Hospitalization and Discharge

Well, Friday (October 16) was Daddy’s turn at the hospital. When I arrived Carey was pretty sore from the hospital chair and Caden was up and moving around. Carey headed out to the airport to pick up her sisters and Caden and I settled in. He played for a short time and then calmed down and surprisingly went to sleep. This allowed dad to start catching up on some work.

Carey returned about an hour an a half later with her sisters so they could see Caden. He had just been woken up so he could get his breathing treatment.

The rest of the day we got to play nurse basket upset. Caden ended up getting a new nurse every four hours, which meant I had to orientate them to Caden’s needs. Of course they all have their own preferences about how much the parents can help. It is really a little awkward since we have been providing all his care for the past six months and then we get told not to touch things. Of course I have to laugh when that is followed up with asking what needs to be done. Anyway, I ended up commenting on the constant change of nurses and I was told that due to flu season the hospital has implemented a policy that requires workers to stay home for seven days once they get sick even if they are feeling better. Hence nurses having to float around to cover. As flu season continues this may present an access problem, because this will exacerbate the healthcare worker shortage problem.

Around 5 p.m. I finally got to speak with the doctor. I asked him if we would be in the hospital all weekend, which is what I expected, but he said that as long as Caden had a good night and met certain metrics he could be released Saturday. I thought this was great news.

After an uncomfortable night in the hospital I got up and went out to the nurses’ station and to my surprise the doctor was there. Since Caden had a good night I asked him when he was planning to round so he could assess him and hopefully get discharged. He indicated he would see us in a couple minutes. That was about 7:45 a.m. When the nurse came in to give him his steroid medicine I asked her to wait until I had a chance to speak with the doctor. The steroid really winds him up and I wanted to find out more about it before he had another dose. The day wore on and no doctor. I finally asked the nurse when the doctor was coming in and she told me that a different doctor was now taking care of Caden and she would be in shortly. Changing doctors is rarely a good thing because it always takes each one a while to figure Caden out and get comfortable with him.

The doctor showed up just before 1 p.m. and I started off talking to her about discharge. She said she would not be comfortable discharging Caden until after he had been off oxygen for 24 hours and was doing well. I challenged her on this since the other doctor had indicated we could go home as long as Caden had a good night. At this point I really felt like Caden was doing better and keeping him in the hospital did not make sense because of the extra germ exposure and the lack of sleep. I believed the next step in the healing process for him was to get some good sleep, which he was not getting in the hospital. Of course the doctor was worried about possible re-admission. I understand this concern, however at this point we had a treatment plan, Caden was doing well, and the treatments he was getting in the hospital we were already set up for and doing at home. After laying the whole case out to the doctor I got her to agree to discharge us at 9 p.m. as long as he continued to do well.

Shortly after the doctor left Caden went to sleep. While this was a good thing, it was poor timing because my mom, who was in the bay area for her 60th birthday came over to visit with her four sisters, Kyler, and Natalie. We all enjoyed watching Caden as he slept, but it was not too long before his little cat nap was over and he woke up to a room full of guests. Of course since most of these people had never met Caden before it was picture time. With hands washed and cameras ready we began snapping photos. After about an hour and a half the fun was over and it was time for them to head back to the bay to get ready for their birthday dinner celebration. Originally Caden and I were planning to be there, but his little episode prevented that.

The rest of the afternoon was pretty quiet and by about 4 p.m. Caden and I were exhausted. He fell asleep and I pulled out the chair bed and was right behind him. We both slept for about 2 hours. I woke up occasionally with various noises and would always look up to check Caden’s oxygen saturation and vitals. Normally the oxygen saturation will drop off with sleep and so this was going to be a critical test for the doctor in determining whether we would get discharged. His saturation always looked good when I check and later when I talked to the nurse about it she indicated that they never dropped once the whole time we were asleep. She said he looked great and we were ready to go home. It was only 6:30 by this point and I was excited. However, my balloon was quickly deflated when I was reminded that the doctor had strict discharge instructions that said we could not leave prior to 9 p.m. The doctor came in shortly after that and I thought we might get to go early. No such luck, she stuck to her guns and would not let us out a minute early.

Fortunately the nurse who came on night shift was briefed on our status and she worked to get everything ready prior to 9 p.m. so that as soon as it was time we could walk out the door. I got everything packed up and then I went down to the car to get the stroller so I would only have to make one trip out. Caden seemed excited to get in some real clothes and we headed home right at 9 p.m.

Of course coming home was no real picnic because I now had to assume all the care. I started thawing milk right when we got home and then I drew up a bath for dirty little Caden. He was so happy to get in the water and get clean. He really likes his baths. Once he was all scrubbed down I dried him off, got him dressed, gave him a breathing treatment and put him to bed. He went to sleep almost immediately. I kept working getting things cleaned up and put away and finally got to bed myself around midnight.

I set an alarm for 4:45 a.m. which was his first scheduled breathing treatment. That point came all too quickly, but when I got up and observed him he sounded and looked so good I decided not to disturb him. About 6:30 I got up to check on him again and he sounded ready for a treatment. I got him up, changed his diaper and then started the treatment. He stayed awake for about 60 seconds and then he was out. It took me another 20 minutes finish the treatment and put him back in bed, but he never woke up. I went back to bed and amazingly got another couple hours sleep. I rarely am able to sleep in past 7:30 a.m. Caden continued sleeping until 11 a.m. The poor little trooper was tired. The sleep did him well though as he woke up happy and visibly better. Even though I had to push the doctor I believe coming home was the best thing for Caden. He obviously needed his rest.

So that was the end of our adventure. Caden is back to 100% for him. The doctors want us to keep him home throughout the winter to minimize germ exposure. Starting November we will keep him home except for doctor appointments. We are now set up at home with oxygen, pulse-oximeter, portable suction and breathing treatments so we are hoping to keep him out of the hospital even if he does get a virus.

Quick Update

Greg is trying to write an update for the blog with more details of what happened after I left off on the last entry. But he's been really busy. So, this update is to let you know that Caden was discharged from the hospital on Saturday night (October 17). He has been home since and is doing well. I promise we will post more details later. Thank you for your continued prayers. We are so glad to have him home!

Hospitalization

This is a little overdue since we've been in the hospital for a couple days now but it's been kind of crazy. Let me see if I can recount the series of events that took place prior to us ending up in the PICU at Sutter Memorial Hospital in Sacramento. (Sorry in advance for the VERY long post!)

Greg and I and the kids were on a little vacation in Tahoe this week. We were scheduled to be in a vacation rental from Sunday until Friday morning. We got there in the evening on Sunday and got settled in the four-bedroom chalet. We were keeping a close eye on Caden as we wanted to make sure his respiration rate didn't get too high. He breathed a little bit faster on Sunday evening and through the night. But by Monday morning, he was doing fine and was back to his normal. He had a great day Monday and Monday night and was very comfortable. However Tuesday we noticed he was struggling more and more to breathe. As the day went on I became more concerned about how he was doing. I had forgotten a thermometer so I sent Greg out in the middle of a huge storm to buy one. When I checked his temperature, it was normal. That made me feel better so I thought we could see how he did overnight. He ended up having a pretty hard night which led us to take him to the ER in Truckee on Wednesday morning to have him checked out.

When we arrived at the hospital at Tahoe Forest Hospital the triage nurse took him back right away and put him on the pulse-ox machine. His saturations were in the low 70's. Not good! So they immediately put him on oxygen and his sats came up right instantly. They also took a chest x-ray and felt that there wasn't anything remarkable in his lungs aside from his small right lung. They thought it was more environmental, being at 6000 feet elevation, that was causing his distress. He really was struggling very hard to breathe by then. So we decided to pack up and head down the mountain with the hopes tha when we got back down to lower elevation that he would start to breathe normally again.

When we got back down the hill, I dropped Greg and Kyler off at Greg's work to pick up his car that he left there and I drove Caden straight to his pediatrician's office, not even going home first. When he examined him, he was very concerned because Caden was wheezing, nostrils flaring and retracting in his chest with every breath, he was lethargic and completely drenched in sweat. He wasn't running a fever, so he thought he was just working so hard that his body was working up a sweat. Unfortunately he didn't have a pulse-ox machine so we couldn't check that. However, just by examining him and listening to him, he said we needed to go straight to Sutter Memorial for probable admission. He was hopeful it would only be overnight so they could put Caden on oxygen and help him get balanced out again.

I stopped by the house for a few minutes to get some things together to prepare for a night at the hospital and off we went. Since Greg was already scheduled to be off work this week, he was able to be home with Kyler and he could take him to/from preschool on Thursday.

When I got to the ER, I got Caden to the triage desk and told the nurse there he was in respiratory distress. He was with another patient at the time, but he yelled for another nurse to come out. She took one look at him, got a quick weight on him and put us immediately into a bed. It got a little crazy from there! There were several nurses hovering over him and the doctor trying to take a medical history. Since we hadn't had a chance to do any paperwork, the unit secretary was trying to get insurance info from me as well. Obviously Caden has a bit of a lengthy medical history and I was trying to give that over Caden's screaming. He was so upset about everyone pulling, poking, prodding him and he didn't stop screaming for quite some time. I think his subconscious is remembering his time in the hospital at Stanford and not liking it!

I tried to be the best advocate for Caden that I could be but I was left feeling very frustrated by the staff in the ER. I didn't feel they were actually “listening” to me. They heard my words but didn't give them much weight. They got him on oxygen which of course was good. But then the nurse was telling me they needed to draw some blood for labs and get an IV going. I asked her what labs they were going to do and she said they just needed to do basic blood panels because he was “very sick” in her words. I told her that I wanted the very best person to do it because he is a hard stick and I didn't want him being made a pincushion. She said she could do it. I told her I wasn't trying to offend her, but I really wanted the best person. Again she said she would be able to do it.

At this same time, respiratory therapy (RT) came in and went to give him a breathing treatment. I asked what it was and they said it was Albuterol. I asked them why they weren't using Xopenex because that is what his pulmonlogist had prescribed previously and that is what I thought he should be on instead. The ER doctor said to me that they were essentially the same thing but that Albuterol was cheaper than Xopenex so that is what they were going to use since it didn't make a difference. So RT started the treatment.

And, again at that same time, radiology came to take a chest x-ray (second time that day since he already had one in Truckee) so I had to step out of the room. The doctor came with me and was asking me lots of questions in the hallway. X-ray left and I wanted to get back in to Caden but it took me a few minutes. I heard him screaming even louder so I ran in there and there were two nurses holding him down looking for veins. I asked them how many times he'd been poked and they told me none yet. So the first nurse that told me she could get the line, poked him and was unable to draw any blood off it. She announces that it's somebody else's turn. Again I said, I don't want him poked repeatedly because he is a hard stick. Now the second nurse decides to take a turn. And, shockingly (okay, a little sarcasm here) she is unable to get it as well. At least they were able to use this line for an IV even though they couldn't draw blood off it.

Then they decide to call in IV Therapy. When she arrives she starts talking about how good she is at drawing blood on babies, etc. I told her also that he is a hard stick and that I really wanted her to look before attempting. She said no problem and went to looking. She said he had a great big vein in his arm and she would have no problem getting it. I cautioned her that people have had difficulty drawing off that vein before whether due to scar tissue, valves, who knows. But she was confident. Unfortunately I was correct and she was unable to get anything. So she tries again in his other arm, still with no success. So now he's been poked four times and still no blood drawn. I'm not a happy mommy and believe me, Caden is not a happy baby!

As a “last resort” they decide to call a nurse from special care nursery and see if she can get it since they work with the challenging babies all the time. She came down, said straight off that she wasn't going to try to use a needle and that she was just going to do a heel stick and get the blood that way. She did this successfully and got all the blood they needed. Caden wasn't exactly thrilled with her holding on to his foot and squeezing so much but at least she was successful and the poking stopped! I was just extremely frustrated that it took that long and that they didn't appear to be listening to me in the first place.

So, back to the breathing treatments... I noticed after Caden received the Albuterol, that I had asked him not to have in the first place, he was very jittery. He was trying to reach his hands up to grab a toy and both his hands were shaking really badly. I made a comment about it to the nurse and she said that was normal. Well, he never had any kind of reaction like that on Xopenex which I had asked them to use instead. So again I was really frustrated because they didn't listen to me and what I was telling them. That makes me crazy!

So, Caden finally settles down. He had nasal cannula oxygen, breathing treatments and steroids, has an IV, they got the blood they wanted and have left him alone. He is tired and is trying to sleep but is unable to because of all the noise and commotion in the ER. They have said they are going to admit him but there were no beds anywhere in the hospital so we need to wait. Every time he started to doze off, something else would happen to keep him awake. Poor baby!

The nurse took his temperature again and he had a fever of 101.3. This was new because he didn't have a fever the night before when I took it, he didn't have one at the ER in Truckee, or in our pediatrician's office. But he had one now... Caden managed to fall asleep after that and a couple minutes later the nurse comes back with a syringe full of Tylenol and is ready to squirt it in his mouth. I asked her what she was doing and she said she was just giving him Tylenol to bring the fever down. I told her he does not take ANYTHING by mouth! I can guarantee that if she had squirted that in his mouth, he would have choked, sputtered and spit out almost all of it. A little might have gone down but certainly not enough. I was so frustrated again because I had already told them he didn't take anything by mouth, ONLY through the g-tube. I just wish they would listen. The nurse acted so surprised by this news and she said, “I'm glad you were here to tell me. I'll have to go put that in his chart.” What??? It should have already been in his chart since I had told them already. Oh well!

So, a few minutes after that she said they were ready to move us up to the PICU on the 6th floor so off we go. Caden might have gotten a 10-minute cat nap in.

Now I have to say that getting to the PICU was a welcome change. When the nurses there took over, it was completely different. As they got him settled into his room, they were doing their own medical history and asking me questions. When I told them about his hypoplastic right lung, they were like, “Oh! We asked the nurse from ER about that and she didn't know what was wrong.” Excuse me?! What was she doing then if she didn't even know what Caden's primary medical issues are? Just made me glad to be out of the ER!

The intensivist working in PICU came in to examine Caden and ask me more questions. Upon his assessment, he said he expected us to be here several days. He didn't think that Caden's respiratory issues were due to elevation but that he has a virus or bacterial infection. The nurses took nasal swabs Wednesday night to test for RSV, Adenovirus, Influenza A, Influenza B, and one other kind of Influenza (but not H1N1). Also, the doctor wanted Caden to have another breathing treatment and I told him I didn't want him to have any more Albuterol because he was shaking so badly after receiving it. I explained to him that our pulmonlogist had put him specifically on Xopenex and if we were going to use one, I wanted that one. He agreed and said they would do that. He also added that for “most people” there is no difference between the two. But in some cases, a patient will get jittery. At any rate, at least he listened to me.

By the time the doctor and the nurses had all the information they needed and RT had done another treatment, it was well after midnight. So much for even attempting to get any sleep! RT was ordered to do treatments every two hours (it's been changed to every three hours now) and the nurses were in here nonstop as well. I honestly didn't feel like I got any sleep at all and before I knew it, it was morning.

On Thursday, we had a nurse who was a float from special cary nursery. She was nice enough, but didn't know where anything was. Not really her fault but it kind of made her seem dingy. She came in just after 9 am to “give him his medication.” I asked her what it was and she said it was his antibiotic. I told her I didn't know he was getting an antibiotic and I wanted to know what it was for. She said she didn't know but she thought maybe it was for pnemonia. And she said that wasn't his first dose, that the night nurse had given him one already! News to me. She must have done it during the two minutes I actually slept. I was really frustrated at this point because I want to know PRIOR to them giving him anything. I want to know what he is getting and why. I really don't feel that is unreasonable. I am his mother and I am spending the night with him at the hospital for a reason. I want to be involved in his medical care and treatment. I told her I didn't want Caden to get the antibiotic until I talked to the doctor. So she had him paged. I am not saying that he shouldn't have the medication, but I just want to know and understand why they are giving it to him before they administer it.

The doctor came in awhile later and I was able to talk to him about the antibiotic. He said that because they really didn't know what was going on with Caden, they thought it was very possible he had some form of pnemonia and they wanted to cover their bases. They were waiting on the results from the nasal swabs they had done for the viruses. If those came back and tested positive for any of the viruses, then they would stop the antibiotics. However, if it was negative for the viruses, they would probably leave him on them.

I asked him about the elevation and if that had anything to do with this situation. He really didn't think it was connected at all and that it was just coincidence. He said our pulmonlogist had come in that morning as well to do an assessment and they were on the same page in regards to medications. I had no idea the pulmonlogist had been in. Again, that must have happened in the two minutes I slept because I was very tired and for the time I slept, I slept hard.

One of my friends came and spent several hours with me and brought me food! Thank you so much, Sharon, for taking the time out of your busy schedule to do that! I didn't want to leave Caden alone, but while she was there, I was able to go outside and get some fresh air and sunshine. That really helped my mood. I don't do well on little sleep and lots of stress. But getting outside really helped me feel better.

While I was out there, I saw Dr. Reddy walk out of the hospital and get into a car. Dr. Reddy is the surgeon who did Caden's surgery at Stanford. He comes over on Thursdays to assist in heart surgeries at Sutter Memorial. I called his name and he got out of the car and came to talk to me for a few minutes. He recognized me, but of course, couldn't remember my name. I told him my name and Caden's name and then he remembered. He asked how Caden was doing and I told him he had just gotten admitted to the PICU for respiratory issues. He said it was glad it wasn't the heart. Then he asked if Teimour had seen us yet. I told him not yet. He said he would call Teimour and tell him we were there so he could stop by. Anyway, it was kind of funny bumping into Dr. Reddy like that. The timing couldn't have been planned better since I was only outside for about five minutes before he came out.

Then, I was walking down the hall in the PICU and I saw Dr. Lorry Frankel. He is one of the attending physicians in the CVICU at Stanford and we knew him while we were there as well. So I stopped him and said hello. He also recognized me but couldn't remember my name. I guess that's a good thing. It means we've been gone long enough (7 months) that we're not in his memory anymore. I think that's a good thing. I guess he comes over here periodically to work as a liaison between the hospitals. As I was talking to him, Teimour came by and asked how Caden was doing. He had just finished surgery and had a post-op patient to tend to, so I didn't get a chance to talk to him for very long. But he said he would try to come by later. Anyway, it was kind of bizarre because I almost felt like I was back at Stanford today with seeing three of the docs from there!

The intensivist here had gotten ahold of Dr. Van Gundy and told him that Caden was here and what was going on. Dr. Van Gundy ordered an echo just to check the function of the heart but especially wanting to look at the pulmonary pressures. When the woman from cardiology came to do it, Caden was less than impressed about the situation! He screamed during almost the whole thing! Luckily she was able to get some pressure measurements and readings prior to him screaming, so that was good. Otherwise they wouldn't have gotten what they needed. As soon as she left I picked him up and he calmed right down. I think he's just sick of people bothering him. The tech told me that from what she could tell “unofficially” that his pressures were slightly elevated but nothing too extreme and not as much as might be expected considering the circumstances. So that is good news. I haven't received the official report on that yet.

Shortly after the echo, one of the pastors from my church came to visit. It was really great of him to stop by for awhile and visit. Thank you, Greg. We really appreciate your support and caring! We are part of such a wonderful church and are blessed to have such wonderful support!

Then one of the moms from Hearts of Hope came by to bring me some dinner. Thank you so much, Valerie! You are so thoughtful and I really appreciate it! It was nice to visit with you briefly also.

Last night, Greg's parents got into town and picked Kyler up. They took him with them to Greg's sister's house in the East Bay area for the weekend. That way we can concentrate on Caden and what he needs. Come Monday if Caden is still in the hospital, we might need some childcare for Kyler though. Kyler was happy to say “Hi” to Caden and then he wanted to leave to go to “Manny's” house. That is what he calls Greg's sister. So, Greg's parents didn't stay too long before taking off with Kyler. Thank you for doing that for us, it is nice to know he's in good hands.

During the late morning on Thursday, the RT decided to try to wean Caden's oxygen down from one liter down to ¾ liter. After about half an hour, he started de-saturating. He was in a really deep sleep during that time and the RT thought that contributed to it, but we had to bump it back up. Then, he tried again to move it down later. This time he changed it to ½ liter. While Caden was awake he handled it well, but after awhile he fell asleep. As soon as he got into a deep sleep, he started de-saturating again. So the RT moved it back to one liter. They'll try again today, I'm sure.

It seems like when he is sleeping, he is having trouble oxygenating because last night the nurse ended up moving him up to 1 ¼ liter because before midnight his sats kept dropping in his sleep. Once she made that change he did fine the rest of the night. In addition, he had been having a lot of trouble settling down with breathing treatments and steroids. So I had the nurse give him some Tylenol before bed. That really seemed to make a huge difference. He fell asleep just before 11 last night and actually slept until 8:30. That's the most sleep he's had in a couple days! Yay! That means his body can actually work on healing itself. I managed to sleep about five hours last night amongst everything else going on. But it was more than I got the night before so I'm happy!

Still no results from the virus swabs and no other news besides that. We just wait. Hopefully later today we will get more information. Greg is going to be taking his turn at the hospital with Caden. My sisters are flying in around 10:30 this morning. We had already planned a sister's weekend in Tahoe prior to any of this happening. Since I still have some things up there in the rental I need to go back up at some point. And it will hopefully give me a little break so I am more refreshed when I return to the hospital. I'll try to keep you all posted. In the meantime, please continue to pray for Caden: for his wheezing to lessen, for his lungs to be clear, for him to not have a virus, and for him to be able to be weaned off the oxygen, and for us to be able to go home SOON!

Playing with his mask before they start trying to poke him

RT giving a breathing treatment while the nurse and the gal from IV Therapy try to draw blood

Finally calmed down after all the harassment and now on nasal cannula

Ready to go to sleep in our room in PICU

Sharon Cox visiting

Pastor Greg Webster visiting

Feeling well enough to sit up and play

Sacked out! Moments later I had to wake him up because his sats kept dropping :(

Kyler saying "Hi"

Grandma Mary visiting

Helping the RT give his breathing treatment

Pumpkin Patch Field Trip

On Thursday, October 8, I got to enjoy another fun day with Kyler's preschool class: a field trip to the pumpkin patch. My mom and Caden came along as well. It was so much fun! We met the rest of the class and teachers there at 9:30 and listened to someone tell about the pumpkins and the farm there. Then we went on a hay ride followed by feeding the goats and checking out all the animals. Then it was on to the corn maze, hay bales and slides. Then we got to pick out pumpkins and then have snack. Kyler did so well and loved it! Caden spent most of the time in the stroller but he did great also.

I was also able to make a connection with a couple of the moms there. One of them is friends with a mom in Hearts of Hope and has a good idea of what it means to have a child with a congenital heart defect (CHD). And, the other mom has a CHD herself and had open heart surgery at the age of 2 ½. She also has a 6-month-old with a CDH. It made me feel instantly more comfortable with them. What a blessing. I'm telling you, God puts the right people in your lives just when you need them!

It's things like field trips that make me so thankful to be a stay-at-home mom. I really don't want to miss out on these things. What wonderful memories we can make with our children and I look forward to many more! Enjoy the pictures of the day.

Helping in Kyler's Preschool Classroom

On Tuesday, October 6, I had the joy of helping in Kyler's preschool classroom. The teachers allow one parent per schoolday to help in the room and you are not allowed to help more than once/month because they want to give everybody an opportunity to help out. And we are not allowed to take siblings in with us. That makes perfect sense to me since they would be a distraction for both the mother and the other children. Thankfully my mom was here and was able to watch Caden at home for me while I went to the classroom with Kyler.

It was so much fun! When I got there, I got Kyler taken care of and then I got the snacks ready for snack-time and then moved around the room and helped out wherever I was needed. Helping kids wash their hands after art projects, hanging up wet art to dry, cleaning tables after crafts, cleaning up toys and washing dishes after snack. I also got to participate in circle time and sing songs with the class, watch the kids play on the playground and take part in story time.

I was a little concerned that Kyler might misbehave while I was there, but he was so sweet! I couldn't believe how well he listened and obeyed during school. I figure if he was acting any worse while I was there, he must do very well the rest of the time. I am so proud of him! He's such a big boy. I love being a stay-at-home mom so I can do these things with my child. He was so happy to have me there and keeps asking me to come again. What a sweetheart!

Here are some pictures of our morning together.

Catching Up

So, it's been awhile since I've posted anything. I was without my computer for a couple weeks and that made it hard for me to write up any entries. So I have a bit of catching up to do. We've been pretty busy over the last couple weeks. Lots of doctors appointments and therapies as usual but some fun things in there as well.

First of all, Caden is fully recovered from his respiratory infection which is a good thing! It took him a couple weeks but the breathing treatments made a big difference. Also, his feeding therapist said she was shocked at how much he had changed in regards to his oral issues. He is not taking any food by mouth yet, but he is definitely getting more oral. He puts his hands to his mouth all the time and also puts toys in his mouth. Now to most of you, this sounds pretty normal, but to us, this is HUGE! Caden hasn't been doing any of this and he is finally doing it. He is tolerating things in his mouth much better than before. Unfortunately if we try to put a drop of milk on the toy he is putting in his mouth, he gets highly offended, examines the object trying to figure out what is wrong with it and ultimately ends up throwing it down in disgust. It's pretty funny to watch, although it is also frustrating as we so badly want him to eat by mouth.

We have an appointment scheduled with a pediatric GI doctor in Walnut Creek for a second opinion. I don't think I've mentioned this on the blog before, but Caden's current GI doctor is recommending that we change him from a g-tube to a j-tube. In fact she was ready to do it the week that she mentioned it to us. That was back in August. Greg and I did not want to jump on that too fast because we wanted to be able to do some research first. One of the downsides of having a j-tube is that he would have to be on continuous feedings. He would always have to be attached to the feeding pump. That just makes his life and ours a little more complicated. Don't get me wrong, we will do what we think is best for him, but we just want to gather all the facts first.

For those of you who don't know the difference between them, the g-tube goes straight into the stomach, but the j-tube goes into the jejunum, which is part of the small intestine, past the stomach. The reason she wants to do this is because of Caden's retching. Because of the Nissen at the top of his stomach, he is unable to throw up. However he retches/dry heaves a lot. It is awful to watch and very painful for him. It's so sad! When he does it he gets really wet sounding in his upper airway. This is concerning to both the GI doctor as well as the pulmonologist because they are worried that during the winter months, this will be a brewing ground for bacteria and infection. So... that's where we're at. Our appointment is on the 28th of October.

Caden's 6-month review for services with Alta was scheduled for November 5, however we are now trying to change it to the following week. He has surgery with a urologist scheduled for the 4th and I just don't want to be too stressed to focus clearly and get the appropriate services in place for the following 6 months to a year. It is outpatient surgery but I just want to be mentally prepared for the review meeting and not distracted by a fussy baby in pain.

I am also trying to sort out a few other things for Caden regarding his therapies. Since he qualified with enough of a delay in speech and language, they initially recommended having someone from SCOE (Sacramento County Office of Education) come out once a month and have a session with him. I really would like something more often than that. I just know how much it benefited Kyler and I want to make sure Caden has all the help he needs. So I talked to our nurse case manager about it and she thought he should receive speech therapy once a week and that I should advocate for that at our review meeting. Our infant development specialist said the same thing.

Then I went to a retreat this past weekend and attended a seminar on sensory integration by a speech pathologist who works for Alta. After listening to her, I realized how much help Caden needs in this area so I talked to her afterward. I told her all the therapies Caden currently receives and that we might be starting speech as well. She knows quite a bit about Caden because her husband works with Greg. She said we should absolutely get him evaluated by an OT who specializes in sensory integration and we should do it sooner than later because that is one of the things the state is looking at cutting back on.

Also, starting the beginning of November, Caden is supposed to start receiving Synagis shots once/month to help prevent RSV. We don't want him to get this virus because it could be very deadly for him. So, this is just one more thing to add to our list of appointments.

On September 29, Caden's g-tube came out during the night. I discovered it just before 5 am and it had been out for many hours because the hole was closed too tight for me to get a new one back in. And, Greg was just heading out the door to the airport for a business trip. I needed to take Caden to the doctor and didn't really want to have to wake Kyler up to go with me. So I called a dear friend to see if she was able to come over for a little while and stay with Kyler. It is a good friend that will answer the phone at 5 am and say they will be right over, that is for sure! Sharon, you are absolutely amazing! Thank you!

Luckily, when I got to the ER, the doctor came in right away and was able to dilate the hole open enough to get the g-tube back in. And, it was all done relatively quickly so I was able to get home before 7 am. Kyler hadn't woken up yet and didn't even know I had been gone. It felt like a pretty long day to me, but I survived it. And, I was just grateful to get the tube back in Caden so they didn't have to do surgery to place a new one. That is always the fear that I have.

Photos of Caden in the ER while we waited to get a new tube:





So, many things are still up in the air, but I feel like they are starting to take shape and hopefully by the middle of November everything will be in place that needs to be. I would really appreciate your prayers in this area so that Caden can receive all the therapies that he needs in order to catch up with his peers and thrive. And we ask for your prayers for wisdom as we try to decide how to proceed with Caden's feeding tube. The answers are not always clear and we have to make the best decision we can based on the information we have. We know your prayers have brought us this far and we continue to ask for more.