Progress Report

Right now, Caleb is undergoing an MRI of his head and spine. The results will be examined to determine if any of his hypotonia is due to anything abnormal in these areas.

As far as the meeting on Wednesday, it was a unanimous decision not to do anything to Caleb until he gains weight. They want him to be 6 kilos before they do a cath or surgery. (Maybe our friends in Canada could tell us how many pounds equals 6 kilos!) How they get him to gain weight is up for debate. Many of them want him to have a G-tube. This is a tube that goes directly into his stomach. We then would feed him by attaching an apparatus to a hole/button on his stomach and inserting food manually. This would be less work for him and for us. This disadvantages, of course, is that he would have to undergo another surgery and he would have a little protuding thing on his tummy.

The second option is to go home on a feeding tube. This is the tube that we have used in the hospital to feed him. It is inserted into his nose and goes down his throat into his stomach. The advantage is that it is non-surgical. The disadvantage is that he could still choke and throw-up on occasion.

Please pray that God gives us wisdom in making these decisions. Thank you.

Pictures

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What Will They Do To Fix Caleb

Since we were moved to the CICU on Sunday he has been feeding 10-15 minutes by mouth and whatever he doesn't finish they give it via a feeding tube in his nose. He is still throwing up a bit so they have decreased the amount of milk he is taking. One possibility was to make sure he was gaining weight using this feeding system and we would go home feeding him this way until he was ready for a diagnostic cath for the Glenn (2nd surgery). This is not an option anymore. Recent heart studies show that his heart is very large and there are significant markings in the lungs along with high pressures and measurements that are forcing them to intervene now. He will have a cath done this week to determine what is causing him to be in heart failure and pulmonary hypertension which can put the second surgery in danger and make him a candidate for transplant. If they cannot fix the problem or problems in the cath lab he will have to be reoperated (adding an operation to the series, making it four instead of three). Speaking of transplant...Please seriously consider becoming an organ donor. There was a 14 year old boy that was here since our first stay that died on Saturday waiting for a heart to be donated. This is the second child that dies during our time in the cardiac units. Please pray for God's strength and healing.

Pressing On

Everyday Caleb sees different doctors and therapists. Today he was seen by the usual group of doctors, residents, fellows, and nurses during the morning rounds. Several people we were used to seeing in this group are no longer assigned to the unit so they weren't really familiar with Caleb's history. (Mommy knows him the best.) They are not really sure what to do except try to fatten him up so that he can be bigger for his next procedure.

The neurology people came by. They say he has "central hypotonia." Seems to have something to do with his brain. Apparently, it may be completely correctable through physical therapy and certain exercises. The physical and occupational therapy came by but because he had just finished feeding and has a history of throwing up, they didn't work with him. They will hopefully do that tomorrow. We, then, will learn the exercises and work with him regularly.

Caleb has been moved to the CICU, so now, because the attention is much more thorough, Janet is able to sleep through the night and his nurse will feed him. Janet is staying at the hospital; Pat and Abuela (grandma) are on Genesis-duty.

He will definitely need a catheterization procedure at three months (November) but likely sooner. The goal for this hospital stay is too get him fatter, stop his vomiting, and decide how to proceed.

We didn't expect to be back in the hospital so soon. Please pray for Caleb; we know many of you do. Please lift him before the Father and ask him to be healed.

God's Healing Hand

The reason we are in the hospital is because Caleb is not gaining much weight, he's breathing fast, about 60 respirations per minute, the norm is 40, and because he has been vomitting. He has been diagnosed with relux and is on a medicine for that. He is not vomitting so much now.

The biggest concern is that he still has too much blood flow to the lungs, hence his fast respiration rate. We were hoping that he would grow into his shunt and his blood flow to the lungs would decrease to a normal level. This hasn't happened yet. The doctors want him watched closely. They will be doing an echo on Sunday. They have also called for a chest x-ray and blood work. They will discuss his case in their conference meeting on Wednesday. It is likely that they will want to send him to the cath lab to investigate further before they decide on whether or not he needs another surgery.

We were expecting that his second surgery (the Glenn) would take place at 4-6 months. Now it's possible that it could happen during this hospital stay. He's still pretty small so that makes the Glenn more difficult and the risk greater.

We are hoping that he won't need surgery. We are hoping that he will start gaining weight without vomitting and start breathing at a normal rate. We know that nothing is too difficult for the Lord. He is able to do immeasurably more than all we could imagine or ask. Lord, stretch forth your hand to heal.

We're Back

Haven't posted in awhile, we know. Pat's been doing hurricane relief ministry in Mississippi and Janet has been having her hands full, I mean really full, with our little Caleb.

But we are back in the hospital.

Caleb has been throwing up almost every feeding. He has seen a GI (gastro-intestine) specialist, and had a sonogram of the stomach done. It turns out that one of his veins from his heart are pushing against his esophagus, giving it a kink, or bend. He also has reflux. The doctor prescribed a medicine for his reflux to be given 30 minutes before every other feeding. So now he only throws up every other feeding.

Yesterday, Thursday, Caleb only drank six ounces all day. Usually he drinks 20-24. In six days time, he has only gained one ounce. The doctors would like to see him gain about an ounce a day.

So we are back in the hospital.

With all the medicines to give, and the crazy sleep schedule, combined with the uncertainty about Caleb's future makes good days difficult and bad days unbearable. We must fall back on what we know is true: God loves us; He is faithful; His word is true.

We have been able to meet some more parents and are hoping that the Lord will use us here to minister to people. Please keep us in your prayers.

A Rough Day

The cardiologist told us that Caleb is not doing well. He is still getting too much blood flow to the lungs. This is causing him to breathe fast and his heart to work very hard. There is an ever-increasing possibility now that we could be back in the hospital if there is not significant improvement in his condition. We have also noticed at home that there is an increase in his saturation levels. They are supposed to be between 75 and 85; his now are up in the low 90's. This is another sign of increased pulmonary blood flow. He has gained weight. Today he was 8 lbs 8 ounces; that's his saving grace and the main reason he wasn't hospitalized today.

Please pray for him and for us. We (especially Janet) need strength and wisdom. Thank you.

Doctors, Doctors, and More Doctors

Today Caleb will see his cardiologist. We are hoping that when he is weighed he will have put on some significant ounces. In other words, we hope, to use a Biblical image, he is not "weighed and found wanting."
Yesterday he saw his pediatrician. She's great. We chose her specifically because she was recommended by Dr. Mas, the cardiologist, and has other patients with CHD.
We also saw a pulmonologist. Once a month, Caleb receives a shot to protect him from RSV. He also has to be very protected from getting any kind of cold or infection as it would be much more difficult for his lungs to handle.
So three doctors in one week!
The biggest issue right now is his feeding. Janet has to "force feed" most of his three ounces. He sucks and swallows the first ounce fine. But the last two ounces, we have to massage his checks and throat as he feeds so that he will swallow. It can quickly become quite tedious and frustrating.
Would you pray that Caleb will feed better, that he will learn to suck and swallow on his own, that the Lord would strengthen him for this? Would you also ask the Lord to give Janet and extra measure of strength next week, as Pat will be out of town? Thank you!

...and Home Again

After blood tests and a couple chest X-rays, it was determined that the level of digoxin in Caleb's blood was too high. This was the cause of the vomitting and, most likely, the other symptoms. The solution is simply to decrease the level of digoxin that Caleb has been taking. (Digoxin is a medicine that helps the heart to beat more forcefully.)
We left the hospital shortly after midnight.

Back to the Hospital

We just talked to Dr. Mas, the cardiologist. We called her because Caleb has been sweating alot, and the veins below his neck have become more visible. She said this could be a sign of heart failure and asked us to go the emergency room at Miami Children's Hospital. Caleb likely will be kept overnight for observation.
We continue to pray and trust the Lord.....

The Adventure Continues

We are living with Janet's mom and family and they have dial-up Internet access. For this reason we are unable to be as active on keeping all the update current and picturesque. So here's a quick one.

• Caleb seems to have an eye infection - he's taking medication for that.
• The cardiologist says he's doing great - except that he is breathing too fast. She prescribed a medicine that should help that. We hope that his breathing will get better as he grows.
• He is still floppy, or hypotonic. This means that his muscle tone is not where it needs to be. I notice it most in his upper arms. We are navigating the sometimes difficult waters of insurance, goverment programs etc to get him all the therapy and treatment that he needs. This takes a bit of time.
• A nurse comes to our house three times a week to monitor Caleb's progress.
• We see the cardiologist again on Monday.
• Janet is amazing. She's doing a great job at a very difficult task. Please keep her in prayer.

That's all for now. Thank you so much.

Doctors Visits

Today we went to the pediatrician. Caleb is in the bottom 10th percentile for weight, and the 75th percentile for height; so he's tall and skinny! The big prayer request is that he would gain weight and be healthy in all other regards. The doctor ordered two ultrasounds - one of his hips and one of his kidneys just to make sure those parts are all working ok. He will be receiving regular physical therapy to help him regain all his movement. Thursday he goes to the cardiologist; in a few weeks to the neurologist.
We continue to grow in the Lord recognizing that He uses all things that we might know Him more.

Our First Day Home

...was busy adjusting to having two small children. Caleb is doing well. Genesis is having a bit of a tough time adjusting to Caleb being home and not in the hospital. She loves him very much and hugs him and kisses him and pats him on the head constantly. She doesn't like it when we put him to sleep after we feed him and she wants to use all his baby gear. We understand that he is still a novelty and expect things to gradually become more routine as the days go by. We are just happy to be home and pray that our sleeplessness will not let us loose sight of the blessing.

"Bless the Lord, O my soul; And all that is within me, bless His holy name! Bless the Lord, o my soul and forget not all His benefits:who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction, who crowns you with lovingkindness and tender mercies, who satisfies your mouth with good things, so that your youth is renewed like the eagle's." Psalm 103:1-5

Going Home!

Looks like it could be today. We've been here at Miami Children's Hospital for 25 days. Last night, I talked to a lady from West Palm Beach who was here for a month and a half last year. Her baby was born on Christmas Day, and they were here through Valentine's Day!
Today they put an IV in his hand, which is not an easy thing to do. This was done because they ran a lung profusion test in order to see the flow of blood to each of his lungs. A fluid was put into the IV and then in the Nuclear Medicine department, they did a computerized test that allowed them to see how the blood is circulating to each lung. The result of this test was 65/35, which is within the acceptable range for a cardiac baby.
The results for the discharge echocardiogram, chest x-ray and tons of blood work was also ok. We are now getting ready to watch a CPR video and take a test on a maniquin. I guess going home day is also test day. After we get the medicines and the oxygen saturation and heart rate monitor we should be able to sign the papers and head home. A nurse will be visiting us at home three times a week to check on Caleb.
These last 25 days have been somewhat of a roller coaster. We've cried, made new friends, prayed, laughed, been thankful, and made the CICU our home. Today we are happy.
Caleb visits the cardiologist next week, comes back here in three weeks for an MRI, and eventually we'll do all this again in about five or six months when he has his second surgery, the Glenn.
Thank you for walking with us through this. Thank you for your prayers and your love. We are so thankful to you and overwhelmed at the graciousness that so many have shown us. We will continue to update the site with his progress.

New Pictures!

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By the way, the EEG came back normal. It should only be a few days now and we can go home.