Sunday, November 29, 2009
Saturday, November 28, 2009
Friday, November 27, 2009
Thursday, November 26, 2009
Sunday, November 22, 2009
Things have gone south since I last wrote. On Friday or so, Dear Son began running a fever. He ran a fever for over 24 hours and yet they were unable to determine the source of the fever. They did some blood tests and a blood culture however no bacteria grew so the good news, if any, was that we didn't have a bacterial pneumonia. They did however start an antibiotic for 48 hours to cover it.
Ped Neuro Doc felt however that based on his conversations with these physicians it was something that needed to be done. I reluctantly agreed to let them do it however I did not feel great about that decision.
Late last night, they began deep suctioning. I didn't watch the first one but remained in the room. During the second deep suctioning, just two hours later, I stood up to see and was horrified at the amount of blood that was suctioned. In addition, Dear Son bled for an hour later and some 90 minutes later, this is what his face looked like. I requested to speak with Attending Doc but got on a Fellow. I stopped the deep suctioning. Dear Son looked like a boxer had smashed him in the face. I felt good about stopping that.
Right before I left the room today, I asked the nurse to give me a minute or two to say good-bye to Dear Son. He left the room and I kissed Dear Son and told him I loved him. I told him that I was sorry I had to leave but that I didn't agree with them putting the tube up his nose and that they think it will make him better. I said his Daddy will be here with him. As I turned around I saw the door to our room was left open and the nurse was standing right outside the door. I was really angry. I have sat in that room for three weeks now with tight infection control procedures and the door was never allowed to be open for more than a few seconds to go in/out and here this nurse couldn't have the courtesy to give me a few private moments with my son. Outrageous.
I left the hospital today and was beside myself. I have spent the last eighteen years taking good care of Dear Son and looking out for him. I never dreamed that as things get down to the wire that I couldn't be there. I just can't stomach the fact that he can be hurting. Being your child's best advocate isn't always pretty and it can be uncomfortable at times but you have to do it.
After I left, I called Dad several times to see how things were going. After Ped Neuro's Doc pleas to me for deep suctioning, not once in the last ten hours have they asked about deep suctioning Dear Son.
This has really been a nasty hospitalization. I doubt we will ever come here again should he survive this. The conditions here have also made it challenging. The room is extremely hot at night, freezing in the morning, there is no air circulation and it's noisy. The pressurized bed is loud and blows dust around the room. With the infection control procedures, I am not allowed to go anywhere but the bathroom. So I can't buy any meals in the cafeteria or restaurant nor can I use the microwave or even heat up a cup of water for a cup of tea. It's like being in an airplane for three weeks. If that weren't enough, the public bathroom and shower are about a quarter of a mile down the hall. There are only two public bathrooms on the ICU floor and when you try to take a shower, people knock on the door for you to hurry up. I am not showering very much.
I guess I am also a bit angry. We were scheduled to get the swine flu vaccine and they ran out. Had Dear Son had the vaccine, the Section Chief of Infectious Diseases said he'd most likely be home with a cold and not here. It's really hard when I worked so hard to get him that vaccine (I was able to get the seasonal and pneumonia vaccine though.) and then to have this type of hospitalization. Missing the Make a Wish trip just bothers me to no end-I so wanted to see him happy. We went from planning the best birthday ever to him having the worst birthday ever and being on a ventilator. You wonder sometimes in the big scheme of things, why the hospitalization couldn't have happened after the trip. This is our 60th hospitalization. People have fun every day and you wonder sometimes why it couldn't happen for Dear Son.
In addition, my sister's birthday is tomorrow. She died from colon cancer on March 1st of this year. My mother had colon cancer and was cancer free for six years and now they think it's back. My aunt died from her second bout of colon cancer two years ago. As a result, my mother's physician wants all of us siblings to go for genetic testing. I told my mother that I wasn't interested since I have enough on my plate right now.
At this point, I just want to bring my son home. If there is nothing more they can do, then I'd like to take him home and love and care for him until it's time.
Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a mutation of the ARX gene. He also suffers from a progressive neurological disease.
Thursday, November 19, 2009
- Weaning him off of the pain medication.
- Continuing pulmonary toileting to clear his airways and lungs.
- Treating the wounds.
- Continuing g-tube feeds very slowly.
- Continuing the non-rebreather at 12 liters of oxygen.
Overall, this has been a pretty rough hospitalization for him and for me. I was so terribly sick the first two weeks he was there and now am feeling a bit better. I was also terribly depressed thinking he was going to die and that I wasn't going to see his eyes and smile again. I worry that with all of the pneumonias he has had, that one of these times, he won't make it. The good news is that I have really good doctors taking care of him. Ped Neuro Doc in particular has really done a nice job and is always really optimistic. It really helps when we are here that he takes the time to see Dear Son even when we don't have a seizure issue. It makes a big difference during times like this.
I probably won't post again until Sunday but do appreciate all of your thoughts and prayers. I just came home tonight for two hours to pick up some things and then I need to get back to the hospital by midnight to give him his seizure medications.
Monday, November 16, 2009
Thursday, November 12, 2009
Tuesday, November 10, 2009
- Q-Is it true that it takes two weeks for the swine flu vaccine to be effective? A-He said it probably never gets to the point where it's really 100% effective. Typically what a vaccine does is to make the flu milder.
- Q-Will he get the vaccine before he leaves the hospital. A-No.
- Q-Now that Dear Son had the swine flu, can he get it again this season? A-No.
- Q-At Dad's place of employment, once they heard Dear Son had the swine flu, they sent the Haz Mat team (complete with mask and gear) in to clean his desk. Is this an appropriate level of concern? (I should tell you that I couldn't stop laughing when I heard they did this.) A-No. People are overreacting to the swine flu.
- Q-At Dear Son's school, they offered to come in and clean the classroom after hearing that Dear Son had the swine flu. Is that necessary? (Normally, the classroom is kept extremely clean as the staff is quite diligent about hand washing and sanitizing with the four students in Dear Son's class.) A-No. Normal cleaning is fine.
- Q-Any deaths at Big Academic Center from the swine flu. A-No.
- Q-Is the swine flu seven days? A-Any flu is 7-10 days.
- Q-If Dear Son got the swine flu vaccine, would he be on a ventilator? A-No. If he got the vaccine, he most likely would be at home with a cold (milder version of the swine flu) instead of on a ventilator. *Note: Dear Son was scheduled to get the swine flu vaccine at Big Academic Medical Center and they ran out. This was 6 days prior to him getting the swine flu.
- Q-Does Big Academic Medical Center have a website where I can get more information on the swine flu. A-Check out http://www.cdc.gov/ for information.
Late last night, around ten p.m. Dad called me regarding Dear Son. His central line was leaking blood so they gave him something to break up the blood clot but it didn't work. They decided to use another port and will make a decision today as to whether they will replace that line.
Thank you for your continued prayers for Dear Son. Today is probably the last day I will be able to post for a while. Dad came down last night so I could go home and sleep since I have to work today. If you'd like to read all of my posts related to the swine flu, click here.
Sunday, November 08, 2009
The good news:
- Dear Son is off the norepinephrine (blood pressure medication). This is a huge deal according to the Attending Doc.
- He is running fewer fevers.
- They started him on g-tube feeds at a rate of 5 cc per hour and as of today, increased him to 15 cc per hour. The added nutrition will help make him stronger and help him recover.
- Blood gases are done every six hours, as opposed to every two hours.
The not so good news:
- He still requires a lot of help from the ventilator. I had hoped that perhaps he'd be vented another day or so however they told me it would be another week or so. Even if the settings are decreased, there are still a lot of other things he needs to do before they can take him off of the ventilator. He needs to get stronger, be able to breathe on his own, etc.
- The chest x-ray still looks pretty bad. His entire right lung is filled with fluid and the lower part of the left lung. His left lung looks worse than yesterday.
- He remains unconscious. He is retaining some fluid and his eyes are swollen shut. He left eye is so swollen you can barely see his eyelashes.
- He had a pretty big seizure yesterday afternoon around 3 p.m.
- His potassium is low.
I spoke with Dear Son's doctor at length yesterday to get a better understanding of the intense concern over the swine flu. I had thought that the MRSA pneumonia would be worse than the swine flu since it is a bacterial infection that is hard to treat however the swine flu is proving to be a bigger challenge. He spoke to our ICU Director and she relayed a story of a Texas hospital where all of their swine flu ICU patients died. While the swine flu is more prevalent in the western suburbs where I live, he does feel good that Dear Son is off of the norepinephrine. He also has great confidence in the ICU team here at Big Academic Medical Center. He said in the last ten years, he thinks this ICU team is the best he has seen anywhere. They are especially good with respiratory issues.
At Big Academic Medical Center, they have a strict Isolation Policy Guidelines. You can either wear a gown/mask and gloves at all times when you are in the room with a patient with the swine flu or you can choose not to wear any of it. If you wear the gown/mask and gloves, you can remove them when you leave the room and go anywhere in the hospital, which includes the restaurants, laundry room, family vending area (with microwaves). If you are a parent and choose to "room in", meaning stay with your child, you can forgo the gear however you are not allowed to go anywhere except the bathroom. Since I stay with Dear Son 24/7, I am not leaving the room to go anywhere except the bathoom. The gloves, mask and gown are very hot and I can't wear that 24/7 without sweating to death. The room door must also be closed at all times. I caught a cold and lost my voice from the vent in the room since it blows air on me when I sleep. On the flip side, it's really uncomfortable in there since there isn't any air circulation with the room closed all the time. I totally understand the precautions however it's making it challenging in terms of food. I have to bring my own food and can not use the microwave or anything else anywhere.
Dad took vacation days to visit Dear Son this week at the hospital. When they heard Dear Son had the swine flu, they sent in a Hazardous Materials team in to clean his desk. I asked the docs if this concern was appropriate and from the swine flu cases they are seeing, this is appropriate.
In summary, Dear Son remains hospitalized in the Pediatric Intensive Care Unit at Big Academic Medical Center with the swine flu, a viral pneumonia and MRSA. His ventilator settings are 45% oxygen, 10 PEEPS and 24 Ppeak. He is on Benadryl (to prevent Red Man Syndrome from the Vancomycin), Vancomycin, Zosyn, Fentanyl (for pain), Tamiflu and potassium. He gets daily chest x-rays, chest pt and nebulizer treatments every four hours and blood gases every six hours. He has a central line, an arterial line and a foley for urine.
I was really down and out yesterday with regards to Dear Son. I need your continued prayers to help him get well. I really need to see Dear Son open his eyes again and to see him smile. I remember back in 2006, when he had the MRSA pneumonia and I was hoping for more time to see him grow up. Now that I've seen him all grown up, I want more. I want more time with him. I want to see him laugh again and go to Florida for his Make a Wish trip. In reality, it will take him quite some time to recover.
I do have confidence in the ICU team and and fortunate to have such good doctors. Ped Neuro Doc has just been outstanding. He takes such good care of Dear Son. Whenever he's been hospitalized, he always comes to see him even if he's not the attending that week. This alone has been really helpful. When you are in these types of situations, it really helps to have someone that knows Dear Son so well and is able to give me real answers in terms of his recovery. I've been in a few situations with Dear Son at Big Academic Medical Center where I thought that the only hope I had was a miracle and Dear Son pulled through.
Please continue to pray for Dear Son. If you have any prayer groups, that would be great as well. I have always believed that in addition to having a good medical team that the power of prayer makes such a difference for Dear Son. Thank you for all of your wonderful comments, thoughts and prayers. While I am unable to write any posts at the hospital, I can read your comments on the big screen t.v. in the room. Your comments have given me strength to help me get through this with Dear Son.
To read all swine flu/pneumonia updates for Dear Son, click here.
Note: Dear Son is seventeen and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease. You can read more about him in the Journal of Neurology. The link is in my sidebar.
Friday, November 06, 2009
Tuesday, November 03, 2009
On Saturday evening, Dad picked up Dear Son around 7:30 to take him overnight. He works 12 hour days so that is when he picks him up. Around 10 p.m. Dear Son broke out in a fever (he had been totally fine all day Saturday) so he called me and said that he had a fever. He said he was going to give him some Tylenol and I told him to watch the fever since Dear Son can deteriorate fast meaning his breathing can get very labored. I asked him to call me at midnight when Dear Son gets his meds if things get worse. I talked to Dad the next morning and Dear Son still had the fever so I told him to give him the "adult" dose of Tylenol. (Dad had given 500 mg. and the bottle said you could give up to 1000 mg. which he did.) Dad had difficulty controlling the fever with Tylenol and around 3:30 in the afternoon he called me and said that it was too early to give more Tylenol but the fever wasn't going down. He was bringing him back home to my house.
By 6 p.m. I had arrived home and Dear Son still had a fever. His breathing wasn't great but it wasn't terribly hard yet. His fever was around 101.4, I really don't remember right now but I knew he had to be seen to figure out the source of the fever. Dad wanted to take him to a local ER but I wanted to take him to Big Academic Medical Center since I knew if things headed south, they could treat it and it would save a trip from the local ER transferring him to Big Academic Medical Center. I paged his pediatric neurologist (who functions like our pediatrician) and he said to take him to the ER immediately.
We arrived at the ER and they took his history. Some time later (I don't have a lot of time right now so I'll try to give you the abridged version.) the Supervisor of the Physicians (that's how he referred to himself) came in and checked him out. He said the physical exam shows sepsis and they are treating him as such until they have more information (they took blood work). He asked if I wanted to donate Dear Son's organs (I said no.) and asked me if thing proceeded what decisions have I made (meaning do I want a Do Not Resusitate) and I said that no, I could never do that. The ICU doc came down and assessed him and they asked me the same questions. How depressing...
Around 2 a.m they transferred him to the ICU. The fever continued to go up and they couldn't get control of it. They put him on an In-rebreather at 12 liters of oxygen and had started him on Vancomycin and Zosyn. Neither appeared to be working. Dear Son has an allergic reaction of sorts to Vanco-he gets Red Man Syndrome. It's not a "true" allergic reaction but it means they have to run the Vanco very slow and give him Benadryl which they did. Of course, being the Dream Mom Super Organizer that I am, I have his allergies or reactions to Vancomycin and Zofran documented on his Emergency Information Sheet.
In desperation yesterday (my words), the ICU Attending told me that she contacted Infectious Diseases. She said that they may have to vent Dear Son but she wanted them to come and look at him to see if they were missing anything. She said that they can't get control of his fever. They had been giving him Tylenol and Motrin to get it down and it wasn't working. (As an FYI, I had taken Dear Son on 10/26/09 and gotten his seasonal flu shot and pneumonia vaccine at Big Academic Medical Center but couldn't get the swine flu injectable vaccine because they ran out.) They had previously contacted Dear Son's Pulmonary Doc (She's the Head of Pediatric Pumonary.) there and informed her what was going on and had gotten instructions for the chest pt vest and nebulizer schedule. They had been giving Dear Son nebulizer treatments as soon as we got to the ER so this was just a more schedule. As Dear Son deteriorated, they called her again to see if she could come see him right away. The ICU doc said that they were going to turn the In-rebreather up to the maximum setting to help Dear Son. By now he was on 18 liters of oxygen which is the maximum for that (Some places the max is 15 liters from what I understand but here it's 18 liters.).
Eventually, the Big Wig at Infectious Diseases thinks he's figured it all out. He's really nice and it's a good conversation. He thinks it's a viral pneumonia and they put Dear Son on the Bi-Pap machine at 100%. Dear Son does better and we are all happy. Once he gets some rest from breathing too hard, they'll try to reduce it to 60% over time. His fever begins to come down and we are now one happy family.
During the day, Dear Son had been crying out repeatedly, which was stressing me out and I couldn't figure out what was wrong. I asked if there was something for pain for him but eventually, when I saw his fingers moving, I figured out it was seizures (fevers can raise the seizure threshold) and I used his VNS magnet and they stopped. He didn't cry anymore and things were good.
I left the hospital last night after Dad arrived to get some sleep at home. I have to work today and then I would come after work and be there the rest of the week.
That was yesterday. I had a good night's sleep and Dear Son appeared to be on the mend.
In the last hour, things have dramatically changed. His fever began to spike in the morning and his breathing deteriorated. I just got a call that they had to put him on a ventilator asap and put a central line in. Things are not looking good.
I need to cancel work and get back down there. I don't know when I can update you again. Please pray for Dear Son. I don't know if this post makes sense or if I included everything but I don't have time to proof it right now.
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