Well, I have enjoyed reflecting on our experience. It certainly isn’t something I’d like everyone to have but I realize that many have endured similar and more trying experiences. Donna spoke with one of our doctors as we left ICU and she indicated that they were really worried at the start that Caitlyn wasn’t going to make it. That worry seems so far away to us now.
Lessons learned: infectious diseases can knock you for a loop, Donna is an amazing woman, Caitlyn is a strong young woman, prayers work, friends and family are great supports, the technology used in the medical field is amazing, the medical personnel are fantastic.
Thanks, again, for all those who prayed, made food, shovelled, sent $, visited, watched out for Tanner and Jessica, and in any other way supported us. We’re glad we are home.
Now what can I muse about … How about a diet in the new year? 
Make it a great day,
jrh
We are on our way home; got the honourable discharge earlier today. Caitlyn is excited.
Jrh
For the past week Caitlyn has been weened off all of her wires. No more IVs, no more Oxygen, etc. Yesterday Donna and I were weened off our numbers and we’re suffering withdrawals. Those who have spent time in an ICU with your child or parent remember watching heart rates, oxygen rates, CO2 rates, breathing rates, blood pressure, and more. You get addicted to watching and knowing what the numbers mean and when you have good numbers and when you have dangerous numbers. The nurses and doctors warn you not to concern yourself with the numbers but you don’t listen to them and are vigilant at ensuring that the medical team knows when numbers go awry. It’s all about the numbers. Yesterday we lost our numbers. The weekend pediatrician ordered that Caitlyn get off the monitors so now the wire that used to connect Caitlyn to provide us with our numbers just dangles tantalizing behind her bed. We miss the numbers. So much so, in fact, that when Donna took Caitlyn walking yesterday she hooked up the portable number provider as she was concerned with her heart rate when she was walking (number addiction). Alyson, one of the nurses, knew of the order and saw Donna’s relapse and called her on it (in a good way). AND she told the pediatrician, too, so when he came by for visits Donna was scolded a bit. I laughed when I heard the story as I can relate to the number dependency. I wonder if there is an official group established to help us with our number dependency
Clinically Caitlyn is improving, number-wise the medical team are happy to get her off numbers, leads one to believe that home is not too far away. You can never look too far ahead, I’ve learned, but signs are there.
In life I think we get depending on lots of things. Numbers, food, TV, etc. One thing that we’ve found you can depend on is friends. We sure appreciate all our friends for your thoughts, and prayers, and generosity, and visits. I guess we can also depend on God as we feel that through yours and our prayers He has helped Caitlyn in her recovery.
Make it a great day!
jrh
Today was a good day for Caitlyn. I talked about no strings attached and today all but one came off. The only one left is just to monitor her blood oxygen and heart rate both of which are doing ok. One of our past nurses, Jenn the Ripper we call her, came to help in removing some chest tube bandages … again …. They also removed the IV line in Caitlyn’s right foot. She had been scheduled for an EKG today, too, but that was canceled. Things progressed well today now we just have to touch wood and hope tomorrow to be the same. The weekend pediatrician also did not order any xrays tomorrow or Monday so things must be progressing as the doctors want.
Kolton and his family, from Taber came to visit today and he brought the coolest, cutest, softest hippo I’ve ever seen. Caitlyn couldn’t squeeze him enough (the hippo not Kolton). We had a good visit; Caitlyn stayed up longer than she has for a month. It was good to see. She was exhausted tonight and is in a nice deep sleep. I wonder which way we’ll be going tomorrow. I think up.
jrh
It was a nice relaxing day opening presents and enjoying each other’s company. Santa was good to all. Thanks to all who sent presents to us and to Caitlyn. They are much appreciated.
Caitlyn’s x-ray was better today – we had it before 9:00 a.m. this morning. Her heart has been jumping up a bit faster than they would like so she gets to have an EKG tomorrow. Let’s hope that doesn’t show anything. We are all getting a bit tired of the hospital.
Tanner and I attended the Ronald Macdonald House Christmas supper tonight. Turkey and all the fixings. It was courtesy of the Carswell family who were in attendance. There are countless examples of people in the community who support the House or support the children’s hospital in some way. We made some plates for Donna and Jessica who had stayed with Caitlyn in the hospital.
I hope all had a good day today.
jrh
We wish you all a Merry Christmas and a Happy New Year. We wish you lots of health, a bit of wealth and lots of opportunities to spend time with those you love.
Caitlyn has had a good night; she has slept for most of it and she’s still sleeping. Santa filled her stocking and hung it on an IV pole – nice touch Santa. I’m anxious to have the other kids show up and open gifts. Caitlyn loves being the gift giver and we’ll have her do the same today I think. Yesterday her x-ray wasn’t the greatest so they tried a diuretic to see if the fluid on her lungs would be reabsorbed. Now that would be a great Christmas gift.
Many of the patients on the ward were given passes to go home for Christmas so the nursing staff had an easier night. Our nurse only had Caitlyn to care for. So, our nurse, Joanne, saw a bunch of our unwrapped presents lying in the procedure room and asked if she could wrap a couple. Usually that’s a late night Christmas Eve activity for Donna and I. We were grateful that 3 nursing elves actually wrapped all our gifts for us. There must be some skill transference between bandaging wounds and wrapping presents as they did a great job.
jrh
Christmas Eve day and we are settling in for a long winter’s stay. Caitlyn certainly has improved in 3 weeks and a couple days but there is still a ways to go. Her x-ray today looked as though there were still some fluid in both lungs especially the left one. The air pockets seems to have gone away. The surgeons figure drying her out with some drugs is the way to go so we’ll try that today and hopefully see a change in x-rays tomorrow.
Caitlyn has developed a fetish for warm blankets. They, like most hospitals, have a blanket warmer that keeps fesh clean blankets nice and warm. Well, anytime Caitlyn is made to do something, x-rays, field trips, bandage removal, etc, she requests a warm blanket. One day she must have used 10 warm blankets. We’re already trying to figure out how we’ll replicate the service. We’ve heard Merle Norman have toys you can stuff with microwaved beanbags; might be an option. Otherwise, it will be lots of action for our clothes dryer.
Many of you will never have heard of a Code Blue – I hadn’t. Apparently there are hospital codes that, when called through the intercom, mean special things. (Code Red, You can’t handle the truth comes to mind – Tanner!) A code blue means that an adult needs resuscitation usually from a cardiac arrest (notice the link – had to look it up). So, … insert story …. All is well, everyone is fine, now, but experiencing a code blue first hand was quite an experience.
Wishing all a Merry Christmas and best of the season.
jrh
I missed writing last night. I left the hospital at 11 and did some work on courses for next semester and forgot. It doesn’t, however, mean that it was an uneventful day. Yesterday Caitlyn’s left chest tube came out. The night before Caitlyn had complained a bit about that side but we didn’t think much of it. When Jasmine, Donna and I got back from an xray (after lunch I think) and Jasmine turned the suction back on the chest tube we all heard a funny sucking sound. Jasmine was quick to look at the chest tube and she got a funny look on her face. She quickly turned off the suction, looked again, got another funny face and told us that she thought that the tube had come out. She called the doctor who came quickly and, sure enough, the tube had come out on it’s own. This isn’t something that is supposed to happen but I think it wasn’t supported or we hadn’t supported it enough in our walks. Of course there was immediate reaction with the pediatrician and everyone else involved. They were worried about air pockets and fluid not draining. We had 3 or 4 xrays yesterday and with all of them it didn’t seem as though her lungs were getting worse. So, they determined to watch it over night and xray this morning to see what was going on. This morning we were excited to see that her lungs had actually improved over night and the air and fluid had diminished slightly. So, no new tube! Woo Hoo. Today when the doctor came to see her she even talked about giving us a day pass to go to Ronald Macdonald house for awhile on Friday. Things are improving!
Yesterday we had another monumental accomplishment: Caitlyn’s hair got combed through. If you have long hair you know how you get snarls over night (Darryl and I wouldn’t know about things like that.) Well, compound that over 3 weeks of lying in bed. The back of Caitlyn’s hair was a bit wild to say the least. So, shampoo, cream rinse, Johnson’s hair detangler (Thanks Aunt Nurae), Clair, Donna, and an hour straight of detangling and Caitlyn’s hair was snarl-less. One of the nurses had said that they had seen something like that before and that the people ended up just cutting out the hair. Apparently the Johnson’s hair detangler is the ticket.
Today when the surgeon who would have to put in a new tube (which we didn’t need) came to give us the NO TUBE news, he wanted to look at the bandages around the two holes. Earlier Jennifer had indicated that today was the day that we should address those bandages. If you know Caitlyn, you know that she does NOT like when someone takes bandages off. Now we’re So, when the surgeon was here they went to work. There were 3 sets of bandages that had been taped up and dated. They took all three off in a matter of a few minutes and redressed two of them. Caitlyn was not impressed but at least the dressings have been changed. I didn’t get a change to look at the holes but I’m sure the tubes left a mark.
Jessica and Tanner arrived today and it was great to see them. Lots of treats and presents traveled with them – thanks to all who were thinking of us. We bought our traditional Christmas Eve’s supper and are looking forward to a unique Christmas experience. It’s been a bit difficult to get into the Christmas spirit of giving. However, we have felt lots of gifts given to us by people who Caitlyn has touched. Each day we have “opened” wonderful gifts of well wishes offered by friends and family. Today was a good example when Rhonda, one of Caitlyn’s former assistants, stopped by for a visit. Thanks, again, for your wonderful gifts.
Today was an interesting day. While Donna was out doing a bit of Christmas shopping, I got to hang out with Caitlyn. She did some coloring, played dominos, watched a bit of TV, went on a field trip to get an x-ray, sat in her wheel chair waiting for the physio folks, went on another field trip to the Activity Centre, (Donna got home about here) blew noise makers and windmills, went on another field trip to get another (grrr) echocardiogram (don’t get us started), and back to the room. Amidst all of this we had resident doctors stopping by with their stethoscopes, respiratory techs checking oxygen and fluids, hospital life workers inviting us for Polar Express and popcorn. I can see why Caitlyn gets tired. She has been a trooper this whole time and tolerates a whole lot.
As I have often posted we have been blessed to have great staff looking after us. Claire would be an example of this. She exemplifies, in my opinion, the traits of a great healthcare worker. She cares and you can tell she cares. Caitlyn likes her. Donna said that when Claire was out of the room helping other patients, Caitlyn asked for her. She is kind. She does her job well and ensures that we know what she is doing. She asks us if we have questions or suggestions. She works with us in coming up with a plan for her shift with Caitlyn. She looks for ways to improve Caitlyn’s health and her comfort. When Caitlyn’s blood number was FINALLY where we wanted it today, you could tell she was excited. This is after only one shift with her. We’re looking forward to having her work with us tomorrow.
Home for Christmas is not likely at this point. However, Jessica and Tanner are coming up to spend Christmas with us here at Ronald Macdonald house. It’s a great spot and there are lots of fun things planned.
So, as I said earlier we were able to get a room at the Ronald Macdonald house here in Calgary. It’s across the street from the hospital and I can’t say enough good stuff about it. Great rooms, resources, kitchen, staff, etc. I stayed late to let Donna sleep a bit at the hospital so just got back in. The House is decorated beautifully so it does feel like home. If we do have to be here over Christmas, this will be a great spot to be.
Now about staying for Christmas … Caitlyn is doing her darndest to get out of here. She went on 3, maybe 4, walks today. The last one she did much of it on her own. She is feeling stronger, her heart rate is good, her oxygen saturation is good, and she is eating ok. She is careful, when we get her out to walk, that we don’t mess with her “oxygen” and she typically wants a change of gown when she gets back. The normal ward is quite different than ICU. In ICU you are babied and if you even think that you need the nurse, they show up. In ICU we got to use nice big plastic cups (beer cups) but in the ward we have been downgraded to small paper cups. Also, in the ward the nurses have tons of other patients that they need to check in on. In ICU, each nurse had one patient. So, we are adjusting to doing more of Caitlyn’s care ourselves and when you think about it, it’s as it should be. We’ll be taking her home eventually and need to be comfortable with the care she needs.
Tonight they took the suction off her chest tube and are monitoring the drainage. If not much has drained, there is a good chance that she gets the tube clamped and then removed later tomorrow. Then, if all goes well, they’ll also remove the IV line in her foot (just there in case at present). Who knows, best case scenario she will also lose the oxgyen tomorrow, too. Then she will, like Pinocchio, be without strings.
We’ve had so many ups and downs that we’re ready for great things tomorrow but also ready for more challenges. Again, thanks for the prayers and well wishes from all.