Day 12 at CMH ... FRUSTRATED!

Okay here is my warning..... if you rather prefer not a negative post you might want to stop reading :)

Today has been more then frustrating in every possible way. I know there will be days that are good and then some that are not but I am just about ready to have this day over and start with tomorrow. So you can expect me to vent today...

We started today by Connor and I being woken up by two nurses telling Connor to take deep breaths over and over again. I got up and looked at the machine and his oxygen levels read 84. He started crying and said he wanted to go back to sleep so we lifted him up into a sitting position. He really got upset but his oxygen levels right away went up to 91. Connor however can't sleep sitting up so we decided to start our day early.

The cafeteria was still closed so we improvised and made some of Connor's favorite 'Banana Soup' which entails, smashed Bananas, Peanut Butter and Milk. Kind of like a shake but thicker. We then got up and went for a 'walk' in the wheelchair around the hospital. This lasted until it was time for Connor's second and my first breakfast at 7 AM when the Cafeteria opened up.

Until here everything was still okay ... he was not feeling his best but also not his worst yet.

By about 9 AM we realized his speech was getting almost unrecognizable even to Ron and I. He said he was hungry but could not eat anything we put in front of him. No Pudding, Yogurt, or even ice cream was tempting to him. He complained about his tummy being hot and that it was hurting him.

We saw the Doctor team of Dr. Miller around 10:30 AM and were informed that we should still be released by Wednesday and that they will lay a pic-line (sp) tomorrow. His blood levels seemed stable that they feel comfortable for us to fly home and start treatments there about twice a week with physical therapy at least three times a week. If everything works as planned we should have in-home care for the treatments.

Here I have to give a huge THANK YOU to Jennie who has done all the leg work for us to be prepared for any care and treatments and Doctors we will encounter when we get back. She must have typed about 10 pages or more of information for us and I think we would completely feel lost at this point like coming home with a new born for the first time......

There are so many more people to Thank so please don't think I am leaving anyone out! I will get back to this when we are home!

So Connor has been very whiny and complained about headaches and his neck hurting. We finally figured out it was not his neck but his throat that gave him troubles. He also refused to walk at all today and did not even want to walk to the Nurses Station which is just about outside of our room door.

By the afternoon he finally asked for some McDonald's Ice Cream and he wanted an Oreo Cookie. So we got it for him and he ate up both and said he loved it. He even sounded better in his voice for a while. We went back to the room since we got a page to meet with an NET (Nose Ear and Throat) Doctor. She told us they were going to schedule him getting a little camera down his nose so they could look at his vocal cords to see if one might be paralyzed or if they were inflamed. In order to have this done we were not to give him anything to eat or drink. This was about 4 PM and Connor was not suppose to eat after 6 PM.

Waiting for Connor after the ENT left was the Physical Therapist. From here on out everything went downhill fast...

She tried to move his feet and legs which hurts him horrible. She then wanted him to sit up, which he can't do. She kept pushing and pushing and finally Connor threw up the little food he had in him, which of course was ice cream and the Oreo cookie.

She left and Connor cried telling us now he was hungry again. We could not give him any food since he was suppose to have the camera for his throat so we tried to calm him down.

Ron and I were siting there brainstorming why he was so miserable all day when we wondered about the last time he got his pain meds. So Ron went to the nurse station and was told that he was not on pain medication anymore starting this last Saturday. Well, if we add everything up then Connor started backsliding in his progress starting Saturday!!!

We told her we wanted some Tylenol for him and she said she has to check with the doctor but that they won't schedule it anymore but give it as needed. She then walked into the room and asked Connor if he was in pain and needed pain medication....

This is were I got very very annoyed.... How do you think a 5 year old will articulate that 'yes' I am in pain and could you please give me pain medication before it gets out of hand?

We told her he needs some now so she went and got it.

How can I explain to you what happened within one hour? He calmed down, asked us to go for a walk and when he found out he did not need to have his throat checked he went all out eating some broth with crackers, some mashed potatoes with gravy and chocolate pudding. He was smiles again and even joking with the nurses.

So then we get a call at 4:40 PM telling us because of how he was feeling all day they don't think setting a pic-line (sp) will be a good idea because he would need a sedation and they don't want to give him one. We will now go home with nothing and he will be hooked on an IV again when we do get home.

I know it sounds childish but I was so counting on getting this port in before we got home! It would have made everything so much easier but I do realize it won't all be perfect.

We also feel nervous being send home without a guide yet as what we need to watch out for in regards to his oxygen levels dropping at night and his still having problems swallowing. We always feel more comforted when talking to Dr. Pachman and Dr. Curran so we hope we get to talk to them before we head home.

Our boys, especially Connor can not wait to go home. He cried about missing Tasha for almost 30 minutes.

Alexander I think will miss all the attention he is getting here. Today he went out for lunch again with Erin and Peter, both as mentioned before work on Dr. Pachman's Research team and who are just amazing in taking care of Alexander.

So and I am talking for my husband here was well but I can NOT wait to sleep in our bed again!

On another note, Ron and I traded shifts since I am not a big fan of being here when Connor gets his blood taken every two days and for some wicked reason I was 'on duty' this morning....

Connor also got a new Room Mate, Grant, who has arthritis and had a very bad reaction to a new drug he was given. This is by far the worst part about this hospital... seeing little kids in pain.

So, as you see I was not to happy today BUT as always I will finish on a good note :)

THANK YOU to all of you for your continuous and never tiring support!

Everyone that has thought about us, send the most precious e-mails, FB messages and voice messages... you are the angels that carry us and keep us focused on what matters. There are so many of you that have gone to work (emotionally & physically) to help out while we were gone and also to prepare for our arrival at home..... I wish I could put into words how loved this makes us feel.

So as it looks we should get released on Wednesday afternoon. We most likely won't get a flight out that day so should arrive in Denver sometime Thursday morning. According to Dr. Miller we will need to come back for a check up in one month.

Hugs,

R A C A