Caden’s Page

Caden is doing great at home. It has been almost a week now since Caden came home. He is eating good through his G-tube and gaining weight. He went to his pediatrician this week and weighed in at 7lb 2oz at 22 inches long. Caden also had follow up visits with his cardiologist and general surgeon. All the doctors and nurses that saw Caden this week said that he looked great. We already have in-home nursing care started where a nurse stops by at least once per week and are on call 24/7 if we need assistance. We expect to have occupational and physical therapy started within the next week.

The biggest news of the week is that Caden has been cleared to take breast milk through his feeding tube. The doctors want us to fortify it with a little bit of powdered formula to make sure it has all the nutrients that Caden needs. We are going to make the switch from his current formula to breast milk over the weekend. We will be visiting the cardiologist again in a couple of weeks to verify that Caden’s thoracic duct area has not sprung any leaks as a result of the switch from the special formula that he is on now. You can read the 11-16-04 notes to get the reason for the special formula if you are not aware of why Caden was put on it in the first place. Caden is eating on a modified compressed schedule right now. He gets fed continuous between 8pm and 8am. He gets compressed feedings during the day. He is sleeping through the night for the most part, but does require his secretions to be suctioned out a few times during the night. He has only set his apnea monitor off about a half dozen times total since we brought him home. He is still recovering fine on his own from the apnea spells.

We are slowly getting more comfortable with Caden. We are getting a little more sleep each night. The first few nights we were both sitting straight up in the bed at the least little sound that was out of the ordinary. Caden is sleeping in his own room and the sounds that he makes are much different sounding over the baby monitor. Caden is responding more every day to our voices and touch. He loves to be held.

Riley is so excited to have Caden home. He wants to hold Caden so bad. We are having to keep them separated right now due to Riley having a pretty nasty cold earlier in the week. Riley saw the doctor on Monday and the medicine that the doctor gave him is clearing him up pretty fast. We hope Riley will be well enough to hold and hung Caden by the end of the weekend.

Sherry and I are doing pretty good. We are making this week a family bonding week. We do not have anyone else staying with us. Thank God the Mom’s Club is providing meals for us this week. We are a little disorganized at this point and trying to get a grip on having our house and or family back together for the first time in 2 1/2 months. Up until Sunday, we have had someone staying with us to help with Riley since October 16th. We have been coming and going so much that we have not had a chance to declutter or clean the areas under the clutter. Sherry is working on getting the house back in order. I am working from home as well as showing my face more at work this week and next week. I plan to be back to a normal work schedule within the next two weeks.

Our New Year is starting of just about as good as we could have ever imagined. We are truly blessed to have our family under one roof. Thanks again for all of the prayers and support.

I believe the new pictures above tell the story pretty well. Yes, Caden is sleeping in his own room at home tonight for the first time. We arrived home at approximately 6:00 PM New Years Day. Caden is doing really good. He seems comfortable and happy at home.

Riley has been sick for the past several days. Even so his first words to Caden were, “sit down, play train please.” I would say that Riley is really excited that Caden is home. It is really tough right now because we need to keep Riley out of Caden’s face since Riley is still coughing a bunch. Riley wants to be right up next to Caden and we have to minimize contact until Riley gets well. My Mom is enjoying seeing her two youngest grandchildren home together even though she is still fighting a nasty cold. She will head home Sunday and we will begin our first week as a family of four.

Caden was sent home with a feeding pump, suction machine, and apnea monitor. Believe it or not this stuff was all delivered and we got trained on it today. I started the day off by asking the doctors and nurses what they were doing with Caden that we could not do at home. Their answer from Caden’s nurse was, “ah ha, the big question.” Obviously our confidence played a big part in determining when Caden got discharged. Sherry and I discussed it last night and we felt that we were ready to ask that question. As you can see it paid off. Don’t get me wrong. We are scared silly. I have to just keep remembering my favorite verse 2 Timothy 1:7 – “For God hath not given us the spirit of fear, but of power, and of love, and of a sound mind.”

Your prayer will help too get through as it has already so many times. We are very thankful for the blessing that we have received today in getting Caden home. We are thankful that Sherry is finally getting some comfort from drying up her milk. We are thankful for the friends and family who do things for us. Sherry and I ask that God give us strength and confidence to deal with Caden’s needs as well as Riley’s and each other’s.

We hope that your New Year starts of a little happier as a result of this great news. May God bless you and your family as much as he has blessed ours this day.

Caden is doing good today. Caden is not doing good enough to go home today. The good news is that Caden will likely get to go home over the weekend. The early estimates for Caden to go home today were based on how most children respond to getting a G-tube. The estimates for Caden to be ready to go home by today did not factor in his tendency to take a little longer than normal to recover from anesthesia and surgery. Caden is still experiencing apnea spells. The doctors are considering sending an apnea monitor home with us for a month or so.

Happy New Year!!!

Caden is doing good. While Caden is doing good at the moment, we have gone through a rough couple of days since leaving the PCICU. Caden now has an upper respiratory infection. This causes even more secretions than normal. He is already on an antibiotic to treat the infection and that should clear up in a reasonable amount of time. The past two days have also involved some tests. Yesterday we took Caden to see the ear, nose, and throat (ENT) doctor. They ran a scope in to look at Caden’s vocal cords. They took some pictures and found that Caden has a little bit of damage or it may be a defect on one vocal cord. This causes him to have a little weak of a cry and it also causes him to have a harder time sealing the airway when swallowing. Today we took Caden down to get a modified barium swallow (MBS) test. This is a test were they give him some thick fluid from a bottle while he sits in front of an Xray machine that records a digital video of the fluid going down. Caden was not able to swallow properly. I believe that the term Disphagia is used to describe his condition. The muscles that are suppose to relax and allow stuff to travel down into the esophagus are not doing their job in sync with the swallowing process. The fluid, food, secretions, and saliva is never allowed to leave the throat and enter the esophagus. This causes Caden to collect these things in his throat and get gagged and he can even aspirate if the fluid is not suctioned out. All of this is linked in one way or the other to DiGeorge Syndrome. Caden does get a trickle of fluid down, but it is more by accident than on purpose right now. Those muscles do relax once in a while, but not when they need to with the swallowing process.

The next logical question that you must have as we did, “how is this swallowing condition treated?” There really is no cut and dry answer and their official answer for now is that a lot of research is being done on how to treat this on an infant. First we will have to wait up to three weeks in the hospital to get another MBS done. Another MBS will tell us if his swallowing abilities are improving. This may happen in less than three weeks, but there is some question as to how long to wait. Once the test is complete we will take one of two paths. We will begin to feed Caden by mouth if he shows that he can swallow. The other path is to get a feeding tube installed in his abdomen. This would actually be a little port on the outside of his tummy that we would have to hook a pump or syringe to in order to deliver food into Caden’s stomach. The last child to come through here with the same problem went home with the feeding tube. These tubes are usually required for several months or longer.

I have not left the hospital for more than three hours total in the past two days due to a concern for Caden’s care. I don’t mean to make it sound like the folks down here are not doing their job. They are doing an awesome job. There are kids lined up to get in here and unfortunately there are not enough nurses lined up to get in here. Caden requires a good bit of attention from someone with a suction tube to remove the secretions an other fluids from his throat so that he does not as a worse case scenario aspirate on them. The more usual outcome is that he will cough or sneeze them out onto his face, bed, or clothes. Then he is in just a yucky situation that takes a ton of his energy to get into in the first place. The energy is drained with all the struggling he does to get up a strong enough cough or sneeze to get the stuff out. In the PCICU, he was getting some pretty personalized attention. Hear on 7C he does not have a nurse sitting within a few feet of his bed at all times so they can not see when Caden is struggling with these secretions. Until today, no one really knew whether Caden was creating an obscene amount of secretions or if he was just not swallowing any of the normal secretions due to swallowing problems. The answer is sort of a combination. He does have an infection that is beginning to break up that adds to the normal secretions that collect and can not be swallowed due to his condition. Now, why have I spent so much time here? Well, I have had the overnight shift to sit with Caden to ensure that he does not use all of his reserve energy to get this stuff out on his own. Sherry came down yesterday and today in the morning to relieve me. We agreed on both days that I might need to hear the results on the tests since they are pretty big issues concerning how we will care for Caden in the near future.

There have been some changes in Caden’s care today. First we were relocated to a room closer to the nurse’s station. I am not sure exactly why, but it might be because when I did came back last night after being gone for three hours, I found Caden with a big gob of stuff on his face. I was so upset by the scene that I took a quick picture of him before cleaning him up. I had the digital camera in the bag that was on my shoulder. I told the 7C nurse practitioner (NP) today what happened last night and that I was so upset that took a picture if she did not believe me. I also told her that Sherry and I were planning on being here 24/7 for fear of finding those situations or worse again. Since that conversation and the swallow study we have moved to a room across from the nurses’ station and an order has been written to get Caden suctioned by a respiratory therapist, NP, or doctor as needed. The need is determined by us or his nurse. This only needs to be done a couple of times per 12-hour shift at the most right now. Sherry and I still do less intrusive suction passes ourselves when he coughs it up far enough to see. The secretions should slow down once the infection is gone. Then they will give him some medicine to help minimize the normal secretions. The only reason they are not using it now is that the medicine has a tendency to thicken the infectious secretions which are harder to clear out.

Riley visited once yesterday and twice today. He got to play in the atrium and visit with Caden. We all had dinner here tonight. Sherry and I are both staying tonight so that she can get a feel for the night shift. I am staying more to be with her than anything. Things are a little different at night since there are not doctors buzzing around and there tend to be less nurses on the unit. I believe they get as bad as a five-to-one patient to nurse ratio at times due to staffing.

I know that I write a bunch of information. This accomplishes several things. It helps get the facts out as we know them to those of you who care so much about us. It also provides a journal of sorts that Caden can use in his future testimony of what God brought him through as a child. The last thing that Sherry sees is that it has been somewhat therapeutic for me. I believe she is right. Writing these notes for you have given me a chance to sort out my feelings and present the information in a way that can give everyone a good idea of where their prayer needs to be focused. I have not always been as strong of a believer in God as I have become in recent months. I can not imagine going through all that we have been through in the past several weeks without God. I write a version of what we see and experience that includes a little cream and sugar. We have really joyous days as well as days when we struggle so hard with so many things. I want you to know that we are being blessed by help from so many people. Some things can be helped and there are a ton of wonderful people doing an incredible job of helping, but other things can only be helped through prayer and faith in God. I wish I could tell you all that is on my heart tonight, but I can not. I sit here with tears in my eyes as I try to sort out all of the things that I have had to deal with lately. An old friend told me the other day in an email that sometimes you just need to have a good cry in these types of situations. I think he was right. Today was a day when a cry seemed to help.

The two new pictures above tell today’s story. The first new one is a picture of me pushing Caden down the hall. The nurse is steering. That last one is a picture of Caden in his new room on 7C. Caden was transferred this afternoon. It took him a while to settle down from the ride across the hospital, but once he did settle down he got very comfortable.

I will be spending my nights with Caden for now. Sherry and I will switch off later to see how that works out. She is already up several times in the night to pump. She needs what sleep she can get with that task. We will have to see how the hospital sleeping arrangements are before she commits to very much time down here at night. I will stay and work from Caden’s room in the evenings and early mornings. Sherry will come down and spend the day with Caden after getting up and spending a little time with Riley. I will go home and catch up on any missed sleep from the night before and visit with Riley. We both still plan to be home in the evenings for dinner with Riley and to see him off to bed. I know it sounds busy but at least we have a plan.

Caden’s room has a private bath with shower, roll-away bed, couch, and chair. We also have access to a refrigerator, ice machine, microwave, and coffee pot. The Ronald McDonald Room, this is different from the House, has a full kitchen and place to sit down with family and eat. It has just opened and is only operational during certain hours due to low volunteer staffing right now. There is a big room down the hall from us called the Atrium. It is a huge play area for patients’ siblings and non-contagious patients. They have just about everything a kid could every ask for to play with in there. Riley has already used it a couple of times when visiting Caden in the past. Now it is just down the hall on the same floor of the same building we are in.

Well the nurse has just finished 12:00 vital signs and I am off to bed. I hope this news fills your day with happiness and joy.

Caden had a good day today. I only say that it was a “good” day because he did have to get an IV line so that he could receive a blood transfusion. I want to share some really exciting news before I get into the details of the blood transfusion. Caden may get to transfer out of the PCICU as early as tomorrow. One doctor said that Caden is looking so good that many of Caden’s doctors are comfortable with moving Caden to a regular room on 7C. The doctors will reevaluate Caden tomorrow to determine if they are going to transfer him. I will keep you posted.

Caden’s blood test results would have justified a transfusion a few days ago, but Caden did not have an IV line to deliver the blood into his body. His little body has not picked up the task of making red blood cells fast enough yet. Babies have a normal tendency to be anemic at about Caden’s age. Some of the red blood cells they get from Mommy start to die before the baby’s system is ready to generate new ones. This natural tendency for all babies plus the fact that Caden had a major open-heart surgery and he looses blood to these tests is what caused the need for this transfusion. His red blood cell count has been creeping down very slowing for several days just like that of a normal five-week old. The doctors hoped that the red blood cell count decline would stop before reaching a level that would justify them putting in an IV just to deliver the blood. So that is how and why Caden got an IV line today and a blood transfusion.

Caden had another great day. This may have been one of his best days yet. He is now being given some medicine to help dry up his secretions. He continues to cough and gather stuff from his lungs in the back of his throat. This causes him to gag a little at times. This is really his only problem right now. He is still getting formula through his feeding tube. He continues to sustain his strength without IV lines.

Sherry and I are doing pretty good. We are tired, but our spirits are high. Caden and Riley are both doing great. Riley talks about Caden regularly now. I believe Riley’s visits to see Caden have been very helpful for him to understand what is going on. Riley has been able to visit with Caden every weekend since Caden was born.

I added two more pictures to the “Week 5 PICs” page. Sherry took them earlier this evening. You can see for yourself how good Caden looks.

We are so grateful for your love and support. Keep praying for my Christmas wish to get Caden home.

Caden is still doing great. Sherry and I spent a good bit of time with Caden this afternoon and I went back down after dinner this evening. We both got to hold him for what added up to be hours between the two of us. Caden fell asleep on my shoulder today just like Riley used to. It was so cool.

Now, I don’t want to get anyone too excited but, the surgeon hinted today that Caden just “MAYBE” will get a ticket out of the PCICU by the end of this week if he continues to keep his strength. He did say this with a lot of emphasis on the word “MAYBE”. This is the same doctor who has been the one painting the less than bright sun shiny pictures throughout the whole process so I see this as a big positive sign. We are trying our best to maintain composure, but we are very excited and hope that you are too. Remember that Caden will have to spend some time in a normal hospital room in the MUSC Children’s Hospital before he is ever released to come home. If he does make it out of the PCICU this week, then there is a pretty good chance that my Christmas wish will come true. My wish is to have Caden home by Christmas.

If you have ever doubted whether God answers prayers, then you have got to meet Caden. He is capturing the hearts of so many people. He is already lighting up the room when he opens his eyes. I can’t wait to see what God has in store for this little boy and me for that matter. This past several weeks of my life have definitely changed how I look at things.

Caden is doing great. He continues to have good blood test results. He is looking and acting more like a one month old little boy every day. He will probably be left alone by the doctors until tomorrow. We are now allowed to walk in and pick up Caden without a nurse assisting us. That seems like such a little thing but it is a big deal to us. Caden only has a feeding tube running into his nose. The other things attached to him are sensors attached using tape and his blood pressure cuff.

I have posted some new pictures that were taken yesterday. Enjoy.

Thank you again for your concern and love for our family. May God Bless You and Yours!!!