Saturday, March 14, 2009

Bumpy Week.....all three boys back in hospital

Zach

Close up of Zach.




On Wednesday, I went over to help Aleece with the babies so Rex Jr. could study. She was already exhausted from the triplet routine and I came over so she could go to bed for awhile. We were feeding the babies when Aleece commented that Zachary was lethargic and not drinking all his bottle and had a runny nose and congestion. We discussed whether or not she should take him to the doctor's office. She was frustrated because the pediatrician assigned to the babies in the NICU was only to see the babies for one follow-up visit. She had been trying to get Oregon Health Plan to assign a permanent pediatrician for quite awhile, only to be told that she had to wait until the babies were born first. There was a doctor assigned at last but she doesn't begin her practice until the end of March!
She called to find out who to take Zach to and was told that no other doctors had openings and to take him to the emergency room and it's been enough days and enough layered drama since then that I believe Aleece was told over the phone to remove Seth and Madison from the home beings they still were sick with the same bad virus that Rex Jr. picked up from the hospital which quickly spread to Aleece, Seth, and Madison while the babies were still in the NICU. The part that just fries Rex Sr. and me is that every doctor and nurse that treated those triplets knew they were sending them home with sick siblings and Aleece was still sick. In my day no baby was released from the hospital until everyone at home was healthy. Aleece said that the insurance wouldn't pay for the extra days in the hospital. Well, that was incredibly stupid because now they're paying triple for it. Read on and you'll see for yourself. She was told that it was imperative that we had to fight cross-contamination between the boys and to wash hands between touching or holding.
Rex Jr. and I stayed with Seth, Madison, Alex and Riley. Rex arranged for Jana Kemball to take Seth and Maddy. Good woman! She was willing to bring sick children into her home overnight. I took care of the other two babies and spent the night because Rex Jr. couldn't miss the final day of classes before finals when all the pertinent information is given for the final exams.
Aleece left for the emergency room around 12:30pm that afternoon. She called several times to let us know the progress. Zach was tested for RSV (for those of you like me who have no idea what that is, it's a common cold or flu bug for us but a killer of preemies). The test came back positive. The doctor said that he has three strikes against him. 1. Preemie. 2. Low birth weight. 3. Getting sick so soon after birth.
Then things went slow/fast. The slow part was Salem Hospital. The fast part was how rapidly ill Zach became. The next scary part was that he began having apnea (breathing stopped). The apnea progressed to the point where an on-call NICU nurse came to the emergency room and sat beside Zach to stimulate him with each apnea spell. The spells occurred every thirty seconds to two minutes. Poor Aleece was watching her baby turn blue. Rex Jr. went to the hospital to administer to Zach and I called Rex Sr. to meet him over there after work. They were able to give the baby a priesthood blessing and we were assured that Zachary would get better. It was decided to transport Zachary to Legacy Emmanuel Hospital in Portland who was sending down an ambulance. That procedure took many, many hours. Aleece and Rex Jr. came home to pack and he drove her back to the hospital to go up with the ambulance which finally left the ER at around 3:00am Thursday. Rex Jr. came home before that and helped me with the 1:00am feeding and then he went to bed to catch some sleep before school. I got to bed about an hour later only to hear Riley cry around 4:45am wanting to eat. I don't know how these kids (Rex Jr. and Aleece) have been doing this. It's non-stop and a ton of work.
Aleece called during the feeding to give an update. Zachary had been intubated (breathing tube down his throat) and was medicated, had more IVs and hooked up to more machines than at birth, which was a lot. Remember I said that she was exhausted when I got there Wednesday morning. She didn't get any sleep all Wednesday evening and finally got some sleep Thursday evening.
In the meanwhile, she was concerned about Alex and Riley, wanting us to make sure they weren't showing any signs of RSV. It didn't take long for those signs to appear in Alex. She set up an appointment for those two in Salem at the Primary Health Care office at 3:00pm on Thursday. Rex Sr. came over around noonish and started helping me with disinfecting the house. He was vacuuming, spraying alcohol and wiping down things with Pine Sol.
I have a hard time being on time for anything. Complicate that with trying to get two preemies fed, changed, in car seats, a diaper bag packed (I forgot baby wipes but got just about everything else in the house packed) get myself changed, whilst the phone was ringing, doing laundry, and a WIC lady delivering supplies. Aleece said if we were more than ten minutes late they would turn us away. Talk about pressure! I was running about a half-hour late of the organized schedule I had planned to be there early, when an angel arrived in the form of Sanna Mitton. I am emotional in the first place. Now multiply that with such a life-and-death situation and I'm a puddle of tears. At first I told Sanna she wasn't needed, other than to call the Relief Society president to update her on Zach being in the hospital. But then I remembered I hadn't written a note to Rex Jr. to let him know when he returned from school (within the hour) that we were at the doctor's office. See, Rex and Aleece have a borrowed cell phone, which was with Aleece. Rex Sr. and I don't have a cell phone. So we were communicating the 80's way--land lines! A cell phone would have saved a lot of grief later on that day. So I asked Sanna to stay at the house to tell Rex Jr. where we were. A note would have worked, but I was running late. As it was we got to the office with two minutes to spare before being turned away. Let me add my frustration again at the awkward layout of Salem and how difficult it is to go from north to south in this town. I so love being in West Salem where you can get to the hospital in about six to eight minutes, as long as it's not during rush hour.
Back to the monologue: at the office visit, the doctor checked out both boys and heard that Alex sounded junky in his lungs. I told her Alex was lethargic in his eating but I found ways to keep him awake long enough to drink all of his bottle (changing the diaper mid way through the feeding and pulling the bottle in and out of his mouth so he starts sucking, talking to him, calling his name, moving gently so he doesn't throw up). She put a skinny, long cotton swab probe into each boys' sinus for the RSV test. Within a few minutes of the probe Riley (who I was holding) started turning blue around his mouth. She took him to the examination table and stimulated him but he remained blue. She called in a nurse with oxygen and was on the phone with the doctor up at Legacy who was treating Zachary who ordered him to be transported to the ER. The EMTs showed up quickly and worked on Riley, giving him oxygen a bit away from his little face because the pressure's too intense for an infant up close. They hauled him away and we followed afterwards.
I asked the nurse to please call Aleece and let her know what was happening. I found out later that she didn't get a hold of Aleece.
Rex Sr. and I took Alex over the two blocks to the ER. The receptionist left and then returned and with a reprimanding tone said, "He's all alone back there! Why is he alone?" I said I have one of his triplet brothers here with me, and his third brother is up at Legacy Emmanuel. She had a few teeth missing and had a vodka and cigarette voice. I could show her how to be a better receptionist if I had some time.
I went in with the boys while Rex arranged for parking. There's rarely parking available at the Salem ER. Another gripe. Sorry, but it's so frustrating. We've been there countless times through the years and it's the same story. You walk into that ER and you can smell the germs. Why aren't visitors required to wash their hands and wear masks? The room is filthy and people leave their trash everywhere. I'm becoming Michael Jackson! Yikes!
Okay, back to the story. The ER staff weighed Riley and put him in a heated bed and hooked him up to monitors and Dr. Hare was entertaining and delightful. One EMT explained how fierce RSV is on preemies. He said that an adults bronchial tubes are as big around as the circumference of your thumb, but a preemie's is as big around as the size of the point of a ball point pen. He said that the mucus amount is the same for both adult and baby and very difficult for a preemie to expel the mucus through such tiny tubes. Dr. Hare said that preemies prone to have apnea spells and that they can be alarming. To watch these two kids go through this with their triplets is something else. They are certainly all being tested and are getting experienced in Life 101.
Rex Jr. arrived at his home to find Jessica, who had replaced Sanna. Thanks, Sanna, for folding the clothes while you waited. It was so kind and thoughtful of you! He had picked up the older kids from the Kemballs and sent them with Jessica to our home where Lacey was home from school sick with the same bad virus. Lacey, bless her heart, took care of the munchkins. So our house was designated as the sick house.
Rex Jr. showed up at the hospital. I can't count how many nurses and staff members poked their heads in to say that they either had helped with Zach the night before or had heard there were preemies in the ER. Rex Sr. loves to boast about the boys and tell the stories. I, am not so generous. I was getting a little agitated about all those germs coming into the room. Believe me, everything that touched those boys was washed when we got home. And yes, we were sent home after only a few hours in the ER. Once the RSV tests came back negative and Riley's color returned and remained normal we were discharged.
We took the babies home and Rex Jr. stopped at the store on the way home. I decided to let Rex Jr. call and let Aleece know the good news, that the boys were RSV negative. She had been contacted by the doctor up at Emmanuel and told that Riley had stopped breathing and that was the last she had heard. So she was upset that no one had called her to update her. Another reason to get a cell phone.
So we got the babies settled down in their beds and Rex Sr. and Rex Jr. administered to Alex and Riley. We left Rex Jr. to tend to them so that we could go take care of sick Seth and Madison and Lacey at our house. They were in bed when we got home and we said goodnight to them and we went to bed. Rex Sr. didn't get much of a day off. He has worked some long hours these past few weeks, with a special sale, and helping out at both homes. We've been over to the kids' home practically every day this last week since all three boys arrived home. Rex Sr. is very upset that the hospital released the babies so soon.
Now for Friday's events: after getting a 3/4's night sleep I had energy and got the kids fed and dressed for the day. I called Aleece up in Portland and at first was going to offer to drive up and bring back some milk with the antibodies for the RSV for the other two babies but then decided to bring her down so she could be with her four other babies and lend her a car to take back with her.
It was a comedy of errors on my part. We had bought new car seats for Seth and Madison and I had to figure out how to adjust them to their sizes and install them properly in the car. Let me just say that I did quite well until the third time trying to thread the seat belt through the narrow opening in the back of Madison's car seat. I cut both hands in the process. It took much longer than I wanted it to and at one point I said aloud, "Some man invented this contraption! A woman would never make this so complicated! Why isn't there a seat belt extension already installed in those seats so that you just click your seat belt with the male end and then the other end of the extension to the female side? That would be too easy!!!!!!!! At least they make it easier these days to adjust the straps. Back when my kids were little it was one long strap that went over the shoulders down through the crotch, back behind the chair and you had to be a rocket scientist to get it in the right order and the correct slots.
After about an hour and a half of getting the car seats set up, getting the DVD player hooked up and the DVD cleaned so it didn't skip all the way to Portland and back so the kids could watch a movie, we were ready to go. I made them a lunch (way to break in the car seats, Sharon!) and off we went.
We found the hospital, found Aleece and I got to go see Zach for a few minutes. I am attaching his photo. He is swollen with fluids from the IVs. He looks fat and pudgy. Aleece said that when they rotate him his eye touching closest to the bed will be swollen with fluid and it's rather frightening. He did look at me and respond to my touch. He's so adorable. I just cry to think that he's going through so much.
I sat with the children in the play room while Aleece gathered up her belongings. That was an experience. A grandmother started telling me about her granddaughter, six months of age, who was in the room next to Zach, who has undergone many surgeries so far and was in a drug induced coma. A Hispanic gang of children (five) were not being supervised well by their sleeping father. They ganged up against my grand kids a couple of times and I intervened. I never liked playgrounds for that very reason with my own children. The father woke up and chewed out his children a few times and then they started getting along better.
We drove back to Rex Jr. and Aleece's home and I called Lacey to come pick me up. That meant I had to MOVE the CAR SEATS from the van to the Alero. In the meantime Seth found a garter snake in the garage while I was cleaning out the van. I hate snakes but it was a dead looking skinny thing. Well, it turned out to be an alive skinny thing. Chills are going up my spine just writing this! Aleece came and saved the day. She killed it and moved it to the burn pile.
Aleece took out the straps in Seth's chair which he didn't need and adjusted Madison's chair. I installed window shades, and moved the DVD player to the Alero. That took another 30 minutes or more to get it all shifted over. We went home. I gave everyone juice and my energy ran out shortly after that. Rex Sr. called to ask what to get at the store and he arrived home about 90 minutes later. I told him he was on duty and I was off. I went to bed.
At 8:30pm Aleece called from home saying the ambulance was there to transport Alex to the ER. She had been pumping her milk in the nursery when Alex turned blue. She yelled at Rex Jr. to come. He ran back and revived Alex. He had several episodes of apnea and was showing signs of RSV. She wanted me to meet her at the hospital. Then she said to wait and she'd call me once she got there. Rex Jr. went in the ambulance and she was bringing Riley in the van.
I decided to go ahead and go down. I got the kids in bed and asked Rex to come with me. I called Aleece again and she hadn't left yet. I told her we were headed down to the ER.
We arrived but waited for over an hour. There was a different receptionist on duty who said she'd let them know we were there.
Before we we admitted back to see the babies, we sat in the ER room next to another Hispanic family with out of control children. More of them came out of the bathroom and when I realized we had taken their seats we moved to another spot. That's when we sat next to a girl from West Salem High School who knows Lacey. After not being called back I went up to the desk and the receptionist asked when the mother was going to arrive. She showed me the phone and I called Aleece at home and she was still there. She had been on the phone with Rex Jr., her parents, her brother and had the baby in the car ready to go but couldn't get off the phone. She arrived about fifteen minutes later and we went on back with her. The receptionist said we could go in with her. I looked at her like there's no way you were going to stop me if it wasn't alright.
I told Rex Jr. we had been waiting for an hour and he said, "Really? I didn't know you were here." Grrrh. Dang receptionist!
Alex was under the warming lights, stripped down to his diaper and hooked up to heart and respiratory monitors. Riley was in his car seat covered with a blanket and we kept checking on him. The kids were starving. They asked for a boxed lunch. I didn't know you could do that in the ER. Sure enough, they were brought food to eat! Rex Jr. had made Aleece a beautiful spaghetti dinner with all the trimmings while Aleece was tending to the babies at home before all this started, so their dinner was left at home while they came to the hospital.
To see an infant stop breathing repeatedly is heart wrenching. To watch it go on and on is humbling. Someone had to be vigilant. There's no alarm on the respiratory machine that Alex was hooked up to so we had to watch his chest rise and fall. When it stopped, someone had to tickle his side or rub his chest and at times pick up a limb, call his name. The intesity of his episodes grew.
Aleece fed Alex and he drank down some caffeine to stimulate him enough to stay awake and remember to breathe. It didn't seem to make any difference. The EMTs were coming down from Legacy to take Alex up to be with Zach.
Aleece started to feed Riley when he started turning blue. Here's the incredible thing. He only did it once. It was enough to get the doctors' attention and another ambulance sent down for him (only one can ride in there with all the equipment that goes with it). Rex Sr. and Aleece both agree and I've seen it with mine own eyes several times now, these boys are connected and support and encourage one another. If you pick up one boy the other one grunts as though he's being lifted up. They communicate and listen to one another breathe. Aleece said that Riley did what he had to do to be with his brothers. This way they're all in the same hospital now.
Rex Jr. rode in the ambulance with Alex. Aleece followed Riley's ambulance in the van. Alex had the same team of EMTs that transported Zach two days before. Rex Jr. arrived back home at 5:00am this morning. He has finals next week so we're going to let him study and be alone for that. We will keep the oldest two over here and Aleece is staying and rooming in up at Emmanuel. There is a room that holds ten adults where she sleeps and the hospital provides her with food.
I called Aleece a bit ago and here's the latest:
Zach was extubated (tube taken out) and put on a CPAP machine last night. He didn't do well with it. His chest sinks down too low so they have taken him off the CPAP and intubated him again. They think he's getting pnemonia.
Alex is doing well. He's intubated. Riley is doing great. Riley and Alex are in a room separate from Zach.
Aleece stayed up until 6:00am. She's pumping now and then is going down for a nap. When she awakens she is going to set up a website where anyone interested can check on the boy's conditions with a password. I'll let you know when she gives me the information for the website.
In the meantime, thanks for reading all the way through this. Sorry it is so long, but there was a lot to relay.
Velada (sorry if I spelled it wrong!) put the boys' names on the prayer roll in the temple (thanks bunches for that!) We appreciate any prayers on their behalf.
Sharon












































2 comments:

Archambault Family said...

Oh my gosh Sharon. I am so sorry to hear the whole family is going through so much. What can I do to help? Do you need me to take one of the kids or come down and help? My heart goes out to you guys. I feel bad for the babies. They are in good hads though at Emanual. They will get better. Please let me know if I can help in anyway.

Thanks for the update.

White Family said...

Thanks, Amber, for your kind thoughts and words. I really appreciate you. I don't want you getting any RSV germs from our house to spread to Addison. Babies are suseptible for up to 24 months and this is a nasty strain. Aleece said it was the sickest she's ever been in her life. So, don't come near...for your sake and your baby's. We will get through this with the help from Heavenly Father. He really is in charge and loves us all as only a Father can.
Aunt Sharon