On Thursday we had appointments for Critter and Ruby. I brought my mom so I wouldn't have to carry Critter and Ruby at the same time. I am so thankful to have such a supportive mom. As we walked into the hospital she started getting "snow alerts" from Alta on her phone. It turned out to be a pretty sweet day up the canyon but she didn't even complain about being stuck in the hospital with me. When we got to clinic we weighed and did vital signs on both kids. Critter found some skeleton gloves before leaving the house and refused to take them off so we did the oxygen monitor on his toe instead. Once we were in our room we had the nurse, the doc, the bone marrow coordinator, the phlebotomy team (2 ladies) plus me, Critter, Ruby and my mom. It was packed. They drew a ton of blood from Critter through his line so no big deal then the phlebotomist drew a ton of blood from Ruby. They had to stick her 3 times to get all the blood. I held her binky and Critter sat on the table next to me and kissed her free hand. He kept saying "I love you Roobs" and " It's ok Roobs Just a little owie" then what got me is when he said "Your so brave Roobs." It’s all the encouraging things we say to him. It was really touching to see him care for her. You could tell he sympathized with her. He acted so much older than his age. It was really sweet. After clinic we went to the RTU and they put him out for a bone marrow aspirate, LP, hearing test and dental x-rays. Yep sedated for dental x-rays (he won’t sit still). They found that his chipped tooth was abscessing so they pulled it. Now he has a huge hole in his mouth. This picture is actually really good. He looks like he could be on the show Swamp People. I just keep telling myself...it's just a baby tooth....it will grow back. Oh well.
Monday we went for our Echo, Ekg and a neuropsych eval. Echo and EKG are all old hat. It did take Critter a little bit to settle down but eventually he did. The neuropsych eval was interesting. They are doing this eval to see if he is on track developmentally. I thought he was behind but he tested on average. They said considering how much time he has spent in the hospital he did really well. One thing that was really interesting was the doc asked him "Critter what color is grass?" I was sitting behind Critter and I shook my head. The doc asked again then looked at me and said he doesn't know his colors. I said well no but watch and I said Critter what colors are your lines. He lifted his shirt and said this one? I said "ya what color is that?" He said "Blue" I said "Right what color is the other one?" He said "Yellow" I said " Good."What color is blood?" He said "Red." I know he should know some colors by now and when we are at home I have been working on them, things like what color is this frog, or what color is your blanket. I didn't think he knew any colors but when the doc started asking about colors I realized that he just need things he is familiar with. The doc’s next question was "Critter what comes in a bottle?" He said "medicine." It was really interesting. He also did normal things like the doc showed him a pic of a fork and said what is that? Critter said "a fork" then pointed to the doc and said "You eat your dinner!" It was really funny. All in all I'm just glad he isn't way behind. Tomorrow is Ruby's clinic day. We meet for a history and physical and meet the bone marrow doc representing her. There has to be a doc representing the donor and a different doc representing the receiver. All in all things are going really well. Critter is happy and healthy at home. It’s a real bummer that we have to go back. Being home is so blissful!
We love being home. The first few days are always really tough. He has a lot of tempertantrums. Its really hard for him to adjust to being home. I'm not sure why except that I can't hold him all the time like I do at the hospital. He had a really hard time taking his oral meds when we got home. We really only had one day of taking them at the hospital before coming home and we were really forcing them down his throat. Once we got home he was still in a fair amount of pain and we were forcing his meds down his throat and it was pretty miserable. We think maybe we pushed a little too hard to come home another day in the hospital would have been a little better but oh well we are home and things are better now. He has 4 meds he takes every morning and night and as long as he has his sprite ( he calls it his coke) and a little time to talk himself into it he will take his meds.One of his meds he takes 4 times a day so it seems like I am always trying to get him to take something. He is really happy now at home. He gets tired if we do to much but he is pretty happy. He keeps telling me..."I'm happy I'm home mom" its really cute. I posted this picture because he watches Mickey Mouse Club House A LOT and Clara Bell the cow likes to make Moo Muffins. Critter wanted to make Moo Muffins so we made some muffins together. He is eating again and he is a pickey 2 year old but at least he is eating. I posted this picture to show how cute he used to be. We have tons of appointments to get ready for bone marrow. Yesterday we went to the dentist which turned into me and the dentist laying on him and prying his mouth open. He chipped a tooth last year and they are worried that during bone marrow transplant without an immune system he might have some kind of infection behind the tooth that will cause problems. They have decided to pull his tooth. I understand that it is the best decision I just think he will look a little funny. He is already bald! Now he will be missing his front tooth! So I wanted everyone to see a cute picture of him. I keep telling myself its just a baby tooth.
Well tomorrow is day 28 and we should be going home! They moved most of his meds to oral today and if he can take his oral meds we get to go home tomorrow!!! Home for valentines day!! I am so excited. This round has been harder than any other round ever has. His body has really taken a hit. Today is the first day he has even really walked for over two weeks, it has been hard to watch him go from a strong little boy to being so weak in such a short amount of time but we look forward to fattening him back up while he is home for the next three weeks.
I was thinking ( because rocking a sick child allows you the time to do that, think) about what I have learned during cancer and this is what I have come up with...
Faith is everything. Without it there is no hope.
You don't have to get dressed up to talk to the doctors. Medical decisions can be made just as you are. In your pjs, through a shower curtain, without make up, with out a bra on, with out your eyes open, with your mouth full, with morning breath, through tears and everything in between.
Chemo sucks! No if ands or buts about it.
Children are expensive.
One "I love you mommy" is worth all the money in the world.
The Lord will never leave you...even if he says nothing he is still there.
Patience, patience, patience.
It hurts as much to watch your children suffer as it does to suffer yourself.
If you schedule benadryl at nap time it makes nap time soooo much easier.
Sometimes the best medicine is for someone to just hold you and rock you to sleep.
Sometimes the soul will ache so much you think your heart will not be able to beat again. It is almost an insult to the soul that the heart keeps plodding along. It is then that you realize that they are two separate things bound for different worlds.
Sunshine and fresh air heal the soul.
Never judge anyone. You don't know what they might be enduring.
Everyone has faith shaking experiences. Recognize them and take your concerns to the Lord. If you don't turn to him there is nowhere else to go.
It's funny to hear people tell you you are strong when you know you are not.
You really can gain weight on carnation instant breakfast.
Well we found out that it is not the bad bug. It's a bad bug but if given a choice between the two we choose this one. It's a form of Ecoli. It is pretty resistant to antibiotics so if they can't get the infection under control they will still pull his line but so far he is fever free and all of his blood cultures are coming back clean so I think we are in the clear! I am soooo glad we can keep his line! It is a huge relief to know we won't be torturing him with regular IV lines.
I think we finally got his pain under control also. We switched his morphine to Dilotted, another narcotic pain killer that some people do better on. He sleeps most of the time but he doesn't seem like he is in as much pain. I didn't post any pictures because to be honest I don't have any. He looks awful! He is really swollen and drools all the time because he won't swallow. He doesn't even look like my little boy. Our goal for this week is to grow some white cells! Once we get whites back his body will heal. Monday is day 20 and usually we see cell growth on day 22 or 23 so I hope this week will be better.
Sick again. Well last weekend critter got a fever and it just went down hill from there. First problem: he has what they call mucocitis (I have no idea how to spell it) basically the chemo attacks all fast growing cells like the cells that line cheeks, throat, intestines, stomach everything between in and out. So he has sores in his mouth and all the way through his system. It causes a lot of pain. He wont swallow even his own spit and the sores secrete mucus so it's like the worst cotton mouth ever. He throws up gobs of mucusy spit and complains of stomach pain. Problem 2: he has had some diareah so they cultured it and he has C Diff. A bacterial infection in his intestines. This bug is common to people who spend a lot of time in the hospital and that have suppressed immune systems. It causes pain, diareah and fevers. More yuck. Problem 3: the most serious. They have found a bad bug in his blood. They know it is a gram negative bug but not the specific kind of gram neg bug. They are worried it is a certain kind of bug that adheres to plastic. This bug ( sorry it starts with an S and is very long so I can't even try to spell it) if he has it would live in his central line and every time they give anything through it it showers bacteria into his blood stream. The fix for this is to pull his central line. We would have to have regular IVs through the rest of this round and place another line before bone marrow. In short he is really sick! Sleeps a lot and when he is awake he is in pain. We started a morphine drip today and he will get blood and platelets today so I hope it will help. We gave him a blessing last night it was really special because he woke up for it and was calm and quiet through the whole thing. I am so thankful that I was blessed with such a good baby. Ruby is happy when I need cheering up and sleeping when I need to hold Critter. She is a miracle in so many ways. Usually when counts come back his body heals and our little Critter returns. We are counting the days. Hopefully sometime next week things will be looking up.But for right now he is completely miserable.