Wednesday, March 21, 2012

The Doolots and the Terrible, Horrible, No Good, Very Bad Week!

One of my husband's favorite books growing up was "Alexander and the Terrible, Horrible, No Good, Very Bad Day" by Judith Viorst. I keep seeing the title in my head and I think it describes last week pretty well - it was terrible, horrible, no good and very bad.

It started Tuesday afternoon. Jake came home from school and seemed like he was in a good mood. He went into the playroom and was content watching a Wiggles Video. Emmett was actually happily playing as well and Mamie and I were feeding Millie and Ruby. At one point it seemed a little quiet to me, but Mamie said she had peeked in the playroom at Jake and he was watching the video. About 15 minutes after that I had to go into the playroom to change Ruby's diaper. I looked at Jake and he was lying on the floor with his face close to the DVD player. He does that a lot - sticks his face up close but on second glance I noticed that his head was deviated, his right arm, hand, and mouth were twitching. I flipped him over and he looked very pale and his lips were blue. He was breathing in gaspy breaths. Not knowing how long he had been having a seizure, I waited a few minutes to observe then gave him diastat (rectal valium). I have only ever had to give Jake one injection, but after 6 minutes things had not improved. Mamie (thinking more clearly than I was) thought to hook Jake up to the pulse ox machine that we have for Ruby. I took it off Ruby's foot and put it on Jake's thumb. He was satting in the 50's and 60's (90 to 100 is normal). I called 911. It was a harrowing 10 minutes waiting for the ambulance. I debated giving Jake some rescue breaths but the 911 operator said not to if he was breathing (in retrospect I should have given him rescue breaths). The paramedics had to help Jake breathe the entire way to the Children's Hospital, but right about the time we got there he started breathing normally on his own again. He was pretty out of it since I had given him 2 doses of Valium, but he did react to pain and tried to push them away when they were trying to get an IV in. At that point we had to wait for Jake to wake up before we could go home which took another 8 hours or so. We got discharged at midnight. They did start Jake on Depakote. It's an old seizure medicine and not used as much now because liver function has to be monitored, but a good short term med until we can see the neurosurgeon. Jake has done well over the past week since his seizure. He seems to be tolerating the Depakote pretty well, so I'm praying we will not have another episode like last week and that we can discuss more options when we see the surgeon in April.

When we were sent home from the hospital with Ruby's pulse ox, the Oxygen company gave us two probes to attach to the monitor to use for the month. The first probe didn't seem to work well after a few days, so we had already moved onto the second probe. That is the probe that went to the hospital with Jake, and I guess they took it off because we didn't come home with it. We had someone staying with us to help with the girls that night and she told me the next morning that the old probe had stopped working during the night. I didn't think too much of it, because Ruby has been doing so well. I did call the Oxygen company but they said that insurance only pays for 2 probes/month. I said I would try the old probe again, but I couldn't find where our sitter had put it. That night Ruby was very fussy and did not eat well all night. Thursday morning she did take most of her bottle, then at 10 she vomited after only taking an ounce of formula. We stopped feeding her and she didn't look good to me. She looked pale and just "not right." I called the MD and they said to come on in. I started thinking that she really didn't look good and that I should check her sats. Mamie found the old probe and we hooked her up. It said she was satting in the 60 and 70's. It seemed accurate to me based on how she looked, so I called 911. I couldn't risk putting her in the car and I knew she needed oxygen right away. There was a disaster with the fire truck and ambulance getting to our house. Apparently there was a tree trimming truck taking up over half the street. The fire truck had to run over the truck's cones to get by and when the ambulance tried to do the same it got stuck half off the street. They had to get out and walk down the street to our house. The firemen were able to start giving Ruby oxygen until the paramedics could get there. They called a second ambulance to take us in and the first one had to be towed. Ruby seemed fine in the ambulance on just a little oxygen, but when we got to Vandy and they tried taking her off the O2, then she started dropping her sats again. We were admitted and had some tests run, but the only thing they could find was reflux on her swallow study and some abnormal labs indicating a viral infection. She was discharged Friday night and seems to be doing well at home. We are monitoring her all the time for now. The O2 company brought us two new probes at 10:00 Friday night.

I have so many thoughts about this past week, but I am not sure I can even talk about my feelings around it yet. It was enough to get the details out. Maybe I can write about it later. Thanks to all my neighbors that reported the tree company to the police. Not sure they really listened because they were back blocking the street again today, but after several of us called the police they moved.

On a happier note.....Pictures!

 Ruby in the hospital.

 Back home with O2 sats at 100%!

First time outside with Jake!

Wednesday, March 7, 2012

Welcome Home Ruby!

Ruby came home yesterday! She was discharged with a pulse oximeter to wear while she was eating. They first tried to send her home on an apnea monitor which was terrible. She doesn't have apnea, so it didn't make any sense, and she had to wear these electrodes on a belt around her waist. The false alarm kept going off when the electrodes would slip, and it was so loud and obnoxious that I felt like we were causing hearing damage. I had to spend the night with her in the hospital to show that I knew how to use the monitor. I won't go into how ridiculous this was, but it's the rule and I did it. In a way it was good because I was able to tell them we didn't need the apnea monitor and the MD agreed, and we just came home with the pulse ox. She is still desatting some, but it is not bad and she doesn't do it every feed.

One day in and so far so good. I'm trying to get the girls on the same schedule which is working, although when by myself I feed one first then the next. It is still taking them 30 to 40 minutes each to eat, so I feel like my day is feed, burp, change repeat. Emmett hasn't paid them much attention but he is acting out so I know it is affecting him. One day he will thank me for giving him sisters, right?

Jake is off his seizure medicine. Small episode/seizure at school Monday morning but otherwise ok. We have an appointment with the neurosurgeon in April to explore surgical options to treat seizures. He just doesn't do well on medication. Hoping and praying for the best until then.

Together after 89 days in the hospital. 

They look so much alike now that we can really put them side to side. 

I love this one because Millie (on left) seems to be saying "what, I thought I was the only one and now I have to share?" and Ruby (on right) is happy to be home.

Saturday, March 3, 2012

One week home and where is Ruby?

We've had a great first week home with Millie. She is so precious and seems to wake up a little more each day. She is not always making it 4 hours to eat anymore, but that's ok. Ruby is still on a 4 hour schedule in the NICU, so we'll have to work on getting them on the same schedule when Ruby gets home. Speaking of Ruby.......we thought we would get to bring her home yesterday, but she has continued to desat (drop her oxygen) off/on throughout the week when eating. It's not really when eating, but when we are burping her or after eating. She always brings herself back up without intervention, but we'd like her to not do that at all. It seems to be getting better. Two weeks ago she was dropping into the 40's and 50's, and this week she has just been dropping to the 70's and 80's. The MD said yesterday that we should be able to bring her home this coming week, and if they have to then they will send her home on a monitor. I can't wait to see the girls together. Millie was 6 lbs 4 oz at the pediatrician last Wednesday and Ruby was 6 lbs yesterday! I love seeing their fat cheeks.

Emmett is starting to figure out that "the baby" is staying. She is out of sight out of mind most of the time, exact when I'm feeding her or holding her and Emmett wants "UP!" He has also been taking her bottles and pacifiers and running away with them. Having two home is really going to rock his world.

Jake has been on the new seizure medicine two weeks now. He seems more irritable - not quite as bad as when he was on Vimpat, but he's on such a low dose that I worry about increasing. He has also had three weird events (maybe I already mentioned this) where he wants to fall asleep suddenly, and he gets very fussy. He can't keep his eyes open, and this has happened at random times in the middle of the day. Twice he went on to sleep for several hours, and then vomited later which makes me think it was some type of seizure. Very odd to me that in the three weeks that Jake was off medication he was happier and had no seizures. Now that he is back on medication he is having problems again. Seems like an easy answer - just take him off medication, but the neurologists are telling us that this will lead to worse and worse uncontrollable seizures. I think it may be worth the risk though, because it is heartbreaking when he is crying and crying and can't tell you what it is that is bothering him. Yesterday morning I was lying in bed with him at 5:45 am trying to buy us a few more minutes before actually getting up. He was so aggravated and kept reaching back to pinch me. I find myself getting angry because it hurts and when he screams it wakes up Emmett, but Jake has no other way to communicate what he is feeling at those times.

To leave you on a happy is Millie happy to be home.