Sunday morning update

Today's goal is to get him off the oxygen so he can get out of the PICU and onto a regular floor. He stayed on 0.5 liters all night and did not desat. When I came in this morning he sounds a little junky like he needed to be suctioned. He also has developed a rash on his right cheek, lip, down his neck, and on his abdomen. The PICU doctor agrees that it looks like cold sores. They are going to start him on meds for that. I feel bad he gets it from me. I remember getting my 1st cold sore when I was 4 or 5. My mom gets them...then me...and now Ava and Jacob. They always show up when your body is stressed. I had them nearly nonstop once the babies were born and the weeks before. I always tried to be careful, but apparently they have been passed on :-(

Memories

Today I am having a lot of anxiety. We decided to walk to the other end of the PICU to look at the view. You can see Tampa Bay from the window. Most of the doors are open and you can see the patients. Before we even got to the window you could hear the noise. It sounds like a yard sprinkler head ticking very fast.Jack and I look to the left and there lay a baby probably around a year old or less laying in bed intubated and swollen and attached to a high frequency ventilator. My heart just wanted to hit the floor. His/her parents were sitting on the couch. Knowing the raw emotions they must be having at that time just broke my heart. Parents should never have to worry if their child is going to live or die. There is an older girl across the room from Jacob. She is trached and so is the baby down the hall from him. The girl looks profoundly handicapped. I hear their ventilators making noise all day...I used to be able to tell you what every noise on the ventilator meant.....seems so long ago that I to had a child dependent on those machines....542 days ago to be exact.

Praising God that Jacob is not that sick....probably not even sick enough to be in the PICU. Just having to sleep in a Ronald McDonald House, hearing the vents go off, dealing with Jacob being on oxygen, and fearing that the next time he aspirated could be his last breath has my nerves all over the place. I can't sleep and I want to stress eat all day. That is not working out very well at the moment since I am spending my car payment money just to get by while we are here. Oh and the helicopter landing all the time does not help either.

To push all my sad stories aside I have someone I would like those who read to add to your prayer list. Her name is Brandi. She is actually Christine's cousin. She is a patient at the mother baby hospital here. She is 27 weeks pregnant with a little girl. Her membranes have been ruptured for a few days. To top it off they found out yesterday that SHE HAS 2 BRAIN TUMORS! They are pushing her to deliver the baby so they can operate on her brain. Today she is 27 weeks 4 days. I went and visited with her today and listen to her talk to the neurologist. I showed her pictures of my 28 week babies and told her their story. They "guaranteed" her that the baby would be okay.
I love to believe that everyone has a happy ending, but you know I have a hard time with that these days. She is in denial that the baby may not live, that she may have special needs etc. I feel so bad that she has to be in this situation. She has a 9 year old and a 3 year old at home with her husband. She is 26. They are not sure that the tumor is cancer..and seem pretty optimistic that everything is going to be "okay". I have not talk to this person in years...honestly I really didn't like her....but people change. She appears to be a good person and a good mom. My heart aches for her. Hoping for the best for her.

I really don't like Ronald McDonald Houses. I don't know why they bother me so. I guess it is knowing that nearly every adult here has a child or family member in the hospital...some dying.  Pasted a mom on the way in tonight who appears not to have slept in days. She had a bag of clean laundry with NICU pillow covers...the white things that go on the body positions with the colored hearts all over. I have some serious NICU POST TRAUMATIC STRESS going on these days.

I feel like Jacob is back in the NICU right now. Trying to ween of oxygen again. The anticipation of going home and then he desats again. Today they had to up his oxygen to 2 liters again. I miss my other 2 babies!  Also the feeding thing...remember when your baby 1st started getting food? They would up it a few cc's at a time until they were on full feeds. That is what Jacob is doing right now. Every 6 hours they add 2 more oz until he gets to 8. The nurses keep him on his back a lot. I am afraid he will vomit when no one is around. So right now we are still trying to ween oxygen. They say his lungs sound good and we are trying to get him back to full feeds. Still don't regret my decision to have his tonsils out..I think it will benefit him in the long run...and for those who judge me...until you have stood in my shoes BACK OFF! WOW that was a lot to try on a cell phone touch screen lol

Another day in the PICU.

NO MORE ISSUES WITH RESPIRATORY DISTRESS IN THE LAST 24 HOURS. He is still on oxygen. They tried to ween him off last night but he desated. They are going to try and feed him today. He seems like he is in less pain. He is watching the movie Bolt right now.

Update

Jacob is still in the PICU. He only desats when he needs suctioning (this brings back major flash backs of Logan desating and getting suctioned). He has been sleeping a good part of the day. Jack and I left for a few hours to buy clean underwear and cloths :-). They have 3 Ronald McDonald's Houses here.1 of them is on the 1st floor of the doctors office part of the hospital. Totally awsome! They had an opening and we were able to get a room until Jacob goes home. It was nice to get a shower. Jack is at the RMH washing our other cloths. Andrew and Ava are home with Christine....unless my sister went and got them. Jacob is on an antibiotic called Zosyn...he has developed a rash to it. He is only on 1liter of oxygen right now. Sucks we can see the bay from the hospital window...wish we were on vacation at the beach instead of hanging out in the hospital. This has really scared me...I don't know if I need to push for the nissen to get done when he is better. I hate having to put him through pain...especially when some people already judge me for having his tonsils and adenoid out anyway since this was an "elective" procedure that has now landed us in the PICU...just thought maybe he would enjoy breathing through his nose instead of being congested and snorty all the time.

All Children's Hospital

Jacob had a decent night, but he has not slept well...mainly due to them running a bunch of tests. He is on a nasala canula at 2 liters. He is keeping his oxygen levels in the mid-90's. They are trying to ween his oxygen. They are giving him antibiotics for aspiration.

Major respiratory issues!

Trying fro my phone. Jacob had his tonsils and adenoid removed yesterday and he came home later that night. He was doing fairly well. He woke up in pain almost hourly last night. Today he spiked a fever and vomited around 2pm. Shortly after his breathing became very labored. I took him to the ER. He ended up requiring oxygen. After several hours he had vomited 4 more time. They found that he had aspirate into his left upper lobe of how lung. His oxygen levels dropped low. He ended up requiring a lot of oxygen and they almost had to intubate him. His carbon monoxide levels were elevated to 58 normal being 35-45. They said he had impending respiratory failure...they decided to transfer him to all children's hospital about an hour away. After 3 hours of continuous nebs and lots of functioning he stabilized. About 10 minutes ago we watched him lift off in the helicopter. We are driving to st. Pete now. He is on a nasal Canada now at 2 liters his oxygen was back in the 90's and his co2 is 34. He is going to be in the pediatric intensive care unit at all children's. Thanks for your prayers.

JACOB'S EYES AND SURGERY!

Jacob seen the low vision doctor on Friday. He had a really good appointment. I was told when he was1st seen there that he was so farsighted that he could not focus on anything. His last follow showed that his eyes had improved by about 40% and they cut his prescription almost in half. This appointment (about 5 months later...I think) I told the doctor I had not put the glasses on him in over a month because he cried and scratched his face up until he could get them off. It appeared to me that this prescriptions was no good for him and that he seen better without his glasses. He checked his eyes and HE AGREED. He says that this time his eye sight has improved another 50% from the last appointment. He said that he is still slightly farsighted, but no enough to need correction with glasses. SO NO MORE GLASSES FOR JACOB!

I was worried that they would take vision therapy from us...but the therapist seems to think we are okay. Even though the low vision doctor does not seem to think that Jacob has cortical visual impairment....I have the doctor that has been following him since the NICU that says he does...so if anything I have that on my side. I like the vision therapy...it is very similar to occupational therapy and she brings toys with switches that are very easy for him to operate.

Jacob has surgery tomorrow. We have to be there at 530 in the morning unless they call and tell us something different. I hope by having his tonsils and adenoids removed his overall health will start to improve. Hopefully he will be able to BREATH without difficulty again and start swallowing! Please keep us in your prayers. I will update everyone tomorrow on how the surgery goes.

On a side noted I have called Depart of Children and Family reguarding Jacob's medicaid status ATEAST 400 times...and this is no joke and have yet to get ahold of these people in the last 2 weeks. Any suggestions outside of all the evil thoughts in my head. :-) I can't even access the stuff online...keeps telling me the info is not correct and now that is locked out too. :-( My van is fixed :-) $350 later now just have to go get it from Groveland.