. It is taped in place with surgical scotch tape. It looks like a large blister pack of gum, with a bloody red mess underneath.

The first night we had to wake him every 3 hours and give him tylenol or Ibuprofrin. It was a loooooong night. I stayed in a separate room down the hall hoping to get some sleep, but at 3am the phone rang and all i could hear was Nico screaming in pain. In the coming days it would become very apparent that the only position Nico would relax in was on my lap. I Would play him the youtube cartoons I downloaded and he would settle. He did not want Barbara, he wanted his papa or he would scream continuously.

End of Flu Season

From Bambini4

Video:
Hallway fun

The boys finally recovered after a couple of very difficut weeks during all the rain we had recently. Luca Got Roseola that Nico had around the new year. He broke out with a slight rash all over his body and had a temperature. Then his tummy was gurgling and he just could not sleep. After a week of having zero energy to even smile, he got better.

Hopefully that conlcludes the first season of vuruses. With a few weeks break here and there, they have basically been sick since the day after xmas. This is to be expecte before the age of two, and I am very glad they did no have to deal with these yucky viruses when they were just months old.

Next week we fly to Dallas for nicos surgery. We are trying to keep him from cathcing anything else that might delay this trip again.