Mama Needs A Vacate

Today we took Isaac to his first GI appointment and on the way there we got rear ended at a stoplight! Thankfully we are all OK and the back end wasn't banged up too bad. It did definitely rattle us a little and my home nurse is now experiencing some back pain. When we arrived at the appointment, the doc said that they didn't have any of Isaac's medical records that the Pediatricians office was supposed to send them 3 weeks ago. We had to explain Isaac's medical history in a nutshell. Yeah...umm....that was easy.

I've been a little disheartened lately about Isaac's last hospital stay. I know I didn't want to talk about it last week, but there was a major med error that was the fault of the Doctor. I know that people are human and make mistakes, but it makes me feel uneasy about taking him there anymore. I felt better after talking to the nurse manager yesterday. I also talked to her about some other issues that I've had in the past with previous admits. As always, I expect that my sweet boy to gets nothing less than quality care.

This weekend my husband and I are planning on getting away......just the two of us. I'm SO looking forward to it! Please pray that Isaac behaves himself this week. His oxygen requirements are a little higher than normal, but hopefully he's just having one of those days.

Home Report

Sorry it took me so long to update. I've been frazzled lately due a hospital error that was made during this last stay. I would rather not go into it right now or my blood pressure might go up. I have spent most of the afternoon typing up a letter to the nurse manager.

Isaac got home yesterday afternoon and is doing good. His lungs are really not that great, but nothing we can't deal with here at home. They never really found out what was causing the fever or high heart rate, but they sent him home on antibiotics.....he hasn't had a fever since. We are planning on making the most of Easter with the little man. My mother-in-law Carolyn just had knee surgery, so she will be spending Easter in a rehab facility. We were visiting her and Isaac in the hospital at the same time! She's had a rough road lately so please keep her in your thoughts and prayers.

Have a wonderful weekend and a Happy Easter!!

Home And Still A Mystery

It was a very short stay......only 2 1/2 days and they found absolutely nothing. We still don't know why he needs so much oxygen at night and only needs room air to 1/2 a liter during the day. The hospital shrugged their shoulders, gave us a pat on the back and sent us home on antibiotics. For what I wonder...they didn't find a source of infection.

I moved the Pulmonologist appointment up so that I can discuss the benefit of bi-pap at night. First and foremost we have to make sure that their isn't a structural thing going on and so we are going to proceed with the bronchoscopy on Monday. He will be put under anesthesia, so pray for smooth sailing. The procedure will be at noon. Thanks again for the prayers and the nice comments. You're awesome!

-Colleen

We Have Been Here.....

Yes, we have been in the hospital since yesterday. After troubleshooting the oxygen concentrator, we discovered that it's working just fine and that it actually is HIM. Doesn't he look fabulous? That's what we can't understand!

Here's how it went.....on a typical night Isaac needs 1-2 liters of humidified oxygen while sleeping to maintain an oxygen saturation level of 92% and above. By the time the nurse arrived Monday night I had to crank him up to 8-9 liters of oxygen.....our concentrator only goes up to 10! So naturally we took him up to the ER Tuesday morning. When we got there his o2 sat levels were fine, his color was good, he was his sweet and happy self. Even though he looked good the doctor decided that 9 liters of oxygen was a little too high for comfort to send us on our way home. He was admitted yesterday afternoon for observation. By sleepy time they had to crank up that oxygen....so now we know it isn't just us or our oxygen concentrator.....So it is a mystery. The culture has come back so far as normal flora, which means no major infection is brewing. The chest xray isn't showing any kind of pneumonia.....It is a mystery.....Most likely he will come home within a couple of days......I will most likely postpone the scope that he has scheduled for Monday being that he would have to go under anesthesia.

Some people have suggested that we should look into using bi-pap support at night. I don't know if I want to go there right now....I feel as if this would be a step backwards....it's something to think about and I will be talking to Pulmonology. Thank you for your thoughts and prayers! Thanks Heidi for coming up and bringing me banana bread!

-Colleen

Home Tweet Home Tommorow

Isaac is doing real well and his oxygen requirements are down so the doctor said that he should be able to go home Wednesday on oral antibiotics. Yay! And I didn't even have to put on my mean face!

-Colleen

A Great Mother's Day And A Hospital Update

So today was a wonderful Mother's Day starting with a picnic at the park with my daughter and my mom. The weather was beautiful! Then we went up to the hospital to kiss the little man and make him smile.

Isaac's oxygen requirements are still higher than usual and he's still working on a round of IV antibiotics for this infection. There is still no plan for discharge at this point, but hopefully he can go home soon on oral antibiotics. I will really be pushing for that when I talk to the doctor tomorrow, even if I have to put on my mean face. (:

The first couple of days there he seemed like his usual happy self, but we could tell by tonight that he's starting to feel a little restless by not being around his usual routine. He sometimes gets overstimulated there by the lights and noise so he doesn't sleep very well. Poor baby.

Isaac is aware more than ever of his "people"so it's been nice to have Daddy, Grandma (my mom) and Aunt Cassie take turns visiting him when I need a small break. Aunt Cassie works in the ER, so she's been able to peak in on him once and awhile on her lunch breaks. He also has Lynn, his favorite home nurse checking in on him too. I called her tonight and she's going up there first thing in the morning to give him one of his head to toe massages, not only because it will make him feel better, but because the IV steroids are causing him to swell up, so this will hopefully help relieve some of the extra fluid that he is retaining. I really don't like seeing him look like that.

So that is all I have to report today.......Thank you so much for your continued prayers and the nice comments on our blog.

-Colleen

Tired Mama

So Lynn and I went up to the ER this morning hoping to just get a chest xray done and then be on our way home, but since Isaac had such an increase in his 02 last night they decided to admit him overnight. Well after getting upstairs the cultures came back from his trach and the doctor decided to keep him for possibly a couple more days on IV antibiotics. Although it's never fun to go to the hospital, it was nice to see some familiar faces who had not seen Isaac in awhile. All of the nurses couldn't believe how much he had grown since our last admit in September. Anyway, right now I am going to bed because I didn't get very much sleep last night because I was so worried about Isaac, then I was at the hospital for 11 hours. Whew! I'm hoping that soon I can get this email subscription figured out so that I can program it for people to get notifications on the same day and not the next day. Bare with me, I will figure it out someday, but for now......yawn......sleepy time.

-Colleen

Going To The Hospital

Hi, we are going up to the hospital this morning right after I take my daughter to school. Isaac's effort is increasing and he needed up to 10 liters of 02 while he was sleeping last night. I don't know if we will be admitted, they may just do a evaluation on him and a chest xray...I will keep everyone posted. This is unfamiliar territory as Isaac hasn't been there since September. Thanks for the prayers!!

-Colleen