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