Matthew is learning to eat!

We've struggled with Matthew eating food for many months now. This past week; we have made huge strides. Last Thursday, he ate the best he ever has. Almost as if he never had an oral aversion. Sadly Thursday afternoon he got very sick again and was admitted to the hospital for 36 hours for evaluation. It was determined that he most likely was not sent home on strong enough antibiotics and his pneumonia started to come back. We changed up antibiotics and he is a happy camper. The happiest he's been in weeks. However, the feeding thing has gone a bit backwards. I'm also sad to report that when he was eating SOOO good (like 2 jars of food per meal with no problems) my camera batteries were dead. So no one was able to enjoy it but myself and his pediatrician; who happened to witness it while we were at her office. I did however learn to video it this time; even though it wasn't his best, because we don't know if he'll do it again! So here is a little video, for your viewing pleasure. It is very bumpy, because I was feeding, filming and positioning Matthew at the same time. But, you'll get the idea. And I hope in the days to come I have better video (I promise, I'll put him in his highchair next time!)

Pausing...

I'm going to take a break for a bit from blogging. I'm not sure how long. Our household is crazy busy right now. I'm not getting much sleep with Matthew being so agitated. I'm not in the right frame of mind to blog. I just wanted you to know all is well (other than the agitation) with Matthew. Signing off...

They say we're leaving!!!

Matthew had a bit of a rough night again, agitation wise...but the doctors feel his pneumonia is resolving itself and so will the agitation. Matthew has been off oxygen since late Saturday night, and his white count has decreased by half. We also noticed that he was most agitated when he was getting his IV antibiotics, and that since we've switched to oral antibiotics his agitation has decreased. We're ready to be in our own beds!! We are homeward bound!

We have some answers

Last night around 4:30 the doctor finally came around and took a look at Matthew. She said that even though his chest x-ray from Thursday didn't show pneumonia, every other clinical symptom he had pointed to pneumonia. Matthew's white count was very high (46 thousand) his breathing was rapid and he was requiring a good amount of oxygen to keep his blood level of oxygen in the normal range. The plan was to repeat his chest x-ray, more lab work and to do a CT scan. If he didn't have pneumonia, we needed to rule out a shunt infection. I knew in my heart he didn't have a shunt infection, but we had to figure out where the infection was coming from. The doctor called me about 1/2 hour after he got back from the chest x-ray and said that they found a huge pneumonia; and the reason it didn't show up the day before was probably because he was dehydrated. So they immediately started him on hew antibiotics and we are going to fight this bug.

I was also able to express some of my frustrations. The first doctor that we saw was a newer doctor and we were very unhappy with her care and demeanor. Thankfully the doctor that came in yesterday afternoon is one of our favorite doctors here and she was able to quickly make some important decisions for Matthew. I feel so much better about what is being done for Matthew. I will be even happier, though, when we can leave this place. I'm ready to be home and be in my own bed with our own schedule.

And the going home time frame will all depend on Matthew. He will need to not be dependant on oxygen and then we can switch his antibiotics to oral form and he'll be able to go home. I'm hoping for tomorrow, but I don't feel like that is realistic. Realistically, if we have no further complications, I can see us going home Monday. We're praying for a quick recovery!

From now on out it will be wait and see..but I will try to keep you all updated!

Back again....

Just a quick post to let you all know that Matthew is very sick (again) and back in the hospital. We came yesterday afternoon by ambulance. I don't have a lot of answers and we're unsure of what is wrong. This stay so far has been VERY frustrating to me and I am close to my breaking point. There has been a huge lack of communication and initiating of plan of care for Matthew and we're not sure exactly what is causing him to be so sick. I will update when I know more

We're outta here!!....

That's what the doctors are telling us! Matthew did not require a sedative last night (although we got close; they even called the doctor and got the order), so we think he is slowly showing progress. The doctor today (who is one of our favorites up here) said to expect for him to still be sick for another week (!!!!!!!!). Yikes. Matthew has not opened his eyes since Wednesday. That's a long time. But, I can care for him just as well at home. They are going to send us home with a sedative just in case we need it. So while, he is not "well" yet, they believe the worst is over. The doctor said "see you next time"; and I said "I wish we could say;' see you never again', but I guess I should be a realist" and he just smiled and nodded. Sigh. I guess that is our new normal. At least they have wonderful doctors taking care of us. So we are packing. We are going. Thank you Jesus for allowing to me to take my son home! That was a scary couple of days.

Today's update

Matthew seemed to have a better day and evening yesterday. He mainly slept the whole day; awakening for just an hour or so around supper time. He seems to just out of nowhere spike fevers. Not just any old fever; but like 103 degrees. We are trying to keep him comfortable with Tylenol and ibuprofen. He was also up and semi-agitated around midnight last night; but I was able to calm him and get him back to sleep. He woke me up again around 4 am very agitated; breathing fast and with a high fever. We tried everything, rocking him, snuggling him, bringing him in my bed to snuggle, nothing could get him out of this agitated state. So we again had to give him something to help sedate him. That worked like a charm and he was able to sleep the rest of the night. I'm very reluctant to keep giving him sedatives; but we at this point don't feel like we have a choice. He is so agitated that he is unable to get the rest he needs. All his muscles are stiff and he just wants to sleep as stiff as a board with his back arched. It really is getting tiring to watch your baby keep fighting with this. He seems to sleep better during the day; but night-time is our enemy. The doctors just keep saying that with time, he will get better. I will be glad when this is behind us!

On the home front: Steve still is sick with the flu and Mason has also caught it. As of this morning he says he is feeling better than yesterday; but it seems as if this virus is tricky like that. It makes you think you are better and then side-swipes you again. Megan is currently the lone-ranger; she is the only one who has not fell victim. I'm praying she stays well and that Steve and Mason continue to be on the mend. I have almost fully (other than an occasional irritating cough)recovered from it. I am left with a smaller appetite (that's not a bad thing) and some low energy; but feel strong enough to do all the things I need to.

Matthew's therapist sent us this verse yesterday and it is hanging over his bed:

"We also pray that you will be strengthened with all His glorious power so you will have all the endurance and patience you need. May you be filled with joy.." Colossians 1:11

Thank you so much to everyone who's praying, offering to help our family, and supporting us. It is a helpless feeling situation but we appreciate everything! Continue to pray for Matthew's body to be strong and fight this nasty bug!